TAB tomorrow, have been on 60 mg of prednisone for almost a week.
Posted , 17 users are following.
I feel like crap, I thought I had no energy before now I have less.. is the treatment worse than the problem? All pain is gone except head and eye. Just winded and tired... terrible headache dark circles under my eyes. I’m supposed to work Wed uggh.
0 likes, 20 replies
Michdonn linda04580
Posted
linda04580, I have PMR not GCA, but I would not be able to live a almost life without Pred. The side effects are horrendous, but I am go on. PMR had me in a wheelchair, with Pred I am looking forward to having a great ski season. Thinking positive, with a smile. 🙂
linda04580 Michdonn
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Michdonn linda04580
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linda04580 Michdonn
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GP Thought it was post viral SYNDROME and put me on medrol dose pack, symptoms improved, except eye, then came back two weeks later.
Referred to Rheumatology: put on steroids 60 mg per day and sent for biopsy today.
nervebyte linda04580
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hey linda I'm sure u feel like crap. I've had pmr now for almost 3 years. I too was up to 60 mg but much less now.
you have to be patient with yourself and believe that you will heal. belief is stronger than pred though the pred keeps the wolf away from the door. give yourself time and don't give up on exercise though that may be the last thing u may want to do. but do what u can. baby steps. i've almost cut sugar from my diet. for me it has been a trigger; also fried foods, white flour products and most packaged/processed food. suggest u intake lots of veg and legumes (beans, lentils etc). diet plays a big part of this. it's about change and your belief that change will help you.
....just sayin. take care!!
nick67069 linda04580
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Having said that, why do you suspect that your diagnosis is incorrect? Give us more details so we can comment more specifically.
patricia38799 linda04580
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Never heard of such a high dose of prednisone for PMR. I have had pmr for nearly 2yrs.started on 24mg for 1 week then 12 mg . now on 5mg.feeling good. Going to see Rheumatologist next week .I feel you shouldn't be on such a high dose All the best Dr Patricia
EileenH patricia38799
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3party linda04580
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I am not a doctor, but my excellent rheumy is. From what he tells me, and from my own experience, 60mg is crazy high. I started on 20mg and am now on 5 mg. If I were to take 60 mg, I'd feel like crap as well. My guy believes that most practicioners dose too high. I would say that's the problem. Cut back to 30mg. Hope this helps.
EileenH 3party
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EileenH linda04580
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If you had PMR-symptoms, which are a symptom of GCA for some people, then of course all that pain has gone at 60mg which IS a very high dose, far more than PMR symptoms require. If you still have a headache - maybe even 60mg is not quite enough. You are on the high dose to protect you from the spectre of loss of vision which, if you have head and eye problems is a very real threat. No doctor would put their patient on high dose pred without very good suspicion.
The side effects of pred may be horrible - but none is as bad as the possibility of going irreversibly blind.
linda04580 EileenH
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I hope all goes well. Again thank you all for your support
EileenH linda04580
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EileenH
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lilian05079 linda04580
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I do feel for you, hope you felt my hug! 60 mg is very high obviously your doc is erring on the side of caution. I feel that if you had inflammation in your head/eye arteries 60 mg would have eased the pain in a week...hang on in there until you have your TAB once you have a firm diagnosis perhaps your doc will reduce the dose. A friend of mine who is a patient with the same rheumy as i had, was put on 30mg before her TAB when GCA was confirmed, she stayed on 30mg for a few months then started tapering she is now on 5mg and is doing well...linda there is light at the end of the tunnel just roll with it, be strong and positive. Perhpas you couls ask your doc if you can take an analgesic for your headache and eye pain. My very best wishes for a firm diagnosis at your TAB appt.,tomorrow wether it be yay or nay.....