Previous Thread
Next Thread
Print Thread
Page 2 of 2 1 2
Re: Struggling with every option [Re: awesomeman] #280783
07/17/18 08:12 AM
07/17/18 08:12 AM
Joined: Sep 2007
Posts: 1,547
Wisconsin
J
jewelz Offline
Registered Visitor
jewelz  Offline
Registered Visitor
J
Joined: Sep 2007
Posts: 1,547
Wisconsin
Hi awesomeman

I was put on Humira, eh - not much of a response, then Enbrel = allergic reaction, then Remicade - higher doses at increasingly shorter intervals to get a so-so response then I got very ill with various issues including shingles and rheumy decided Remicade wasn't worth it/also developed a heart rhythm problem. Back to Humira - still nothing. Then onto Orencia - which has helped me the most and have been on it I believe since 2011 or 2012ish? Have had several health issues and had to go on and off it and still seems to be OK.

So, don't give up. You just haven't found your correct "juice" yet.

I used to take MTX with my biologic but due to other issues can no longer take MTX or other DMARDS. Haven't taken any DMARDS since 2013 and doin' ok without them.

Every person's body, situation, genetics, etc is all different. What works for 1 will not work for another. What works for most will not work for everyone. You are an individual and need to find what will work for you.

Good Luck!

Re: Struggling with every option [Re: awesomeman] #281154
08/26/18 10:26 PM
08/26/18 10:26 PM
Joined: Dec 2006
Posts: 87
Toronto, Canada
Judy N Offline
Registered Visitor
Judy N  Offline
Registered Visitor
Joined: Dec 2006
Posts: 87
Toronto, Canada
Originally Posted by awesomeman
... 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.


Same here. On Humira weekly for 12+ years: Initially helpful. But during the last few years, overwhelming fatigue like if you've taken a sleeping pill & brain fog like being anesthetized. Zero energy and difficulty thinking and talking - just like being immediately post-op. Pain was strong w/ constant headaches and intestinal pain and needed Oxy & Percs to be able to get out of bed. And constant UTI's. Could eat only bland food due to gut pain. Ultimately poor quality of life for past few years.

Went off the Humira 3 months ago and 'woke up'. Lots more energy, brain fog lifted - felt great! better than I had in years. Pain was mild and even had some pain free days! no more UTI's --- until a month ago, then the pain became totally unbearable. Unable to walk - barely able to get to the bathroom, then back to bed. Blinding headaches. Pain meds didn't help much at all. Zero quality of life.

Doc put me on Simponi - took first shot today. Fingers crossed that it works, because this disease has me at the end of my rope.

I have AS w/ Crohns so very few treatment options. Can't take any anti-inflammatories, and few biologics treat both. Tried 1 infusion of Remicade 13 years ago - it did nothing helpful --- but dropped my already low blood pressure extremely low and made my heart pound.

I'm thrilled and hopeful for all sufferers who've gotten relief from their treatment plan. I wish I could join them with my own success story.

Hang in there *awesomeman*, hope the Simponi will work out for you and me. Something has to work sooner or later. There's new stuff coming down the pipeline regularly and everyone reacts differently re effectiveness and side effects. Best of luck to us all.

-------------------------------------------------------------
AS w/ Crohns - diagnosed 2005 - HLA b27 Negative.
Back pain since childhood: 1970s. Cousin has AS. Mother died from AS complications.
Just started Simponi. On Humira weekly for 12 years.


Revelation 21:4
Re: Struggling with every option [Re: awesomeman] #281161
08/27/18 03:51 AM
08/27/18 03:51 AM
Joined: Mar 2016
Posts: 522
S
sdot Offline
Registered Visitor
sdot  Offline
Registered Visitor
S
Joined: Mar 2016
Posts: 522
I wish you the best with the Simponi. I am on it and it is good stuff. For me it may be wearing thin, but when it's working it's super. I guess, it's all about getting back on something that works and changes your life for the better.

Re: Struggling with every option [Re: awesomeman] #281215
08/29/18 06:39 PM
08/29/18 06:39 PM
Joined: Dec 2006
Posts: 87
Toronto, Canada
Judy N Offline
Registered Visitor
Judy N  Offline
Registered Visitor
Joined: Dec 2006
Posts: 87
Toronto, Canada
Thanks for the words of encouragement, *sdot*. Obviously it's still to early to tell how well Simponi will work for me, but I'm not feeling all groggy like i did with the Humira injections. Fingers, and toes, crossed!!


Revelation 21:4
Re: Struggling with every option [Re: awesomeman] #281220
08/29/18 08:18 PM
08/29/18 08:18 PM
Joined: Mar 2016
Posts: 522
S
sdot Offline
Registered Visitor
sdot  Offline
Registered Visitor
S
Joined: Mar 2016
Posts: 522
Simponi was very good for me, the shots are painless with no reaction, relief was good. So hopefully it does work.

I also find beer works good and after a few you forget you have AS, as far as I can remember.

Never give up hope.

At least if you don't give up, I don't feel as bad when I do wink

Page 2 of 2 1 2

Moderated by  ElinAslanyan, RyanMiyamoto 

Powered by UBB.threads™ PHP Forum Software 7.6.1.1