Having recently been diagnosed with Ocular Myasthenia Gravis rather than the GCA it was thought to be for the last few years I sort of breathed a sigh of relief that there was now a definite diagnosis.
Big mistake as the PMR decided to flare I think. I’ve been at 5mg pred for 4 months but have got increasingly painful shoulders, very painful feet and Achilles (told it was probably plantar fasciitis), if so then I guess it may be due to increasing inflammation after coming down to 5mg. Now my hips are beginning to ache.
I’ve had a cold for a few weeks so I guess it may have provoked a flare? My question would be how much should I increase pred. Could I bump to 10mg for a few days to see if it improves and presumably I would then need to come down again at 1mg per month? Or if 10mg for a few days work then could drop to say 7 or 8 and then do the monthly reduction?
Hope that all makes sense. Having been on pred for 9 years and now at my lowest dose I’m reluctant to go up but there has to be a judgement in terms of quality of life.
Thanks for any advice
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Rancho
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So sorry this has happened Rancho. It does sound like a proper flare is building. I think either of your suggestions would help. Why not take the extra and decide on next steps when you experience your body’s response. You may need a while for this to settle, you are coping with the effects of a new disease, and the stress and worry this involves. Best wishes. Jane x
As Jane says either option would work, but make sure you feel okay on the increase to 10mg before you do anything. It really depends on how much tge flare has got a hold as to how quickly the increase can cope with it! And we can’t tell you that, unfortunately!
It sounds as if it’s been building for some time, so maybe the slower the better.
As long as you are only at 10mg for a week or so you can drop back to 5mg - except 5mg is probably too low, 6mg would be better. Even at 7mg you are in the physiological range - I'd be ecstatic if I got there!
But is increasing the pred in one go OK with OMG? What dose did you use for it and how did you do it?
Thank you all for your quick and helpful responses as ever.
The Neurologist prescribed Pyridostigmine for OMG which works by reducing the effect the antibodies are having on my eyes. It only works for 4-5 hours so I take it 4 times a day.
The infection that I think kicked off this pmr flare also affected my eyes because my immune system deflected to fight the infection rather than my eye antibodies so double vision came back. The Neurologist suggested putting up the pred to 10mg if it persisted but the double vision has thankfully receded. So it will be fine to go to 10mg and I'll see how it goes over the next few days.
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Dealing with a flare
Flare up?
Flare after Pred?
no pred. before an ultrasound? And increasing dose of pred.
Mistake with pred......doh!!
