New to PMR - Questions????

[i]Karen M. I am also up early...and reading my friends comments, in my page. I am under \"Polymyalgia hit me from nowhere...\" You will find a lot of help and advice in how to cope with this nasty disease. To me, it seems that from 15mg you are dropping the dose too quickly. But then you do not say how much pain you have and where in the body. May be you are very lucky. The rest of us, are dropping the doses much more slowly, and stay on each dose quite a while. I think that if you read the advice from EileenH, she seems to know much more. She is on my pages,.and other links. I also take Calcium tabs, one in mid morning and one mid afternoon. Also a vit a & d capsule. Also, a Lansoprazole capsule with the Teroids (it is a gastro blocker) Also had a jab in my tummy against blood clots. Hope to have been of some help. Granny Moss.

I am new to this forum and I am fully in agreement that it is stress related but like you, Karen, the drs don't want to know about that theory! I have been under considerable stress for over 2 years with 4 nonogenarian parents at considerable distances (2 are in-laws and 2 have died over the time period) and the day after we scattered my father's ashes in early November this kicked in with backache. So yes I tried osteo - waste of time , then physio who sent me to dr for blood tests, and the rest is history as they say. Miserable condition that makes me stop as like you I carried on doing everything through all the family stuff. I have had to give up my business and learn to pace myself.

I get night sweats and early waking at 4.00a.m., but not every night. I am aged 64 and after two weeks on 20mg I am dropping to 15mg, but I didn't take in for how long the dr said I was to remain at that dose.

Oh dear!

Hi Karen, and welcome to the club! I'm sorry to say there seen to be a lot of new members recently - which is nice to have new friends but the reason they are here is less so! :lol:

Anyway to deal with your questions:

First of all, if you have time, work your way through the posts on the site. You will generally see from the first post or two if it is going to be one that has lots of info for you or whether we are just catching up with the rich people :roll: who are able to hope off to Egypt, the Caribean or their other home in Spain! Not that I can talk - I'm 85% on holiday in my Italian flat half way up a mountain! At present I'm just waiting for it to stop snowing long enough to make it worth going out to ski. However - you will find answers to most of the questions you can think of plus a load you haven't imagined, already out there. It's better than watching TV - funnier and more useful and informative! And all from people who have been there, done that - not to mention books, T-shirts and films.

Secondly - if you look at the current thread \"Newsletter\", in the first post you will find the web address of the pmr-gca uk northeast support group where you will find all sorts of info including the British Rheumatology Association's guidelines for the diagnosis and treatment of PMR together with articles from both docs and patients about living with it and steroids.

Next: stress. Yes - many of us had our first severe brush with PMR in the wake of a stressful experience. I think I have had it for many years in a mild form, slightly less mild for about 5 or 6 years but it hit like a ton of bricks for the first time after a stressful experience. Others will agree with a description like you give.

Going down the dose of steroids: 15mg is the normal starting dose, occasionally 20mg may be needed, and it is typical to be able to go down to 12.5mg/day easily. It's after that the fun starts. At 12.5mg I was fine but at 10mg the pain was starting to come back and was there within a couple of days and got slightly worse. Originally a rheumatologist put me on a trial of 15/10/5 mg/day for 2 weeks each and within 2 days of stopping it I was as bad as before. The symptoms had responded in 6 hours so that was pretty confirmatory of PMR but he didn't agree - luckily my GP did and has continued the steroids but I found it harder to reduce the second time round. I got down to 13.5mg/2 days (I take double the dose on alternate days, fewer risks of side-effects and can be used below 10mg/day for some people, doesn't work for everyone) but had to go back up in the summer because of a flare-up. I am really struggling to get down from 17.5mg/2 days now. So don't be absolutely desperate to reduce for the sake of reducing. The best guide as to the dose you need is your body - if you have any return of pain go straight back to the last dose at which you were fine and then try again later. Remember that the steroids have not cured the PMR - they have reduced the inflamamtion toa level where you can live with the disease. Reduce the steroids too far, the inflammation will start up again and you'll have to start over again and it may not be as easy.

Reducing: on the pmr-gca site there is an article about Ragnar's method for reducing the dose. RAgnar is a Swedish gentleman who devised a very slow method of reducing which was successful for him. Usually the difficulties arise below 10mg/day and then again at between 3 and 5mg/day, for some reason. However the basic rule as given by the \"big boy (and girl) rheumys in the medical textbooks is never reduce by more than 10% of the dose you are on at any time. So at 12.5mg, 10% would be 1.25mg. I assume you are taking enteric coated pills (the coloured ones, 5s and 2.5s) so you can't cut them. Either you need some 1mg tablets (not enteric coated, plain white, can be cut) or you will need to do some fancy maths! The following suggestion would work with just 5 and 2.5 pills

Hi newroadwoman - and welcome to you too. If you've got this far you've read my epistle to Karen - I knew it was long but not that long! :oops: I hope it helped - do the reading, visit the pmr-gca uk website.

I'd take the 15mg for 2-3 weeks and if you are fine at that you could consider going down again. You need to be on a dose long enough to know the PMR hasn't wriggled to the surface again. It's later that the probs will arise reducing the dose - see Karen's answer. Many GPs are not up to speed with the disease, you've both been very lucky to be diagnosed quickly. Some rheumatologists aren't brilliant either. The main thing is not to be bullied into reducing the steroids too quickly and risking the symptoms coming back. Download the guidelines and take them with you for the GP if necessary - they often think that you can get off the steroids quickly once the symptoms are controlled. NO!!!!!!!

look forward to hearing from you both again soon,

EileenH

[i:54475f84b9] Hi Karen M, it is me again. I see that lovely EileenH has responded to your cry for help. She is the custodian Angel of all sufferers on these sites..She is working hard and her advice invakuable. I will not be long, but last night it came to my head a type of Limerik...and I thought it may cheer us up a bit

I have a disease Problematica...

it's called Polymyalgia Rheumatica..

it comes and it goes

but nobody knows

the cause

of Polymyalgia Rheumatica,

a NASTY disease Problematica....

All the best, Granny Moss[/i:54475f84b9]

[i:735a7f1f22] Hi Karen M, it is me again. I see that lovely EileenH has responded to your cry for help. She is the custodian Angel of all sufferers on these sites..She is working hard and her advice invaluable. I will not be long, but last night it came to my head a type of Limerik...and I thought it may cheer us up a bit

I have a disease Problematica...

it's called Polymyalgia Rheumatica..

it comes and it goes

but nobody knows

the cause

of Polymyalgia Rheumatica,

a NASTY disease Problematica....

All the best, Granny Moss[/i:735a7f1f22]

Hello to you both

I cant add to anything Eileen has said very comprehensively but there are too many people on here who have developed this after stress for it to be coincidence but when we get run down when we are overworked through physical or mental stress I think some illnesses just creep in and attack us !!

I was told by a Pharmacist not to take Calcium within 3 hours of my steroids so havent since

Best wishes

Mrs G

[b:b886318877][size=24:b886318877][/size:b886318877]This is a response to the question is pmr stress related. I think it is very possible because earlier this year I havd an experience that for a few days made me feel anxious, traumatised, a complete wreck. During a period of 7 days I was not sleeping, and was at some times very distressed. I said to a friend at the time that I was feeling as if my body was taking a batteringbut could not explain what I wad feeling. Afew weeks later, I began to feel the first symptons of pmr. I am convinced my experiences led me to get this decease. Mind you knowing that stress may be the cause does not really help b ecause we cannot stop the experiences we have. In the last 4 years I have had one thing after another, even though in those 4 years I have tried to live a healthy life style, eat the right foods, get regular exercise etc. BUT I am not a \"laid back\" person, I worry.

Never mind-at least we know by this web site - we are not alone. /reagards pmr Jean[/b:b886318877]

Hallo Eileen and everyone else,

Thank you so much for the welcome to the site and for your comprehensive and helpful replies. I am going to print out Eileen's guidance and read it through at more leisure. I agree with the shock and adjustment to having this disabling condition, having been so active previously. I intend to try swimming tomorrow - well very gently - but am a bit nervous. I had also thought of acupuncture.

Is anyone else on Alendronic acid? I have been prescribed it and am expecting to start it tomorrow to protect against the damage that steroids are doing to my bones. 1 tablet a week. Slightly nervous about that too, but I have friends who are on it for different reasons and it is said to protect against osteoporosis. Someone said I should have a dexta scan to measure the thinness of the bones as base level.I am due to see the rheumatologist in mid January anyway. I shall stay on the 15mg till then I think, as my pains are more noticeable today having reduced from 20mg yesterday, but I may phone the dr to check anyway.

Knowing you are all so friendly and helpful, I shall throw caution to the wind and you can call me Margaret!

Hello Margaret

Yes we are very lucky to have the help of Eileen on here to chip in with all the medical knowledge we dont have !!

Yes I have been taking Alecdronic Acid for over 2 yrs with this bout of PMR but with my first bout of PMR I wasnt given it but did have a Dexa scan My Dr said that thinking had changed and they were on prevention rather than cure I have had another Dexa scan with this bout of PMR also

I have had no problems taking Alecdronic Acid but the only reason I dont like taking it is I get up early in the morning to take it have to take it with tap water ( always drink bottled water ) and I then have to stay upright for 30mins before I can go back to bed for my cup of tea !!! but no problems really

Best wishes Mrs G

Thank you all for your helpful comments and suggestions. I must say letting my husband read Eileen’s reply was very helpful for him to gain more insight into the condition. I find it very hard not to be on the go all the time, but am struggling some days with fatigue when having over done things – a lesson for me to pace myself, as you suggest do the things I want to do. I am fortunate that the job I am doing at the present time is office based with flexibility to move around when I want. The team I manage are all aware of my condition and my line manger has offered me a referral to Occupational Health when / if I want it. At the present time I’m OK but will use it if I need it in the future.

I’m going to give a phased reduction a go from 12.5 to 10 over the next few weeks and see how it goes.

I would be interested in any comments about diet –must admit we tend to eat reasonably healthily, I’ve never smoked and have the occasional glass of wine about once a month and maybe a small Bailey’s once a week... not over indulgence there.

Again any suggestions for moving the steroids to Oz time will be useful – we fly from the UK at 10am and arrive in Perth the following day in the evening at 6pm. The time difference is 8hrs. I’m sure someone out there has previously worked out the best way to move the tablets and the time..... if so would be grateful for the advice, I think I naively thought I’d just take on the Monday morning as normal and then about 24 hours later then on the Wednesday morning in Oz.

Thanks again for the information

Karen

Margaret and Karen - a couple of notes:

During the time I hadn't been diagnosed I found aqua aerobics very helpful in getting moving - but only in a warm-ish pool. If the water was cold I really suffered - and if the water was too warm I got very exhausted (I found out both because we had loads of problems with the gym pool heating!). But it really helped and I could then go on and do Pilates and yoga classes afterwards.

There is a DVD from the pmr gca uk northeast support group which helps explain to your friends and family what pmr and steroids and all mean in terms of affecting your life - you may find it helpful.

There is a thread from a few months ago about the alendronic acid - it is a bit controversial. There are problems with taking it very longterm despite the company's marketing claims and it is associated with the development of several unpleasant side-effects if you take it over a very long period. The recommendation nowadays is not to take it for more than 5 years. The majority of bone density loss with steroids will happen in the first 3 months (I was told by a rheumatologist a couple of months ago). I am of the opinion that you should have a dexa scan done within the first few months of starting steroids and the decision to take alendronic acid should be made on that basis. Mine was done after I had been on the steroids for about 3 months and was fine (mostly slap bang in the middle of the range but with one vertebra with a slight loss of density). I don't take alendronic acid (I took about 12 I think) and the rheumy is quite happy with that - and for me to continue to ski!). However - try taking it, you may develop stomach discomfort and have to discontinue it anyway. Some people really have problems with it. If you DO lose bone density there are other drugs to use if necessary - they're more expensive, of course! I will wait and see if I ever need it.

MrsO is the diet person - she'll tell you the good things! But keep carbs down and protein up - that will help with the weight gain aspect of steroids.

cheers,

EileenH