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#273416 - 02/27/16 12:54 AM Cosentyx
EricHampton Offline
Registered Visitor

Registered: 10/13/11
Posts: 50
Hi guys,

I am HLA-B27- and have failed Enbrel, Humira, Remicade, Simponi ARIA, Cimzia, and Stelara. I also gave Xeljanz a shot but noticed side effects right away which lead me to discontinue use. I have had AS for 10 years affecting my Lumbar/Cervical spine, enthesisitis in all my large joints, and limited involvement in my sacral area. I am presently taking pain meds and low dose Sulfasalazine, combined with a low starch diet. I get good insurance back again in April and would like to give Cosentyx a shot. I have not seen much about it here and was wondering who is taking this med. I am especially interested in those who have not had any response to the Anti TNF's. I am also interested in Otezla(Apremilast) however since i failed Stelara, i am less optimistic about this one. Please let me know if you guys have anything to add.

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#273457 - 03/03/16 04:30 PM Re: Cosentyx [Re: EricHampton]
mpc2012 Offline
Registered Visitor

Registered: 03/15/09
Posts: 316
I am about to switch from Enbrel to Cosentyx to see if it helps. I will let you know as soon as I start it and give it some time to work. It has been approved for AS and is suppose to be more advanced than Enbrel or Humara.

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#273529 - 03/09/16 08:25 PM Re: Cosentyx [Re: EricHampton]
EricHampton Offline
Registered Visitor

Registered: 10/13/11
Posts: 50
Thanks I am hoping that my rheumatologist will allow me to give it a shot. I am looking forward to hearing how it has helped you.

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#273739 - 03/25/16 12:04 PM Re: Cosentyx [Re: EricHampton]
sarahr28 Offline
Registered Visitor

Registered: 02/13/15
Posts: 4
Loc: Rochester, MN
I have failed almost all of the drugs you listed too. I started on Cosentyx on January 4th. I took the starter pack which included a 150mg shot weekly for five weeks, then every four weeks after. At about weeks 3-4 I was feeling pretty good. Very hopeful. Then as I had to spread out my injections by four weeks, I felt no difference. I believe I've had a total of 6 (or 7) shots. I'm still hanging onto hope that it will start working better because the studies show that results can continue happening for up to a year according to my Rheumatologist. I see him again next week. I'm discouraged at this point.
_________________________
39 year old female. AS. HLA-B27+. Diagnosed March 2013 (Though chronic pain started a few years before that). Unresponsive to many TNF-Inhibitors (Enbrel, Humira, Cimizia, Stelara, Otezla, etc.) Steroid dependent. Began Cosentyx January 2016, minimal results so far.

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#273753 - 03/27/16 09:54 AM Re: Cosentyx [Re: EricHampton]
Kelly669_107 Offline
Registered Visitor

Registered: 10/19/14
Posts: 31
Loc: Delco PA
I just received my first injection last week. While Simponi worked wonders at first, if wore off-despite getting approval for injections every 3 weeks instead of every month. I didn't see any relief from Humira, and switched back to Simponi after about 4 months. Combined that with leflunomide but stopped taking this after 5 months due to way too many side effects(including hair loss, skin growths-on my face no less-, stomach issues, and congestion).

I'm hopeful about Cosentyx since it's the only biological out there that is not an Anti TNF, but have had nothing but bad experiences with Novartis in trying to get my next shipment. I hope there customer service as the drug gains momentum. Their incoming calls show up as no caller id available, the hotline sends you in circles, and it's been difficult to get in touch with a real-person. Am hoping this will get better as the official approval comes through with my insurance company, but am beginning to question moving over.

Will provide updates as I can since Cosentyx is new to all of us, and the best recommendations come from the actual users! With any luck, I'll receive my next shipment in time to take as scheduled!
_________________________
46 year old female
HLA-B27 positive
Fusing SI joint, spinal calcification, stenosis
Simponi, prednisone (still trying to get off-but it works so well), folic acid, leflunemide (don't think it's working)

Been on but didn't work or had bad side effects: sulfasalizine, Humera, methotrexate

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#273937 - 04/09/16 07:11 AM Re: Cosentyx [Re: EricHampton]
Kelly669_107 Offline
Registered Visitor

Registered: 10/19/14
Posts: 31
Loc: Delco PA
Update on the Cosentyx.
Took third shot on April 5. Thought I was feeling a little better and bumped prednisone back to 40 mg from 60 mg for two days. Paid the price yesterday and am back up to 60.
Was so hopeful that this would start working sooner, but am willing to wait atleast until I finish the first 5 weeks.....meanwhile, still riding the prednisone crazy train ride.....its just too much for me to take.....so irritable, not sleeping and feel like I'm not in my own body......
Bad flare-ups suck.

I'll step down now😜

Still hoping to see more posts from Cosentyx patients! Would love to know how others are making out.
_________________________
46 year old female
HLA-B27 positive
Fusing SI joint, spinal calcification, stenosis
Simponi, prednisone (still trying to get off-but it works so well), folic acid, leflunemide (don't think it's working)

Been on but didn't work or had bad side effects: sulfasalizine, Humera, methotrexate

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#273938 - 04/09/16 07:13 AM Re: Cosentyx [Re: sarahr28]
Kelly669_107 Offline
Registered Visitor

Registered: 10/19/14
Posts: 31
Loc: Delco PA
Hi Sarah,
Any updates on how you're making out with the Cosentyx? I want to be hopeful, but not there yet after three injections😁
Thanks!
_________________________
46 year old female
HLA-B27 positive
Fusing SI joint, spinal calcification, stenosis
Simponi, prednisone (still trying to get off-but it works so well), folic acid, leflunemide (don't think it's working)

Been on but didn't work or had bad side effects: sulfasalizine, Humera, methotrexate

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#273965 - 04/12/16 12:19 PM Re: Cosentyx [Re: EricHampton]
sarahr28 Offline
Registered Visitor

Registered: 02/13/15
Posts: 4
Loc: Rochester, MN
Hi, Kelly,

I'm not seeing any amazing improvements either. My doctor just agreed to double the dose and try that for two more months. I take that dose next Tuesday. I'll let you know how it goes. I've been through the starter pack and two more months. Prednisone seems to be my only hope too, sadly.

Sarah
_________________________
39 year old female. AS. HLA-B27+. Diagnosed March 2013 (Though chronic pain started a few years before that). Unresponsive to many TNF-Inhibitors (Enbrel, Humira, Cimizia, Stelara, Otezla, etc.) Steroid dependent. Began Cosentyx January 2016, minimal results so far.

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#274135 - 04/21/16 06:26 AM Re: Cosentyx [Re: EricHampton]
EricHampton Offline
Registered Visitor

Registered: 10/13/11
Posts: 50
Hi guys. My rheumy agreed that it made the most sense to try cosentyx. CVS specialty called me 3 weeks ago and told me two days to get there and I still haven't gotten it. I called doctor's office a couple of times and last week got called into sign form for their patient assistance program or their version of one. I wish I could have done that when I was at the doctor's office 3 weeks ago. I am trying to be hopeful as it would not have gotten this far if it did not offer a significant benefit to many people. This one might actually be better for spondylitis unlike the IL- 23 drugs which work on the skin better then they do for AS. Anyway should be here soon I hope. It is really hard to be optimistic when I have failed everything but painkillers and steroids. Is there a difference between Methylpred and normal pred steroids?

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#274181 - 04/24/16 09:23 PM Re: Cosentyx [Re: EricHampton]
Kelly669_107 Offline
Registered Visitor

Registered: 10/19/14
Posts: 31
Loc: Delco PA
Hi Sarah,
Ugh, was hoping for better news. However, all the information I've seen regarding results from the studies were at the 4 month mark_but I was hoping for something by now, as I just finished the 5th started dose. Interesting that you and your doctor have decided to double the dose-even more surprising that your insurance company is paying for it! Even the prednisone is not doing as much as I'd like t the moment ;-(. Thanks for letting us all know how you're making out!
_________________________
46 year old female
HLA-B27 positive
Fusing SI joint, spinal calcification, stenosis
Simponi, prednisone (still trying to get off-but it works so well), folic acid, leflunemide (don't think it's working)

Been on but didn't work or had bad side effects: sulfasalizine, Humera, methotrexate

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#274182 - 04/24/16 09:33 PM Re: Cosentyx [Re: EricHampton]
Kelly669_107 Offline
Registered Visitor

Registered: 10/19/14
Posts: 31
Loc: Delco PA
Hi Eric,
I hope you finally got your shipment. As per my previous posts, I've not been happy with the Cosentyx patient program at all-again, I think the drug is still so new they just don't have their acts together yet-hopefully they'll get there. I know I was the first in my rheumy's office to go on it, so it took a few weeks for me to get my first shipment via the Novartis patient care program. I received a letter last week stating that my insurance had approved the meds and will now get them via my specialty Pharm via mail order.

Regarding the steroids, I don't know much other than my rheumy's told me that some people repos better to one over the other. I didn't seem to respond too well to the methyl-prednisone packs, I tend to do better on the regular prednisone. That's all I got on that. Good luck, and keep us posted on how you make out..
_________________________
46 year old female
HLA-B27 positive
Fusing SI joint, spinal calcification, stenosis
Simponi, prednisone (still trying to get off-but it works so well), folic acid, leflunemide (don't think it's working)

Been on but didn't work or had bad side effects: sulfasalizine, Humera, methotrexate

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#274183 - 04/24/16 10:05 PM Re: Cosentyx [Re: EricHampton]
Banana Offline
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Registered: 07/23/06
Posts: 6499
Loc: New York
If the biological alone isn't enough, you might be like me and need either MTX or Arava. None of them alone, were enough. Even Humira weekly, I still needed an additional DMARD. Has no doctor mentioned that?


Also because I had the disease for many years untreated, when I start a new med they gave me a taper dose of steriods to help the new med start to work.

Anna
_________________________
Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.

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#274186 - 04/25/16 03:05 AM Re: Cosentyx [Re: EricHampton]
Shippingnews Offline
Registered Visitor

Registered: 10/11/15
Posts: 371
Hi Banana,

Whats MTX? Methotrexate?
Are you on weekly Humira?, I am planning to take this route in a month. Waiting on my blood work before I double the dose. Hopefully it will work for me.



Edited by Shippingnews (04/25/16 03:05 AM)
_________________________
Male, early 30s. AS diagnosed Sep 2015. HLAB27+
Current medicines: Omeprazole, Vit D3, Celecoxib(1 tab)/Zorvolex(2 tabs)(alternatimg between these two every week), Pyridoxine, Isoniazid, MTX(3 tab) every wednesday, on humira every two weeks since Dec 2015, Weekly Humira since June 18th 2016
On cosentyx 300mg a month since Dec '16

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#274221 - 04/27/16 02:22 AM Re: Cosentyx [Re: EricHampton]
EricHampton Offline
Registered Visitor

Registered: 10/13/11
Posts: 50
Thanks for info. Yes MTX is methotrexate. Guessing it may take a few weeks to get here then. I feel like it has been out long enough that I would expect to see more people talking about their experience with Cosentyx. I guess we are the unlucky few who don't respond to biologics or respond well. If it doesn't end up working maybe worth giving Actema a shot. I can't do Arava it made me so sick I was puking and didn't recover for a while. Not saying it's not helpful to some but staying away from MTX. I have a lot of gut issues since losing my gallbladder so that might be why those drugs even Sulfa makes me sick. Will post as soon as i have more info

Eric

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#274285 - 05/01/16 11:38 AM Re: Cosentyx [Re: EricHampton]
Kelly669_107 Offline
Registered Visitor

Registered: 10/19/14
Posts: 31
Loc: Delco PA
Hi all,
Yes, i have tried a variety of DMARDs. I started with sulfasalizine, which worked wonders, but I was in the lucky 2% who suffered from constant headaches as a side effect. I then when to MTX which, unfortunately I saw no improvement on. Most recently I was on leflunomide, but between the hair falling out in clumps diarrhea after 4months ( the thinking is that should have gone away after a few weeks) and skin growths on my face, I decided the side effects were worse than than the pros. In retrospect, I'm wondering if it was doing more good than I thought. Right after I went off, I had (and am still having) the worst flare ever.

After the first 5 loading doses of the Cosentyx, 4 weeks of 60mg of prednisone, 2 weeks now at 40mg, and no improvement (just all the bad effects of prednisone, and I mean ALL), I've made the decision to stop the Cosentyx and move to Remicade. I hemmend and hawed about what to do here. We all know we should give the biologcs 3-4 months to really tell if they're working, but I am currently the only patient in my Rheumy's practice on the drug, so they can't really tell me what to expect as they don't have experience with it yet. The approval process took over 1 month, so all told it's been 10 weeks since I went of the leflunomide, and need some relief. I do know that I did feel some relief after only one week of my first Simponi injection, so I'm hoping that I'll see results more quickly, as Simponi and Remicade are sister drugs.

Perhaps I've given up too soon, but am on the verge of not being able to function both physically and mentally, and am so irritable and tired from not being able to sleep (and ALL the other horrible side effects of the prednisone, including a current BP of 158/100), that I think this was the best path forward for me.

I'll certainly still be following the posts about Cosentyx. I really wanted this to work for me, certainly better than having to sit for infusions, but..........
_________________________
46 year old female
HLA-B27 positive
Fusing SI joint, spinal calcification, stenosis
Simponi, prednisone (still trying to get off-but it works so well), folic acid, leflunemide (don't think it's working)

Been on but didn't work or had bad side effects: sulfasalizine, Humera, methotrexate

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#274326 - 05/03/16 04:02 PM Re: Cosentyx [Re: EricHampton]
sarahr28 Offline
Registered Visitor

Registered: 02/13/15
Posts: 4
Loc: Rochester, MN
I'm about to give up on Cosentyx too. I've been on it for 4 months with all the start up shots and then even last month, but Dr. doubled the nose. No real improvement. I think our next biologic (?) to try is Xeljanz. Meanwhile, I've started Cymbalta/Lyrica combo to help with pain, prescribed by a pain specialist. It's not getting to the root of the pain, but it is dulling it somewhat while working on my mood too. I'm pretty beaten down as I've been trying to find a med that works for over 3 years, changing every 3-4 months.
_________________________
39 year old female. AS. HLA-B27+. Diagnosed March 2013 (Though chronic pain started a few years before that). Unresponsive to many TNF-Inhibitors (Enbrel, Humira, Cimizia, Stelara, Otezla, etc.) Steroid dependent. Began Cosentyx January 2016, minimal results so far.

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#274349 - 05/04/16 09:15 PM Re: Cosentyx [Re: EricHampton]
Roccdeezy Offline
Registered Visitor

Registered: 03/29/16
Posts: 11
I'm glad to see the cosentyx is working for everyone! Maybe not working as well as we would like though! I stopped Humira to go on cosentyx as Humira was giving me issues with skin rash on my hands! The Humira was working wonders for my pain at the time and I thought I would be OK to stop Humira while waiting for the insurance to approve the cosentyx. Oh man did I pay the price for that! It took almost a month for my insurance to deny the cosentyx and then it took another month for the appeal and my insurance still denied me! I have premera blue cross and it's suppose to be pretty good insurance. Just as a precaution to everyone. The cosentyx is still really new for AS and the insurance companies aren't jumping up and down to pay for it. I'm going to try enbral now but I'm waiting for my insurance to approve it! It's been 3 months now since I quit taking Humira and the imflammation in my body is twice as high as it was before I started Humira in October 2014. It's mainly my rib cage that's killing me right now. I'm just happy to know there are others out there that I can relate to because sometimes I feel like people don't understand my pains and I feel like they think I just make this up. AS is horrible and I hope I find comfort with my new medicine.

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#274483 - 05/12/16 11:20 AM Re: Cosentyx [Re: sarahr28]
Kel0814 Offline
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Registered: 06/02/13
Posts: 12
Loc: KY
Hi Sarah- I have tried all the Biologics...no help. AS patients are 40% likely to NOT respond to biologics. I started Cosentyx last week, and have heard good things. Keep trying!!!

KS
39 year old female
diagnosed 6 yrs ago with AS
_________________________
Kel0814
Diagnosed in 2009 with AS, Female, age 39
Tried all the Biologics, started COSENTYX last week- here's hoping

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#274489 - 05/12/16 12:19 PM Re: Cosentyx [Re: EricHampton]
Kel0814 Offline
Registered Visitor

Registered: 06/02/13
Posts: 12
Loc: KY
I have just injected a second dose of Cosentyx- VERY hopeful. All Biologics (have tried Stelara, Simponi, Embrel Humira, Remicade..) have failed me thus far.
Will keep you all posted. (My sister has Psoriatic arthritis/Psoriasis, she started Cosentyx and by week 2 was basically symptom free and "cured" so doc has high hopes for me since we share the same genes.:)
_________________________
Kel0814
Diagnosed in 2009 with AS, Female, age 39
Tried all the Biologics, started COSENTYX last week- here's hoping

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#274490 - 05/12/16 12:30 PM Re: Cosentyx [Re: EricHampton]
EricHampton Offline
Registered Visitor

Registered: 10/13/11
Posts: 50
Sweet Kel those were the posts I was looking for literally expecting it in the mail today or this week so I'll call again to check. Hard to believe it's 40% when you read so many people responding to them. It made me very sad I did not let's just put it that way. Ugh dragging my self up class in 30 min with 35 min commute. GOOD LUCK!

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#274491 - 05/12/16 01:00 PM Re: Cosentyx [Re: Kel0814]
sdot Offline
Registered Visitor

Registered: 03/05/16
Posts: 406
Originally Posted By: Kel0814
Hi Sarah- I have tried all the Biologics...no help. AS patients are 40% likely to NOT respond to biologics. I started Cosentyx last week, and have heard good things. Keep trying!!!

KS
39 year old female
diagnosed 6 yrs ago with AS


40% eh? wow that is high. I just injected my second Simponi shot 5 minutes ago. I am hoping I respond to this, so far I think it's working.

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#274503 - 05/13/16 02:18 PM Re: Cosentyx [Re: EricHampton]
EricHampton Offline
Registered Visitor

Registered: 10/13/11
Posts: 50
It's like between 30% and 40% some respond very well and others just get some relief is how it is I think.

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#274504 - 05/13/16 03:29 PM Re: Cosentyx [Re: EricHampton]
SouthernMoss Offline
Registered Visitor

Registered: 03/12/13
Posts: 1756
Loc: MS
Quote:
AS patients are 40% likely to NOT respond to biologics

I think this statistic is based on old studies. Newer studies have found that the old studies didn't have a long enough followup period. The newer studies say that there is a positive response to biologics with regard to decreases in inflammation and bone formation once you get out past 2 years.

You also have to define what is meant by "respond". You can respond positively to biologics but still have pain and other symptoms. This does not necessarily mean that the biologic is not working but rather that there may be other factors at play, mainly existing damage. For example, if you have a bone spur pressing on a nerve, you can reduce your inflammation to zero and you will still have pain, because the bone spur is still there.
_________________________
Ginny - 56 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Indomethacin ER as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic

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#274507 - 05/13/16 05:48 PM Re: Cosentyx [Re: EricHampton]
EricHampton Offline
Registered Visitor

Registered: 10/13/11
Posts: 50
I believe that to be true however these drugs work by tricking our immune systems which is why they stop working for many and don't work at all for others. Also these drugs mainly work to reduce pain which I believe they do for many if not most who take them, but they don't slow down fusion. At least I don't think this has been shown in studies. It would make sense that they should slow down joint destruction though at least in peripheral joints reducing the need for joint replacement. I am unsure how joint destruction in the spine is related to fusion and wonder if they would slow down degenerative disc disease even if they don't slow the formation of bone spurs osteophytes and fusion.

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#274508 - 05/13/16 06:56 PM Re: Cosentyx [Re: EricHampton]
sdot Offline
Registered Visitor

Registered: 03/05/16
Posts: 406
If inflammation is the cause of the pain and destruction and the medicine stops the inflammation, then I can imagine it will be helpful in perhaps slowing down the disease that causes inflammation.

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#274510 - 05/13/16 09:40 PM Re: Cosentyx [Re: EricHampton]
EricHampton Offline
Registered Visitor

Registered: 10/13/11
Posts: 50
This disease is so complicated. That seems to make sense to me as well and they were really hoping this would be true but unfortunately studies do not show it slowing down fusion any just reducing pain. They also say that ddd and AS are two separate diseases even though the ddd is a result of the inflammation...the drugs do not stop the inflammation they block a part of it. This may be why the visible swelling is down and less pain but the body still senses inflammation so continues to grow bone at least this is true with anti tnf drugs. I think that cosentyx might actually speed up bone growth I think I read that was a possiblility somewhere I hope I am wrong on that one. I am hoping as we get better at stopping the inflammation it will in turn stop the fusion as well.

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#274511 - 05/14/16 08:51 AM Re: Cosentyx [Re: EricHampton]
Kelly669_107 Offline
Registered Visitor

Registered: 10/19/14
Posts: 31
Loc: Delco PA
After failing Simponi, Humira, and Cosentyx, not to mention all the DMARDs I went in for my first Remicade injection last week-I'm extremely hopeful that this will be the one for me! The nurses in the infusion room told me that they have found the AS seems to be the hardest of all the auto-immune diseases to get under control. Found it interesting that I heard this from the infusion nurses and not from my doc.
_________________________
46 year old female
HLA-B27 positive
Fusing SI joint, spinal calcification, stenosis
Simponi, prednisone (still trying to get off-but it works so well), folic acid, leflunemide (don't think it's working)

Been on but didn't work or had bad side effects: sulfasalizine, Humera, methotrexate

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#274523 - 05/14/16 11:29 PM Re: Cosentyx [Re: EricHampton]
SouthernMoss Offline
Registered Visitor

Registered: 03/12/13
Posts: 1756
Loc: MS
Originally Posted By: EricHampton
... but they don't slow down fusion. At least I don't think this has been shown in studies. ...


Actually the newer studies show that TNF inhibitors do delay and reduce radiographic progression, which would include fusion. What they have found is that the early studies followed up for 2 years, but they have since determined that AS is such a slow-moving disease that 2 years is not enough. It takes 3-4 years of followup to see the differences, but the differences are there, especially when TNF inhibitors are started early.
_________________________
Ginny - 56 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Indomethacin ER as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic

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#274525 - 05/15/16 03:50 AM Re: Cosentyx [Re: EricHampton]
thewino Offline
Registered Visitor

Registered: 04/13/10
Posts: 173
Loc: Florida
I would tend to agree with Southern Moss as the 40% that is being used in this forum topic seems like a high number in the current medical age. This may have been true 10 or 20 years ago when a diagnosis of AS meant an awful lot of these patients ended up not being able to work and possibly needed wheelchairs for mobility.

A study in 2013 (done by Haroon) was highly leaning towards TNF blockers reducing disease damage by as much as 50% as measured by X-ray. The importance, according to the author, is to start the medication as early as possible once diagnosed.

One problem I see with this is that the current average time of seeking and receiving a correct AS diagnosis is still an unacceptable seven years. Think about this because this is seven years that we could have started the correct treatments and therapies.

Anyway, this disease in the past was crippling for a lot of people. Improvements have been made but there is still a long way to go.

Kelly669_107: I had not heard that information before regarding auto-immune diseases and treating Ankylosing Spondylitis. Thank you for the heads-up.

EricHampton: I wish you well with your new medication. I really hope this is the one that works for you.

Regards,
TheWino
_________________________
Cimzia, Methotrexate SQ, Sulfasalazine, Prednisone

--Count all your blessings and remember your dreams. J. Buffett

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#274531 - 05/15/16 02:15 PM Re: Cosentyx [Re: EricHampton]
EricHampton Offline
Registered Visitor

Registered: 10/13/11
Posts: 50
I was not aware that they showed a delay in radiographic progression but that is great to hear. I did know that they say to get on them as soon as possible to have the best results though which is why many rheumatologists including my own start them as early as possible.

Often times your doc is trying to keep your spirits up and give you hope Kelly but I believe it is the most challenging to get under control. I think the anti tnf drugs might work more for more people with RA then AS but I don't know.

Thanks Thewino! I hope so also. It is scheduled to arrive on Tuesday so will let everyone know how it's going. It seriously took forever to get through insurance and the person from Novartis called and I called back this last tues and they weren't available. I thought it was on the way but was held up just to make me listen to safety info I think she called back Friday and gave me the phone number for the specialty pharmacy who I had to set it up with but it should finally get Tues. I hope it doesn't make me tired or cause side effects cause I still have 3 weeks of school.

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#274534 - 05/15/16 10:29 PM Re: Cosentyx [Re: EricHampton]
drizzit Offline
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Registered: 02/18/06
Posts: 1936
Originally Posted By: EricHampton
I was not aware that they showed a delay in radiographic progression but that is great to hear. I did know that they say to get on them as soon as possible to have the best results though which is why many rheumatologists including my own start them as early as possible.

Often times your doc is trying to keep your spirits up and give you hope Kelly but I believe it is the most challenging to get under control. I think the anti tnf drugs might work more for more people with RA then AS but I don't know.

Thanks Thewino! I hope so also. It is scheduled to arrive on Tuesday so will let everyone know how it's going. It seriously took forever to get through insurance and the person from Novartis called and I called back this last tues and they weren't available. I thought it was on the way but was held up just to make me listen to safety info I think she called back Friday and gave me the phone number for the specialty pharmacy who I had to set it up with but it should finally get Tues. I hope it doesn't make me tired or cause side effects cause I still have 3 weeks of school.


My understanding is the TNF drugs work better for AS then they do for RA frankly. There certainly is a subset of AS patients where the disease is very difficult to control.

I agree with the above that 40% is a bit dated and was for each individual drug. Meaning about 40% don't see enough relief on this TNF but might on another TNF. I have no clue what the number of people who find not enough relief from any of the TNF drugs but I suspect it is well under 40%

I hope the IL 17 drugs work for those the TNF drugs have failed for. Better yet the fecal matter transplant trials to begin in Portland this year unlock the secret to this damn disease

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#274536 - 05/15/16 11:57 PM Re: Cosentyx [Re: EricHampton]
EricHampton Offline
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Registered: 10/13/11
Posts: 50
Yea I remember reading that too but was confused do you mean better in efficacy for the people it works for or better in numbers that get some relief or both. I guess I was thinking along the lines of the latter in that it seems to me RA doesn't have as many treatment failures from the biologics but I am again not sure I have not researched that much. Interesting on the 40% being drug specific I agree; also looking at the fecal matter transplants and hookworms now! I know very little about both probably at my loss. I am gluten mostly dairy free which I know help I try to eat as few carbs and low starch but I am not perfect. It is really hard for me to live on meat and fats because I lost my gallbladder so have looked for other solutions even though I still think diet is really important.


Edited by EricHampton (05/16/16 12:11 AM)

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#274561 - 05/17/16 06:14 AM Re: Cosentyx [Re: EricHampton]
Kel0814 Offline
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Registered: 06/02/13
Posts: 12
Loc: KY
Eric- hang in there- 3rd shot of cosentyx this week- will keep u posted!
_________________________
Kel0814
Diagnosed in 2009 with AS, Female, age 39
Tried all the Biologics, started COSENTYX last week- here's hoping

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#274562 - 05/17/16 06:17 AM Re: Cosentyx [Re: drizzit]
Kel0814 Offline
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Registered: 06/02/13
Posts: 12
Loc: KY
Fecal matter transplant?? Do tell!!
_________________________
Kel0814
Diagnosed in 2009 with AS, Female, age 39
Tried all the Biologics, started COSENTYX last week- here's hoping

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#274570 - 05/17/16 10:37 AM Re: Cosentyx [Re: EricHampton]
sdot Offline
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Registered: 03/05/16
Posts: 406
I don't even want to know how they do that.

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#274576 - 05/17/16 12:51 PM Re: Cosentyx [Re: EricHampton]
SouthernMoss Offline
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Registered: 03/12/13
Posts: 1756
Loc: MS
They don't actually transplant poop. The gut bacteria are isolated, and that is what is transplanted.

Excellent article on this subject:
http://www.spondylitis.org/Learn-About-S...ochures-More/62
_________________________
Ginny - 56 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Indomethacin ER as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic

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#274580 - 05/17/16 04:29 PM Re: Cosentyx [Re: EricHampton]
sdot Offline
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Registered: 03/05/16
Posts: 406
That is much better. I would hate to know how they were going to put the poop back in..

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#274590 - 05/18/16 12:43 AM Re: Cosentyx [Re: EricHampton]
EricHampton Offline
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Registered: 10/13/11
Posts: 50
Well the first 5 weeks worth came today in this huge box. Swabs and sharps container as well the box with the actual meds was a lot smaller. I downloaded the how to from Novartis website. It is kind of a trip how you don't even push a button for the injection to start. I thought I just hit it lightly on the first injection then on the second it just started right up as soon as it hit my skin. It was virtually painless. I injected on my abdomen one on each and the first was completely painless however the second hurt a tiny bit but I was a little less prepared.

I felt a little light headed with a mild headache and mild pain in my abdomen around where my liver is, however I don't think it's metabolized by the liver at all so maybe just bloating from eating a large amount of Chinese food then the new med I don't know.

I am really hoping this works because I don't think there are any other options as far as biologics. I don't know if the next IL 17 drugs by Lilly and JnJ I think are different like the Anti TNF drugs are...fusion protein vs monoclonal antibody and what that means for the patient. I know neither has been approved yet and then would take more time for my rheumy to be comfortable letting me try it. I know this is more likely to help then Stelara which I failed however they are similarly connected in that IL 23 upregulates IL 17 or something like that, I know they are related and have both been areas of interest in the seronegatives. Again I am very hopeful for this one because Actemra or the IL 6 drugs I don't know anyone other then Anna who has responded well to and I met a retired doctor at the pharmacy a couple of weeks ago who like me failed everything but was getting at least some response from Orencia. The other one on the SAA site is Anakira or Kineret I think but I don't think any of these last 3 did hardly anything in the trials but I don't discount them having helped people. All in all my fingers are crossed and be sure I'll keep you guys updated. One last thing Kelly! Does your sister have axial spondylitis symptoms in her back and neck as a part of her psoriatic arthritis? I am hoping that you get a dramatic reduction in symptoms over the next couple weeks as I am with the other Cosentyx users who have yet to see their symptoms fade away.

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#274821 - 06/01/16 05:28 PM Re: Cosentyx [Re: EricHampton]
EricHampton Offline
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Registered: 10/13/11
Posts: 50
I have given my self 2 shots now without any difference. I was a few days late on my second shot however will not be again this week. The first of the two pens stopped a little bit short so i assumed it was done and after quite a while i pulled it back and a dew drips came out after. I know it takes longer for the arthritis then it does for psoriasis. I never got any benefit at all from the anti tnf drugs and don't know why. I also am unsure of how IL 17 differs from tnf so i am really hoping this drug works. If 80% of the people with AS didn't progress over 2 years; i should have a good chance since because that is a lot higher then the success rate from the anti tnf drugs.

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#274915 - 06/09/16 01:01 AM Re: Cosentyx [Re: EricHampton]
EricHampton Offline
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Registered: 10/13/11
Posts: 50
Hi guys,

I gave my self my 3rd shot on Sunday and I don't really feel much if anything. It is still early and I am taking pain meds so might be hard for me to feel early signs. I might be a little less stiff while sitting but it could be from stretching and exercise. Staying hopeful it will kick in.

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#274939 - 06/11/16 10:20 AM Re: Cosentyx [Re: EricHampton]
kitkat203 Offline
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Registered: 07/14/14
Posts: 71
Loc: Coral Springs , Florida
I also just had my second of my loading dose of Cosentyx. I have failed Enbrel, Humira, and developed severe Plaque Psoriasis from Remicade. Made my approval for Cosentyx eaisier ( haha)! I kind of feel like this is my last hope, I have been in severe pain for over 8 years and can only function on pain killers. It is very hard to keep going sometimes. Keeping my fingers crossed for all of us biologic failures! Will keep you posted.
_________________________
Diagnosed with AS November 2013,HLAb27-neg. Also diagnosed with Fibromyalga and CREST syndrome. Degenerative disease of the cervical spine.

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#275012 - 06/19/16 09:48 PM Re: Cosentyx [Re: EricHampton]
CLA Offline
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Registered: 04/29/14
Posts: 5
Hi All,
I find it kinda disheartening that Cosentyx hasn't seemed to give most of you much relief. I got my first injection today and after failing Humira, Cimzia, and Stelara as well as various types of pills I do not hold much hope for this medication. One of the pills I was on is Otezla which EricHampton mentioned. Worst drug I have ever been on. It had such bad side effects I was barely functional. I experienced debilitating nausea, fatigue and muscle aches and it was awful. I can't contribute to the discussion of what percentage of people respond to treatment, but I can add that my rheumatologist has told me that females in general do not respond as well to treatment. Not sure how true that statement is, but so far seems true for me. I have been on this journey for 4 years and have been getting worse especially in the last year. In the last few months I have started having issues falling asleep and feeling well rested even when I do sleep. The pain+exhaustion is making daily life much harder. Really need relief at this point and am quite tired of searching for something that will help. Guess I'll see what happens with Consentyx.

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#275016 - 06/20/16 12:53 AM Re: Cosentyx [Re: EricHampton]
EricHampton Offline
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Registered: 10/13/11
Posts: 50
From what I have seen I do not think it is sex based at all. There are many men who do not elicit any response from the biologics. CLA Enbrel is different enough though I would try it still. I can't deny the response from my rheumy that I read from her face which is I'll help you try it...makes the most scientific sense...but I don't think it's gonna help. Hope I'm wrong though gotta ride it out to 16 weeks and I'm sorry for being a downer 11 + with this and I remember how sad I was when the biologics did not achieve as they were promised.

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#275065 - 06/21/16 06:08 PM Re: Cosentyx [Re: EricHampton]
Shippingnews Offline
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Registered: 10/11/15
Posts: 371
Originally Posted By: EricHampton
Thanks for info. Yes MTX is methotrexate. Guessing it may take a few weeks to get here then. I feel like it has been out long enough that I would expect to see more people talking about their experience with Cosentyx. I guess we are the unlucky few who don't respond to biologics or respond well. If it doesn't end up working maybe worth giving Actema a shot. I can't do Arava it made me so sick I was puking and didn't recover for a while. Not saying it's not helpful to some but staying away from MTX. I have a lot of gut issues since losing my gallbladder so that might be why those drugs even Sulfa makes me sick. Will post as soon as i have more info

Eric


Thanks Eric. How are you doing now on Cosentyx? Is it helping ?

Thanks!
_________________________
Male, early 30s. AS diagnosed Sep 2015. HLAB27+
Current medicines: Omeprazole, Vit D3, Celecoxib(1 tab)/Zorvolex(2 tabs)(alternatimg between these two every week), Pyridoxine, Isoniazid, MTX(3 tab) every wednesday, on humira every two weeks since Dec 2015, Weekly Humira since June 18th 2016
On cosentyx 300mg a month since Dec '16

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#275185 - 06/30/16 05:39 AM Re: Cosentyx [Re: EricHampton]
EricHampton Offline
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Registered: 10/13/11
Posts: 50
Hi Shipping I have not really noticed anything after doing the loading dose of 5weeks at 300 mg/ml (2 x 150 mg/ml) shots one per week however you are supposed to give it 16 weeks before deciding if it works or not. There is nothing else I am really comfortable trying at this point so giving it the full trial if rheumy agrees. I think Actemra and Rituxan are maaaybe worth trying but there is little data on these drugs helping Spondylitis and I am not really comfortable with the immune suppression caused by Rituxan if anyone has info on these drugs helping them or late response to Cosentyx I would be happy to hear it. Thanks guys.

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#275198 - 06/30/16 11:16 PM Re: Cosentyx [Re: EricHampton]
Steady1 Offline
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Registered: 06/25/16
Posts: 3
My story is I'm a 53 year old male diagnosed with AS nine years ago - HLA-B positive. I have responded as well as could be expected on Humira but fatigue was still a big problem. Stiffness was better I'll admit but inflammation and calcification growth in spine was continuing. Oh ya, I can't forget the uveitis. Humira was mostly keeping that in check. Started Cosentyx two weeks after last dose of humira. I went to sleep for two hours after first cosentyx injection and when I woke up could immediately feel a dramatic decrease in stiffness. After two days I had more energy than I can remember in years. Worked hard in the yard and felt great. This lasted four days and then over each succeeding day old symptoms got progessively worse. I was pretty misirable by the next one week starter dose. Now five days later and it's been a hard week dragging into the office, coming home and crashing till next day. I wonder if in those first few days both Humira and Cosentyx were working together. Keeping fingers crossed Cosentyx will kick in after a few weeks.

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#275203 - 07/01/16 08:11 PM Re: Cosentyx [Re: EricHampton]
Shippingnews Offline
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Registered: 10/11/15
Posts: 371
Since both Cosentyx and Humira work at different stages of inflammation(IL 17 A and TNFα )I suppose that is possible.I am on double dose of humira. I will have to say it has helped me significantly in my fatigue, earlier by this time, I used to shut down, but not now. However, there is a lot more I want from it, I also have fusion in my spine(which makes things worse for me)
_________________________
Male, early 30s. AS diagnosed Sep 2015. HLAB27+
Current medicines: Omeprazole, Vit D3, Celecoxib(1 tab)/Zorvolex(2 tabs)(alternatimg between these two every week), Pyridoxine, Isoniazid, MTX(3 tab) every wednesday, on humira every two weeks since Dec 2015, Weekly Humira since June 18th 2016
On cosentyx 300mg a month since Dec '16

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#275605 - 08/06/16 11:56 PM Re: Cosentyx [Re: Steady1]
Steady1 Offline
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Registered: 06/25/16
Posts: 3
Update: I'm now about 7 weeks into the cosentyx. My productivity has improved. I would say that fatigue has decreased. Also morning stiffness has improved. But lower back and periferal pain has increased. Muscle tightning around problem spots not as well managed as on humira. I still have aways to go before 16 weeks so I'm still hopeful. Tradeoffs sure but I don't want to go back yet.


My story is I'm a 53 year old male diagnosed with AS nine years ago - HLA-B positive. I have responded as well as could be expected on Humira but fatigue was still a big problem. Stiffness was better I'll admit but inflammation and calcification growth in spine was continuing. Oh ya, I can't forget the uveitis. Humira was mostly keeping that in check. Started Cosentyx two weeks after last dose of humira. I went to sleep for two hours after first cosentyx injection and when I woke up could immediately feel a dramatic decrease in stiffness. After two days I had more energy than I can remember in years. Worked hard in the yard and felt great. This lasted four days and then over each succeeding day old symptoms got progessively worse. I was pretty misirable by the next one week starter dose. Now five days later and it's been a hard week dragging into the office, coming home and crashing till next day. I wonder if in those first few days both Humira and Cosentyx were working together. Keeping fingers crossed Cosentyx will kick in after a few weeks. [/quote]

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#275767 - 08/22/16 03:42 AM Re: Cosentyx [Re: EricHampton]
Shippingnews Offline
Registered Visitor

Registered: 10/11/15
Posts: 371
Hi Steady,

Curious, how is cosentyx doing for you now? I know its not been a long time since you last posted, but please keep us posted on when you get chance. Hope it works for you. I am curious is your fatigue a symptom of low testosterone? Did you ever get that tested in past? if so, was it normal or towards low,may not be out of range but inclined towards low?
I recently had blood work done and it was 398. My rheumy said that if I can get that up,my fatigue will greatly improve. I am also on weekly humira and started gabapentin recently. I am hoping my fatigue improves greatly, so I can do things. I am looking forward to my appt. with my PCP who can work with me to get this up.

This is my.
Test Low Normal High Reference Range Units
Testosterone, Serum 398 348-1197 ng/dL
_________________________
Male, early 30s. AS diagnosed Sep 2015. HLAB27+
Current medicines: Omeprazole, Vit D3, Celecoxib(1 tab)/Zorvolex(2 tabs)(alternatimg between these two every week), Pyridoxine, Isoniazid, MTX(3 tab) every wednesday, on humira every two weeks since Dec 2015, Weekly Humira since June 18th 2016
On cosentyx 300mg a month since Dec '16

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#276134 - 09/23/16 06:54 PM Re: Cosentyx [Re: Steady1]
RAHMBA Offline
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Registered: 06/27/12
Posts: 490
Loc: Los Angeles, CA
If you are doing well on Cosentyx, will you please contact me? 818-892-1616 x231 or at Richard@spondylitis.org I'm looking for a speaker. Thank you! Rich


Edited by RAHMBA (09/23/16 06:56 PM)
_________________________
AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.

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#276239 - 10/05/16 12:41 AM Re: Cosentyx [Re: Steady1]
Steady1 Offline
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Registered: 06/25/16
Posts: 3
UPDATE: I'm about 15 weeks into Cosentyx now. I've been making steady progress. Going four weeks between injections made me worried but it worked OK. My uveitis seems to be better controlled superior to Humira. Cosentyx has also been superior in the fatigue category. There is still pain in all the regular places but it's been lessened. Morning stiffness is less than before. Two weeks ago I felt like doing yard work again. Worked in the morning, took a nap and went again for three hours. Trouble was I over did myself and got a bad muscle strain. I've got to slow back into more activity next time. Cosentyx is not the final answer but given the improvements I'm glad I made the change. Hope this helps.

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#276240 - 10/05/16 08:32 AM Re: Cosentyx [Re: EricHampton]
sdot Offline
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Registered: 03/05/16
Posts: 406
That is good to hear.

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#276243 - 10/05/16 10:36 AM Re: Cosentyx [Re: EricHampton]
SouthernMoss Offline
Registered Visitor

Registered: 03/12/13
Posts: 1756
Loc: MS
Thanks for the update, Steady1. That's exciting that you are doing so well on Cosentyx.
_________________________
Ginny - 56 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Indomethacin ER as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic

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#276285 - 10/09/16 11:36 AM Re: Cosentyx [Re: EricHampton]
kitkat203 Offline
Registered Visitor

Registered: 07/14/14
Posts: 71
Loc: Coral Springs , Florida
I have been on Cosentyx for 16 weeks. I started my first dose on June 2nd. I have both severe plaque psoriasis and AS. Cosentyx has been a miracle drug for my psoriasis, not so much for the AS. I must say however, that I recently went on a cruise and participated in activities that would probably make my Rhuemy have a cow! I'm still recovering from that and preparing for Hurricane Matthew! my doctor isn't sure if my pain may be from damage and not inflammation.I can feel when I have increased inflammation, no matter what my doctor says, and I haven't felt any improvement there. I still need my pain meds and muscle relaxants to function, and I am still paying for my cruise adventures! (but I would do them again!).
_________________________
Diagnosed with AS November 2013,HLAb27-neg. Also diagnosed with Fibromyalga and CREST syndrome. Degenerative disease of the cervical spine.

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#276451 - 10/24/16 05:23 PM Re: Cosentyx [Re: EricHampton]
tskop Offline
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Registered: 05/05/14
Posts: 14
Cosentyx is my last hope. I have been through Simponi, Humira, Stelara, Enbrel, Otezla, along with methotrexate, and a try with Arava. Nothing reallly helps or I have short term successes with these meds and then it's back to the pain, stiffness, and fatigue. I'm hoping this med will help and I feel encouraged by this post.

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#276452 - 10/24/16 08:11 PM Re: Cosentyx [Re: tskop]
RAHMBA Offline
Registered Visitor

Registered: 06/27/12
Posts: 490
Loc: Los Angeles, CA
wishing you success. There have been some positive findings with this medication and it does use a different pathway than all those other medications. there are additional meds in the pipeline. I imagine you've already talked with a pain mgt doc they may additional suggestions. there is a video archive from Dr. Overbaugh that I think is very thoughtful and helpful. http://www.spondylitis.org/Connect-With-Others/Seminar


Edited by RAHMBA (10/24/16 08:12 PM)
_________________________
AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.

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#276454 - 10/24/16 10:45 PM Re: Cosentyx [Re: EricHampton]
Shippingnews Offline
Registered Visitor

Registered: 10/11/15
Posts: 371
Hi Rich,

Can you please provide a link to the seminar? The link you gave does not show any video

Thank You.
_________________________
Male, early 30s. AS diagnosed Sep 2015. HLAB27+
Current medicines: Omeprazole, Vit D3, Celecoxib(1 tab)/Zorvolex(2 tabs)(alternatimg between these two every week), Pyridoxine, Isoniazid, MTX(3 tab) every wednesday, on humira every two weeks since Dec 2015, Weekly Humira since June 18th 2016
On cosentyx 300mg a month since Dec '16

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#276459 - 10/26/16 01:02 AM Re: Cosentyx [Re: RAHMBA]
Shippingnews Offline
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Registered: 10/11/15
Posts: 371
Originally Posted By: RAHMBA
wishing you success. There have been some positive findings with this medication and it does use a different pathway than all those other medications. there are additional meds in the pipeline. I imagine you've already talked with a pain mgt doc they may additional suggestions. there is a video archive from Dr. Overbaugh that I think is very thoughtful and helpful. http://www.spondylitis.org/Connect-With-Others/Seminar


Hi RAHMBA,

What positive findings? could you please describe more, probably a link as well? I am preparing myself mentally to make the switch. pain is one thing but I do not want to be 100% disabled, where I cannot even walk or even do computer work. May be I need to take the risk of switching the biologic, I guess no one can tell whether the change would be positive or negative, but sticking to one biologic, is a big risk, especially when I can see that it is not effective enough and slowly I feel like I am moving towards 100% disability.

Thank You, kindly.


Edited by Shippingnews (10/26/16 01:02 AM)
_________________________
Male, early 30s. AS diagnosed Sep 2015. HLAB27+
Current medicines: Omeprazole, Vit D3, Celecoxib(1 tab)/Zorvolex(2 tabs)(alternatimg between these two every week), Pyridoxine, Isoniazid, MTX(3 tab) every wednesday, on humira every two weeks since Dec 2015, Weekly Humira since June 18th 2016
On cosentyx 300mg a month since Dec '16

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#276464 - 10/26/16 11:44 AM Re: Cosentyx [Re: EricHampton]
SouthernMoss Offline
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Registered: 03/12/13
Posts: 1756
Loc: MS
Shippingnews, I think Rich was probably referring to one of the videos on the link at the end of this paragraph. Notice there are 4 videos on the page. The first two are Dr John Cush, and the last two are Dr Robert Overbaugh, who is the doctor to which Rich referred in his post.
http://www.spondylitis.org/About-SAA/News/2016-spondylitis-educational-seminar-dallas-texas-12

Here's a link to an SAA news article announcing the FDA approval of Cosentyx for treating AS. It contains several links.
http://www.spondylitis.org/About-SAA/New...ic-arthritis-31

_________________________
Ginny - 56 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Indomethacin ER as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic

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#276481 - 10/28/16 06:56 PM Re: Cosentyx [Re: EricHampton]
Shippingnews Offline
Registered Visitor

Registered: 10/11/15
Posts: 371
Thanks Ginny! for the information.
_________________________
Male, early 30s. AS diagnosed Sep 2015. HLAB27+
Current medicines: Omeprazole, Vit D3, Celecoxib(1 tab)/Zorvolex(2 tabs)(alternatimg between these two every week), Pyridoxine, Isoniazid, MTX(3 tab) every wednesday, on humira every two weeks since Dec 2015, Weekly Humira since June 18th 2016
On cosentyx 300mg a month since Dec '16

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#276489 - 10/30/16 02:04 PM Re: Cosentyx [Re: EricHampton]
CLA Offline
Registered Visitor

Registered: 04/29/14
Posts: 5
UPDATE: It is my 20th week on Cosentyx. It is a tremendous help with the fatigue but I don't think it helps much with the pain. That being said at least it does something so I'll stick with it for as long as possible.

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#276587 - 11/05/16 03:49 PM Re: Cosentyx [Re: EricHampton]
Shippingnews Offline
Registered Visitor

Registered: 10/11/15
Posts: 371
Hi All,

I am going to start with cosentyx, if my insurance approves it. Please keep sharing your experience with cosentyx. It will be very kind of you. This will be my second biologic, and I am little worried about it, because I have to let go humira which was not working well on me, but I am not even sure if cosentyx will be better or worse. I could not live with the knowledge that another biologic may work wonders on me, and now I am worried that it may be a bad move. Especially given the fact that I am fusing all over my joints like ice. Got my SI joints MRI yesterday which say they are completely fused. I wish the radiologist is wrong, and it is a very long bad dream. Which it is not.

Thanks for your support.
_________________________
Male, early 30s. AS diagnosed Sep 2015. HLAB27+
Current medicines: Omeprazole, Vit D3, Celecoxib(1 tab)/Zorvolex(2 tabs)(alternatimg between these two every week), Pyridoxine, Isoniazid, MTX(3 tab) every wednesday, on humira every two weeks since Dec 2015, Weekly Humira since June 18th 2016
On cosentyx 300mg a month since Dec '16

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#276588 - 11/05/16 04:14 PM Re: Cosentyx [Re: Steady1]
Shippingnews Offline
Registered Visitor

Registered: 10/11/15
Posts: 371
Originally Posted By: Steady1
UPDATE: I'm about 15 weeks into Cosentyx now. I've been making steady progress. Going four weeks between injections made me worried but it worked OK. Cosentyx has also been superior in the fatigue category. There is still pain in all the regular places but it's been lessened. Morning stiffness is less than before. Two weeks ago I felt like doing yard work again. Worked in the morning, took a nap and went again for three hours. Trouble was I over did myself and got a bad muscle strain. I've got to slow back into more activity next time. Cosentyx is not the final answer but given the improvements I'm glad I made the change. Hope this helps.


Hi Steady, my case is almost like yours. Like you humira was good for my inflammation, stiffness, but not my final answer. So in search of greener grounds I decided to take the leap of faith, and tell my rheumy I want to try cosentyx. I will be very happy if I can do an hour of yard work. Currently I cannot even bend. And Yes I do have calcification all over my spine like you and SIs are fused.

Interestingly you said:

"My uveitis seems to be better controlled superior to Humira. "

My doctor told me other wise. Also the humira seems to be the only biologic approved for Uveitis by FDA. But I am happy that it does help you with uveitis, no matter what the FDA says. I too would settle for cosentyx if it works better than humira. I have no plans for changing biologic again. I think I can now understand what it means to accept AS(i.e. I will never be disease free, I kept denying it from last 1 year, but it did not budge down from damaging my spine and SI joints.) Interestingly one thing which I have noticed is my short span of attention to anything I do, even writing these posts, which I sometimes write multiple times, instead of one single post,as I just did now. Anyways that is least of my problems. best of luck.


Edited by Shippingnews (11/05/16 04:14 PM)
_________________________
Male, early 30s. AS diagnosed Sep 2015. HLAB27+
Current medicines: Omeprazole, Vit D3, Celecoxib(1 tab)/Zorvolex(2 tabs)(alternatimg between these two every week), Pyridoxine, Isoniazid, MTX(3 tab) every wednesday, on humira every two weeks since Dec 2015, Weekly Humira since June 18th 2016
On cosentyx 300mg a month since Dec '16

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#276696 - 11/14/16 02:54 PM Re: Cosentyx [Re: EricHampton]
Shippingnews Offline
Registered Visitor

Registered: 10/11/15
Posts: 371
My pharmacy denied cosentyx, this is really bad
_________________________
Male, early 30s. AS diagnosed Sep 2015. HLAB27+
Current medicines: Omeprazole, Vit D3, Celecoxib(1 tab)/Zorvolex(2 tabs)(alternatimg between these two every week), Pyridoxine, Isoniazid, MTX(3 tab) every wednesday, on humira every two weeks since Dec 2015, Weekly Humira since June 18th 2016
On cosentyx 300mg a month since Dec '16

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#276697 - 11/14/16 03:02 PM Re: Cosentyx [Re: EricHampton]
Shippingnews Offline
Registered Visitor

Registered: 10/11/15
Posts: 371
what are my options? please advice. I thought it would save my life..but guess the insurance company think its better to not have to spend more on this person as he is not getting well

Updated: It seems my doctors office sent my diagnosis code as Rheumatoid Arthritis, will be going to my doctors clinic and request them to file an appeal with correct diagnosis code


Edited by Shippingnews (11/14/16 03:46 PM)
_________________________
Male, early 30s. AS diagnosed Sep 2015. HLAB27+
Current medicines: Omeprazole, Vit D3, Celecoxib(1 tab)/Zorvolex(2 tabs)(alternatimg between these two every week), Pyridoxine, Isoniazid, MTX(3 tab) every wednesday, on humira every two weeks since Dec 2015, Weekly Humira since June 18th 2016
On cosentyx 300mg a month since Dec '16

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#276845 - 12/09/16 03:53 PM Re: Cosentyx [Re: EricHampton]
Shippingnews Offline
Registered Visitor

Registered: 10/11/15
Posts: 371
*bumping this up.
Anyone else have anything to share about cosentyx?

Thanks.
_________________________
Male, early 30s. AS diagnosed Sep 2015. HLAB27+
Current medicines: Omeprazole, Vit D3, Celecoxib(1 tab)/Zorvolex(2 tabs)(alternatimg between these two every week), Pyridoxine, Isoniazid, MTX(3 tab) every wednesday, on humira every two weeks since Dec 2015, Weekly Humira since June 18th 2016
On cosentyx 300mg a month since Dec '16

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#277234 - 02/04/17 03:52 PM Re: Cosentyx [Re: EricHampton]
KarenB Offline
Registered Visitor

Registered: 09/01/06
Posts: 1504
Loc: Northern California
I have been approved for Cosentyx and should get my first delivery soon.(after much back and forth with docs office, specialty pharmacy, and insurance) Then the "injection training" I will let you know how it goes. I was on Remicade for a few years and did not realize how much it helped until I was off of it....
My Rhuemy has a few patients on Cosentyx for A.S. and she told me that it is working well for them and that it takes some longer than others to feel results. My understanding is that Cosentyx attacks IL-17 which is different than other biologics. I'll keep you posted on my experience.
_________________________
Live Life Man, Live Life

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#277794 - 04/19/17 05:26 PM Re: Cosentyx [Re: EricHampton]
CB in CA Offline
Registered Visitor

Registered: 02/20/03
Posts: 2840
Loc: Huntington Beach, CA
Joining in late to this discussion.. I wonder how you have all done this past year on Cosentyx.

My Rhuemy told me yesterday that despite not having any flares these past 7 years and not much pain, my spine xrays from last year to now prove something different. I was advised to start Enbrel. I wasn't expecting that and gave a quick debate and questioned any increased cancer risk blah, blah, blah and she offered Cosentyx because "I have less chance of getting whatever I am afraid of getting" from Enbrel...or something along those lines. (my mind was a blur from the discussion as this was not expected) Then she spoke about Taltz which sounds like a new sister drug to Cosentyx and then a 2 year double blind study being done at her office. I asked if I could be a part of it and she said yes if I qualify. She didn't offer it to me until I asked. So, I don't know what to do.

Interestingly, the paperwork for the study says its for, 'Radiographic axial spondyloarthritis, formerly known as ankylosing spondylitis.
Has the name been officially changed?

Any advice is appreciated and I hope to hear more about your results from Cosentyx.
(Karen - Long time since we chatted!- Hope your doing well)

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#278799 - 08/19/17 05:22 PM Re: Cosentyx [Re: EricHampton]
lilpoke Offline
Registered Visitor

Registered: 02/15/14
Posts: 3
I have tried different biologics in the past, and recently added Cosentyx to the list.

Here is my medication background before I give you my opinion of Cosentyx...

Enbrel was the most helpful, but after 3 years of use, it caused Endocarditis and an infection in my spine. Endocarditis caused mitral valve problems which required open heart surgery. My doctor then said I should no longer take biologics. However, after several months, my AS advanced to the point I could barely walk and I was in severe pain, so we decided that I should try Humira. Humira worked fairly well, however I did still have some swelling (knees, elbows & wrists). After 2 years, my liver counts skyrocketed and that put an end to taking Humira.

After my liver counts returned to nearly normal (6 months) I began Cosentyx. Of the three biologics I have taken, this is my least favorite. After the loading dose and three injections I have seen very little help and a lot of annoying side effects...Painful stomach whenever I eat, for a week following injection, it causes back muscles to tighten and be painful, night sweats, dry eyes, yeast infections.... Although these side effects may not be as serious as what I experienced with the other biologics, I don't think I can tolerate taking this much longer. Has anyone else had this type of experience with side effects? Do they go away eventually?

Because I like to read what others have experienced with different drugs, I though I would leave my feedback here...of course everyone reacts differently to medications.

Finally, although some of the side effects have been serious that I have experienced over the years, I would not do anything differently. I had several years being nearly pain free because of the Enbrel and Humira. Hopefully, you are finding success with the Cosentyx!

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#278932 - 09/06/17 09:02 PM Re: Cosentyx [Re: EricHampton]
Camerican Offline
Registered Visitor

Registered: 06/27/13
Posts: 12
Loc: Dallas
I'm currently 10 weeks into Cosentyx. I felt great during the initial 4 - 1 week dosing, then felt that all fade away during the 4 weeks between that and the 1st monthly dose. I too have tried all of the TNF's. I was surprised to hear that you tried Stelara (?) before Cosentyx b/c Cosentyx is approved for AS but Stelara is not. I think Stelara is where I'm headed next. Any advice regarding Stelara?

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#279022 - 09/15/17 01:13 PM Re: Cosentyx [Re: EricHampton]
Camerican Offline
Registered Visitor

Registered: 06/27/13
Posts: 12
Loc: Dallas
Eric, from what I understand both are steroids. Maybe just different brand names.

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#279072 - 09/21/17 10:58 AM Re: Cosentyx [Re: EricHampton]
Thomopro Offline
Registered Visitor

Registered: 04/08/13
Posts: 21
Hey all, been awhile since I've posted here... I'm on my second loading injection with Cosentyx and I've already noticed a slight improvement re: pain & fatigue compared to Humira results. No real improvement in skin and I'm pretty much sick as a dog on injection day, but that clears up after 24 hours.

I'll post updates as I get further along, but hopeful so far!
Peace
_________________________
Greg (49)
AS
HLA-B27 neg, MTX, Folic Acid, Belbuca, Cosentyx (failed Enbrel, Remicade, Humira). Diclofenac caused kidney failure, Hard breakup with Norco.

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