April 4, 2017
I was recently diagnosed in December. 3 months into treatment I started to get a burning sensation and some swelling in my joints. My doctor prescribed Gabapentin and it hasn't seemed to help much. I was taking it as needed but this last appointment she suggested I take it nightly. I have tried creams, hot showers, hot/cold compresses. I was wondering if anyone else has experienced this and suggestions for relief. My Dr thinks it's time for a biologic, Orencia, is what she has in mind. I am a bit scared to start on a biologic so soon. According to my labs, I'm doing much better. But these symptoms prove otherwise. I'm wondering if I'll ever feel like my old self again
April 4, 2017
Hi Marthab. Sorry you are going through this. Yes, I am on Gabepentin 200 mg every night, but it is to help with fibromyalgia. The burning pain in your joints sounds like active RA to me, which is probably why your Rheumatologist wants to start you on a biologic. Are you on Plaquenil? Have they tried methotrexate? Is the Orencia in addition to other stuff? I am on Plaquenil and methotrexate and they also tried out several biologics, including IV Orencia, before settling on oral Xeljanz. Orencia worked ok, and made things better, but I finally got up the nerve to ask the doctor if all of these RA commercials on tv were real and you really could ride a bike, etc. He told me we could always strive for better as long as my bloodwork could handle it and we tried a few other things. For me, my choice and my focus has been stopping the progression of the disease because I know it can't be reversed and I intend to live a good long time maintaining my mobility. I know that isn't a realistic goal for everyone.
I have had this for 10 years and people look at me and say that I don't look sick. I take that as a compliment and know that I am incredibly lucky. Recently, I have had a significant decrease in my lung function which may mean the Xeljanz isn't doing the job it once was, or it may be something else.
Deciding on a course of treatment can be very stressful and taking the step to a biologic can be daunting. For me, it made my life better, but always in the back of my mind is the thought that I hope they tested them enough and I don't regret my decisions.
I hope you are able to find something that works for you and can also bring you peace of mind.
April 4, 2017
Hi marthab! I think your apprehension about starting a biologic is understandable. Ktinflorida shared some great insight in her reply. Really, one of the main reasons physicians want to start individuals on medications is to slow the damage done to the joints by RA. If you have questions, don't hesitate to let your doctor know and hopefully, she will discuss her thoughts on why she feels Orencia would be a good medication for you to start. Again, ktinflorida's "voice from the trenches" experience is probably more useful than anything I can suggest at this time! However, we do have a fair amount of information on Orencia on this site. Here's some information on the side effects and safety of Orencia -- https://rheumatoidarthritis.net/treatment/orencia-side-effects-and-safety-review/. Also, here is some basic information on the medication (how it's administered, how it works, etc) -- https://rheumatoidarthritis.net/treatment/orencia-reviews-how-well-does-it-work/. Just remember that you and your physician should work as a team to decide what's the best course of treatment for you and your lifestyle. I hope this helps and best of luck with your decision! Best, Erin, RheumatoidArthritis.net Team Member.
April 18, 2017
Thanks Ktinflorida! It would be an addition to the plaquenil and methotrexate. Im also trying to ween myself off steroids as well. It's weird because I asked the same thing. My Dr said sometimes it's more of a mental block than physical. But I know it's not. I used to work 3 jobs (by choice) and go to school and I was never exhausted like I am now. I am feeling much better, so maybe I could hold off on the orencia. We also tried sulfasalzine, but the side effects were too much for me. I Guess I'm just very hesitant since we were planning on starting a family and this kind of changed things. But I guess we will see what happens at my next appointment
April 18, 2017
I guess they warned you not to get pregnant on methotrexate, right? I think they want you off of it for 3 months before you can try.
If they tried Gabepentin for the burning, maybe they would try Lyrica. It worked for me for nerve pain but most people I know who took it gained a lot of weight on it. I had to get off of it.
If you are going to try for a baby, you are right, new meds maybe should go on the back burner. I have heard several people say that pregnancy put them in remission, but once the baby came, it didn't last.