I am 56 year old living in London and was diagnosed with Pmr last October. I know I was probably naive but I honestly thought I would be feeling better or that symptoms would have be gone by now when I was diagnosed.
I joined the group today as am having a particularly bad day. No energy at all and aching shoulder neck and arms. My right hand for some reason is playing up today and I am having difficulty bending my fingers!!
I have generally been well since taking steroids but have "flare up" days every so often.
Am having bloods done tomorrow and then off to see gp next week. Should I be referred to the hospital do you think? I was under the rheumatology dept at the hospital but they said I had arthritis and had to live with it!!
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Osteoqueen
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Sorry things haven't gone well for you. Could you share a little more information, like what your dosage has been, and how you have been tapering? How long did you have symptoms before the PMR diagnosis. Have you had any relief at all?
My symptoms started over 2 years ago. I had a middle finger that would not bend, initially, and as I had private medical insurance through the bank I was working for at the time ( which I paid for at a reduced rate it wasn't free) I was referred to a private hospital in blackheath. Saw an absolutely rubbish consultant who diagnosed me with osteo arthritis. He gave me injections and when I was made redundant from the bank in August 16 I was referred to the rheumatology department at Kings hospital at the beginning of last year. By then I had achy shoulders and hands which they treated with localised injections which didn't last. By April last year I had severe aches in the tops of my legs and found it difficult to stand. I remember once bending down to get something out the oven and not being able to get up!! I had to crawl on all 4 to the sofa and push myself up! That was when my husband and sons said that enough was enough.
I work part time at an Osteopathy clinic and any time I had a treatment my osteo would say my joints moved far too well to have arthritis he said I definitely have pmr something I had never heard of!!
Went back to the hospital they said my levels were not high enough for pmr it was definitely arthritis. I explained I was having trouble standing from a sitting position and she basically said yeah that's what you get with arthritis live with it and she referred me to a pain clinic ( which I never went to).
By October last year, it was just getting worse and worse especially in the mornings so I went to my gp. I had read everything about pmr by then and was going to suggest I thought I had it. He said it before me !!! He sent me for blood tests they confirmed it he gave me prednisone ( I took 8 the first morning) and by lunchtime I felt so so much better. I haven't had pains in my legs since ( not usually connected with pmr I know!!). I now just have neck shoulder aches and heavy arms but mostly since October I have been good so not sure where this flare up has come from. Am off for a blood test tomorrow so let's see what that reveals.
If you have a flare up do you increase your prednisone intake? I took 6 day before yesterday and 4 yesterday back to my 2 today as I really don't want to over do it. That's why I feel I need help from more than my gp and all he says is I know how I feel so increase the tablets when I need to!
Sorry if I have gone on a bit!!! Nice to have someone to talk it through with who understands x
What a runaround you were given, I'm so sorry. I was undiagnosed by a young GP for over a year so I can well relate to your increasing disability. Good thing your GP recognized what the symptoms indicated. But everything PMRpro says is right. You do need more help with the condition, and right now probably more pred.
I am a bit confused by your description of your dosage. Did you start with 8 mg of pred? And are you already down to 2 mg? Or do your numbers refer to the number of tablets you take so initial 8 tablets = 40 mg????
On the plus side, once you've got things sorted with a specialist who knows what they're doing your GP sounds like he will be excellent at allowing you to taper as you feel able and not rush you as so many try to.
That's actually a bit of a relief. At 10 mg at least you are getting a good amount. Although 40 was a bit high unless he suspected GCA might have been brewing.
Are you pacing yourself? One of the things many of us find is we have to admit we've got a serious systemic illness and treat ourselves accordingly. Exercise, yes, but a walk not a strenuous hike, for example. And I find I really have to actively avoid stressful situations.
Mmmm ...I could say 'they should' - but to be more reasonable i guess a lot of them don't even 'know' (much) about PMR/GCA generally. Perhaps more frustrating is that when this is pointed out to them a few too many still seem to be unable to digest this info and keep on about the markers as the 'best' guide for dosages. I have told my own doc about this several times now and he still pointed out they were unchanged despite my recent 'flare'. I am starting to wonder though even more about what our expectations should be of the 'professionals' who are meant to be assisting us with health issues .... Sorry for the 'rant' - just feeling a wee bit peeved today!
My gp keeps saying to me you know when to increase your dose but little did I know until yesterday, when this fantastic group gave me their invaluable advice that, that I was increasing and decreasing back down far too quickly and that is messing up my symptoms.
Have small red spots this morning on my torso as well and bet that is related to the ridiculous way I increased and decreased my preds this week!!!
I don't know anybody who has ever heard of Polymyalgia - that I have said it to! My sister is a nurse - and SHE never even heard of it! Which doesn't help the cause!!
Oh I get you! When I moved here the local rheumy insisted on me having ESR/CRP checked regularly despite them never having been out of the normal range. I objected - because I had to pay for the tests!!!! However - to be fair, this new rheumy spotted that my ESR/CRP had run high during the 3 weeks or so I was in hospital with a myofascial pain syndrome flare and atrial fibrillation. So I CAN mount an acute response just not much of one to PMR!!!
And he is wrong - SYMPTOMS are the best guide for dose. They speak the unadulterated truth and aren't influenced by other spurious factors...
"they said I had arthritis and had to live with it"
I assume you mean osteoarthritis? Did they have imaging evidence? I was told that too - "I can feel it" she said about my knee and hands. Well, strangely, 14 years later there is no sign of OA in that knee - it was x-rayed because I had knee pain (which disappeared within a week or two of the x-ray having been there for weeks beforehand!). And when an orthopod said something similar about my low back pain - the pain clinic established it was muscular spasm and did something about it. Result - just about all gone pain.
If you have had that response at the hospital once - is there a lot of point going back to them? It will probably take forever anyway unless you go privately - which does at least mean you can choose a reliable rheumy. Or you could attempt to be referred to Chertsey to Rod Hughes - no idea how long you wait for NHS but private is usually within a week or two.
If you have as much pain as you sound to - I'd suggest 2 things: you need a tad more pred and possibly a good therapeutic massage/physio session, or at the very least a session with a really good physio to see if maybe you have the add-on of myofascial pain syndrome. Do you have any signs of carpal tunnel syndrome for the hand that isn't working properly? Is it swollen at all?
Do your bad days follow a good day? Are you maybe doing too much on the good days and paying for it on the following day? Pacing and resting approriately is key in living well with PMR - it can be done.
Actually i was going to suggest do you think I do too much on good days as that does seem to be the case that I am wiped out after. I am still trying to get the measure of it all.
I have stopped having treatments with my osteo which I loved having as I was in a lot of pain after a particular session but haven't restarted after starting prednisone as was unsure. I might try gentle osteo then. I find I ache after massages but could ask my masseuse to do a gentler session as well.
I actually went to Blackheath hospital in the belief I had RSI. My consultant did my believe rsi was an actual illness. He said why don't people that pluck turkeys all day have rsi but I thought I did because I used a mouse! Honestly that's what he said and he charged £250ph. Daylight robbery!!! He was ex military doctor and talked to me like a Sargent major!!!
Do you think you have trigger finger or is it more than one finger? It sounds like you should increase your pred dose a bit as you have dropped a lot in a short time and take it slowly is a good mantra. Did the pred help initially? If so you should be able to reduce with the same level of wellness so to speak. The pain may not go completely but life should be livable.
Thank you! I took some more pred this afternoon and am already feeling a bit better. I will speak to my gp next week about my hand but it is probably not connected to the pmr. I am falling apart!!!!
I often feel I am falling apart! If you have a good GP stick with them. There do seem to be a lot of doctors around who really do not know what they are doing.
Amazing someone who knows about trigger finger. I though just my luck I've had something else that I d never heard of. My right ring finger was released in a surgical operation whilst I was awake to check that it had been cured after the surgeon had cut into my palm and opened the sheath of the tendon. I can still just see the scar, he was a wow with his stitching how on earth he managed to get four stitches on an incision a centimetre long I'll never know. My little finger triggered during the surgery but he didn't do anything about that so I still have it. The middle finger of the right hand locks painfully without warning and has to be coxed to release itself. I did wonder if all these little extras were part of the Klinefelters but K.S. affects my life so much that I'll live with all the other things until they get too bad. I also have carpal tunnel syndrome and osteoarthritis in the left thumb and base of thumb, left index finger and left middle finger.
I left out the bit about the hand being frozen from a can. The surgeon said this is going to hurt a bit or something similar and I thought he was referring to the scalpel cut but no. He produced a can of medical grade icer and sprayed it over my hand. The pain was indescribable but the hand was instantly frozen and numb, he then said it would be a good idea to look away from now on I'll tell you when you can look back. His stuff was fantastic I didn't feel a think except the hand of the pretty nurse sitting at my side who said to me hold my hand it will make the time go more quickly. How do surgeons always have pretty nurses in their operating theatres?
The wise ones have given you good guidance about how many Prednisolone tablets to take and when each day. It never ceases to amaze me how many new patients come on to the forum to ask what you've asked. Why on earth doesn't the medical profession get their act together and have a standard dosage for PMR and GCA and when to reduce. I only have G.C.A. and I started on 60 mg a day and was held there for 28-days, before being dropped to 40 mg a day and so on until eight months later I was down at 10 mg. Then the inflammation got in on the act and I started to go up and down like a yo-yo. But that's another story anyway I've had G.C.A. for 4.5-years and am coming down from my second flare now on 8.5 mg a day until the blood is tested again on 26th July.
Hi Colin, the only reason I know about trigger finger is because it is one of the seventeen or so procedures that the NHS are no longer going to do, presumably to save money, along with carpal tunnel and dupuytrens from a hand point of view. I think they announced it last week. Sounds painful. I did have my hip replaced while awake with no sedation but that was pretty painless. The hammering was a bit disconcerting though.
I had trigger finger some years ago. Not being keen on surgery I headed to the physiotherapist who examined the hand then sent me away to come back another day. By then she'd done some research and showed me how to find the tendon, or whatever it is, which "catches" and how to massage the place and release it. Didn't take long and after a while no more trigger finger. Try that with your little finger. I also massage the joints of my osteoarthritic fingers. Circular motion, using thumb and forefinger of opposite hand, several times in each direction. Don't know why it helps, but it does.
Ho Oesteoqueen, From what I have read about your dosage I think your body could well be confused. Taking 6, (30mgs), then 4 (20mgs), then 2 (10mgs) on consecutive days is not norm. With a flare it is best to return to the dose you were previously comfortable on rather than increasing / decreasing by significant amounts, especially when many Rheumy's suggest a starting dose of 15mgs for PMR. It is also strongly advised that when tapering you should not reduce by more than 10mgs of your current dose. The impact of pred withdrawal can often be confused with increased PMR symptoms, so it is difficult finding your way through. Patience and hour to hour / day to day expectations are a virtue when hit with this disease, so I have found out with the support of members of this forum. It is a bumpy journey for all, with many peaks and troughs along the way. Best advice is to listen and respond to your body in a measured way.
I'd give a Rheumy another go, since follow up I. E. Scans, x rays etc are quicker to happen via Rheumy than via GP which adds another step to referral process. Plus you now go armed with PMR diagnosis! However Rod Hughes is very highly thought of in PMR circles. Perhaps it may be worth seeing him for private consultation with a view to further appointments being on NHS. I did this and was able to see the consultant I paid for privately for diagnosis on NHS thereafter Good luck.
That's what I need to get right how much pred and what to do when having a flare up. I have been in 10 mg since the new year and didn't know what to take!!!
I will perhaps next time double the dose for a few days and see how it goes.
Does anyone ever take say 2 in the morning and some more later in the day? Does that help or a really bad idea?
One thought is that if you have a flare adding 5mg to the dose where you had the problems should be enough. If you don't take it for more than a week you can usually drop back to the old dose or just above it without tapering.
You should be tapering the dose slowly to find the lowest dose that gives the smae result as the starting dose. Slowly means not more than 10% of the current dose for each step down - and even that is too much for many people.
This is a link to a reduction plan many people on the forums have used - it avoids steep drops which can overshoot the dose you are looking for and lead to a flare or alternatively cause steroid withdrawal rheumatism which can be so similar to PMR patients and doctors think it is a flare.
But you need 1mg tablets - you MUST be able to reduce the dose in small steps - you can cut plain white tablets but 2.5mg is still too much and cutting them into quarters is a pain and totally unnecessary.
If the antiinflammatory effect doesn't last until the next dose is due some people do split their doses. A good split may be about 2/3 of the total dose in the morning, the rest a couple of hours before you would expect the pain and stiffness to return.
I agree with PMRPRO. Try the increase from 10mgs to 15mgs rather than do straight to 20mgs again. Once stabilised you may consider a 2.5mgs drop to 12.5mgs by cutting your 5mgs tablet in half if the tablets are uncoated.
I agree with suggestion that you get a stock of 5mgs, 2.5mgs and 1 mg so that you can manage the smaller steps tapering or increases. If your tablets are uncoated you can cut them, allowing even smaller steps. if they are coated (gastrointestinal resistant) you can't. Now that I am below 10mgs I can only manage 0.5mgs reductions and even then I find it difficult. However my GP prescribes both coated and uncoated 1 mg tablets so that I can manage slow reduction that suits at any given time.
You have had a rough ride, I too have Osteoarthritis (OA) (have had 10 procedures) along with GCA/PMR. I had the OA long before the auto immune (AI) illness so knew something wasn't right, but I started with GCA first and those symptoms are quite different from PMR. I can understand the confusion between the OA and PMR but with the latter you will have extreme tiredness/exhaustion/stiffness and more pain. Listening to your body is key to getting the right treatment. At least you've got the PMR diagnosis now - the usual starting dose is 15mg unless your GP thinks you have GCA then it's higher. Do you have any problems with your vision/jaw?
The first thing I was taught was to know the difference between a flare and withdrawal symptoms, as they are virtually the same. When reducing listen to your body, it is normal to get a reaction, which if doesn't improve after a few days, maybe longer, then your body is not ready for that reduction and you need to go back to the previous dose you were symptom free on, make sure your GP/Rheumy know what's happening too as they will need to monitor you. Remember symptoms mean more than blood results. Your reduction will slow really down once you get to 10mg using the dead slow nearly stop (DSNS) method, reductions of 1mg, some cannot tolerate that and do .5mg as I do. It takes me longer to reduce on the lower doses and I've never got below 3mg. We are all different and what suits one doesn't another. My PMR is much less painful at the moment and will, at some stage, hopefully go into remission. Unfortunately the OA will not. It takes time but you will get to know your body.
Yes that does seem to be case getting to know my body and the levels of meds I need. My gp started me off on ridiculously high dose when I look at the comments on here but am down to 10 and usually quite well on that dose.
As in the middle of a flare up ( or steroid withdrawal really not sure) I have taken 15mg this morning and will take that for a couple of days I think.
It's seems it's all a guessing game with the meds - a bit of trial and error!!! My gp is obsessed with blood levels and this seems to be irrelevant listening to the comments on here. I will stick at 15 mg for a few days I think and reduce down. My gp basically leaves it to me which is fundamentally a bad idea!!!!
If you are truly in a flare, you may need more than "a few days" on a higher dose. Stay at that dose until you feel the symptoms have improved, before tapering by no more than 10%.
Search the 'Topics' on this page for 'Tapering steroids' and you'll find a 'Steroid Taper Web App' which lists any number of different taper schedules. Many of us use PMRpro's DSNS (Dead Slow Nearly Stop!)
Hi Osteoqueen, love the name Welcome to the club! I must totally agree with Pro above, be oh so thankful that your GP doesn't interfere, and be very careful about sharing too much wisdom! I and many others speak from painful personal experience on both counts. Left to your own devices (With the expert help here and a good supply of Pred!) it is reasonably straightforward to get to, and maintain/reduce at a workable rate. Good luck and remember to be very kind to yourself. Kind regards, Mike
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Welcome to the club! I must totally agree with Pro above, be oh so thankful that your GP doesn't interfere, and be very careful about sharing too much wisdom! I and many others speak from painful personal experience on both counts. Left to your own devices (With the expert help here and a good supply of Pred!) it is reasonably straightforward to get to, and maintain/reduce at a workable rate. Good luck and remember to be very kind to yourself. Kind regards, Mike 
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