Hi there, haven't been on here to write for a while but I do read others blogs. Wondered if you could help me. I've been diagnosed with pmr for three years and have gone from 60mg when first diagnosed to14 mg which I'm on now. Like everyone else suffer from all the pains every time I reduce, even by 1mg per month. I went to see my Rheumy this week and he wasn't happy with me at all as I was still on 14mg . He said he wants to see me going down by 1mg every two weeks. I can hardly walk at the moment, my shoulders, neck and arms are all very painfully, which I told him. He has referred me to a physio. I feel that I know my own body better than he does but feel I have no choose as he can stop my medication. Has anyone got any comments.
thanks, sue
Well allfrom 60mg to 14mg. But if it was done c things considered I feel he might want to reassess your diagnosis. What were your initial symptoms? It may be you have withdrawal pains and you have'nt said how fast or over what period you withdrew. I have a friend who was just diagnosed with RA because of similar issues. Not saying this is your problem as I am nt sure about your personal withdrawal process
Well from what you have said I am not sure over what time period you went down from 60mg to 14mg. But if it was done slowly then all things considered I feel he might want to reassess your diagnosis. What were your initial symptoms? It may be you have withdrawal pains and you have'nt said how fast or over what period you withdrew. I have a friend who was just diagnosed with RA because of similar issues. Not saying this is your problem as I am not sure about your personal withdrawal process. So sorry about the messy previous post - my keyboard keeps going haywaire
Hi Sue - nice to hear from you but I'm sorry you're back in this case!
Was it just pmr you were diagnosed with? That was a very high dose to start with for PMR - that's normally 15-20mg/day - and 60mg is the dose to be used for GCA where there are visual symptoms.
If what you have is PMR, then 14mg should be controlling PMR pain fairly well so it is possible that you have steroid withdrawal pain which can be very similar. Or the diagnosis of PMR wasn't the right one in the first place - that is the main reason for using a lower dose in PMR because only PMR really responds to that sort of moderate dose whereas other things can appear to respond to a much higher dose. Also it does seem that many people have more difficulty reducing after being on high doses. Does it improve at all with ordinary painkillers taken regularly? PMR pain doesn't tend to, but having PMR doesn't prevent us from developing other problems which do.
Don't panic until after seeing the physio - because there are things that those high doses of pred could help that physio would help better and which do tend to occur alongside PMR. How long will you have to wait to see a physio? Can you afford/would you consider alternative therapies like osteopathy or Bowen technique?
MrsK had a lot of pain before Christmas, she couldn't walk without a stick or help and even getting out of bed was awful. Eventually she gave in to my bullying ;-) and went to see my former Bowen therapist - who worked a minor miracle in the first session: she needed a friend to drive her there and a walking stick and the friend to get from the car to the room. She walked out to the car after an hour's session! She's on to maintenance sessions now. My therapists both told me that you can tell if it will help within 3 sessions - if it hasn't worked by then it probably won't but if you have a permanent problem you may need sessions every few months to keep on top of it. It has been shown to have excellent results for frozen shoulder - and I don't know anyone who has been that it hasn't helped.
Oh Sue, it isn[t true that you don't have any choice - it's your body and only you know how you feel. Your rheumy might "want you down by 1mg every two weeks" but PMR doesn't ever do what anyone wants it to do - it will go into remission when it is ready and not before.
If, as you say, you were diagnosed with 'just' PMR, then I'm very surprised that you were started on such a high initial dose - that dose is normally reserved for those diagnosed with the linked condition, GCA.
Have you tried a slow tapering method, whereby you reduce by 1mg on just one day of the first week, two of the second, three of the third etc? This seems somehow to trick the body into not noticing the reduction. Some people who have problems reducing also find that just trying 0.5mg reduction each time can help.
You say that your shoulders, neck and arms are all still very painful and that you can hardly walk, and I'm wondering whether you have been tested for other conditions such as rheumatoid arthritis. Whilst suffering from one auto-immune condition it is very possible to succumb to another.
If you haven't had a Vitamin D blood test, then it would be wise to request one as any deficiency can lead to pain similar to that of PMR and this can easily be rectified with a short course of Vit D3.
Your rheumy should be further investigating rather than just telling you he isn't happy that you are still on 14mg after 3 years. And just to reassure you many of us have been on that dose after that number of years - it was 5 1/2 years before my GCA and PMR went into remission. If it were me, I would be asking for referral for a second opinion.
Good morning,
How awful. You certainly do not have an understanding rheumatologist. I started on prednisolone last November, and after my doctor starting me one week at 15mg, then down to 10mg for another week, l was in a lot of pain. Luckily I saw another doctor, and the difference has been magical. She arranged for me to see a rheumatologist who was wonderful, and he printed out a prednisolone reduction regime for me to follow. I am now on 9mg, and will be for four weeks, and although I have a bit of aching in my arms and wrists, I am certainly so much better that I was a few weeks ago. I seeing him again in a about two weeks, and hopefully I will be able to drop even half a mg.
I do hope you can find someone who is more understanding, who can help.
Regards,
Grace
Hello Jenny, My sympathies. I know only too well what these aches ans pains are like.I was diagnosed with PM R about a couple of years ago and put on a very hihh dose of prednisalone with very miraculous results. Sadly my own doctor wanted me off them and after a long while I am noew taking 5 mg daily. I hobble around like a cripple and always have a good supply of pain killers(co-codomol) to help cope with the flare ups. My problem now is that I havve lost my balance, and because of night seizures and almost constant trembbling, I have lost much of my memory. All the very best. Arthur24
Yes I have, I am in a similar situation I started on 20mg of Preds July 2013, I had been advised to reduce the Preds, and by Feb this year I was down to 11 since now I am on 8mg and yes reducing the preds is causing me pain or should I say more in the form of aches,which eases off a bit when I take my preds,but I am aware of them all day in the background, I am worse if I do ironing, or carry things, or sit for long periods of time,hence waking up with the stiffness and pain. I also find that I do get short tempered at times,which other people cannot and do not like,ie.members of my family, who do not understand as there is nothing on the outside to show of it, and I am sure that they think is is another excuse for me not to do all the things that I used to do and they think that I should still be able to do them. I also tend to have muscle cramps and often drop things, and I am constantly being told that I am clumsy....so......
Hello EileenH, thanks for getting back. Yes it was pmr I was diagnosed with three years ago. When I first presented myself at A&E at my local hospital I felt like I was dying. I'm not one for fuss but I'd put up with the pains for almost two weeks. I thought at first I had flu. Couldn't get out of bed, couldn't turn over, muscle pain like I've never had before. Anyway, after test in hospital the consultant said I have pmr and put me on60mg of pred. By the next day I felt great! Couldn't believe how quickly I felt so much better. Since then I have been diagnosed with liver scarring and diabetes type2, the hospital thinks it may be pred induced. Over the couple of years I have come downtown 9 mg a day, but then the Rhuemy put me back up to 20mg to give the pmr a good blast. Also, I have hip dysplasia and am waiting for a hip replacement. It sometimes is hard to know the difference between the hip problem and muscle pain with the pmr. I have also started to get headaches and pain down the side of my face just in front of my ears, also tenderness to my scalp. I told my Rheumy but he said my crp and esr levels are all normal.
I have my physio appointment on 17th July. I'll see how that goes, hopefully it will help. I take paracetamol as painkillers, most of the time it only just takes the edge off the pain, which is fine. For the last couple of months I have been in constant pain. My Rheumy said I should expect some pain, but to be in constant pain brings you down after a bit. Sounds like I'm moaning, sorry, I hope that's not how it comes over. It's really usefull to get comments and help from you and everyone that's comes on here. Thanks for listening.
sue
No, it doesn't sound as if you are moaning - but it sounds to me as if you need a second rheumy opinion, preferably from someone who doesn't take bloods as gospel. Like PMR, some patients who have clinically proven GCA never have abnormal bloods and those head symptoms and the PMR all put together are enough to worry me enough to suggest that. Where are you?
I was diagnosed with PMR about two years ago. The high dose of Pred.for me was 20 mg but for the past six weeks I was down to 5 but the pain just got too bad and now I'm back at 10 mg. Today I am in pain but was able to walk four miles this morning. Walking and using weights in pool seem to lesson the pain. I know its hard but some days I think I can't get out of bad but once I do and get out for a walk I usualy feel much better. I believe its hard for people who doesn't have PMR to understand the dibilatating pain. I'm curious as to how the pred. has affected you physically. Do you get any exercise on a daily basis? I know its painful but even 20 minute can benifit you greatly. I'm afraid to stay on the pred but it's better than being in bed all day. I pray someday I'll wake up pain free. For now, I take one day at a time. Everyday is a new day, I get up, get dressed, head out the door for a walk and hope the pain eases enough to get on with my day. Tomorrow, hopefully, I get to start all over again. I wish you wellness. Take care.
whoops, have lost the ability towork my computer, due to damaged brain. Will try again later Arthur24
Hello Crysstalcave, This is Arthur24. I try to follow all on this column as have learned so much. Since having night seizures,PM R and PPrednisalone (no connection), have packed up driving as I realized my brain had lost its edge. If I was thankful for small mercies, it would be that at least I can still shuffle around, thound likely to fall over, so am largely houseboooound. I do have a Zimmer, but use it as little as possible as I do not wish to be come addicted. Happily, I do klnow that we will wake up one morning totally free from pain. Oh happyy day. God bless, Arthur
This is a little off topic, but I had hip replacement surgery last year & the anterior vs posterior approach is a 1000 times easier. It's nonivasive & recovery time for me was less than a month. If there is an option it is worth doing it this way. I just noticed you mentioned you were going to have hip surgery.
I live in tamworth, Staffordshire, UK. My Rheumy nurse who I sometimes see in between the Rheumy doc said to not take what he says as gospel as it isn't him who is in pain. I'm keeping my eye closely on the headaches, and I don't have any problems with my eyesight. I agree with you about having a second opinion but as he is the senior consultant I don't know where I would find another one.
Hi Arthur, thanks for your msg. I'm sorry that youv'e had to start using a frame. I have one but not used it as of yet. I use crutches all the time though as I am waiting for a hip replacement. The pmr on top of the hip problem is a nightmare. It's also a shame having to give up the driving, it's my lifeline to the outside world, although on bad days with the pmr I can't drive. God bless to you Arthur. Sue
Hello Mrs,
no I haven't tried the slower tapering method, I was just told to go down by 5mg fro the 60mg a month to begin with until I got to 30mg , had a few flair up's. Then tried2.5mg per month but started having real problems again. Then the Rheumy said go by 1mg per month. This has been ver the three year period of having pmr. My GP nurse has said I have RA as it says in my notes but I have never been told by my Rheumy. I do take Adcal tablets every day and also Alendronic Acid tablets. I have 2monthly blood tests and annual dexa scan tests.
thanks for your post
Sue
Hi Patricia,
thanks for the post. It's great that you can get some regular exercise, it must really help. Unfortunately I have chronic hip dysplacia and am waiting for a hip replacement so can't do much walking, it's very painful and the pmr seems to be attacking my hips most of the time. Your right people who don't have it just don't understand how debilitating it is. Carry on with the exercise I'm sure it must be helping.
take care Sue
Hi mary68968,
thanks for your post. I'll ask when I see my consultant. I was worried how the surgery will affect my pmr but the Rheumy said it should be ok.
Again thank you for letting me know.
regards Sue