What is the best starting dose - Newly Diagnosed
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I've been diagnosed with PMR, after floundering around for answers for the pain that suddenly came on a year ago. Prednizone suprisingly was the clue as I had poison ivy and took it and all symptoms disappeared. Just recently had to go off it again and symptoms all returned. I've tried to educate myself on this by reading forums, online texts, the links on this group, and alot that Eileen has posted. My rheumatologist wanted to start me on 10 mg of prednizone but I insisted on 5 which put the pain "in the background". It did not appear to do enough of the trick so now I am just today upping it to 10 mg. I note that most recommendations suggest 15 mg of prednizone but I really worry about weight gain as I am so hungry just on 5 of pred. The pain disappeared on 30 mg (for poison ivy) but that seems way too high. I hate having to experiment like this. Is there a good book I should read? I see my rheumy in two weeks for new blood tests but I want to be well prepared. By the way, I also have hypothyroidism, hypoglycemia, and osteoarthritis. I try to stick to the Paleo diet but still am gaining weight. I was so active before and I hope to get back to running and mountain climbing. Gave up weight lifting after 30 years! I'm 63 and refuse to let this stop me! Thanks for any input and help! I love finally getting some answers.
0 likes, 14 replies
tina-uk_cwall artfingers
Posted
we all worry about the side effects of prednisolone. But attempt to reduce your carbs, that helps abit with weight gain. Many of us have put on weight but as the doses reduce so does the side effects.
i don't like the fact that I put on weight, etc, etc, but as far as I'm concerned I now have my life back, yes, not the complete life I use to have, that will come later when the auto immune condition hopefully goes into remission, but for now I have very little pain and can do most things, things I most certainly couldn't do pre diagnosis when my life temporary stood still due to the pain and stiffness.
all the best, tina
Nefret artfingers
Posted
The method then is to reduce your dose slowly enough to ensure that the inflammation is held - too fast or too big a reduction can cause the inflammation to break through again which often causes problems as you may need to go up beyond your starting dose in order to hit the inflammation again.
Side effects - yes, steroids have many, so does paracetamol or ibubrofen. As with those, no one person gets them all, a lucky few get none. The side effects will disappear as the dose reduces. The weight gain can be minimised by effective diet - low carb is usually suggested.
Vigorous exercise is not usually suggested, putting muscles which are already painful and inflamed under even more stress does not help at all. It would seem that all of us were very busy and active people and the weakness is part of a very frustrating condition.
Hope this helps.
EileenH artfingers
Posted
I appreciate what you are saying - but maybe a week at 10mg and then reduce 1/2mg a week to find the lowest dose that manages it might work? If 10mg is enough for you there is no reason to go higher but 5mg is obviously not quite enough. It also helps to get all the stored up inflammation properly cleared out - but if it isn't long since you stopped the pred for poison ivy it maybe isn't too bad. The earlier in the morning you can take the pred the less you should be able to manage with - the cytokines that cause the inflammation are shed in the body at about 4.30am. The ideal time to take the pred to avoid morning pain/stiffness is 2am so it peaks in the blood at 4am but a lot of people find when they wake to go to the bathroom is early enough and then they settle down for another hour or two by which time it is working.
I'm sure you'll have seen this
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
and if you go to the PMRGCA NE link they have a book - though whether you will learn much more than you've already learned from my posts I don't know since I wrote much of it! I'm assuming you are in the US (prednisone and poison ivy?) but they do ship it abroad.
What carbs do you include in the Paleo diet? I don't know enough about using it to be sure - but avoiding starchy vegetables might help the hunger pangs. You say you are hypoglycaemic - how do you sort that using Paleo? Pred changes the way our bodies metabolise carbs and you may be finding that you are still triggering too much insulin now you are on pred so your BS is plunging and you are hungry as a result. I don't eat Paleo proper but predominantly non-starchy veg and meat/eggs/fish - it is only when I include more starchy food that I feel hungry afterwards. It is a massive problem to adjust your diet when you have been very active as you were so could eat lots more. That happened to me when PMR started - it wasn't due to pred I put on weight but lack of exercise because I couldn't! I put a lot of weight on with one form of pred but have now lost almost all of it - a bit to go to get to pre-PMR weight but the pred weight has gone.
But honestly - being cuddly and pain-free is far preferable to being in constant pain. You are still the same person underneath and they won't disappear whatever pred may do to it in the meantime!.
artfingers
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EileenH artfingers
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I have to say - not sure he'd REALLY like to live there - though he'd get better beer for his pub in the cellar (that's where the beer is meant to be, not the pub). I don't live there any more...
lodgerUK_NE artfingers
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If so, send me a PM with your email address and name and I will forward it to them and theirs to you.
gail2910-US-MI artfingers
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artfingers gail2910-US-MI
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EileenH artfingers
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gail2910-US-MI artfingers
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pauline36422 artfingers
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so guess i was very lucky and i have been on pred for 3 years now down to 4.5
artfingers
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gail2910-US-MI artfingers
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EileenH artfingers
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Don't believe all you read in books that tell you how autoimmune disease works - there is a lot of woo out there! Could you pm me the link - I'd like to have a look.