Hi all again, upped steroids to 5mg from 4mg what the doctor asked me to try. I am suffering real bad with legs, hips and right shoulder !! Can hardly walk again, go hot and shivering so put thermal vest on in morning. Have to take painkillers after breakfast as can’t stand it no more, I was fine on 5mg till he dropped one off. Sleepless nights are getting worse as every time I must turn over in my sleep I wake up in agony !! It just feels like every bone in my body has taken revenge on me, how can I put this, like there is a chill in all my bones then I get flushes. Are these the symptoms of my PMR, Iknow the joints and muscles ( what I have left) are but what about these other things ?? Any help please gratefully received . Was thinking of going up to 7.5mg on Monday ??
Help, marg here again : Hi all again, upped... - PMRGCAuk
Help, marg here again
Sounds as if you have a couple of things going on. The feverishness is not usually PMR related - stick with paracetamol and drinking plenty of fluids, and plenty of TLC - but don’t let it get any worse, if it does you may need medical intervention - have you had flu jab?
The other pains could be PMR (unless it’s the onset of flu) so give 7.5mg a try - and don’t wait until Monday - start now.
Thank you, will start in morning or even go and take a 2 1/2 one now. I have never had a flu injection in my life nor my late 97 Aunty. We both worked on farms for years and as , doctor said we have both built up an immune system from getting colds or flu. I did for the first time in my life have the phnumonia jab last year as doctor advised because year before had septicemia and phnumonia and in hospital for 11 days. I was doing really well until he asked if I would try 4mg, at least I tried ( sigh ) will go take the 2 1/2 mg now, thank you , I am getting so depressed with it all now. X
Don’t get depressed. Maybe this will prove to your doctor that 5mg is the dose you need to be on at the moment.
Once you get through this - and start thinking about reducing again - do it in 0.5mg drops rather than a full mg at a time. Although many doctors don’t really believe it, half a mg really can make the difference between success and failure at such low doses.
Hope you soon feel better.
Don’t think it is my brain but took another 2 1/2mg and just starting to feel better !! After an hour, even the shudders have stopped, and the aching in my hips and muscles ! Fingers crossed 🤞 it carries on now x
Sometimes I am left to wonder about the level of knowledge some doctors display. You don't build up an immune system to colds and flu - they are viruses which mutate over time and the body is unable to maintain a long term immunity to them. That's why we don't get a vaccine for colds and need a flu shot annually. And when you have an autoimmune disorder it is a sign that your immune system isn't working as it should.
However - why not try a few days of 10mg (adding 5mg to where you flared is a standard bit of advice) and drop back to (say) 6mg and see how that goes?
Took another 2.5mg an hour ago and must say I do feel a lot better now ! So that’s 7.5mg today I have taken. Will do same tomorrow and see if it works again properly, shivers have completely gone out of my torso what I was getting. I do understand what you say about colds and flu, I worked on a farm from 12 years old part time and then full time when I left school until I was 25 and now 68 and never had a cold or flu since then. I have been so close up to my friends who do get it bad and I just don’t catch it, shouldn’t speak to soon !!
Actually a low grade fever is quite common, it was certainly a problem for me when I was first diagnosed. However, increasing the dose of steroids when you feel this ill is probably a very good idea as if it's flu, the extra dose will be needed and if it's PMR coming back it will also be required. PMRPro has given very good advice on this and how to drop down again. I also share her(?) views on some of my former colleagues. I think that many of them don't open a textbook or medical journal after the day they qualify and descend into what can only be called guesswork.
Hi, definitely not flu or cold, last night felt so much better after the increase of altogether 3.5mg. Muscles in leg ( what’s left of them) had calmed down and joints, this morning feel different again but not had breakfast yet so still to take steroids. When I do see my doctor again I have to tell him let me carry on doing myself as don’t want this flare up again ! I really was doing well on 5mg and had been this dosage for weeks actually. Thank you.
I think 4mg was too big a step down from 5.
It was , he is a lovely doctor but told him I will try, big mistake on my part ! I know he is concerned about my bones with what the steroids have done to me and my leg muscles from knee upwards slowly getting less. Even when I am talking to friends etc my brain goes blank on the easiest of words !! Very embarrassing.... wonder if anyone else forgets easy words ?????
Well I'm glad you're feeling better! Just remember that 7.5mg is considered to be the amount our adrenal glands produce every day anyway. Any dose below that is unlikely to cause further side effects, but tapering too quickly below that doesn't just risk a flare up but also leaving us short of our natural steroids as the adrenals take time to wake up after being suppressed by the prednisolone for so long. Slow and steady wins the race.
Think mine have died and gone to heaven ! ( a little humour) when I do eventually get back to 5mg I shall ask to go for another blood test. I am in no rush to cut down fast, just take my time again. Definitely don’t want another flare up like I just had, I had forgotten what it was like !! I was just crying all the time and getting depressed, must of been lack of steroids but feel so much better today. Just need this bursitis sorting next month now, goes from my hip to knee worse in bed. Oh well here we go again.... old age 🤪
All the time.
Remember you dropped from 5 to 4 not your Dr. I firmly believe that we must be in control of our medication not the Dr’s. only we can know the dose we are comfortable at, and I believe we are capable doing our own taper as who wants to stay on prednisone longer than absolutely necessary
Yes I did, just realised that ! My other doctor I see let’s me taper on my own, he says I know my own body better than him. I always seem to get depressed before a flare up, but feel great again today ! Thank you x
Hello, glad to hear you a feeling better! I have no practical advice for you as I am very new to this but hope you continue to feel well. Enjoy the weekend.
Thank you, hope you are ok x
One of reasons I stayed with my GP rather than go to a specialist is that he "keeps up" on so much information. He is relatively young compared to most of the doctors here. This area is considered a desirable place for many to eventually retire, so they kind of setup practice intending to do this later on.
That is good, my other doctor who diagnosed my PMR is brilliant he used to be a doctor in the navy. I won’t go to any specialist as don’t like being told by someone “ do as they say “ but at least mine listen to me, this is the first time my other doctor asked not told if I will try 4mg, I never gave a thought of having a flare up ! Never mind it has happened so I just need to get on with it again, with help from all my friends on here who understands x
Yes, my GP has a very busy practice. but when with a patient is relaxed, asks a lot of questions and listens closely to the answers. All his treatments are fully explained and wants a lot of input from patient.
That's good to know. Unfortunately it can be a matter of pot luck who you get.
I won’t see anyone else at my surgery, one of them actually owns it, a lot of people dont like him and have complained, but he is great with me and we get on well. Other 3 doctors I have not seen so don’t know what they are like.
Hi Margaret, are the pain killers working? If so the pain may be caused by something else other than PMR, as pred is about the only thing that really helps PMR to any extent.
Hi, I took an extra 2.5 on top of my 5 this morning and I feel so much better now !! Hips are stuck a bit after getting up off sofa otherwise ( not tempting fate) I feel so much better and depression going also. Joints in shoulder now gone and muscles in leg not half as sore ! Oh happy days once again ( hope lol ) x
Sounds like you may have been on too low a dose.
I was doing good on 5mg for weeks then my doctor last week asked me to try 4mg. 2 days later I was in agony literal! I came on here to ask as I forgot what a flare up was like, I took 5mg for couple days and nothing got better. Then after advice on here this morning I took another 2.5mg, hey presto !!! So will be taking that dose a few weeks I think before coming down by half mg.
You may well find 7-10 days is plenty - and makes it easier to reduce again.
I will try that thank you, lovely not having all my bones and muscles hurting me again ! Do I come down just half mg again ?
You can drop a few mg in one after a short time. If you decide 7.5mg is enough to clear things out then you could go straight to 6mg and see how you do. Not sure I'd go back to 5mg just yet.
Oh no won’t drop to 5 again so quick, thank you
You need to go up if you in that much pain absolutely then try tapering off after about three weeks I got diagnosed two years ago this month I finally gotten down to 3.7 of prednisone I keep trying to get lower butt then I'm in pain patience patience patience
Hi, you did well in 2 years, had mine 6+ years now and 5mg was lowest I had ever been on, never tried below that until doctor asked me. I won’t tempt fate ! I came down by 1/2 mg every couple months and did fine. One thing my GCA has gone into remission for around 8 months now or longer I can’t really remember, I would sooner suffer with my PMR than that !!! my local hospital call me every 6months for all my tests still, as had a blood vessel burst but a month ago last check up it had healed itself they said. ! Just waiting now to go musculoskeletal specialist next month, with this trochanter bursitis which won’t go, oh the joys of life !!
I also had GCA probably still do if I go too low then headaches start so it looks like I'll probably be on 3.75 I won't test it below that I'm an artist and I need my eyesight
Hopefully yours will go in remission at some point like mine has. Yes an artist needs their eyesight, I was told when first diagnosed because I never went to see doctor I could of gone blind ! Scared the life out of me 😱 biopsy I don’t know how I lay there awake !! Actually took the surgeon 1 1/2 hours, told me others did it in an hour !! but he had never lost a person to a stroke yet and never intended to. He spoke to me all the time and put soft music on for me lol there are so many nerves they have to be careful about ! I watched the operation on utube a week before !! Surgeon said he was pleased as I got to know how it’s done 👏 never again lol good luck with your painting !
Hi Mary, all seem to be common symptoms of which I find myself having when dropping down. It does get better each time they drop. I was.on 50 mg daily for over a year and now.on 4mg. Still have the aches pains sleepless nights and every now.and then the PMR hits to remind.me who it thinks.is the boss as it is doing with you. Hot and cold flushes, I thought I was having something different but no, GP said all.part.of the same. Keep.trying to come down when GP thinks able and good luck.
Hi, you have done very well in a year ! I myself 6+ years so far, but had GCA first of all and then the PMR followed. In remission with GCA which is a good thing as thought I was going mad ! This morning dare I say it 🤞 not long got up and feel different again, even though I did have a restless night ( nothing unusual) the joys of life and old age 🤪
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