Spondyloarthritis / Spondylitis Forums - Spondylitis Association of America
Spondylitis Association of America Home Page Learn About Spondyloarthritis / Ankylosing Spondylitis About Us - Our Work More Ways To Connect With Others / Support Groups And More Become a Member of SAA We Are A Nonprofit - Donate Today Shop for Products
Page 4 of 8 < 1 2 3 4 5 6 7 8 >
Topic Options
#274534 - 05/15/16 10:29 PM Re: Cosentyx [Re: EricHampton]
drizzit Offline
Registered Visitor

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

Top
#274536 - 05/15/16 11:57 PM Re: Cosentyx [Re: EricHampton]
EricHampton Offline
Registered Visitor

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)

Top
#274561 - 05/17/16 06:14 AM Re: Cosentyx [Re: EricHampton]
Kel0814 Offline
Registered Visitor

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

Top
#274562 - 05/17/16 06:17 AM Re: Cosentyx [Re: drizzit]
Kel0814 Offline
Registered Visitor

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

Top
#274570 - 05/17/16 10:37 AM Re: Cosentyx [Re: EricHampton]
sdot Offline
Registered Visitor

Registered: 03/05/16
Posts: 406
I don't even want to know how they do that.

Top
#274576 - 05/17/16 12:51 PM Re: Cosentyx [Re: EricHampton]
SouthernMoss Offline
Registered Visitor

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

Top
#274580 - 05/17/16 04:29 PM Re: Cosentyx [Re: EricHampton]
sdot Offline
Registered Visitor

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..

Top
#274590 - 05/18/16 12:43 AM Re: Cosentyx [Re: EricHampton]
EricHampton Offline
Registered Visitor

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.

Top
#274821 - 06/01/16 05:28 PM Re: Cosentyx [Re: EricHampton]
EricHampton Offline
Registered Visitor

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.

Top
#274915 - 06/09/16 01:01 AM Re: Cosentyx [Re: EricHampton]
EricHampton Offline
Registered Visitor

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.

Top
Page 4 of 8 < 1 2 3 4 5 6 7 8 >


Moderator:  ElinAslanyan