Rheumatoid arthritis.

Thank you

Me too so far. At one point my local rheumatologist wondered whether perhaps my adrenal glands had been suppressed for so long that perhaps they no longer worked - symptoms of adrenal insufficiency could be mimicking my autoimmune condition. I thought to myself - what if I kept switching drugs and that wasn’t the problem and instead it was my adrenal glands?! So I attempted a slow taper to rule it out over 3 months but only lasted the 2 days off steroids completely to get to 7am on the third day to take the adrenal test and was so sick I had to restart back on 40 mg of prednisone to get things back under control. Good news was after 6 years of steroids, my poor adrenal glands haven’t totally given up and they still work lol. So it is simply that I haven’t found the right drug yet. Started Remicade yesterday, and I’m hoping this is it! But both of my rheumatologists have warned me that I may never be able to get off the Medrol, and I’m warming to the idea, because as of now, Remicade is my last option. Wishing you a continued active life 🙂

I think you meant folic not ascorbic acid? It’s true, MTX can have some undesirable side effects for some, but for many they adapt well to it and it can prevent the disease progression and damage that RA does.

Has your doctor mentioned low-dose Naltrexone as an option? (Not to be confused with Naltrexone used to treat alcohol and drug abuse - I always have to clarify that as we’re going over my drug list with a new doctor!) It’s another possibility and often tolerated well. Many start at 4.5mg. It’s a drug that you’ll have to get at a compounding pharmacy. I think it’s helping; others swear by it. I believe if you search within the Mayo forums, you’ll find other posts with additional info 🙂
https://pmc.ncbi.nlm.nih.gov/articles/PMC3962576/

Finally diagnosed with RA. Rf, ccp high in 2023 but no pain, so no RA at that time. Pain in knees, waking two miles one day, next day having trouble walking across the room. Primary did blood work, gave me prednisone for 5 days, worked great. RF, ccp, high again. Back to RA doctor, he told me no, need more than just pain in knees. Out prednisone, he took more blood to test for something. More pain shoulders, wrist after I left this Dr. Told to come back in one month, ugh. At 78 this was a big surprise, so I went for second opinion. Now diagnosed on prednisone until, flare up over. I also have BE, stable and MAI, stable. Also blind in one eye, meds are tricky to take, maybe sulfur he said. I guess I am lucky, I got this at 78. So all new to me, real eye opener.

My RA doctor put me on Folic Acid and it did nothing for the exhaustion. She suggested MethylPro, L-Methylfolate, 15 mg, 90 Capsules, one daily it really worked. I would come home from work and I litterly could not get moving. I would collaps in the recliner and I think if my house was on fire I couldn't have gotten up. I get them at my RA office, but you can get them on Amazon. Please ask your doctor first. Hope this helps.

These were my initial test results for RA. Pretty bad. Check on your blood work to see if your alkaline Phosphatase is high, that is inflammation. Mine was high for years and my initial primary care doctor just blew me off. So, I probably had RA long before I was finally diagnosed. Hope this helps

Hi:
Folate, a B vitamin plays an important role in the management of RA, particularly when on Methotrexate therapy. Methotrexate and Folate deficiency are common, as it interferes with the Folate metabolism which potentially leads to deficiency. In my experience, I did NOT learn this from my RA dr years ago, but my GP.
Side effects from Folate deficiency are nausea, vomiting, mouth sores, liver inflammation, and changes in my blood cells. Suffered horribly with all above and no longer tolerate suffering and stopped after 5 weeks without approval. Took me a while to recover. Hope this helps you.

My Rheumatologist told me to supplement with Folate (Methylated Folic Acid) and also gave me a prescription for Leucovorin to take once a week when I started Metho.

I just figured out that I bought a new lovely purse that I carry in one hand, like a small tote, and since the summer started I've been using it every day. My arm from the elbow down also is hurting all the time. I think I've figured out it's the style of handbag (versus one that I wear over my shoulder or a crossbody bag) that's hurting my arm. If it's just one of your arms and not both, just thought I'd mention it.

You really have your hands full! I have had RA, fibromyalgia, OA and Sjogren's for 34 years, none of which showed up on tests until the past two years. I have been on the drugs you named. At one time I was on Hydrocodone for 15 years. I didn't get addicted because I only took it when pain was unbearable (a 7 or up), so rarely daily use. I have family members with bipolar, as well, and my suggestion would be to see a therapist, both for support with bipolar and for help in dealing with the other things on your plate. It is very easy to get overwhelmed dealing with all that you are. I agree that a rheumatologist is far better trained and better able to diagnose. I also use progressive relaxation, both to keep the pain down and to sleep. I also have changed my diet to a Mediterranean diet, with emphasis on anti-inflammatory foods. I use pool exercises, which I got from PT. I have consulted with an OT, as well, to learn how to do things in a way that produces less pain and makes long term mobility possible. Sometimes tens units help, as do ice packs or heat packs, depending on what works for you. Our diseases are not things that can be easily treated and it often takes a team approach to get it right. Above all else, I listen to my body and when it says "Stop", I do. I can't say that I like stopping, because I don't, but it is better than the pain I will suffer and the long-term damage I may do by continuing. Please stay in touch and keep us updated. Be good to yourself, this is the only body you are going to get!