Advice for newly diagnosed sufferer needed please

Hi,

I've been struggling for several months with the acute pain of what I now understand is PMR. I have been prescribed steroids and was feeling pretty optimistic until I started looking at this forum. Someone advises be kind to one's self and resting during the day. Has anyone any advice about how I am supposed to do this when I cannot lie or sit comfortably without acute pain. Every position I adopt, sitting lying reclining or what ever just hurts so much and there seems no escape from it. I am 61 and feel about 90. The least uncomfortable position is standing doing things which don't involve reaching out or stretching. I haven't slept in bed for about two weeks because it is overwhelmingly painful, I have just dozed painfully in an arm chair for a couple of hours at a time and then had to pace around the bedroom. Any ideas would be welcome please.

17 Replies

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  • That really sounds like untreated PMR to me. I can remember feeling like my bed was a table top I was trying to get comfortable on. My starting dose of 20 mgs of Prednisalone had a pretty speedy effect, I was euphoric!

    I can't help wondering what dose of steroid the doctors have started you on? It doesn't sound like you are getting enough. It sounds like your inflammation is running rampant and you are at a very acute stage of the disease. That is a horrible place to be no wonder all the advice about " pacing yourself" and "being kind to yourself" is infuriating. You're not there yet. You need to see your doctor to up your dose and explore other possibilities in case something else is going on with your health.

    The only pain killer that works according to the consensus on here is Prednisalone. But I have to say I took comfort in Tramadol in the early days. Maybe it still hurt but I didn't care so much ( slippery slope).

    I do hope you get relief soon. Let us know.

  • How long have you been taking the steroids, they can take a day or two to have an effect? There should be a magical effect on the PMR pain when they kick in though. As SheffieldJane says you may have too low a starting dose, but it does seem strange if you really have PMR, are taking steroids and are in so much pain.

  • Hello senetta

    Sorry to hear about your plight, I'm sure you'll get an avalanche of helpful replies to your post from the trusted experts and PMR veterans here.

    For what it's worth, I agree with SheffieldJane: if you have 'straight' PMR, either the current dosage of steroids isn't high enough to treat the worst of the symptoms and / or there is something else going on. The vast majority of PMR sufferers report almost instant and 'miraculous' relief from the crippling symptoms, once on the Prednisone. This was my case too.

    That said, none of us know your personal health context so my amateur (I stress, amateur) advice would be to knock hard on your GP's door asap armed with some reliable info about the condition (which you can get here or from the PMRGCAuk website), and emphasise that your symptoms are still intolerable despite the initial level of Preds prescribed.

    If he / she is on the case, they should know what to do (Plan A / B etc). Some GPs aren't up to speed with the Best Practice guidelines for treating PMR with steroids, so you might find yourself enlightening him / her in turn.

    Either way, you are in good and trusted company on this forum.

    Best of luck, keep us posted.. things can (and often do) get better :-)

    MB

  • It has all been said - if you are on enough pred after a week or so at the absolute outside you should have an at least 70% global improvement in your symptoms if what you have is the PMR we talk about here. You may not be pain-free - but you should be a great deal better than you are describing.

    PMR is the name given to symptoms of an underlying disorder - and there are several.

  • Hi again - many thanks to those of you who have replied. Symtoms built up from last November but I didn't go to the GP. (I tend not to rush into the surgery at the least little thing, preferring to wait and see what happens) My son happened to be seeing a private physio/acupuncturis/Shiatzuspecialist and so I asked his advice as I thought a GP might refer me to one anyway. After a couple of sessions, the physio was quick to point me to my GP who I ended up seeing on the 5th April when he voiced his suspicions. Bloods and x-rays done, I had a return visit to different GP on 11th and was prescribed 15mg Pred per day. Have had 3rd dose now. The miracle relief, I had heard about has not happened and reading this forum seems to indicate that the dose is not high enough. There have been subtle changes in that I feel more "creaky" and some feelings of tightness across my front shoulders are less, but pain levels have not reduced significantly. Lying on one side to attempt sleep is too uncomfortable for that shoulder, lying on my back or other side makes the other shoulder scream (and I get stuck, needing my husband to help me turn!). So after about 20 minutes of messing about like that, I end up moving to an armchair and footstool, which I can tolerate for about 4 hours....and here I am at 5 in the morning moaning to a group of complete strangers on the internet whilst almost weeping with lack of sleep and helplessness at experiencing so much debilitating pain with the prospect of all being exactly the same for the next day with the struggle to get upright, dressed and downstairs in order to smile and laugh with our Easter visitors.

  • Hello just to let you know it was nearly a week before I slowly noticed the difference and about three days before I could turn over in bed , I started pred Jan 18th ,still awake early but I can do so much more than the bad stage .

  • Hi Senetta - not everyone has the miraculous relief that many of us report - I was started on 15mg and had to increase to 20mg after 2 weeks. After a further week or so things got a lot better and reached about 80% improvement.

    I can well remember all the crippling pain, lack of sleep and general despair prior to diagnosis.

    BUT - here I am about to return from a very arduous 2week trip to the USA (having had to cancel for all the reasons listed above, exactly a year ago) and currently on 7mg Pred.

    SO - be patient after you get the right initial dosage sorted out - and I'm sure you'll find things get much better!

    Best Wishes

  • A study in Italy found that 75% of patients started on 12.5mg achieved the desired response in a month - which really is an awful long time! The smaller women did far better than the larger men - so there is a dose/weight relationship. Some people only absorb about half the dose - they are obviously going to require more than the ones who absorb 90% of the dose.

    In the past doctors usually started at 30mg and then it was decided that was overdosing on pred and that caused problems so they switched to using 15mg as the starting dose. Now the latest international recommendations

    rheumatology.org/Portals/0/...

    say, in Recommendation 3, that the lowest effective dose in the range 12.5-25mg/day should be used.

    If I were you, I would take this to my doctor and ask to try a higher dose. What I'm about to say is not a "do this", I'm not your doctor - but since today is Good Friday and I assume you can't even speak to your doctor never mind see him, if it were me, I'd almost certainly try a higher dose to see if it works to get me over the weekend. If you have only take a few days of a higher dose you can drop straight back to where you were.

    If a higher dose doesn't achieve rather more than the 15mg - your doctor may have to rethink.

  • I cannot sleep in a normal bed and I invested in a profile bed and with a little bit of adjustment from time to time I have found it a godsend. If I start to get a buildup of the pain I just alter the angles of the headrest end and the kneebreak until I feel the pain easing out a bit. Although I am now in PMR remission I still find it helpful in easing out the stiffness associated with arthritis. It is definately one of my best buys.

  • With such little relief on a normal starting dose makes me think that perhaps it's not PMR but maybe Fibromyalgia instead. At 15 mg you should have had a lot more relief then what your describing even if you need a higher dose.

  • I was diagnosed in November 2016 and started on 15. Though I felt way better than you do....I still was feeling pain every night. I asked my rheumi if she thought I should go up, and she upped me to 20...stayed there for about 3 weeks then went down to 15 again..now on 10. I think what everyone else is suggesting is probably right...you just need more and need to stay there until at least 70% of the symptoms are improved before you try to reduce. Put the wildfire out before you try to maintain.

    Let me tell you, this is the BEST place to be when you are feeling like you are. I was reading this forum every night and day and learning so much! In fact this forum basically let me see what was wrong before I even saw a Dr and allowed me to go right to a rheumatologist. The wonderful souls on this forum will save your sanity and make you realize this is not the end of the world..and in fact give you so much encouragement and hope!

    Hope you get the dose upped (unless something else is going on) and feel better very soon!!

  • Hi,

    Really sorry to learn of your problems.

    I am not a medical person at all, but if it is basic PMR that you have, then I can but tell you of my experience in the very early days.

    I reckon I was at the same pain and discomfort levels you describe, and I was started on 20mg pred to start with. This did not bring about instant relief, so, after 3 days my GP put me up to 30mg. I know this is above the recommended starting dose, but after some 10 days or so, I did get the relief that many people on this forum talk about. I stayed on 30mg for some three weeks and then started to taper down. Now, after nearly two and a half years I am down to 5mg.

    Consequently, my advice is the same as markbenjamin - go back to your GP to discuss.

    Good luck.

  • Hello, sorry you are having such a rough time.

    My story... in Oct. 2013, I was diagnosed with PMR And started on 20 mg prednisone. I experienced fairly quick relief. It was not total relief, but I was able to function. However, I couldn't sleep, and spent many nights on the internet, with all the other Pmr people. It was a comfort to know someone was always there, and within minutes or a few hours, I would get some answers to my questions, or some commiseration, at the least.

    As for missing sleep, I learned to take a nap every day...come hell or high water..or guests, or housework, or whatever... didn't matter, I had to lie in my bed, and sleep. ...and amazingly, the world continued, even though I was not running everything in it!

    You have house guests,...tell them what's going on...and let them help! Friends and family need to step up to the plate because if they don't help, they may not get anything on that plate.

    As a mother, we have always taken care of Everything. That what we do!

    It's time to let others share, it's Easter.

    Warm regards, Jerri

  • My starting dose was 50mg for three days, which is a lot higher than recommended and even that did not have the immediate miracle effect I have read about on this forum, but certainly released me from the pain and immobility of the condition.

    Before the pred was prescribed I was living on a cocktail of pain relief and barely able to move, now still have opiate patches, and dealing with it all on a daily basis. You will come to the place where you have to be kind to yourself but I agree with the others on here who say to go back to your GP. I hope things get better for you very soon, take care, Chrissie

  • Thanks to everyone for replying - all food for thought.

  • The symptoms you are experiencing is what my wife had prior to being diagnosed with PMR, and again after her dosage was lowered below 10 mg. She has found that staying at 10mg makes her functional, though not totally symptom free.

    Joe

  • I have just been through the same ... just as you describe. It has taken several weeks on 15 pred. For the pain to abate to manageable levels and for me to be able to return to work and just 'poddle' about. Sitting is still hard but I invested in some thick memory foam which I put on any chairs and my favourite buy is a bolster which takes the pressure off wherever I am feeling it. Lots of pillows help too. I am certainly not up to coping with visitors but my family and grandchildren are all here for Easter and they are doing most of the work!

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