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#274491 - 05/12/16 10:00 AM Re: Cosentyx [Re: Kel0814]
sdot Offline
Registered Visitor

Registered: 03/05/16
Posts: 400
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 11:18 AM Re: Cosentyx [Re: EricHampton]
EricHampton Offline
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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 12:29 PM Re: Cosentyx [Re: EricHampton]
SouthernMoss Offline
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Registered: 03/12/13
Posts: 1607
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 D, Calcium, Fish Oil, Melatonin, Culturelle probiotic

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#274507 - 05/13/16 02:48 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 03:56 PM Re: Cosentyx [Re: EricHampton]
sdot Offline
Registered Visitor

Registered: 03/05/16
Posts: 400
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 06:40 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 05:51 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 08:29 PM Re: Cosentyx [Re: EricHampton]
SouthernMoss Offline
Registered Visitor

Registered: 03/12/13
Posts: 1607
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 D, Calcium, Fish Oil, Melatonin, Culturelle probiotic

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#274525 - 05/15/16 12:50 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 11:15 AM 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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