Rheumatoid arthritis: How do you cope day to day?

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.

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?

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!!!

@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!

@jw9
hi, did you ever find out about the shortness of breath? I started experiencing it a few months ago.

@ne11
Like most everything; symptoms come and go. My shortness of breath is related to fatigue. I talked with my rheumatologist when my labs came back. Because of autoimmune problems with my blood I have large red blood cells. My rheumatologist suggested the Folate. It's been several weeks and I am feeling a little less fatigued.
I've often said I can deal with each thing that comes up, I'm just grateful it all doesn't "fall apart" at once!

@jw9 Yes, I feel you. My attitude is very much the same. Dealing with each thing that comes up. Hugs!

@susanlf
Hi Susan,
I'm sorry to hear you are in so much pain. I am a retired RN. I have had several friends that have had the reverse shoulder replacement. They both said that the pain was much worse with the reverse surgery. maybe just run that by your surgeon.
I wish you all the best. Please keep us updated.

@leanne004
Hi Leanne! Thanks for taking time to comment. If I was only dealing with aging and the need for a reverse total shoulder replacement, I would be fine. The surgery itself and PT afterwards have been very good. My issue is with my body’s reaction to the shingle shot 6/11/24) and 20 months of horrific resulting pain. I was put on prednisone, methotrexate, Kevzara, Humira, and meloxicam and received zero pain relief. My shoulder bones continue to deteriorate and my hands scream with pain. My rheumatologists are clueless. My two eye doctors are concerned about possible GCA. My recent lab work showed Sed rate of 59 (0-15 range) and CRP of 0.7 (range of 0.0-0.5). My primary agreed to labs of IL-6 which were drawn yesterday. No results yet. I see an endocrinologist next week.

rheumatoid seems to cause more n more issues, now its my thumbs I used a disability scooter but trying to drive it with those stick type controls my hands suddenly dont like it , it hurts. just using my thumbs hurts . being bipolar I always over do itand boy do I pay for it , ( not that I wasnt tired to start with . its a real mix.