Was doing great till reducing to 2 mg - help:)
Posted , 8 users are following.
I started at 20 mgs and started having a few problems when reducing past 5mg. Thanks to Eileen and Mrs. O posting the alternate method of reducing (old dose and drop to new dose 1 day a week until totally at new dose) I have been successful in getting down to 2mg with no issues. I kept to the "program" and am now at 1 and 0 mgs but for the past week or so have noticed increasing fatigue, stiffness and pain in my legs, butt, shoulders and arms. Not happy....
I read another discussion about reducing to 1 for 2 months, 1/2 for a month (I think) and 1/4 for 2 weeks. Would this be appropriate for me since I am having a bit of a flare or should I go back to 2mg.
I have the Camino de Santiago in my bucket list and really want to be well enough to give it a try next spring. Then to Italy. Maybe we'll run into you Eileen if we get that far north
Looking for advice from my wise fellow PMR friends. Don't know what we'd all do without you.
Many thanks, Diana
1 like, 36 replies
EileenH Mrs.Mac-Canada
Posted
And NEVER forget: you are looking for the lowest dose that controls the symptoms, not heading to zero whatever - if the underlying autoimmune disorder is still active, you will still have some inflammation developing if you try to go below that "lowest controlling dose".
There are flares from trying to reduce with too big steps - probably NOT flares of the PMR, much more likely to be too big a removal of pred and that is the purpose of the reduction plan: you take out the likelihood of steroid withdrawal pain so when pain reappears it is more likely to be the PMR still being around.
If I get to 2mg I may stay there a very long time! After 10 years of dealing with PMR and its spin-offs I have no desire to return to the beginning. Call me a wimpif you like but 2mg of pred at over 60 isn't going to stop me living a decent life. PMR could.
ALL the Camino de Santiago? You're nuts!
MrsO-UK_Surrey Mrs.Mac-Canada
Posted
I remained at 1mg for almost a year, mainly due to what I thought was sciatic pain from my hip to my foot, but I wasn't sure so didn't want to take any chances having finally got this far.
During that time, I also experienced what appeared to be a very sudden and major flare whilst on a riverside walk. The walk was abandoned and getting back to the car was purgatory, and I remember feeling so dowhearted at what to all intents and purposes appeared to be a big flare. However, it all resolved very quickly without any intervention, and I do hope you will have a similar experience.
Mrs.Mac-Canada MrsO-UK_Surrey
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Mrs.Mac-Canada MrsO-UK_Surrey
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EileenH Mrs.Mac-Canada
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I don't know - if the symptoms are controlled you may have done enough and it just will take a bit longer. Anything up to 5mg is a low dose, maybe a few days at 5, a couple at 4 and back to 3 might do the job and you might feel better in yourself. But rest in the afternoon and you will almost certainly get more out of the day and feel altogether better.
Mrs.Mac-Canada EileenH
Posted
I'm afraid I can't blame the weather since I actually live in Pitt Meadows, British Columbia, Canada and the weather has been lovely here. Our summer will be ending soon but not quite yet, at least for this year.
I increased my dose to 5mg today since I wasn't any better this morning. I'll give it a few days (is 3 days OK or do I go by my symptoms?) then decrease to 4mgs for a few days etc as you suggested. When I get to 3, if all is well, I'll begin to decrease by 1/2 mg in the 1 day new 6 days old plan.
Since the ESR is not really reliable would the CRP test be better or are they more or less used as a baseline?
EileenH Mrs.Mac-Canada
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EileenH Mrs.Mac-Canada
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Mrs.Mac-Canada EileenH
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.
Your advice much appreciated again (and again and again)
EileenH Mrs.Mac-Canada
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Mrs.Mac-Canada EileenH
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Don't think this situation is going to change any time soon unfortunately but at least with PMR there is something we can do about the symptoms by changing dosage.
'
Mrs.Mac-Canada EileenH
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Went to my GP for a checkup and she found I now have a heart murmur. Is this from the pred or PMR? Also findingI haveshotness of breath I didn't notice before. Never sure if these things are from pred., PMR or just old age.
Also feeling really lousy about how I've messed up our retirement plans. My sweetheart is getting in the best state of health he's been in for years
and half the time I'm to tired to even go for a walk. Bit of a ptiy party
happening here. Sorry about that
EileenH Mrs.Mac-Canada
Posted
And what is your GP doing about the "murmur"? Referring you I hope. It depends what is causing it. The autoimmune part of PMR can cause damage to various parts of the cardiovascular system. My cardiologist is confident that is what caused my atrial fibrillation - damaged the cells that trigger the electrical signals to the heart. If you have a heart problem that could cause the shortness of breath - it needs to be investigated properly. Not by a GP. It could be the pred - but only an expert can offer an opinion on that. My a/f started about the same time as the PMR and I didn't get pred for 5 years or so - so I know it wasn't the pred.
You are by no means the only person who has the "retirement plans" problem. We bought a flat at the bottom of a ski run - the PMR has interfered with that! Though we live here and love it and the medical care is far better than in the UK the skiing is a bit can I/can't I?
And never apologise for having apity party - that's why the forums are here. All of us know where you're at - family and friends don't. WE've all had the same feelings - but it WILL improve. It might not be yet and you might not get back to where you were before PMR - but it will be better than now. If at 5mg you feel well - stay there for a while. If it is 6mg that's not bad either. Anything below about 7.5mg is a low dose - if that gives you a decent quality of life accept it for the present. Don't force a reduction just for the sake of it - that is totally counter-productive.
MrsO-UK_Surrey Mrs.Mac-Canada
Posted
I doubt the heart murmur is in any way connected to either the Pred or PMR. I was diagnosed with one many years before PMR struck, which after investigating was put down to a leaky mitral valve in the heart - luckily it remains stable.
It's so easy for us to feel guilty that we're upsetting our loved ones' retirement plans - so many of us seem to be struck down with this painful condition either just before or just after retirement. Remember your plans are only postponed for a while and fingers crossed you will, in the not too distant future, be as fit and healthy as him to enjoy your retirment together.
angie42852 Mrs.Mac-Canada
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EileenH angie42852
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If the underlying autoimmune disorder is still active you will need some pred to control it. At this dose there are near enough no side effects. Is it worth risking a return to 5 or even 10mg to control a flare worth it?