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I was diagnosed in 2018 RA tough time finding relief

Posted by gofishto @gofishto, 2 days ago

I was diagnosed in 2018 I’ve tried all the medicines currently on xeljanz praying this
One will help. My Dr said after this that I tried them all the last option would be heavy duty
Infusion. Two nights ago suddenly I got this rash started in face burning red travelled all way to my feet. No fever, Bp normal. Within about 40 minutes it was gone. Anyone have a clue ?

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gently | @gently | 2 days ago

One of the common side effects xeljanz is rash. I'm glad it went away after 40minutes. Another common effect is shingles. I hope it works well for you.

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jw9 | @jw9 | 13 hours ago

I want to tell you that I've been on "heavy duty infusion" for 10 years. I go to an infusion center where my rheumatologist's office is. I have an infusion of Simponi Aria every 8 weeks. I found that it's a healing place to go with RA. The nurses all understand the illness, there are also many people who are in the same situation and we respect each other. Some of my nurses are so funny I forget my "woes". I know it's working because I have had RA for 15 years and no progression to internal organs, no damage to my joints. I have more fatigue and pain about 10 days before my infusion appointment. So I always look forward to it. I never thought of it as "heavy duty". Hope this is helpful!

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2 replies
gofishto | @gofishto | 13 hours ago
In reply to @jw9 "I want to tell you that I've been on "heavy duty infusion" for 10 years. I..." + (show)
@jw9

I want to tell you that I've been on "heavy duty infusion" for 10 years. I go to an infusion center where my rheumatologist's office is. I have an infusion of Simponi Aria every 8 weeks. I found that it's a healing place to go with RA. The nurses all understand the illness, there are also many people who are in the same situation and we respect each other. Some of my nurses are so funny I forget my "woes". I know it's working because I have had RA for 15 years and no progression to internal organs, no damage to my joints. I have more fatigue and pain about 10 days before my infusion appointment. So I always look forward to it. I never thought of it as "heavy duty". Hope this is helpful!

Jump to this post

Thank you for your reply, I was on Simponi did nothing I all I was told this is the last one.!I see every now and then new ones coming out. I wish you well. Getting older certainly not for sissies.

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gmh1939 | @gmh1939 | 11 hours ago
In reply to @jw9 "I want to tell you that I've been on "heavy duty infusion" for 10 years. I..." + (show)
@jw9

I want to tell you that I've been on "heavy duty infusion" for 10 years. I go to an infusion center where my rheumatologist's office is. I have an infusion of Simponi Aria every 8 weeks. I found that it's a healing place to go with RA. The nurses all understand the illness, there are also many people who are in the same situation and we respect each other. Some of my nurses are so funny I forget my "woes". I know it's working because I have had RA for 15 years and no progression to internal organs, no damage to my joints. I have more fatigue and pain about 10 days before my infusion appointment. So I always look forward to it. I never thought of it as "heavy duty". Hope this is helpful!

Jump to this post

I am 85, had RA 10+ years primarily in hands, wrists. We have tried many RXs & biologics. Orencia infusions were the best for the longest (5 yrs) until it quit working. My Rheumatologist has been wonderful trying different solutions. Several other meds did not work but the last 6 months Actemra infusions seem to be good every 4 weeks. Progression did result in knurled fingers & enlarged knuckles. I have more fatigue and pain a few days before infusion. Hoping this is helpful.

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gofishto | @gofishto | 10 hours ago

Fatigue is bad I tried orenzia actmera,
Switch methotrexate to Leflunomide
I tried rinvoq it worked a little now is the xeljanz some relief I’ll take what I can get.

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