Advice on managing PMR.

As someone who has had PMR - along with other autoimmune conditions, I say that tapering is the key. Also, see an eye doc to check for glaucoma. Steroids are really bad for that. It can cause sight loss and you don't even know it.

Your lack of diagnosis puzzles and alarms me. Sulfasalizine is an anti-inflamitory that is broken down by the gut bacteria. It then turns into the mesalimine group that works on the gut. (Hence its use for Crohn's and Ulcerative Colitis ) And the other part works on the whole body as a anti-inflamatory- but not a very strong one by my standards. The symptoms for UC and Crohn's are faily distintive (mostly diarrhea) and aren't easily uncovered by blood work. The docs I've seen seem to prefer to go by symptoms over blood work or at least use a combo of the two. It might be time for a 2nd opinion.

Thanks for being interested in discerning my statement. Maybe there was an assumption of the reason I was on Sulfasalazine. But I do not have Ulcerative Colitis; I had undiagnosed autoimmune Celiac Sprue until 2016. Only in recent years have I begun having increased widespread pain, fatigue, bilateral and polyarticular arthritis that was unremitting since 2023. (It is not uncommon for those who are diagnosed with one autoimmune disease to have others.) Joint pain, and paresthesia is common from having a late diagnosis of Celiac Disease.

Luckily, I am being treated so far with Sulfasalazine that has reduced much the inflammation and swelling in my hands, feet and knees, although not completely removing all the pain. There is a likely chance I have SERONEGATIVE RA. The rheumatologist has explained to me that my being on the Disease Modifying Anti Rheumatic Drug (DMARD) Sulfasalazine will likely mask those blood lab markers, and they will not show in blood lab while I am on the med.

Treating the inflammation and progression of the disease and inflammation more important, than letting it damage my joints and tendons. Persons 75 years ago did not get that same treatment. Bloodwork and physical exams continue every 3-6 months. I am at risk for other conditions from Celiac disease despite being gluten-free, such as anemia from low vitamin B and Iron. I am fortunate as well to have started weekly 50,000 IU Vit D Rx when diagnosed with Celiac Disease because it caused me to have low vit d levels, and supplementation weekly give me normal levels.

Good luck on your journey too, I hope for better treatment and results for you!

Thank you for the additional info. If Sulfasalizine is helping you, you are wise to stick with it. I am curious as to what dose you are on. I was on 2grams maintenace dose, more if I needed it. The first diagnosis was UC, but 20 years later my small intestine started to have small ulcers and I had extra lab work and it was proclaimed Crohn's. (Same treatment). I went on Low Dose Naltrexone and it allowed my sm. intestine to heal and put me in remission. I really wonder if it would help you. Look it up. There is lots to read about it. I've been on it for 6 years now at 2 mg. Your positive thoughts are welcome.

Unfortunately, I am unfamiliar with UC and treatments, and I feel for what you are going through. Hopefully you are getting good medical treatment, and you will improve. I have heard about Low Dose Naltrexone used as a novel chronic pain treatment. I will ask my rheumatologist about his, thank you for the info.

My experience with LDN and pain relief is that it works on "non moving" pain but not the "moving" pain of PMR. It seems to work on the nagging ache all over that keeps you awake. But I think it is different for everyone.