Male, 71 in my 5th year of PMR, mostly at around 10mg Pred. (We men don’t all have an easy time!) Having a bad flare at 6mg after DSNS reduction since last year. Rheumy agrees with increasing pred as per many suggestions on here, few days on 10 then back to 8, but has given me info on Sulfasalazine and Azathioprine to consider.
Anyone have any info as to whether either of these may be useful? Had most of a year on Methotrexate, but when I had to stop because of shingles I realised how grotty it was making me feel, guts-wise, and didn’t restart.
Thanks
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Roltuba
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Its always worth asking! Its a big decision. Gathering as much information as possible is important.
Hi roltuba, i had to look them up as i had never heard of them, but i hope you dont mind me distilling that info.
They are both dmards so come with the usual issues that immune suppression brings. Both used for various forms of arthritis and other chronic autoimmune conditions. PMR isn't mentioned on the following links. Sulfasalazine looks harsher on tummy. But two sides of the same coin i would think. And same class of drugs as methotrexate. I take mycophenolate a dmard which has no record of being "successful" in treating PMR. I have been on it 18mths after flaring at 8mg. I have got down to 6mg as you did on mxt. Rheumy leaving me at 6mg for now. I dont seem to suffer any side effects. Sometimes I am not sure it does anytbing, but twice i have forgotten a dose and i do feel steroid wearing off more quickly. I am not sure what i would do in your situation as i am not sure whether i would start the dmard again! My crp/esr controlled at moment and no pmr symptoms beyond what i had at higher doses of pred.
Perhaps a quick search in the rheumatoid arthritis, a celiac or crohns forum might mine you some anecdotal evidence of side effects etc.
Hi, I can relate to your story. I'm also in my fifth year, nearly 63, and not having a good time of it. Currently on 11mg of pred but in constant pain. I have tried Azathioprine and it made me very ill with flu like symptoms. Good luck with what ever approach you take.
I keep thinking I should up the press but I’m getting some relief from taking Zapain (codeine and paracetamol) which is not supposed to help with PMR! I currently waiting for an appointment for an MRI scan as rheumy wants to rule out Avascular Necrosis. It’s not just the pain that’s getting to me I’m getting fatigued very quickly and not sleeping well at all.
Hope the appointment for scan comes quickly. Not much fun when you feel really fatigued and also not sleeping well. Do hope you will get some respite and good advice soon.
Hi. Thank goodness someone else had flu like symptoms on Azothioprine. Felt I was on my own. Have only been on it for 4 months and every bone in my body hurts. Legs so heavy can hardly walk. Today I decided to listen to my body and come off it. I’m tapering on my prednisilone 1mg a week until I get to 10 mg for GCA. Then await instructions as how to come down from 10mg. Has anyone else had acute muscle pain and extreme fatigue. Thankyou
My brother had a hard time too. He was on pred more than 7 years and also reacted badly to methotrexate, causing him to black out and end up in hospital twice. He took what he hopes is his last pred earlier this year. His fingers are still crossed. Good luck.
Many warnings including not to be taken if pregnant as passes through to the placenta and is also found in human milk - Wiki claims 'safe for baby'...!! Can interfere with sperm potency and cause temporary infertility. Can cause liver and also renal damage - which has the possibility of being severe.
Do those include the links I gave that suggesed there is no good evidence they make any difference for most people?
It took me over 4 years to get below 10mg at all and most doctors would be happy at an 80 year old who was managing well on 8mg which is, when all is said and done, a physiological dose, similar to the amount of corticosteroid the body produces anyway.
I tried Sulfasalazine but it made me ill so had to stop,not tried other one.x
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