Rheumatoid arthritis: How do you cope day to day?

@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.

@susanlf
Hi Susan. Good luck with your results and your appointment with the endocrinologist. It is so frustrating and disheartening when the the doctors do not have answers. I hope you get some relief from your pain soon.
It is so difficult when you are on medications that don't relieve pain, which in fact leave you feeling worse. I understand as I have been there. I am still in search of a doctor who can tell me what my diagnosis is !
I have mild hypogammaglogulinemia, but otherwise my bloodwork is normal. I have fibromyalgia, off and on widespread pain to different joints and muscles throughout my body. I developed hypothyroid at 40. Just this past Dec. had a right hemicolectomy. Cancer was found in my caecum. Luckily it was found early after me complaining to doctors for 2 1/2 years. Pet scan clear so no chemo or radiation. So I am very grateful for that. With the way I am feeling I have no doubt that there is something autoimmune going on in my body but I have not been given any answers. My immunologist is monitoring me but I am at a loss as to what to do next. With my ANa and sed. rate and CRP all within normal my PCP has not referred me to a rheumatologist. I'm thinking that is my next step.

@leanne004 I sympathize with all you're going through. It's a pretty wild ride. In my experience, it does take a rheumatologist, and a good one at that, to diagnose. One doctor, an orthopedic surgeon I was seeing about getting a shoulder replacement, thought I had a ganglion cyst on my wrist. He didn't even notice that my entire hand was swollen like a baseball glove, I later found that's a classic sign of psoriatic arthritis. (I ended up choosing a different surgeon, haha). The rheumatologist recognized it just by looking. It's so good to have a diagnosis and to know what you're dealing with. I do hope you find the answers you need. Kind regards, LL

@llmartin I can sympathize! I’ve had rheumatoid arthritis for 30 years. Over the last three years, I have developed an erosive osteoarthritis, something that can be diagnosed definitively with a simple hand x-ray . But my previous rheumatologist missed this diagnosis. While under his care, I “failed” on about three RA biologics, because RA meds do not treat erosive osteoarthritis.

I now wonder if the drugs I “failed” on might be brought back into play for my preexisting RA. There are only so many RA drugs out there. And I’ve been at this game 30 years so I’ve run through a few.

Honestly, I think the underlying problem was the guy was not particularly good at listening to his patients. Nose in the labs kind of guy. Mistrustful of what patient say. If I had had more options, I would’ve run.

We so deserve rheumatologists that listen to us carefully and take what we are saying seriously. That is worth 1000 lab results. And, In my experience, these qualities are hard to find.

The good news is my new rheumatologist fits the bill. And, you can bet I’ll hang onto my relationship with her. I feel blessed.

@llmartin I can sympathize! I’ve had rheumatoid arthritis for 30 years. Over the last three years, I have developed an erosive osteoarthritis, something that can be diagnosed definitively with a simple hand x-ray . But my previous rheumatologist missed this diagnosis. While under his care, I “failed” on about three RA biologics, because RA meds do not treat erosive osteoarthritis.

I now wonder if the drugs I “failed” on might be brought back into play for my preexisting RA. There are only so many RA drugs out there. And I’ve been at this game 30 years so I’ve run through a few.

Honestly, I think the underlying problem was the guy was not particularly good at listening to his patients. Nose in the labs kind of guy. Mistrustful of what patient say. If I had had more options, I would’ve run.

We so deserve rheumatologists that listen to us carefully and take what we are saying seriously. That is worth 1000 lab results. And, In my experience, these qualities are hard to find.

The good news is my new rheumatologist fits the bill. And, you can bet I’ll hang onto my relationship with her. I feel blessed.

@sweetundine I have RA, osteoarthritis and erosive osteoarthritis. My rheumatologist is dismissive and shrugs off the erosive and osteoarthritis because there's no good treatment for those I am allergic to NSAIDs and RA drugs have not helped. I have found that since I started Low Dose Naltrexone, the symptoms of all three are improved.

@jdnc2023 How long have you been taking LDN? I started about 2 months ago. I'm not sure if it is working yet.

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.