RA and neuropathy: My daughter is 3... - Cure Arthritis Co...

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RA and neuropathy

Vepperson
Vepperson

My daughter is 30 and born with a genetic disorder. She was diagnosed with JRA at 12 and went into remission at 19. 2 years ago it came back. They have slowly maxed her out on methotrexate and several other medications that side effect is helping RA. The past 2 months has been horrible. She just had her 3rd orencia infusion. She has now gotten neuropathy and not in her extremities it is her shoulders, upper arms, chest and upper back. They started her on duloxetine and the same day her GP said her labs came back with slight muscle break down. It is overwhelming and she is miserable. Anyone else been down this path?

3 Replies

Hi, I had been diagnosed with RA at a very young age also. I’m now 48. I am I on a plethora of medications and it took years before my Rheumy finally found the right combo to where the pain is bearable. Staying active , although in a lot of pain, helped me a lot. Also my doctor refers to it as “triple treatment” has helped too. Tell your daughter to stay active and positive and never give up. I know where she at and I made it to the other side, she will too!!

Annette

You might be interested in googling katy hoogendam who had jra from 6 months old and grew up with walking aids. She started a whole food plant based diet with daily yoga a couple of of years ago and is now living a relatively normal life. I'm not sure she's off all her meds but has certainly reduced them.

I worked out for years and then this migratory RA hit me like a ton of bricks. Thought it was caused by my weight training. Well it wasn’t. And it took me about 8-10 to finally go see my doctor who came up with nothing that helped and finally I went to a specialist which I recommend to anyone who has this crap. I started out with methotrexate and folic acid which helped somewhat, and then Humira . Which it may have helped some but at the same time I started etodolac 400 mg an anti inflammatory. And then there have been no flare up since. So I would try the etodolac with your other meds first. Because I was in serious pain at times that paralyzed the joint affected and I mean to tell you that this pain was a 12 on the 1-10 scale. I’m 55 now and pretty much pain free for about 3 yrs. Hope this helps someone.🙂

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