first visited gp dec 2010 with severe pain and stiffness in muscles of legs and hips, upper body ached but not too bad, was told had back problems and prescibed pain killers, over the next month pain and stiffness spread to every muscle in my body bar my head, thank god. returned to gp end jan 2011 and was immediately diagnosed with pmr, 20mg of predisolone given and within 12 hours pain free. in may 2011 my hands became stiff and swollen and unable to open jars etc, very painful, gp referred me to a rheumatologist as he suspected rhuematoid arthritis, appointment within 2 weeks and yes diagnosis correct,now on 15mg methotrexate which after about 8 weeks relieved pain in hands, got down to 10mg prednisolone without too much bother.
but have been unable to go maintain lower dose for any length of time, have actually got down to 1mg but within 4 days am in agony. i thought i was beating this pmr but i am afraid it is beating me at moment.
very down, weight gain awful, at least have lost moon face for the time being.
i have had lots of support from my doctors surgery and my rheumatologist.
will try again to reduce steriods but at a slower rate, have problems with pressure behind eyes and constant water infections which gp puts down to steriod side affects, in jan and feb 2012 have appointments with various hosp departments to try and sort this out.
i did feel quite alone when first diagnosed and frightened as the pain was horrific but after finding this website and reading the forum feel more confident that one day i will beat pmr, i do realise that rhuematoid arthritis is different and is incureable but seems to be controlled by the methotrexate at moment. i was 63 when diagnosed.
I am no expert in pmr, except that I have it. I too was diagnosed in January 2011, and although I started at a lower dose than you, 15mg, I have taken this long to reduce to 7mg. I had a slight blip at 7.5 and had to go back to 8, but I have taken heed of all the advise on this and other sites and truly believe that slowly is the best bet. At the moment, and I am almost afriad to say this, I am enjoying the least discomfort I have ever had, and am having to restrain myself from dropping again. I dont have wonderful doctors, so I am eternally grateful for this forum
Gabriella
Hello Eileen from another Eileen! Sorry to meet you here as being here means you have PMR but on the other hand it's nice to meet new friends!
I have had PMR for 7 or 8 years, for 5 of them with no treatment at all as despite repeated visits to the doctor I was not diagnosed (no abnormal blood results, too young, blah, blah). I was finally put on 15mg steroids two and a half years ago with the same miraculous effect you experienced - and the consultant rheumatologist ignored that and wanted to make it some other form of inflammatory arthritis. My GP was kind enough to be convinced and kept me on the pred and I did get down to 7.5mg at one point but that didn't last long. I was stable at 17.5mg every second day but tried again to reduce to 17mg and it flared up again. I have had a year or so of ups and downs and am now happy at the equivalent of 10mg/day of pred (I'm now on methylpred which isn't quite the same). But the main point of telling you this is that to be on 10mg/day after barely a year is perfectly normal and you have probably been trying to rush things as far as the pred and PMR are concerned.
The fact they think you have RA as well does muddy the waters rather but it is perfectly possible to have both. You say you thought you \"were beating PMR\" - this isn't something you can \"beat\" using medication. The steroids haven't cured the PMR, they have reduced the inflammation that is caused by an underlying autoimmune disease process and this inflammation causes the pain in the muscles we describe with the name of polymyalgia rheumatica - many painful muscles. As long as the autoimmune process is continuing the symptoms will return if you reduce the dose of pred below what is needed to control the inflammation. In that sense it isn't any different from RA, it is another incurable autoimmune disease - but both RA and PMR can go into remission where the disease process ceases for a time. Why and how that happens isn't known, but it does happen.
Whilst a dose of 7.5mg/day is felt by many doctors to be an acceptable one for long term treatment as the side-effects are minor because that is similar to the amount of natural steroid the body would be producing anyway, being on 10mg after a year is not bad going. Studies have shown that 25% of patients will get off pred in less than 2 years but run a high risk of relapse, another 50% will take anything between 2 and 4 years or so and the rest will be on pred for a much longer time.
When they say it is RA - do you have a positive rheumatoid factor test or are any of the other tests positive? I only ask as I had terrible problems with my hands too with joint pain and unable to open jars or hold anything properly without pain. I don't have RA though - it was the PMR which caused bursitis in a few finger joints and the swelling and stiffness.
As for the bladder problems - I had those before starting steroids and I know others with similar problems. We think there is some connection with the PMR - it is certainly not entirely steroid-related and there is some mention in the medical literature of inflammation in the layer of cells lining the bladder. There is a great propensity to blame steroids for things - not always deserved!
Now you are on 10mg you shouldn't be trying to reduce by more than 1mg at a time - the experts warn against reducing by more than 10% of your current dose at any time. It also helps to stay on a new dose for a couple of months at least before trying another reduction. But if the underlying disease is still active you won't get below the pred dose that is right for the activity at the moment - and it isn't your fault or anything you can influence in any way. You have to be patient - and fighting against it just makes things worse in some ways.
Now you have found us do keep coming back and tell us how you are doing and if you have any questions we'll do our best to help with advice. And when you want a moan - we're
Hi
I have had PMR twice but nothing else thank goodness !
I think that is the difficult thing if you have 2 illnesses having a fight and not knowing which one is causing you a problem
If you feel it is the PMR your dose of steroid isnt high enough Im not sure what you are on now ?? They give you Mtxte for the RA but they also give it to people who arent managing to cope on steroids to control their PMR ?? After having PMR for 14 months this time I had to go up from 4mg to 15mg and now Im back to 4mg but Ive had it for over 3 years so a double fiquire doseage for you wouldnt be unreasonable so dont really understand why they are trying to get you off them so quick ??
I too have a large weight gain but as I am feeling so much better with the steroids its something I have to put up with and havent had any other probs with them
Hope you have some help from your next hospital appointments and dont give up because it isnt normal for PMR to burn out in a year 2 to 4 years is more common but if you can get your doseage right you will feel so much better
Mrs G
thank you all for replies, am heartened by this. eileen, i do not show RA in bloods but because my father was and my sister is a sufferer they reckon i am too. i really think it is PMR. i do not understand why i was told to reduce pred so rapidly, wont do it again as i have felt like death.
will return to forum regularly as i feel am now not alone with this even though i do get good support from medical proffesion for which i am eternally grateful, i will remain on 10mg until i return to see my rheumatologist in two months and take it from there, he has now conceded that i will be on pred for some considerable time.
thanks again for words of advice from you all and take care
It is fair enough to say that if it is in the family there is a much higher chance it IS RA - but the symptoms you describe can apply in PMR and other autoimmune diseases too though getting rheumys to acknowledge that seems to be difficult. The main confirmation of RA is either positive rheumatoid factors (and the other newer better markers) or signs of joint damage on x-ray. If the MTX helped that's great, especially if you don't suffer any side-effects - I hope you were given a high enough dose of folic acid alongside it?
There is a brilliant RA site called rawarrior with loads of info and support - well researched and presented by a girl called Kelly in the USA. I recommend it wholeheartedly - een for help with PMR problems!
Look forward to hearing from you again,
Eileen
well, i hope everyone has had a good holiday season with as little pain as possible. i have been pain free since returning to 10mg of pred for which i am eternally grateful. thanks again for all comments, it does help to hear from other sufferers.
i will not attempt any reduction for at least another month then am going to reduce by 1mg to see how i get on. i am most uncomfortable with the weight gain but it is better than the pain methinks.
Eileen - when you have a go at your next reduction try just 1/2mg rather than 1mg. And you could also alternate old dose/new dose for a week or so. Anything that makes the step down smaller will help with the reductions and at 10mg/day the maximum reduction you should be thinking about is 1mg, 10% of your current dose.
Eileen
will try that Eileen, thanks for that, woke up this morning with another water infection, sick of this, role on lst feb when i go to see a urolgist, you never know, he may be able to help me, getting these infections every couple weeks, had so many antibiotics that relieve symptons for a short time only. also had phone call from doc recalling me for more blood tests as problem with my liver, something is raised apparantly and as i am on methotrexate need to be monitored. if its not one thing its another but still pain free from my pmr.
Usually if you get antibiotics that only work for a short time it is because they are not clearing the infection fully, just sending it sub-clinical and once the bugs have recovered from the minor attack they cause trouble again. Have they done cultures to make sure it is the best antibiotic they are giving you? Trimethoprine will deal with most infections if you are given enough and that is what is used most of the time in the UK and (I know from experience) without a culture being done. But they only tend to give 3 days worth - wasn't enough for me. A week did a better job but it needed a different one, specifically for E.Coli, to sort it properly. The culture result showed trimeth worked but nowhere near as well the other ab.
The other option is that it is a different sort of cystitis, inflammation of the bladder lining, and a low level of bugs makes it worse, enough to cause symptoms.
It's a miserable life though - you have my sympathy,
Eileen
hello everyone, managed to get back after a great struggle.
some advice please, am having trouble with high pressure behind eyes, have been back to optician today and she again has written to my doc to refer me to hosp.. he originally said it is steriods and as he hoped i would be off them soon to wait and see, well it is getting worse and my rheumy ses i will be on steriods for some considerable time. am on 7.5 pred at mo. optician was shocked to see beginnings of cateracts in both eyes, i only had test in august and new specs in sept. she ses they are forming rapidly and reckons that it may be the steriods, oh heck, what do i do now. has anyone else had this problem.......
eileenstephenson
Yes, I have both high optic pressure and cataracts have developed during my time on steroids probably caused by my high starting dose of Prednisolone (40mg). Because of the risk to eyesight of my GCA, the high pressure and cataracts, I decided to see an ophthalmologist privately. Although steroids carry a risk of developing both glaucoma and cataracts, having high eye pressure doesn't necessarily mean that someone has glaucoma. My pressures are treated with daily eye drops. They haven't tended to control my pressures very well but the consultant checks the optic nerve 6-monthly to ensure that it remains healthy. The latest appointment revealed lower pressures than usual so I'm hoping that's the result of having been on a very low steroid dose for some time now, and await the next consultation with fingers crossed! As you are now on 7.5 Pred and heading in the right direction towards what are considered 'safer' doses, hopefully your pressures will return to normal and the cataracts will stabilise. Do let us know how you get on at your hospital appointment.
MrsO
Hi, just want say I also developed very bad cataracts because of the steroids. I have just been operated on one eye and am waiting for the other one to be done. I was taking 40 mg and am taking 7 now. I don't have pressure but did get temporal arthritis which was scary.
Lupe
Lupe - I've just written a reply to you on the other thread and took it into my head to scroll down through the old threads. This site used to bring latest posts to the top of the pile and they didn't get missed. This new format is a dead loss in that respect and something like this post of yours is so easy to miss.
You have also had temporal arteritis? You're right about that being scary! I'm flabbergasted your dose of steroids has been reduced so fast - that puts you at a high risk of the TA coming back too. MrsK took 7 or 8 months to get down to 20mg/day after GCA/TA being diagnosed and about 4 years to get to the "no pred today" stage. You obviously have both PMR and GCA which is not common but does happen. Please do come over to the other forum where you won't get lost down the pile and there are others who have had TA too - it's similar to but different from PMR if you see what I mean and the people who have had it will be so helpful to you.
Eileen
Hi Eileen, was really interested to read that you had PMR for so long, the interesting thing for me was that I woke up one morning about 4 years ago and could not put any weight on my right leg due to pain in my hip, we were in Florida on vacation at the time and went straight to a walk in clinic where they gave me an injection in my hip and some pain killers and within 5 hours it was gone, I never thought about this until I started not to feel well and a lot of pains in my joints, the strange thing is that my urine started to smell different, my doctor thought I was mad, before all this started I had had 3 knee replacements so I was used to pain. It is only in the last 3 months that I have seen a very good rheumatologist who has done many tests on me, I am seeing him privately, otherwise this would have gone on and on, he has come to the conclusion it is PMR, but will not start me on preds until the bone in my foot has healed, this is on the advice of the orthapedic surgeon, so will have to wait another 2 weeks, was really worried about going on preds but realise by reading all these letters it is the only way to get my life back. thank you so much for being there.
Hi Vanessa and welcome.
Yes, it would be interesting to know whether it would have progressed at that time without the cortisone injection then. Although I can identify that 5 years as being PMR because the symptoms were fairly clear as each appeared it just wasn't put together - mainly because I was in my early 50s at the time so "too young" and my blood levels have never been raised, they are actually very low for my age - I am sure there had been individual signs and symptoms for years before that. I'd had what was possibly the herald illness for ME in my 20s but that eventaully disappeared and I thought no more about it.
Mmm - funny about the urine bit too. I'm sure there is something there at times too but I have always thought it was maybe UTIs which I'm quite prone to. But it has changed in the last few months and I notice a different smell when I'm having a bad day. How very strange!!!!!
Being on pred isn't a picnic in the park - but it can be infinitely preferable to what can develop with untreated PMR. Above all, the pain relief is amazing. I was put on pred for 6 weeks initially and within 6 hours I could walk up and down stairs normally for the first time for months (years really). When I stopped the taper of 15 for 2 weeks, 10 for 2 weeks and 5 for 2 weeks I was in tears in bed 26 hours after taking the last tablet. It felt worse than before - but that could just have been the contrast. I am sure had I been left on 5mg at the time I would have been OK but the allowing the inflammation to get a hold again made it more difficult to reduce again. It's taken me four and a half years to get back to 5mg with a lot of rocky moments on the way. The biggest revelation in that time is the importance of reducing in very small steps - 1mg at a time is more than enough even from the start and spreading that 1mg over a couple of weeks at least makes a massive difference.
I also suffered from UTIs but never noticed a change in the smell, so wonder if this is PMR, wonder if anyone else has noticed this as it is not something you talk about. I have not been able to walk up and down stairs for years but thought it was due to my knee relacements, eventually moved to a bungalow. I also feel very tired.
I am involved in a reseach group as a patient advisor and we mentioned in a meeting that many patients complain of UTIs or at least irritable bladders and needing "shares in Tena". The rheumies expressed surprise at the time but one of them has since admitted that she now finds many patients complaining of such problems! I don't know whether it is really UTIs or just irritable bladder or even a combination - GPs are too quick to just hand out antibiotics so you often don't know but people do seem to find them very resistant - which they would be if they weren't due to bacteria.
The tiredness is part of most autoimmune disease - and that was a major factor in the ?ME in my 20s and also later in my mid-30s I was exhausted after walking upstairs and had hot flushes. My gynae put me on HRT to see what it did and it was like magic. I eventually stopped it after one too many of the media scares - I felt fine so wasn't bothered but it was just a few years later that the PMR started. I wonder now if they were all related.
never got hot flushes when I went through the change, but do get them now, am sure the urine problems are related to the PRM as now if I cough I have a problem, just so strange as it is not something you talk about but the change in smell all started at the same time as depression not interested in eating and painful joints, just hope this helps other people.
All absolutely typical of PMR! Lots of people blame the pred for the stress incontinence - in some cases it could be as that is one listed side-effect of pred. But I think it is more likely the PMR.
Ihave to say - I envy the people whose appetite goes with PMR! In the 5 years pre-pred I put on weight because I was less active and in the later stages craved carbs every afternoon - didn't know WHAT I wanted, just that it needed to be sweet which is absolutely not me! Within 24 hours of starting pred that went and with the first sort of pred the weight rearranged itself to around my middle. Then I was put on a different steroid and the weight absolutely piled on, not helped by spending 9 months on crutches. Third sort of pred - most of the weight is gone! Just about 10lbs to go to be where I was pre-PMR 10 years ago. That will be nice - albeit expensive!