Newbie with concerns
Posted , 11 users are following.
I was diagnosed with PMR three days ago after 6 months of pain and wondering what the hell was going on with my joints and muscles. I couldn't even put my own socks on! This great Doc diagnosed me within 2 mins and I took my first dose of pren this morning (15mg per day). Within 6 hours all my pain has vanished. Such a relief. I know I have to take it for 2 years but that doesn't bother me. I have tried to find out if it will affect my alcohol intake. I can find no advice anywhere. One pharmacist said none and I laughed another said in moderation. As Christmas is approaching guess i will take the second opinion. Is there anything natural I should be taking to help the cure. and also to prevent the Osteoperosis? All advice gratefully accepted.
0 likes, 26 replies
constance.de glyn6942
Posted
Also, welcome to the club of PMR. Great place to be, isn't it? But we are a friendly lot and you will get all the advice/help you need on here.
Have a great Christmas. 🎄🍷
Constance.
glyn6942 constance.de
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iellen32 constance.de
Posted
Thank you for that - you are a blessing in disguise.
Cheers!
Happy New Year!
🎉🍾😊
Anhaga glyn6942
Posted
glyn6942 Anhaga
Posted
dan38655 glyn6942
Posted
I'm at two years now, and now below 5mg/day, but I have a ways to go yet.
PMR's core symptom is vasculitis, which is reducing blood flow to your joint's soft tissues, especially at night. Exercise tends to cause vaso-dilation, which counters the vaso-constriction of blod vessels caused by PMR's auto-immune activity.
You will be trying to reduce your daily pred dose, but will need to learn the somewhat time-delayed cause/effect nature of prednisone dosage and your pmr symptoms, while hopefully avoiding the most critical symptoms like sleep loss, fatigue and joint flare-ups that mimic common rheumatoid arthritis. I also went through a period of tender soles of my feet, so there are quite a few symptoms that may spring up over the next couple of years.
glyn6942 dan38655
Posted
tina-uk_cwall glyn6942
Posted
I don't know the reduction plan you have been advised but look up the Bristol pmr plan. 15mgs for 6 weeks, 12.5 for 6 weeks then 10mgs for anything up to a year. I took 10mgs for 6 months. Then I abandoned the Bristol plan and use Eileen's dead slow and almost stop reduction plan and only ever reduce by .5mgs.
You should definately be taking daily RDA amounts of vit d (I get that from my cod liver oil capsule), calcium and magnesium. These 3 supplements will help fight any bone loss caused by the preds.
i stopped taking omeprazole, which had been recommended by my GP to protect my stomach from the steroids. I now take yogurt, alpro almond milk (original, NOT sweetened, and only About 2 inches in a glass, and 1 slice of toast, That is plenty to protect and line my stomach.
also don't be pushed into taking alendronic acid unless you've had a dexa scan. Your bones may not be weak and therefore AA is not needed, plus the supplements will help to prevent any bone thinning.
you must not be tempted to overdo things on the days that you feel well because fatigue will set in and you will feel rubbish for days until your body has perked back up again.
when you reduce don't confuse withdrawal with a flare. Withdrawal is when your body gets use to a level of preds then throws it's dummy out when you reduce the dose. It will soon get use to the new lower dose and these pains will soon get better. A flare is when the level of preds is too low to keep the current amount of inflamation under control and hence the pain. If this happens when you have made a dose reduction and the pains get worse daily then that's the beginning of a flare and you should up your preds back up to the dose that you were comfortable at prior to the reduction.
any queries, do air them on the forum. There's more than enough of us that that have probably experienced your query too and can offer some advice.
just a word of advise, pmr is very unpredictable. Your road to recovery may not run smoothly, hopefully it will but it may not. Pmr cannot be cured and even when it is not active, it will still be there dormant. 2 years to achieve full recovery may be a little optimistic, I hope not but I it may be. I have been diagnosed with it for 2 years now but had the symptoms for 4 months prior to diagnosis. I have suffered one flare attempting a reduction from 9-8mgs this time last year. I started at 15mgs and am now on 6.5mgs, so even if I don't have another hitch it will still be a year before I reach zero.
good luck glyn. Regards, tina
glyn6942 tina-uk_cwall
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EileenH glyn6942
Posted
"I know I have to take it for 2 years" - if you are lucky, Five years is a more accurate estimate of the average - and that of course means some are longer, some are shorter. But the literature suggests that only about 25% of patients are able to stop pred in 2 years or less. Half take something like 4 to 6 years. Some of us take even longer.
There is nothing natural that has been reliably shown to help - the underlying autoimmune disorder that causes the symptosm we call PMR will probably burn out sometime, nothing has been found yet that speeds that up. many people include natual antiinflammatory foods such as oily fish, turmeric and garlic and so on and say it helps, I can't say I've found anything - although cutting carbs a lot does appear to help avoid weight gain.
In terms of osteoporosis - it isn't certain you will develop it because of pred and more than half of patients don't. You should have been given calcium and vit D supplements to take anyway. You should have a dexascan done to see the current status of your bones - and if it appears sensible because you are already osteoporitic or close to it maybe other medication may be useful. I take calcium and vit D - nothing else and my bone density didn't change over a period of nearly 4 years.
Here's some reading - including the "Bristol paper" mentioned and my slow reduction plan (in the replies):
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
When you've looked at it - come back with any specific questions you may have.
glyn6942 EileenH
Posted
Buon Natale
EileenH glyn6942
Posted
Living in Italy is a bonus in a LOT of ways - especially the weather compared to the UK. We live in the German speaking region South Tirol - so Frohe Weinachten!
glyn6942 EileenH
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constance.de glyn6942
Posted
It's cheaper to visit Germany than it is to visit the UK nowadays, so paying your own way wouldn't make too much of a hole in your pocket.
🎄🍷
EileenH glyn6942
Posted