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Anyone ever try RINVIQ?
#284024 02/07/20 09:13 PM
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I welcome your advice on what to do.

My Doctor has asked me to enter another clinical trial - which is a study for "the effects of Upadacitinib (Rinviq) on people with Ankylosing Spondylitis". It was FDA approved last year for Rheumatoid Arthritis. The study is "to compare the effectiveness, safety and tolerability of Upadacitinib (Rinviq) to a placebo on reduction of signs and symptoms for subjects with axial spondyloarthritis".

I am conflicted on whether I should be doing this one.
The study requires many office visits, many blood tests, xrays, and a MRI. Its quit daunting considering for the first 6 months you don't know if you're receiving a placebo or the medication. Its a big commitment.

More than a year, I participated in a study for Taltz vs Humira vs a Placebo. I was going to quit after 4 months because I was in too much pain. I never knew what I was on those 4 months but rather than have me quit, I was allowed to take Taltz for which I took that for a year afterwards hoping it would suddenly work. It did nothing for me except make my liver counts go sky high. I only found that out after I asked for a copy of my blood tests. My Doctor didn't tell me as she wasn't worried because "it was the medication induced". Well, I got angry because I didn't agree with that being withheld from me.. So I stopped it and tried Humira for 6 months. My liver counts lowered somewhat but I still had no favorable response to Humira either so I quit that in October.
During that year and a half on Taltz and Humira, I ended up with a torn meniscus in both of my knees - one at at time- and then a root canal. Who knows if either medication was a cause or if it was just coincidental but I began to worry.

My AS is very active right now after 15 years in remission. I'm taking 6 sulfasalazine a day and a Prednisone when I feel like I need a break. As I type this, the soles of my feet are burning and tingling to where I dream of cutting off my feet. My achy hot back is starting to curve like it has not done the past 20 years since diagnosis. So I feel I need to try something. My Doctor thinks Enbrel wont work since its int he same "family" as Humira.

So- has anyone tried Rinviq in a study or for their rheumatoid arthritis?
Any thoughts?
Christie

Re: Anyone ever try RINVIQ?
CB in CA #284328 07/02/20 02:39 PM
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I would suggest trying Enbrel or Cosentyx. I’ve been on most biologics. A few did nothing, but Enbrel and Cosentyx helped me.

I also recommend trying Rifaxamin.

Good luck!

Re: Anyone ever try RINVIQ?
CB in CA #284405 08/16/20 02:19 PM
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Hi, that's a tough decision. What drug where you on when you were in remission for 15 years? Why did you stop? I'm not sure about the cost of drugs and access in America, as I'm in Europe but I would look for another drug to try, (not in a trial) if possible. Xeljanz is JAK inhibitor, like Rinvoq. Maybe you can try that? I was on Enbrel for 10 years. I developed really bad Psoriasis two years ago and have since tried Cosentyx, Xeljanz, Stelara, Infliximab, Infliximab w/ MTX, Infliximab w/ Otezla and I asked to go back to Xeljanz again, for a break, as it was the only one that did a little for my arthritis and skin. I'm about to start Simponi now. Still searching for one Biologic to work for both my conditions. Hope this gives you some insight.


Female, 30 yrs. Diagnosed with AS in 2008 - symptoms since 2007. Psoriasis & PPP since 2018 ∴ PsA ¯\_(ツ)_/¯
Re: Anyone ever try RINVIQ?
CB in CA #284406 08/20/20 05:55 AM
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I was on Plaquenil, sulfasalazine and celebrex. Those put me in remission. I still take sulfasalazine but not the other two and have been told i am too far advanced that they wont work like they did before. I now have small fiber neurapathy in my feet and the neurologist thinks the Humira did that as a "rare side effect". I ended up with Rosesca while on Taltz. Lucky me!

Last edited by CB in CA; 08/20/20 06:09 AM.

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