Thank you so much for all your kind support. I will definitely seek another opinion to treat the symptoms of my PMR. I've had it for approximately one year; was started at 15 mg a day, which really cut the symptoms. The doctor tried to cut the dose by 5 mg a month but my body did not respond well to that so she changed it to a 1 mg reduction per month. When I got to 5 mg I felt sort of OK but not great and I thought if I could hold on the symptoms would abate. At that point the doctor checked my ESR which was 23 (normal range was something like 5-20) and she decided to take me down to 4mg last week. Bad idea! symptoms returned big time and I'm back on 5 mg and still feeling the stiffness. Funny thing is I'm sort of afraid to ask her if I could raise it back up to 6 or 7 mg. She keeps warning me of the "bad" effects of the pred. Seems like you're damned if you do and damned if you don't.
In any case, I feel much better knowing you're all out there in the real world of PMR (not happy that you have it) just glad that I can get your feedback as fellow sufferers. Also I just began the "anti-inflammatory diet" at least my version of it, after hearing how it has helped many of you.
Thanks again,
Lois67
Hello Lois
It might help you to know that there are thought to be very few risks, if any, associated with the lower doses of Pred that you are now on. Plus to be on 5mg from your starting dose of 15mg in just a year is excellent progress and it means that your total steroid intake overall has not been high.
As you say you felt "OK but not great" on 5mgs, then that probably isn't a sufficient enough dose to keep control of the inflammation for now, and it would be wise to return to the previous dose at which you felt comfortable, be it 6 or 7mg.
Our adrenal glands make around the equivalent of 7.5mg of natural steroid (cortisol) when well but this natural production is suppressed when taking artificial steroids. Therefore when we reduce below this point, we can have a shortfall until our adrenal glands get up to speed again.
Many of us find problems reducing at around the 5mg dose and have found it can help if we reduce by just half a mg each time and spending longer at each new dose.
MrsO
Hi Lois67 I am new to this condition and I had bad advice to begin with. Obviously the GP didn't know much about the reduction of Pred. He put me on 20mg for 3 days (which was brilliant! all symptoms gone in day 1) then 15 mg for 3day then 10mg for 3days then 5mg for 3 days then none! I was just at the end of 5mg for 3days and struggling when I had a chest infection and had to visit the surgery again. Fortunately the GP I saw was more 'clued up' and understood the slow reduction of steroids. The way she explained this to me: ie the function of the Adrenal glands and how they respond to steroids and why then the reduction should be slow to allow the Adrenal glands to function again, let me know she knew what she was talking about. In fact it is so obvious that I am at a loss to why any GP does not understand this and leaves me doubting most GPs! Do not fail to ask for what you want! it is your body and I am sure there are people on here that can point you to medical papers to take with you should you need to.
This is a much more debilitating condition than is given credence for. My husband understands but the rest of my family............
Best wishes with your medication and remember - stand your ground!
Elaine
Hi
I have had PMR for about 6 years and have very slowly - something my gp has not been supportive of - reduced dose, however, once I got to the 5mg and under I found each time I reduced I would find my symptoms would come back for about 3 weeks, stiffness and particularly tiredness, I would also find symptoms would appear in other places where I had not previously had a problem - mine has been almost exclusively legs, bum and hip area but when reducing my arms and shoulders would be painful, but, after about 3 weeks would settle down again. Sometimes this worked and other times it didn't, sometimes I would increase again, and try again in say 3 months with more success, however I have at times gone months between reductions, now on very low dose 1mg alternate days.
Seems different approaches suit different people
Hi Lois
It was good to find this site. I have had PMR since 2000 and it has been such a surpising roller coaste ride. I had so many Doctors tell m it was Artritis ut I had no pan in my joints but I hadso much pain in my back and legs Icoud hardly walk. Finally found a Doctor who gave me pred 5 mg an a few times more 10 mg btnow I am down to 5mg. but at preset I am discusted with my progresnohing sees to work a I am in terrible pain. My eyesight is getting bad and my Doctor was give steroid and anti-inflmatory shots but it was too much so now I must keep trying for better ideas. Thanks for all the input.
It seems as though 5mg is a crucial level and it gets more difficult to reduce after arriving there. I hope you start to feel a lot better soon; 14 years of PMR must be extremely depressing. ARe you still able to work?
You all have been so very helpful; I've been back to 5mg for a few days and if I don't feel better soon I'll take it up to 6mg. It's good to know I'm not just being a hypochondriac. Despite my age, 65, I used to be very energetic and hope to be that way again. On 15 mg a day I felt like superwoman.
its well documented that once on 5mg you have to stay there for months to allow the body to adjust even before 5mg the body can struggle to make up the adrenal shortfall I have tried to get below 7mg this is my second try but at 7mg I am just coping so I am not attempting to reduce again for awhile my gp is perfectly happy for me to take my time ,the steroids are not the enemy and at low doses the risks of side effects are reduced carolk
I echo Carol's advice. When suffering a flare at 3mgs, my rheumy advised increasing the dose to 10mg for a couple of weeks to get control of the inflammation, followed by 7.5mg for 2 weeks and then alternating doses of 7.5 and 5 for 2 weeks. Once on 5mg he advised me to remain there for some 5-6 months. I baulked at the advice at first but it proved successful and I was then able to continue to zero Pred........but only in half a mg decrements and tapering to each dose very slowly over a couple of months each time.
MrsO
At 5mg you are just below the amount of corticosteroid your body makes normally and needs - if your adrenal glands aren't making enough (it's complicated feedback system that needs time to settle down after not being working whilst at higher pred doses) you will feel unwell. The marking time at 5mg lets your body catch up.
Some people react to pred by feeling a bit manic - a side effect. Plus on 15mg you feel better and have no pain after feeling ill and sore beforehand - the contrast makes you feel even more "superwoman".
And remember you are looking for the lowest dose that controls the symptoms, it isn't necessarily a steady reduction to zero - if the underlying autoimmune disorder is still active the symptoms will come back if you go too low. You shouldn't reduce by more than 10% of your current dose to try and avoid steroid withdrawal discomfort (which feels similar to PMR) and by the time you are at 5mg 1mg is now 20% of the current dose. When you get to 2.5mg, half a mg is 20% - you need to find a way of slowing the reduction down and there are various ways of doing it.