I have Mast Cell Activation Syndrome on top of the PMR. Seems that I probably have had it for a long time - but getting viral pneumonia in Dec 2018 along with the meds for that - just made it truly haywire!
Do I have been happily reducing over a long time to around 5.25 and although I felt fine my neck and the bones in my upper arms had been sore for a while - I put it down to pillow issues.
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Then I became ill two weeks ago with some virus - for a moment wondered if I had caught the dreaded lurgy. Apart from two days of feeling just awful, sleeping and fever - for the rest after that I pretty much felt like I did when having glandular fever.
After initial few days of illness - I went up to 7mg for 3 days and because I had started acting all over. I then tapered down again but just don’t feel right.
Could getting a virus make PMR flare? I am so desperate to get off pred.
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Slosh
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I couldn’t begin to advise on your complex condition. I just wanted to express my sympathy for all you have been through and the development of another autoimmune condition.(I needed to look it up).From personal experience viruses do impact negatively on the management of PMR often resulting in a higher dose of Pred and the cessation of a taper. What I would need doctors to explain is the impact of mast cell activation on my general health and the management of my PMR.
I remember you from way back when, I have been on here since 2016. Wishing you everything that is good Slosh. 🌻
You can take a higher dose for up to 7 to 10 days and drop back to where you were before. The usual advice is to add 5mg to where the flare occured for a week - though that is mainly when you overshot the dose you need. It is difficult to know how long the effect of an infection might last though.
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