new to pmr | Arthritis Information
hi everyone,first of all ,hope a good christmas was had by all. this is all a bit new to me.i am nearly 49 and was diagnosed with pmr 2 months ago.after a few months of feeling so bad and not knowing what was happening i just suddenly thought,after remembering dad had this about 10 years ago,if it was the same for me.after blood and ESR of 52 here i am.pain all but went after two weeks so dosage dropped......pain back.after reading some of your stories i suppose this is what i have to expect.i feel like my world has changed and i am not me any more..... i am PMR ! I dont know where to start,my dad just says i have to except it for what it is,bless him,took him 4 years to be free.if there are any ideas out ther to give me a start .doc says i am young to have this.lots of changes this year as blood also says menopause has started.dont want to come over as a moaning minnie but....HELP!THANKS ........HAPPY PAIN FREE NEW YEAR X
linnie, I wish that one of the old timers on this site were here to weigh in and bolster your morale, but I think Mrs E is out of town and not sure about mrs UK.
Anyhow, I'm sorry you have joined this unfortunate club. I was diagnosed almost a year ago, after almost a year of strange aches and pains and not knowing what was wrong.
We are all moaning minnie's here, and it helps to moan a bit, so feel free! You have to have somewhere to vent, and this is a good place. People are sympathetic and will listen to you. I've learned so much, and gotten a lot of support from this group. Here's another link to another support group I've gone to: http://www.pmr-gca-northeast.org.uk/
Stay tuned, I think you will find lots of help here. Happy New year--I wish it was one without PMR, but we do the best we can!
freesia
freesia22010-12-30 20:46:34Fressia2, yes Eileen is out of town, but will be back and I for one will be happy to see her posting again.
linnie, sorry to see you have joined this 'club' and yes your GP probably thinks you are too young for it, but we are finding more and more people joining who are outwith the spectrum.
One thing I want you to do is visit the link that freesia2 posted and read all the diagnostics etc. Also linnie ask you GP to do a Vit D test as they do not always do this and Vit D deficiency can cause aches and pains - just like PMR. It should be done as an exclusion test.
E-mail: pmrgca.southwest@yahoo.co.uk
linnie one thing to bear in mind, is that we have found that men cope with pmr better, have less side effects and also seem to recover more quickly. We think its hormones that make a difference, but as there is currently no cause or cure and out of every 100 people who suffer from pmr only 3 are men.
Also, visit http://experience.patient.co.uk/ follow the link to Polymyalgia Rheumatica and join the gang on there - loads of information, daft questions and answers.
Remember 'You are Not Alone' and we have produced a DVD, details on our website. pmr-gca-northeast.org.uk
Good Luck and remember it is not life threatening, just changes your quality of life and the hardest part is learning how to live with it.
thank you so much for reply.i will follow the links you sent.seeing doc on wednesday for another blood test result,will mention vit D.happy new year to you and thank you againthank you for your reply,going to look into the links Mrs uk sent.happy new year to you Hi Linnie - welcome to the club noone wants to be a member of!
You'll have read some of the links at least by now, I'm sure, and they will have provided you with loads of info. If you haven't done so, trail through the "back numbers" as they will give you advice and a feel for this disease. I was in my early 50s when PMR started (identifiably at least), I'm sure I'd had it before, but it wasn't given a name until 18 months ago after 5 years of being told there was nothing wrong "your bloods are fine". 15mg of prednisolone made a massive difference in 6 hours - nothing wrong eh??
There are all sorts of ways to assist living with PMR, as I did for 5 years - and the main one is to learn to say no. If you aren't up to it - don't do it unless you really, really want to. If you can afford it - get a cleaning lady if you need it but certainly a dishwasher was my saviour! Keep stairs to a minimum (just been reminded of that while I was away, 2 flights up and down 3 times a day for meals, plus the ones when sight-seeing!) - in PMR there is no virtue in not taking the lift! Put a basket at the top and bottom of the stairs and when you find something that needs to be the other end of them put it in the basket and get someone else to take it at some point. I found standing was very tiring too - more so than walking though that was bad.
I found Pilates and Iyengha yoga good to keep less stiff - done after an acqua aerobics class in a warmish pool. I was lucky in that the local Bannatynes gym had superb instructors in all so it wasn't terribly expensive. Now I have to manage without - but skiing provides a good form of exercise for the stiffness! Not that there has been much yet this season as the earlier accompanying temperatures of -17C with wind as well didn't appeal!! Keeping warm is always helpful if you are stiff - warm bed BEFORE getting out, warm shower, sit against the radiator if your back is stiff - you get the idea.
You are in the early days yet but you will feel better in time and learn to cope well. Acceptance is the name of the game - know your limits and don't forget or ignore them. Are you working? You come under disability discrimination if you do and that can help a lot. Keep in touch - here or on the patient experience uk pmr forum where there is loads of info and experience from a large group of co-sufferers, not to mention a good laugh, which is essential to keep your sanity! If you have any specific questions someone will always come up with an answer of some sort or know where to look. Ask away.
all the best, MrsE
thanks for your reply,very helpful.yes i do work and have managed to just about keep going now on tablets.bloods have started to go up again even without lowering steriods so dr refering to rheumatology.i have very bad pain in my left side of jaw.....no dental problems.....is this all connected to other pains. still trying to work it all outas i really feel a different person,is it tablets or pmr?thank you again
Just wanted to put my penn'th in to back what MrsUK has just said - as there could be a possibility of temporal arteritis you need to go to A&E and tell them you have PMR, that you have jaw pain and you know your blood values have gone back up. You will not be treated as a time waster - if you are it would merit a complaint! One visit too many to A&E in this case is far better than one too few. If you get any visual symptoms - blurring, especially soon after waking, black spots, anything that looks like a curtain across your vision - hot foot it to A&E - not your GP unless he is open and you can see him NOW. We don't want to scare anyone, but my optician recently told me about a colleague who is trouble because a patient went to him with similar problems, he waited overnight and she lost the vision in both eyes because if one a seriously affected the other can go within weeks. It is not to be messed about with.
wishing you all the best,
MrsE
Hi, Linnie and welcome to the forum. I noticed in your first post that you reduced your dosage after two weeks and the pain came back. Two weeks isn't actually long enough to stay on a dosage. It normally takes at least a month to get settled into a dosage before trying to taper. Also, you didn't give the amount of pred you were on or how much you tried to taper.
I started tapering 2.5mg per month until I tried going from 13mg to 10.5mg and within a week all heck broke loose. My body rebelled with fatigue I've never experienced before. I literally couldn't do anything but lie on the couch, even my breathing was labored so off to the emergency I went. Ended up with a shot of depo medrol and increasing my pred back up but it took a long, long time to get back where I started. Now I don't increase more than 1mg at a time.
Good luck and let us know how you are doing? Curious regarding the GCA symptoms!
just so glad i came across this page have recently been diagnosed with pmr been on steroids for just 1 week was convinced that i had been wrongly diagnosed until i read some of the symptons other people here are having. The cramps are a major issue and the stabbing pains, also the terrible energy levels been really struggling getting upstairs I work full time and a few weeks ago was actually struggling so much to get out of bed i was crying. I was given the impression by rheumatoligist that the pain would go after 3 days of taking steroids which of course isnt true but at least i am feeling some relief. i am 53 and feel as do so many others that my life has been taken away. Trying to keep optomistic though and reading the posts on this site is really helping thanks to allHi lynseylou, I have appreciated finding this site too. I am one of those who they are not sure of the diagnosis, either I have PMR or RA. But my symptoms are very close to PMR. I hear you about the pain and energy level. I have required higher doses of Prednisone than others with PMR, so that is one of the reasons they are not sure about my diagnosis.
You might want to start a new topic and introduce yourself more. There are at least 2 senior members who will respond directly to your questions and give your references to read too.
Welcome and good luck.
hi nanatjjj i was also diagnosed with RA first, steroids are helping but on quite a low dose i think 15mg for 2 weeks then down to 10mg Did have a kenalog injection before christmas which worked really well but only lasted around 4 weeks. I had never heard of this disease before and doctors are not very forth coming with info as they dont really want to seem to commit thereselves. The one thing that doesnt fit in with any of the 2 diseases was that last year i was trying really hard to lose weight and just could not shift it was feeling quite depressed at the time which i believe can be a sympton of pmr. Wonder now if it was the lack of activity which was stopping the weight loss Just feels so good to have someone to discuss this with as no one seems to understand how bad it makes you feel seems to me that it is not a very well publicized disease.Hi Lynseylou and welcome to our club no-one wants to be in!
The struggling with stairs is not just the energy levels - it is also that the muscles you use for going up steps are some of the ones most affected by the PMR - especially the thingh muscles - and it is a repetitive action which is the worst sort of movement to be affected. The not being able to get out of bed is also a very typical complaint from PMR sufferers before treatment with steroids. What the rheumy should have said is that the symptoms should improve by at least 50% within a few days if it is PMR - this fast improvement by a noticeable amount is very typical of PMR and some doctors take that as confirmation it is PMR rather than another inflammatory arthritis or something else altogether. If you have a lot of pain in your joints (due to bursitis, similar to housemaid's knee or tennis elbow) those pains take much longer to go away altogether and I find they are the ones which tend to return first if I'm under stress or having a real flare or trying to reduce the steroid dose by too much.
Since you say your are in England have you found the Patient Experience UK site which has a PMR forum with loads of other people in the same boat as you and some are similar ages to you. I was also in my early 50s when it first started and was told I was too young - nice thought guys, but not true!
The other site to be recommended is the PMR-GCA UK northeast support site where you will find info of all sorts and also support groups throught the country - there might be one near you. If you are still working, PMR brings you protection under disability discrimination and your employer can be expected to make things more convenient and comfortable for you in various ways - and, I imagine, it also alters the situation with time off sick if that applies. Nearly forgot - this site lets me put links (the UK forum doesn't)! See below!
best wishes,
MrsE (Eileen)
thank you so much for your replies feeling better already. when the problems first started i was diagnosed with housemaids knee frozen shoulder and the one you get it the wrist was told it was just coincidence that i had them all one after the other then when they kept recurring was finally sent for blood test. The more i am reading the more i am thinking perhaps they have got it right doctor didnt really explain that even with the steroids i could have bad days. Can i ask what if any other medication people takeLynseylou: if you go and have a look at the two links I gave you, you will find loads of info about PMR, how it is diagnsosed and treated, there is an article about steroids under the useful information heading on the left side of the page of the PMR-GCA support site - they are in ordinary English (written by a patient) but checked by medics for accuracy. The PMR-GCA UK charity has made a dvd which you can get for the cost of the postage and packing (only in the UK unfortunately as yet as the US money transfer systems available are too expensive) and which explains all about PMR, how it affects you and its treatment for both you and your family and friends to be able to understand more about it.
At the moment, the only treatment for PMR is corticosteroids (prednisolone) and they do not cure it, all they can do is reduce the inflammation which is the cause of the pain and stiffness to a level where you can function almost normally. The idea is to start with a dose of 15 to 20mg/day which usually reduces the symptoms a lot very quickly and then you stay on that for about a month or so to really get a grip of the inflammation (sometimes it needs a bit longer, sometimes less) and then you start to reduce the steroid dose gradually, usually first down to 12.5mg/day and then 10mg/day. Some people manage to reduce in that size of steps, others need to do it more slowly, by just 1mg at a time. Each time you reduce the dose the idea is to stay on that dose for a few weeks to make sure you are not getting any return of your symptoms before you try the next small reduction in the dose. The aim is to get to as low a dose as you can without the symptoms returning. Don't allow anyone to try to tell you that it is alright to take 15mg for 2 weeks, 10mg for 2 weeks and 5 mg for 2 weeks and then stop - that is what you do with lots of things you need to take steroids for - it doesn't work with PMR, the disease is still there and the pain will come back. The reduction needs to be gradual and you need to make sure you are OK at one dose before trying to go down again. Sometimes you will get a bit achey in the first few days after you try to reduce the dose: basically, if the pain starts soon after the reduction and then improves over the next 2 weeks or so, it was from reducing the steroid. If, on the other hand, it takes a few days to start and then continues to get worse - the new dose is too low and you should go back to the previous dose at which you felt well. If you had high levels for the ESR and CRP blood tests your doctor may say he wants you to have a blood test to see if they have gone down before you reduce the dose and will also do the test if you have a return of your symptoms to see if they have gone back up. If they weren't raised - they can't be a help in seeing what the disease is doing (mine have never been even a bit raised).
It's not a good idea to use painkillers like aspirin or ibuprofen all the time alongside the steroids - they all irritate the stomach so you shouldn't combine them. Most of us find that ordinary painkillers don't help anyway - the steroids act as the painkiller. Of course, if you have an ordinary headache you can take paracetamol - but if you develop a really bad headache, especially if your eyes are funny or you get blurry vision or loss of vision, then go to A&E if you can't get to your GP very quickly as that could be a complication of PMR called giant cell arteritis and it can cause permanent loss of vision - tell any doctor you see you have already got PMR.
Other things you should be taking are calcium and vit D supplements - you should have had both tested when your blood tests were done to see if they were low but you need them anyway to help prevent osteoporosis. You should be sent to have a DEXA bone scan soon to see how good your bones are as steroids may stop you absorbing calcium into your bones as usual and this puts you at risk of osteoporosis. If that happens there are things that can help it and it is something you need to discuss with your doctor - we have had a long discussion about the pros and cons of this on the other forum which I won't go into here. If you are taking enteric-coated steroids (red and brown pills) they shouldn't upset your stomach but if the doctor has given you white tablets they may irritate your stomach and you may need stomach protection medicine (called PPIs or proton pump inhibitors, like omeprazole, which reduce the acid in your stomach). If you are already taking the calcium supplements, you shouldn't take them at the same time as the steroids as they stop you absorbing the steroid: take the steroids as a single dose before or at breakfast and the calcium tablets at lunch and dinnertime in the evening (it says on the pack to take them morning and evening but that doesn't matter, take them with some food with a gap between the two doses).
I put on weight too - because of inactivity due to the pain, I couldn't do the same amount of exercise. The depressive mood is also part of PMR and you tend to eat to comfort yourself which doesn't help. I know it says you lose weight with PMR - you may, but not necessarily. It's like the steroids - they say they cause weight gain - lots of people do put on weight, but not all and some lose weight!
It all sounds complicated but you will get used to it and, in time, you will feel much better than you do now. You need to learn to pace yourself - I know that is difficult when you work but you have to prioritise what you do. Do what you must do first, then do what you can do but don't push yourself. If you can't do something - say so and don't feel guilty. You look OK, so people don't understand, noone knows what it is like until they've been there. It is an autoimmune disease and they typically are associated with fatigue - not the sort you can go to bed and sleep off, you wake up tired! We all know about that - but it will improve, but not to the stage where you are back to normal and where you are never tired - one day will be good, one week may be good - and then suddenly you will feel as if a ton of bricks has hit you. When you think about it you will realise you did too much 'cos you felt good! Learn by such mistakes. Many ladies keep a diary of their blood tests, steroid dose, what they did and how they felt, and that can be very useful to work out how much you can do.
This post is long - too much info at time is difficult to digest. If there's anything you don't understand, want to know more about, then ask again. If you look at the Patient Experience site and read some of the older posts you will find lots of questions answered - and if you post with a question there are lots more people there who will offer advice, suggestions and sympathy as well as laughs - just like here but a different variety!
all the best,
MrsE (Eileen)
Eileen thank you so much for this information it answers all my questions and has made me understand a lot more about the disease. It all makes sense to as a couple of days after starting the steroids and feeling a bit better i overdid it and sort of went backwards. As you say its very difficult for people to understand because you dont look ill. You have given me so much more than any of the doctors i have seen. I will look at the other links, Again thank you so much
Kindest regards
hi to you....it really helps to read these replys as you can pick some useful tips.i know how you feel.i really feel as i do not look or act the same anymore,been on pred since nov and dr trying again to reduce me but feel some familiar unwanted aches begining to creep back.one way i try to help myself is to walk...which i know can be hard when your hips ache...but it improves my mind so much,helps to focus for a while,and cools down the hot flushes.i hope you are ok,we are all in IT together.so hard at times.take care x
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