Rheumatoid arthritis: How do you cope day to day?

Posted by jshaw1663 @jshaw1663, Jul 13 9:15pm

I having been seeing a Dr. they first done exray and said I do have it. Went to arthritis Dr and my numbers are not showing. I take methotrexate injections once weekly I also take plaquenal and cymbalta and it seems to be getting worse. One hand and joints hurt more on left side. I am so tired I can’t get going. I wake-up as tired as I went to bed. When I do stuff flower bed and do house work I’m exhausted. But my arm sometimes from elbow down just aches and lots of more stuff. I am anemic and this time she said my platelets are low and few more things were low. Somebody please talk to me. Now she is sending me to Ochsner‘s in Louisiana

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adlttl123 | @adlttl123 | Nov 8 9:26pm

Boy do I hear you!! I have Rheumatoid Arthritis also and Sjogrens and Lupus. But. I’m thinking with you that being anemic alone will make you exhausted!! Did that doctor give you iron?? With RA for me it has been a new day every day. I was diagnosed many years ago and have been on many of the new drugs to treat it. Thank God that we have them. But there are side effects as we all know. Right now I’m on RINVOQ and it’s really working well better than any drug that I have taken. Sometimes it takes time in the beginning to get your meds right. I’m so so sorry that you’re struggling so hard. It is a life altering illness for sure. There is no way that I could work in flower beds with RA the aftermath is not worth it. It requires a lot of rest for me and avoiding all the stress that I can. Hard I know. I haven’t heard of the place that you are going. Don’t forget about Mayo Clinic. Please keep us posted we really do care and you can write to me anytime and as much as you want. Diane.

susanlf | @susanlf | Nov 9 4:31pm

Hi. New to this post. Feeling like I was 19 until I took Shingrix shot 6/11/2024. Almost immediately severe pain. Diagnosed with RA/PMR/SeroNeg by two rheumatogists. CRP, etc high markers. Prednisone, methotrexate, kevzara, humira never lessened the 10-12 range pain. Then I was told I do not have that trifecta. Concerned about pain/inflation>joint deterioration>joint destruction. 16 months later, left reverse shoulder replacement just done 10/29/25. Right shoulder is failing very fast so it will be replaced asap. I feel like I am 119. I did not age into this; not a sports injury. Purely Shingrix. I am in touch with GSK but don't expect any answers. I will contact CDC and HHS. I just want to find a name for the deterioration and a way to stop the pain. Anyone else had the unfortunate opportunity to be in this terrible position?

lindaadele | @lindaadele | Nov 10 2:00pm

I really don’t have a answer for you but I was thinking that possibly physical therapy could help some of your pain you never know it can’t hurt to try it can’t hurt to ask doctors would they think. I wish you all the best of luck and I hope your pain gets better and better each and every day!!!

susanlf | @susanlf | Nov 10 2:01pm

In reply to @adlttl123 "Boy do I hear you!! I have Rheumatoid Arthritis also and Sjogrens and Lupus. But. I’m..." + (show)

@adlttl123
Hi Diane, Thank you for your response. I have a rheumatologist here in Prescott and one at Mayo Clinic. Both are baffled as to what is going on. RA/PMR or not? I am not symmetrical as they think I should be. I will see my surgeon on Thursday and pray to God this reverse shoulder replacement will 'hold' and the inflammation will not cause further destruction to my bones. I am in touch with GSK, maker of Shingrix which triggered all this. My friend is on RINVOQ but my doctors will not prescribe it for me, as it has black box warnings. Now, Kevjara (which I took earlier this year and it tanked my cell counts), seems to have warnings as well. Always something!

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