Connect with others who understand.

  •   Learn from expert-reviewed resources
  •   Real advice from people who’ve been there
  •   People who understand what you’re going through
Sign Up Log In
All Resources Treatments A-Z Personal Assistant Help Center Crisis
Powered By
Real members of myRAteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Who has experience with Orencia?

A myRAteam Member asked a question 💭
Hurricane, WV

I have been on Orencia for about two months and I have gained a lot of weight along with developing water bags with blueness under my eyes. I have taken everything else on the market. I really think I am going to have to stop this. I took Xeljanz briefly and it was really helping but I was wiped out and found I had acute renal failure. I don't know it the drug caused it but too many freaky things were happening to me. I also chose Xeljanz because of recurring infections and the… read more

February 1, 2016 (edited)
 · 
Reactions

Answer Summary

Members shared mixed experiences with Orencia, Xeljanz, and other RA medications, with several reporting significant side effects including... Read more

Members shared mixed experiences with Orencia, Xeljanz, and other RA medications, with several reporting significant side effects including weight gain, recurring infections, kidney problems, and gastrointestinal issues that forced difficult decisions about continuing treatment. Several members found success with combination therapies, particularly Xeljanz paired with Leflunomide (also called Arava), while others mentioned alternative options like Medrol instead of prednisone or natural supplements such as milk thistle and turmeric to support liver health. A recurring theme was the deeply personal and unpredictable nature of RA treatment, where finding the right medication often involves frustrating trial and error, balancing infection risk against disease progression, and weighing quality of life against concerning side effects.

A myRAteam Member

After Enbrel and a slew of meds I can't remember I started Xelganz. I was a little better and then my rheumy turned me over to his PAand she added Lefunimide. That was even more effective. So now I take morphine30 mg 3x daily, hydrocodone 10mg 3x daily (for cervical stenosis and bulging disks in.my cervical spine) and the RA drug combo and it is my magic potion.

February 2, 2016
A myRAteam Member

Arava.was my lifesaver.too!

February 4, 2016
A myRAteam Member

Lefunimide is a very old remedy and I have to say in combination with Xelganz has been my magic potion. But my RA is moderate not severe. I am now dealing with hand and toe deformities. One side effect of Lefunimide is diarrhea and I did have that problem but cut the dose back to every other day instead of daily. That did the trick. Take care Vicky.

February 3, 2016
A myRAteam Member

I have been mostly off the strong drugs for two years because of upper respiratory infections and that's why I started Orencia. Within six weeks I had one of the worst infections ever. You just never know, do you? And they all take valuable time to experiment with. I never heard of leflunomide. What's another name for it.

February 2, 2016
A myRAteam Member

This is a personal disease. I don't think there is a drug that doesn't have such horrible side effects. O f o were you o would research natural resources. I take the liquid (/tinctures)/Milk Thistle and tumeric. O think that's what saved my liver and helprp the inflammation from all the drugs I take

February 1, 2016

Related Questions

View All
How My Service Dog Has Changed My Life With RA
My Perspective: What Has Rheumatoid Arthritis Given Me?
Living With Rheumatoid Arthritis: Diagnosis Has Transformed Her Into a Self-Described ‘Warrior’