Hi all
I was diagnosed in january 2014 with sudden onset PMR. I am a 57 year old female who up until sudden onset was a fit and healthy person. I woke up one morning and the pain was everywhere, couldn't move to get out of bed and it was very scary. I started off on 5mg prednisone which did nothing. GP upped it to 20mg and the pain lessened. At least I could raise my arms. The GP I went to said I had to come off prednisone quickly but everytime I got to 10mg the pain became intolerable. So went back to GP and am staying on 15mg for the next few weeks then downing the dose by 1mg a week.. Over the last couple of weeks the pain in my hands and arms has been really really bad to the point it brings me to tears. I have not been without pain since january, sometimes a dull ache but other times full blown pain!!! I have found this forum so helpful in understanding that PMR affects people differntley. I have made appt to go back to GP next week with the hope of referral to a Rheumatologist to see if there is more going on. I sympathise with everyone who has PMR as it is not easy to live with and it can get you down. I find after having an active day the next day I suffer for it but am learning to work through it. Thanks to those who commented on homeopathic remedies, was very helpful. I have a full massage once every three wekks and have found this really helpful. Also having a sleeping tablet once every three days as least aloowed me 2 good nights sleep a week. So thanks to all I really appreciate this forum.
I know how you feel. I tried to come down to 10 mg from 15 and the next day I found it hard to walk. I am going back to 15 see if that helps was at 25 for a month then to 20 and now 15 but I understand I shouls be doing 1 mg lower every time not 10 to 5 mgs hope you feel better and stay that way
Thanks Gary. I have been told the slower you lower the dose the better off you are with controlling the symptoms. Let's hope so. Thanks for your reply and good luck.
Hi Stumpy1,
If you are in the UK it seems that, like me, you are having another night without sleep due to pain. In my case it's because the effects of the steroids always wear off by midnight. In your case, it seems to me, your steroid reduction has been too rapid.
Starting you on 5 mg was a joke. This amount of pred does nothing to control the pain of PMR. 20 mg should have relieved the symptoms within a week but if you reduced before the inflammation vwas fully under control then no wonder the pain returned.
I don't understand why your GP wanted you to come off prednisolone quickly. This would leave you with uncontrolled PMR. This GP doesn't seem to realise that pred doesn't cure PMR but controls the inflammation and so is needed throughout the course of the disease. At least now you are on a sensible dose at 15 mg for a reasonable length of time. However, I feel 1 mg a week from 15 mg is too fast.
This paper http://www.rcpe.ac.uk/sites/default/files/quick.pdf describes a slower reduction plan. Perhaps you could show it to your GP. EileenH has a very slow tapering plan, which I am sure she will post again.
I can't comment on the pain in your hands and arms. Maybe something else is going on if 15 mg isn't helping.
All the best, Christine
Hj
I cannot begin to imagine how frightened you must have been to suddenly wake up in that state.
I was petrified and mine came on over a few months.
You say you have been helped BT forum - me too. But recently I felt I had to take the rheumatologist's advice to reduce quickly - sort of to prove a point as he didn't believe I had pmr.
Well as Eileen explained to me, I went down so quickly albeit 1mg at a time (and not feeling it too much initially) that I missed the optimum, lowest dose for me - and eventually at 2mg, meltdown.
I had to go back to 10 where I am sitting for a while and then I will follow forum advice - it has more experience of real life with pmr than GP and rheumy alike.
Only you know how you feel and only you will discover what works.
Yes pred has major side effects but it is a magical tablet for pmr. No good getting rid of future issues if you can't walk/move/work/live now.
I wish you all success
Jenny
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
This link will tak you to another thread with links in the first post to other sites that offer good sound and medically approved advice. The final link is to a paper written by experts and aimed at helping GPs manage PMR and your gP obvously needs to read it. You cannot "get off pred asap" - you have to reduce asap to find the lowest dose that controls the symptoms but you can't get further than that until the underlying autoimmune disorder causing the symptoms has burnt out and gone into remission. Until then you will need some pred whether your GP likes it or not. I've been on pred for 5 years - with no diabetes or osteoporosis, I did have some bad side effects with one form of pred but it is one that is rarely used in the UK (Medrol, it is used in the USA and mainland Europe) and they have all gone now I'm on another.
In replies 4 and 5 in that thread you will find the reduction scheme that many people are using successfully to reduce without steroid withdrawal problems and it also allows you to find the lowest dose that controls the symptoms far more accurately. There are a few versions available but all are basically the same, spreading a 1mg reduction over a few weeks. One is being tried by a consultant in the northeast of England and he is very impressed with the results.
A warning about "working through it" - PMR makes your muscles intolerant of exercise and they take far longer than normal to recover from the damage. For us an active day is equivalent to running the 10K road race without training. Rest is essential - resting before getting exhausted works better than afterwards. You have to learn to pace yourself and to say no when you aren't up to something. The people who learn to do that benefit in at least 2 ways: they are less unhappy during the illness and often recover faster then when they fight against the fatigue and pain - it takes a lot of energy.
HI Eileen, I still don't know whether mine is PMR or RA so still not being given any medication. Do you know of anything I can do to help the pain myself. All I have is the usual cocodamol and tramadol which does very little if anything at all. I have my rheumatology appointment on 5th september but docs wont give me anything till after that. I am suffering so much I just wanna take the lot at times. I am now getting random aches in parts of my legs that wont go away as well as the hips and shoulder pain. My arms are so weak and my fingers getting sharp pains and getting lumpy too which I wonder if they are the start of nodules. I M sleeping so much too and I am sure thats making everything worse vut I cant help it. I feel so so desperate right now and my kids are having a go at me, one of them cos I am in bed all the time and one of them cos I havent done any housework. I feel like I am letting everyone down and just wanna run away (well, crawl slowly away actually -still get my sense of humour at times). I am lying here in bed now and I could murder a coffee, I have only just woken up and just taken all my pills and would rather go without than struggle to the kitchen but I feel lazy asking anybody to make me one. My boyfriend is out there too, having a cig but I dont even wanna ask him. Was a time he would just make me one and ask if he could do anything else for me, but I think he is sick of seeing me like this too and I wonder if he thinks I am putting it on too. I canhardly see what I am typing with tears clouding my eyes here and just dont know what to do to get out of this!
P.s. I dont know whether youmremember but I had preds for one week and felt wonderful! Even thought i could go right back to work
I wrote what I thought was a useful and carefully thought out reply to you Stumpy1 in the early hours of this morning. It was your first reply. For some reason I don't understand it says'This reply is waiting to be moderated'. This is very annoying!
There really isn't much you can do if the GP won't allow you pred now - and all you can do is hope the rheumy is sympathetic on the 5th. If you are really bad when you get there and they see that and believe the effect of that week of pred they may give it to you immediately rather than wait to do a load of tests. I'm so sorry - I have been where you are now but at least I didn't have to cope with children too.
No, ordinary painkillers don't do anything for the pain of PMR I'm afraid, we all know that but there are still GPs who think they work for all pain. I managed mild PMR for 5 years by doing an aqua class every morning which allowed me to get going and once I was moving it was a progressive thing, I got moving, could move a bit more and the pain did improve a bit. But I had to pay gym membership and it was by no means perfect. When I suddenly got much worse I couldn't even get to the gym! But if I could manage to move a bit I did improve still - I had 6 months of that before pred. Some people find warmth helps - using an electric blanket before getting out of bed, a warm shower and trying to stretch a bit to improve the mobility. Not sitting for too long helps with the stiffening when sitting. Bowen therapy helped me too - but that costs.
It's a conundrum but you have to hold on to the thought that the 5th isn't long now. I'm so sorry there isn't much more I can suggest - the best hope was a different GP.And it's the BH too today - the weather sounds rotten and that definitely doesn't help either.
If it had anything like a link, contact details (phones nos for example) or even certain words in it the computer screener picks it up and blocks it until a person checks it out. Links within this website are allowed but nothing else. Sometimes all it needs is a typo, running the next sentence after a full stop without a space for example, to trigger it.
It used to drive me up the wall too!
Thanks Eileen. I will have a hot bath I think when I can move a bit better. Yes, I never thought about an electric blanket, I definitely feel better with heat around the pain, i have heated seats in my car and that helps the pain in my buttocks a bit so it makes sense. I want to go to the hydrotherapy pool but my dog is dying and Imcant leave her at all poor thing is really hanging on. VET WANted to put her to sleep three weeks ago!
I put a link to the Quick and Korean paper in it so that might have done it. I hope my post will be shown when it is realised there is nothing sinister in it.
Hang in there! PMR is a terrible disease! I am lucky enough to have been able to titrate my Prednisone down to 2mg, from 40mg starting dose. I developed a horrible case of shinges when I was on the higher doses. So in addition to dealing with PMR, I am also dealing with shingles and PHN! Aren't I lucky?
I continue to have pain from PMR but I can deal with it. The pain from shingles, not so much. Stumpy, I take Trazadone 100mg @ night. I wasn't taking it for awhile but another commenter mentioned the benefits of taking an
anti depressant/sleeping aid nightly. Since I started taking the Trazadone again I have been getting 7-8 hrs restful sleep each night!
Christine
Shazzy, hang in there. First of all you need to have a doctor who knows how to treat PMR. This is vital! Too many physicians are ignorant on the proper care of a patient with PMR. Some of them have preconceived ideas re treatment and will not avail themselves of more current plans of care.
Secondly, you need pain management! I hope your rheumo will start you on something other than Tramadol. I take a narcotic for my pain. I don't like taking it but it is the only thing that really helps me. I take the lowest possible amount, sometimes even breaking my pill in halve. I take it on a rountine basis NOT as needed. This is key in managing the pain. Eventually you can go to "as needed" but initially you will get better pain control with a routine dose.
Third, sleep is a good thing. And increased activity in small amount is good for you. I allow myself 1 big activity per day. And I try to limit it to mornings and only for 1 hour or so. The rest of the day I stay home and try to relax. I find that by doing this I can do things outside of my home w/o feeling the consequences the next day. When I am home I keep myself busy with chores etc. I also take time to rest and nap if needed. I limit my news watching as I find listening to the current events going on in the world just too stressful for me.
Hope this helps you. Good luck @ the rheumo's. I will say a prayer for you.
Christine in the USA
Thank you so much! I find the news stressful too and avoid it as much as possible. My partner loves it though, but he has been going out into the conservatory to listen to it.
I have been on tramadol for years and its not helping but takes the edge off at times, along with cocodamol. I have thought about getting something yo smoke but my son went mad when I mentioned it, and working in mental health, having seen the psychotic effects I understand why, however I would have only used it now and again for some relief.
I will just have to try to be patient till I see rheumatologist in 11 days and hope she can help me. Thanks again x
Yes, that will have done it if it is direct. I think I have given it to her before - but there is an internal link which the moderator set up for us a long time ago to save this nonsence when we are in a hurry:
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
It takes you to the post twith 3 or 4 links in it to get info from the other PMR sites.
so sorry stumpy, I have had this malady for 6years now and for the LAST time, my doctor is trying to get me completely OFF THE STEROID......i am taking a 2 mg pill EVERY OTHER DAY NOW FOR 90 DAYS, THEN I QUIT!! HE SAID DON'T TAKE ANYMORE AFTER THE END OF SEPTEMBER........I pray this works this time as we have tried numerous times to get me off of it, but this is a new way he decided to try, Sure hope it works, and DON'T GIVE UP HOPE, MAYBE THEY CAN GET YOU OFF IT ALSO.....
Claudia, I wish you luck in your endeavor to stop the steriods.
Right now I am to decrease my dose by 1mg every 2 weeks.
My PMD knows we have to do this very slowly. In March I was on 20mg daily for my Lichen Planus in my mouth (another confirmed auto immune disease). The oral surgeon had me titrate down too quickly and I wound up going into full blown "Adrenal Crisis". Not fun at all!
I have been on and off steriods since I was 11 years old for various problems. I think that is why I am having so many issues now. AS I said, good luck and I will say a prayer that you will be successful!
Christine
thank you so much. I only pray that this will work for me this time. I found out when ordering my Medrol medicine, that they do not make the 2mg pill any longer, so had to have dr. order 4mg and I have to cut them in half. They are MEAN PILLS TO TRY AND CUT INTO.....lose a lot of it where they crumble somewhat, but then, it is ALWAYS something! Hope you are able to get off yours too. Now good for us to be on steroid so long. Does damage to our bodies....