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#274182 - 04/25/16 01:33 AM Re: Cosentyx [Re: EricHampton]  
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Kelly669_107 Offline
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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
#274183 - 04/25/16 02:05 AM Re: Cosentyx [Re: EricHampton]  
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Banana Offline
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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.
#274186 - 04/25/16 07:05 AM Re: Cosentyx [Re: EricHampton]  
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Shippingnews Offline
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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.


Last edited by Shippingnews; 04/25/16 07:05 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
#274221 - 04/27/16 06:22 AM Re: Cosentyx [Re: EricHampton]  
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EricHampton Offline
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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

#274285 - 05/01/16 03:38 PM Re: Cosentyx [Re: EricHampton]  
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Kelly669_107 Offline
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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
#274326 - 05/03/16 08:02 PM Re: Cosentyx [Re: EricHampton]  
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sarahr28 Offline
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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.
#274349 - 05/05/16 01:15 AM Re: Cosentyx [Re: EricHampton]  
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Roccdeezy Offline
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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.

#274483 - 05/12/16 03:20 PM Re: Cosentyx [Re: sarahr28]  
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Kel0814 Offline
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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
#274489 - 05/12/16 04:19 PM Re: Cosentyx [Re: EricHampton]  
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Posts: 12
Kel0814 Offline
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Kel0814  Offline
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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
#274490 - 05/12/16 04:30 PM Re: Cosentyx [Re: EricHampton]  
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EricHampton Offline
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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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