I am now tapering down monthly by one milligram . Working down to 7 at present .Have been fortunate in not having excessive pain , but after a few reasonably good spells I am currently SO weak SO wobbly and dizzy...sleeping badly . Went for short walk the other day looking as though I had had one too many as I was weaving down the pavement.Had to return swiftly as I thought I might pass out .Have had numerous checks for possible other conditions, ( ( all negative ) but I still worry there could be something else going on . 10 minutes with the GP hardly allows for discussion and possible diagnosis . Do others have this problem ..Is it the condition or the result of steroid intake .Have already been put on eye drops as due to medication the pressures are far too high . What has happened to my hitherto wonderfully energetic existence .I may be 77 but two years ago I was whizzing about on an Indian holiday .
Tiny_ Tim
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Tiny_Tim
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Thanks for the reminder Soraya. I have read this and absorbed about 20%. Clearly your brain is sharper than mine. I am finding your posts really useful!
I am at exactly at the point you are at and I am feeling very similar. I had to get my husband to collect me from the shops the other day because I thought I was going to fall over. Having said that, I waited for him in a cafe and had a green tea. By the time he came I was completely recovered. In years I am a lot younger than you but numbers are pretty meaningless.
My theory is that we are experiencing low Cortisol levels because our own Adrenal Glands are just beginning to start working again. However, to be on the safe side I would visit my doctor and ask for a Synacthen test, to see if your Adrenal Glands are capable of working again. I have been told that it is pointless until I am at about 4 mg. But this is ridiculous isn't it?
I revived myself by taking an extra 1 mg in the afternoon twice ''this week. But is this just postponing the inevitable?
This feels like the unmapped bit. Let me know what happens to you.
Tiny Tim, join the Club of us fellow PMRers who get weak, dizzy wobbly and who sleep very badly. It is not unique. I am on 3.5mg and am slightly dizzy most of the time, so I don't drive. It also feels as if walking on floating jelly sometimes, like there is nothing solid underfoot. Same age as you, but I've had PMR for 9 years. Learn to pace yourself, not to do anything strenuous and also be sure to hold the handrail on stairs, keep obstacles out of the way of your feet at home, small furniture, rugs etc. I cannot tell you that this too shall pass but it is something we learn to live with and adapt to. Two years ago on 5 mg I was hill walking in Norway. That 5 mg was fine until the last day of the holiday when I relapsed. Had overdone it! I remain hopeful that one day it will be all gone :))
Thank you for your encouragement ...I am only about 18 months in , so sort of learning to cope and manage the illness, but sometimes find it difficult to believe that side effects from the condition and also from the steroids can cause such havoc in my body.
Like the others I would be inclined to suspect your adrenal function is lagging behind your pred reduction. Slow down the reduction (don't go any further is what I really mean) until your body has caught up. And don't do anything stressful - that covers a range of things, including physical exertion - for a bit.
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but it is something we learn to live with and adapt to. Two years ago on 5 mg I was hill walking in Norway. That 5 mg was fine until the last day of the holiday when I relapsed. Had overdone it! I remain hopeful that one day it will be all gone :))
Will I ever be off pred with GCA?
I am off Pred since April, but do I still have PMR?
How should I treat broken skin on my arm please?
Issues with getting suspect spots frozen off skin?
Is the fluey feeling, with prickly skin that I get every afternoon from PMR or prednisone?
