I met someone yesterday, in her early 60s who has had PMR for 6 years BUT she has never had any side effects from steroids - her Dr says about 10% of patients don't get any. I have known her on and off for a long time and she has always seemed incredibly fit and energetic, had a job in Social Services, cycled, walked, gardened, looked after house, garden and grandchildren. This is still so, but she has never managed to get below 6 mg. pred. It seems that she has NO PAIN or STIFFNESS as long as she keeps up the dose. She is happy to stay on steroids for ever really! Her Dr. does try and get her to reduce. But I suppose it is patients like her who sometimes give the impression that PMR is a very minor affair and what are we all moaning about. But for her it has been a balancing act; no pain or lack of energy versus staying on steroids which apparently don't have any side effects for her. I wonder in the long run though! Don't know whether to be envious or not!
Green granny
Yes it is a nasty disease but it could be that her adrenal glands have stopped functioning and that when she tries to get below 6mg steroid withdrawal mimicks PMR and she continues getting the pain. My doctor said you have to go down below 5mg very very slowly and that you may experience some pain/discomfort whilst doing this to give the adrenal gland time to start functioning again. I have just got gown from 5mg to 4mg and have had ups and owns on the 4mg dose. I still work and last week had a really bad week terrible stiffness and pain thought oh no back to 5mg but thought I would try and get through it had a restful few days and feel a lot better so will plod on with 4mg. It makes sense if your body is fighting stress and tirdness leaves little left from a weak adrenal gland to fight the pain. Just my theory.
Linda
Hello Linda - I do so agree with everything you've said. I reduced finally to 2mgs from 3 just 16 days ago, having taken 8 weeks to do the taper! Like you, I have also had a couple of days last week when I thought \"this isn't working, here we go again\"! On Tuesday my neck was so painful and it felt as though it was deep in the muscles; on Friday, my legs stiffened making walking uncomfortable and reminding me of how I felt pre-diagnosis. However, yesterday was a good day and so far today is promising! Like you, I'm sticking with the present dose and crossing everything! I have blood tests tomorrow and rheumatology appointment on Thursday. Best wishes and do let us know how you progress.
MrsO
Mrs O
Really good news to get down to 2mg hopefully you will get more good than bad days. I am fully expecting not to get down to 2mg until September at the earliest, it does seem that the slower the better, that is providing everything is ok. I will keep you updated I have had Polymyalgia for 20 months after starting on 20mg. Keep me updated with your progress and fingers crossed for both of us on our lower dose.
Regards
Linda
Hi Green Granny Hope you are feeling OK I seem to be managing on 15mg so not quite back to square one but almost !! I also ( so far ) seem to be OK on steroids except for a bit of a weight gain but I think this has a lot to do with my inactivity My Doctor also said there are a lot of people on 5mg permantly due to various illnesses so I suppose its an individual thing and I think now having struggled so much since Xmas I am going to have to learn to love them for a long time I had managed to get from 20mg to 4mg in 14 months but 5 to 4 was a real problem and at least 4th time lucky !! I think it is great Mrs O you have got down to 2mg with real perserverance and Linda I am with you on these Adrenal glands ( think mine have gone to sleep ) More cold weather forecast so I hope our aches and pains dont accelerate
Hello Mrs G - Yes, certainly from my experience over the last few years, it does seem that when we can't manage to reduce the dose by 1mg monthly from the doses above 5mg without return of persistent pain, then that is because PMR is not yet on the wane. Conversely, when it is difficult to reduce the dose below 5mg, then rather than the PMR not being on the wane, it does seem to be because the adrenal glands are battling to recover and make sufficient natural cortisol to cope with the reducing supply of artifical steroid. In my taking 8 weeks to slowly taper from 3 to 2mgs, (the same as with each previous drop from 5mgs) perhaps that is giving the adrenal glands some time to adjust, and if I'm ultimately successful with this drop it will probably be 4 months in all before I try and reduce to 1mg - a daunting thought as that's a 50% drop! Meanwhile, I'm hoping the blood tests tomorrow will show normal markers.
It's good to hear you are doing better now on the increased dose and I'm sure you will be able to reduce faster from 20mgs this time around if my experience has been anything to go by.
Linda - yes, I will certainly keep you updated, and I'm very in awe of people like you who still manage to go out to work in spite of PMR - well done.
Green Granny - yes, the lady you met is very lucky not to have had any side effects after 6 years but my rheumatologist has said that the side effects do not occur on the doses below 7.5, which is whey they try to bring you down from the higher doses quickly, so perhaps she has been on the lower dose for a very long time. Do hope you're starting to feel better, also your son.
MrsO
Hi Everyone, 15 mg. does seem to be kicking in now, after 4 - 5 days, not too much pain though not lots of energy which would be nice. By the weather forecast I'm going to be using quite a lot of energy just to keep warm! I've just been to have more blood tests done, I asked the nurse and she was sort of vague, said \"rheumatism\", diabetes,thyroid, but I think she wasn't wanting to start discussing it all! Anyway I don't see the Dr. for 10days (he's on holiday} so I guess i stay on 15mg until then, at least. I have looked in my notebook and I was on 15 mg exactly a year ago. I am trying to learn from everybody else's experience and not let it get to me. But I have noticed the sleep patterns have got really upset again, got up at 3.30 this mornng, I was so wide awake there didn't seem any point in staying in bed!
Best wishes to all, Green granny
Green Granny - I'm so pleased to hear that you are feeling better at 15mgs. When you say that's exactly where you were a year ago, it reminded me of my experience of increasing back up to 10 twice, always after a year and always in February! Hopefully, after a few weeks on your higher dose and if the blood tests have returned to normal, you will be able to reduce a bit more quickly than last year.
Like you, I've just been to have blood tests. You mentioned diabetes amongst your tests, and as I've never had a glucose test done in the 4 years of PMR/GCA, I asked if someone could tick the box for that also today. I've developed a bit of a problem with a couple of sore inflamed places on my toes and a neighbour asked if it could be Diabetes!!!!! I'm really hoping not especially as I know it is listed as one of the side effects of steroids. Hope the consultant doesn't mind that extra test being added when I see him on Thursday!
That's not nice when you have your sleep disrupted again but hopefully as your body adjusts to the higher dose that will improve. Meanwhile, I know of someone who, after coming off her computer at night and before going to bed, always has a lettuce sandwich, swearing that it helps her to sleep. Although it might sound strange, lettuce is soporific so perhaps you could give it a go.
Do hope your son has recovered from what you thought was Swine flu and that the rest of the household has escaped it.
Best wishes,
MrsO