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Struggling with every option #280665
06/28/18 03:10 PM
06/28/18 03:10 PM
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awesomeman Offline OP
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We made the decision to go on biologics about a year and a half ago and its been almost the same story with every single one. I've been through humira, cosentyx, orencia, cimzia and am now on simponi.
with the exception of the cosentyx, they are took the same course. Minor benefits for the first 2-3 months and then my body just tanks. Extreme fatigue, fogginess. The best I can describe is that feeling of after you wake up from general anesthesia. The difference with consentyx was that it made me feel that way from day 1. Has anyone else had similar experiences and failures with biologics? Its just hard to keep on pushing when you've literally been sick for 18 months and continue to see every option fail.


diagnosed at 32.
HLA B27 Positive
Currently on Simponi, Tramadol, and celebrex
Re: Struggling with every option [Re: awesomeman] #280686
07/02/18 12:40 AM
07/02/18 12:40 AM
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NJ, USA
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CBMom Offline
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How long did you stay on each biologic? Did you try upping the dose before moving on?

I haven't really had those side effects from biologics. I do have severe fatigue from flares, but that is generally managed on biologics, though I need to rest and pace myself much more than the average 24 year old.

They now recommend that you should try a biologic after at least 6 months before deeming it a failure. If you only get minor benefits in the first 2-3, perhaps upping the dose would help. It may also increase the side effects that you're having but it's hard to know if those are from active AS or from the biologics themselves.

Are you on any other meds - MTX or Arava could help with peripheral joint pain. Generally biologics are considered the best option for spinal pain though.

Humira took a full 6 months plus the addition of MTX and moving to weekly injections before it helped me. Same with the other biologics - I do have some benefit in the first few months, but it always has taken longer than that to feel the full benefit and I have always needed higher than normal doses. I did better on Cosentyx than any of the others, but as I'm sure you know it's very individual.

Re: Struggling with every option [Re: awesomeman] #280690
07/02/18 03:54 PM
07/02/18 03:54 PM
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kjb Offline
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Awesomeman

I have had the same problem. I was on Enbrel, Humira and then cosentyx. None of them worked for me. Right now I am not taking anything, Which I do not recommend, however, I am waiting to get in to see my rheumy to discuss different options. I am confident something or some combination will work. Dont give up. As CBMom said, discuss adding something or upping the dosage with your DR.

Re: Struggling with every option [Re: awesomeman] #280692
07/02/18 06:30 PM
07/02/18 06:30 PM
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Anne64 Offline
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I posted on here somewhere else, so sorry not sure where. I am 54, I had knee surgery and that is when the synovial fluid showed the AS. I tried 2 injections of Humira and had horrible reactions so the doctor stopped it. I am currently doing a no/low starch diet and feel good. The one rheumatologist told me that biologics does nothing to stop the progression, only helps with pain. The other doctor in the office said try the diet and see how you do. Not sure which one is right, but willing to try the strict diet rather than all the side affects for now.

Re: Struggling with every option [Re: Anne64] #280698
07/03/18 05:34 AM
07/03/18 05:34 AM
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seymour Offline
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Originally Posted by Anne64
The one rheumatologist told me that biologics does nothing to stop the progression, only helps with pain.


I can't understand how a rheumatologist can flat out say biologics do nothing for progression. Especially now that we know they can slow progression by as much as 50%.

Re: Struggling with every option [Re: awesomeman] #280699
07/03/18 12:33 PM
07/03/18 12:33 PM
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Banana Offline
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It is PROVEN that biologicals DO slow/stop the progression. That is a FACT now.

Adding MTX or arava helps--also, after I failed a couple my Rhuemy had a week taper of prednesone the week of first biological addition.


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.
Re: Struggling with every option [Re: awesomeman] #280702
07/05/18 04:52 PM
07/05/18 04:52 PM
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Posts: 459
St George, UT
Britefutr Offline
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There is new debate about the effect on disease progression in AS patients. While it’s definitely proven that anti-TNF drugs stop the progression of rheumatoid and psoriatic arthritis, there was a new study in 2013 that concluded that although symptoms of AS abait, the progression continues. They still don’t know why. I think there are other studies as well but I’ll just put a link to this one

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3974160/

One more thought for the poster. I had some issues that you’re describing but they were actually caused by DMARD. I had tried methotrexate and did not have as much benefit as I needed so it wasn’t worth the side effects. Then I was put on sulfasalazine. It took about four months but I suddenly became very very ill all the time, no idea what was going on, until I asked my Rheumy. He said it was most likely the sulfasalazine, after stopping I felt better in about three days.


Sebeth
---------------
AS onset at age 13, finally diagnosed in 1989, age 22!
Currently awaiting Cosentyx.
IBS, Polycythemia Vera, Anticardiolipid Syndrome,
Myositis, Adrenal Insuffiency, Asthma, etc...
Re: Struggling with every option [Re: Britefutr] #280706
07/05/18 06:40 PM
07/05/18 06:40 PM
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SouthernMoss Offline
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Originally Posted by Britefutr
there was a new study in 2013 that concluded that although symptoms of AS abait, the progression continues. They still don’t know why. I think there are other studies as well but I’ll just put a link to this one

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3974160/


Britefutr, I believe you are misinterpreting the study you linked to. This study actually provides evidence that TNF-inhibitors do reduce the odds of progression. If you look at the Results paragraph of the study, it says "TNF-inhibitor use significantly reduced progression when the gap between x-rays was more than 3.9 years." Previous studies had only covered 2 years or less, and AS is such a slow-moving disease that 2 years was not enough time to see the effect of the TNF-inhibitors. So this study extended the timeline for a longer period of time and was able to show that TNF-inhibitors make a significant impact, even more so when TNF-inhibitors are started early.

There is a video on the SAA YouTube channel where one of the authors of the study you linked, Dr Michael Weisman, discusses this study. You can view the video here: https://www.youtube.com/watch?v=KfYPu6T32kU . Go to the 57:54 mark to see his discussion of the 2013 study.


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic
Re: Struggling with every option [Re: awesomeman] #280707
07/05/18 06:44 PM
07/05/18 06:44 PM
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SouthernMoss Offline
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Britefutr makes a good point about the effect of DMARDs. Awesomeman, are you taking methotrexate, sulfasalazine, or something similar?


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic
Re: Struggling with every option [Re: awesomeman] #280711
07/06/18 04:22 AM
07/06/18 04:22 AM
Joined: Nov 2007
Posts: 459
St George, UT
Britefutr Offline
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Thank you SouthernMoss, I don’t think I articulated that very well. I do see in the summary at the beginning that it states there was only a 50% chance of stopping progression. And then further on in the study it talks about their data and the type of progressions they saw. I know there are other articles out there to the got slightly different findings. Thanks for pointing that out laugh

It also shows data on the effect of how early treatment with anti-TNFs started, effects of smoking, and I think other things. I hadn’t actually read it in awhile, it was an article that I downloaded some time ago.


Sebeth
---------------
AS onset at age 13, finally diagnosed in 1989, age 22!
Currently awaiting Cosentyx.
IBS, Polycythemia Vera, Anticardiolipid Syndrome,
Myositis, Adrenal Insuffiency, Asthma, etc...
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