I took my mother to see GP this morning. She changed surgery when she moved abt 2 yrs ago. New practice has 8 GPs but getting appts is challenging. Rarely see same person. She's seen 4 GPs so far. Luckily last week booked cancellation appt for today. (Only 4 appts available to see any doc before end of first week of Jan - now wonder A&E departments are busy).
First thing today's GP said was "it would be better to see your usual GP" Haha - would if we could.
My mother has been taking pred for PMR for over 25 years. Previous GP reduced dose to 1mg; but when she moved surgeries new GP said that wasn't working and put it up to 15mg. In 18 months she has put on over a stone in weight. Today's GP she shouldn't have been on 15mg for so long and essential to get dose down asap so she is starting on 12.5, 15 for next couple of weeks; aiming to get to 10mg by end of Jan.
I also have PMR and am now down to 8mg. After a reduction from 20mg to 15mg at the beginning and a big flare up, I am doing my own thing - going really slowly. It seems to be working. Next week 887887 then 878787 and finally 777777. Occasionaly my legs ache but so far one paracetamol or ibuprofen has done the trick.
It seems to me that even the GPs in one surgery give different advice. I know Kate you spoke to Rheumatologists at their conference this year. Is there some way to keep GPs better informed? The trickle of information down seems to be a bit hit and miss. Reading messages of people's experiences and difficulties on this forum especially with regards to reducing steroids I feel it is often the case of the user understanding best what to do.
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Your last paragraph rings very true as far as I'm concerned, but the problem is ,I believe, that this illness has not real tests to determine it's severity or it's very existence. Blood tests are no proof as often they are negative or if they are positive could be the result of an entirely different illness.
As this illness is believed to be inherited, therefore, it must be possible to have contributions from both parents - a double whammy! My father had PMR and was on steroids for quite a few years, but recently I have wondered if my mother had it too. Could a double dose via our genes be the reason why I and many others do not recover in less than 2 years. Kate has just raised this question and I see no reason why she could not be right.
3 months ago I saw a rheumy who was 'filling in' for my usual specialist while she was away. He managed, in the space of half an hour, to make me feel as if it was all my fault that I was not greatly improved as I was approaching the two year anniversary of diagnosis and said that I should be almost better. He never once asked me if I still had the pain/stiffnes of PMR, but said I was probably suffering from osteo arthritis. I can't tell you how upset I was. Fortunately, yesterday I saw my usual specialist who completely reassured me and sent me on my way feeling happy and supported.
As far as I'm concerned, a good doctor is so important when you have an unusual, difficult illness to manage.
My feeling is that PMR is inherited. My mother has it still after nearly 30 years but my mother's mother died of pernicious anemia. Two doctors have thought that was interesting and made a note of it. I wonder if that was a mis-diagnosis - probably PMR was unhead of in 1970?
I know what you mean about some doctors making you feel like it is your fault. I guess that is one advantage of our over-booked surgery. I get to see all the doctors and some are far more sympathetic than others.
The GPs in my practice seem to be well clued up on PMR - blood test and diagnosis in 24 hours - and are very good about trusting me to reduce pred dosage in my own good time and it seems to be working. Trust your own body to tell you what it needs.
25 YEARS?! Oh jeez! Is she sure this is the correct diagnosis?! Has she ever seen a rheumatologist in that time? In your shoes, I would see that as a priority as well as a necessity. The professional rheumatology boards' agreed standards on diagnosing and treating the disease in the UK and US would indicate that a diagnosis should be reconsidered if the condition goes on and on like this -- there are some other conditions with similar symptoms. I've also heard of so much appalling and conflicting 'information' given by GPs now that I would only deal directly with a rheumatologist for diagnosis and treatment -- I just don't think the condition is adequately recognised or understood by GPs and some have clearly had their health put at greater risk by dealing only with GPs, going by posts to this forum alone.
But also: rheumatologists can also disagree on treatment (however this is different from not even adequately knowing about the condition) -- and of course personalities vary widely, which is another element... my best friend is a radiologist who works with breast cancer patients and her reaction when I told her I had PMR was "Oh no, rheumatology conditions are awful because so little is understood about them and how to treat them. I'd hate to have any condition like that". Her own father had PMR. So unfortunately, conditions in this area tend not to be clearcut diseases but syndromes with a cluster of symptoms and one can easily be mistaken for others and it isn't even understood with many, if they are distinct conditions or just the same thing with different symptoms/progression (a question hanging over PMR and GCA).
I grew up in a medical family (mother an RN, father an MD) and really feel that while GPs are great as a first port of call or to deal with common illnesses, there is just no way I want them managing a more specialist condition they know little about. It is personal choice of course -- but in the case of your mother, spending a quarter of a century on preds and getting vastly different views from different GPs -- I'd insist on a letter to see a rheumatologist and not waste time with GPs, and hopefully get some better answers and make sure she actually has PMR.
I agree that slow reductions are the way to do it! The temptation is to rush off the preds (with me too) but better to go cautiously and try to prevent flares and get off sooner, overall.
It is frightening when you know people in the medical field who know what the situation really is!
Yes, it has been a very long time. Yes, she has seen rheumatologists when it was originally diagnosed and since then. It all started with a terrible headache which Mum thought at the time was a brain tumour. My parents were staying with my sister so when they left so they drove 100 miles home and directly to the GP who saw her immediately. This was in 1970 so early days I think for diagnosis. The GP who saw her was newly qualified and had just done some training in PMR so she was fortunate it was picked up so quickly.
At the time 18 months ago when she had to change GPs she had been gradually reducing Pred and got down to 1mg. But she was also very, very tired. Bearing in mind she coming up for 92 and had moved from her flat into a temporary place with us for six months and then into our new house it is probably not surprising! I think the stress of building a house probably triggered my PMR! I didn't feel especially stressed about the house at the time.
I think that the pred has caused Mum to have other problems - main one is circulation. (was going to have an op on a leg about 4 years ago but advice was that because of her general health it would be dangerous and likely she might lose her leg. We decided to try massage and so far she is still walking with aid of a stick and wheelchair if we go out). She had a stroke 12 years ago and has had a number of TIAs BUT despite everything she is still as 'with it' as ever; pred hasn't affected her memory or intellect.
If this reduction doesn't work by end of January when we see the GP again I will, as you suggest, ask for an appointment with a rheumatologist
Hi, I am new on here having only just discovered the site! I think your Mum is amazing - please tell her that from me. I am 71 and I have had PMR for 12 years now and thought that I was unusual as some doctors have said it usually self eliminiates after 18-24 months?? Ha ha, not so with me. I went from the initial 15mg slowly down to just 3mg and have been on that dose for about 6 years. More recently I have had a lot more pain and stiffness, getting quite debilitating and impeding my mobility. I have a new doctor now as the other one retired and he suggested we boost the preds to see if the problem was actually PMR and not something else. I felt great immediately and then we began the slow reduction pattern and I managed quite well down to 4mg. Then came the 3 which I had been on before for so long - this time it is obvious that the problem is PMR because I am in so much pain. I hurt if I stand, sit, lie down, walk, anything! It is very depressing. I shall go back after Christmas and ask to see a rheumatologist, as I have not seen one before.
It is so good to meet up with you people as I don't know anyone else who has PMR.
I wish you all a Merry Christmas and a Happy and Healthy as possible New Year! x
Glad to hear you have discovered this site. It is certainly good to be able to see how everyone copes with pain, medicines and everything else that goes with PMR. I think your experience of getting down to low dosage but not being able to go that last few milligrams to get off completely is not unusual.
When we saw the latest doc with Mum last week he said that sometimes when people have been on the Pred for a long time they become dependent on it and as they reduce the dose they should take paracetamol to help with the pain and perservere. I should have asked him if he has had PMR - haha! I remembered this and as I am now down to 7mg/8mg for next week or two I did take a couple of paracetamol on Friday and Saturday but didn't need to yesterday.
I think you should definitely see a rheumatologist. One good thing from me seeing my rheumatologist is that she organised more comprehensive blood tests than the original ones that detected PMR, I had xrays and scans too plus, of course, this is her specialist area so I felt more reassured.
Merry Christmas to all on the forum and a best wishes for a healthier 2013.
Thank you Kate for setting up a very useful and much needed forum.
I'm sorry I missed these messages on the 24th December - perhaps Christmas was getting in the way!
Kavidacat - I'm amazed that you haven't been referred to a rheumatologist during your 12 years on Pred, particularly when you hit a brick wall reducing in the final doses. Very wise of you to seek referral now when you appear to be having a repeat experience.
It appears to be quite common to have difficulty reducing from the 5mg dose, probably because our bodies haven't yet returned to making sufficient natural steroid after the artifical steroid has suppressed our adrenal glands, thereby reducing the natural steroid (cortisol) that our bodies manufacture when well. This is probably the reason why during the first year after coming off steroids we are advised to inform doctors/dentists about to perform any surgery that we have been on steroids.
I also had problems trying to reduce around the 5mg point, and following a major flare at 3mgs and a return to 10mg, once back at 5mg my rheumy kept me there for 5-6 months. Although he then said I could start reducing by 1mg a month again, I decided to go much more slowly (snail's pace, in fact!) and reduced by just half a mg and on one day only of the first week, two days of the second week, three days of the third etc, taking about 7 weeks to reach 4.5. I then repeated this routine to get to 4mgs. It took ages but it worked and I got to zero Pred without my body noticing the sneaky reduction of something it had become so reliant on, no doubt at the same time giving my adrenal glands plenty of time to kick back in with their natural steroid production.
Perhaps something similar could work for you also. Meanwhile I hope your rheumatology appointment happens and goes well.
Reading all the comments I find so useful and comforting. I am sure my PMR has come following extreme stress. First Shingles and now this. However I feel all the information given has helped me to feel I will be able to manage this through. The Doctor told me 18months to 2 years, but wanted me to reduce to 10mg from 15mg after 2 weeks, but I think that too quick so staggering dose and using paracetamol at bedtime to get sleep. Afternoons are pretty good. Should rest be part of getting better or gentle exercise?
Glad to hear that staggering dose is working for you. Whatever you do go slowly. I think I went too quickly from 6mg to 5mg and I am now back on 8mg. When I do feel ready I only plan to reduce by half a milligram.
Re rest and exercise - rest definitely helps me but I am not very good at resting! I am slow in the mornings and by the time I feel a bit energetic I should be thinking of going to bed! On the exercise side I have had some physio in an NHS gym and that exhausted me. I am now doing Tai Chi for beginners and that seems just right. Lots of gentle stretching which feels good.
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