PMR

Dottie

dottie, go to P on the Condtions and then scroll down to Polymyalgia Rheumatica. You will find a wealth of information under that heading specifically for PMR.

Also use the seach by keyword or term and type in PMR & GCA Support Groups and this will take you to the list of support groups on this site and give you the link to PMR&GCA UK North East Support website and also to a forum called pmrandgcaforum up uk.

I would put the website address in, put it may get blocked and delay this answer. Your GP seems as though he has no concept of PMR and you need advice.

Alternatively go to www.pmr-gca-northeast.org.uk and read all about it.

Emis Moderator comment: I changed my mind and copied MrsK's answer in to here and deleted the other duplicate thread. Hope this is ok

Dottie

If your Dr is correct in his diagnosis of PMR and treatment, you should have relief of your symptoms in a day or two, and this fast resolution of the pain can generally confirm the diagnosis.

BUT, if the above proves to be the case and you follow his recommended reduction programme taking you to 5mg in 10th days time, you are likely to have a full blown return of the symptoms which will then prove even more difficult to get under control.

In the case of PMR, and if the 30mg starting dose controls your pain, you really need to stay on that dose for at least a couple of weeks before attempting a reduction, and then by no more than at 5mg at the most. Then if all goes well, a further reduction to 17.5 and then to 15 can be tried.

As it appears that your blood test results showed inflammation at the outset, then you should be able to use those tests as a guide as to whether the inflammation is under control before continuing with each reduction.

Steroids do not cure PMR, they just control the inflammation that is causing the symptoms. Unfortunately there is no quick fix cure and PMR goes away when it wants to, sometimes for some lucky people in a year to 18 months but for others it can take between 2 to 3/4 years.

Take a look at pmr dash gca dash northeast dot org dot uk (have typed it in this fashion as the moderators will hold on to the post to approve the website if I quote it normally) where you will find a wealth of information about PMR, including the British Society of Rheumatologists' Guidelines for the Management of both PMR and GCA.

I do hope you will come back and be able to tell us that you feel much better in a couple of days. Then keep looking in an asking the questions and we will all try and answer them from our own experiences with this illness.

MrsO

You have been given all the right places to look so i wont repeat any of that

If he recognises it as PMR I dont understand why he doesent know how to treat it ?? You really should only be reducing very gradually Unless you have very high blood inflamatory markers most people are started on 15mg to 20mg

You really need to do your reading and get back in there to see him next week as you wont have enough tablets to keep you going Take the guidelines with you I hope he is approachable ! Dont be put off though as if you come off the steroids like that you may well have worse pain than before

Good luck

Thank you very much for all your help .After reading everything it seems he hasnt told me all I need to know and I may need more than the 2 weeks off work. Has anyone an Idea of how long.Thanks.

It really does depend on how you feel Its not really the going to work thats the problem its the 2 weeks to "cure" PMR !!

As you seem to work long hours standing I would imagine you would find it very tiring Everyone is different and Im sure some people do work with it

The real problem is if you have PMR you will not recover in 2 weeks 2 years is a lucky outcome but if you have a reducing plan on your steroid reduction you could well go back to work One thing with PMR rest is part of the recovery so you have to be careful not to overdo it

It is a very invidual illness and it is impossible to say how yours will be Your Dr has definately given you the wrong advice so far There are proper medical guidelines as others have said and they dont say short sharp treatment that is usually given to people with other illnesses

Dottie

As Mrs G has said, some people do manage to work once the steroids have got control of the inflammation thereby reducing the pain. It really depends on both how you respond to the steriods and to the work that you do - if your working environment is stressful, then that could hamper the recovery process. Some people have a period of weeks or months off work and then return initially on a part-time basis. It very much depends on the individual. I do hope you will be one of the lucky ones and have a smooth journey to recovery.

MrsO

Dottie

As Mrs G has said, some people do manage to work once the steroids have got control of the inflammation thereby reducing the pain. It really depends on both how you respond to the steriods and to the work that you do - if your working environment is stressful, then that could hamper the recovery process. Some people have a period of weeks or months off work and then return initially on a part-time basis. It very much depends on the individual. I do hope you will be one of the lucky ones and have a smooth journey to recovery.

MrsO

hi i will not repeat the info from the other posts suffice to say your gp has got this completely wrong he is not giving you the right info and regime ,please read all you can on the subject and go back to him fully informed .i am 16 months on and still feel totally whacked fortunately i am retired because rest is part of the treatment ,also it has taken all this time to get down to 9mg with monthly blood tests etc ,you will need to be on adcal to protect your bones . come back to us with your ??? because its a bit like walking through treacle at first but getting to know about pmr is the first step in getting control of the situation ,good luck we are here to help carolk

Thank you all very much for your help. I did'nt know who to ask as my Doctor seems to know very little on the subject . From the advice from from you all, I am going to ask to see another Doctor. A very big Thank you.

Dottie - it isn't just another doc you need. You have the directions to get to the northeast support site and you can download the guidelines from the British Association of Rheumatologists for diagnosis and treatment of PMR. Take a copy with you and fight your corner. I had a rheumatologist who gave me a 6 week course of pred, 2 weeks at 15mg/day, 2 weeks at 10mg and 2 weeks at 5mg. Then stop. The result initially was a miracle - regarded by many docs as pretty much diagnostic of PMR - but within 48 hours of stopping the 5mg doses I was worse than before.

The pred only controls the symptoms, you usually start at about 15 or 20 mg which deals with most cases and then reduce slowly to find a dose that keeps you functional. If you need to work, you will likely need a slightly higher dose than someone who can cope with some pain and stiffness and the pred doesn't always help with the fatigue. It is possible to work - but it depends on the job. I worked for 5 years with untreated PMR. It wasn't severe and I am a freelance translator - I managed despite feeling pretty ghastly at times. Sitting at a computer is relatively easy. It would have been a different matter had I had to commute and then had a physical job to do.

Good luck - and let us now how you get on.

Eileen

Thank you that has been very helpful .D.

Dottie, I was diagnosed two years ago and after the initial 15mg of pred was euphoric and able to do thing had not been able to do for months beforehand..... THEN my rheumy dropped me to 10 mg after three weeks..... oh boy! Back to all the horrendous pain and took my doc three weeks to get on top of the inflammation....... but she had to take me up to 20mg to make me comfortable...... I then went down 1mg a month..... have had a PMR flare and back on 10 mg and have just started to go down half a mg at a time...

This is not a disease you can control with huge jumps...... it is a long term disease which demands slow decreases so as to ensure the inflammation is kept under control......

It can take anything from two years plus and many I now know many years more to see the back of this disease. Be prepared for the longhaul! xx

Thank you fiftiesgirl. I am now on the last 2 days of pred( 5mg) . The pains have come back and I feel like I could sleep all day. I am going to see a diffrent Doctor tomorrow so fingers crossed for a little more understanding.

Hi Everyone

Been a while since I chatted to you all tho I read the discussions fairly frequently

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I am now on 9mg of pred - began in Feb on 30mg - tho I can't say that I am jumping around like a spring chicken! Its all a balance isn't it? Between trying to reduce the blessed steroids and putting up with pain that is manageable but still allows for the dog walking and housework etc without having to take things easy for the following couple of days!! As seems to be my pattern.

The comments that this is a very personal disorder is so true. My doctor's advice to 'play around' with the preds was SO helpful! But we have to listen to our bodies and try to do what is best for ourself. The amount of discomfort that one of us is prepared to put up with will be very different to another person.

One of my main gripes is that my doctor - she's really ok - still has not really talked to me about PMR and how it all pans out. I got a leaflet from the physio but everything else I have learned from you people and myself.

I am lucky to live Suffolk and I know there is a very strong support group in Needham Market.

I recently had a weeks holiday in Paxos and the warmth was glorious. The car journey to the airport and the restricted space on flight did make me more aware of the PMR and an hours walking was my maximum - this from someone who used to take trekking holidays in the Himalayas for fun - but all in all it was great. Shame that the weight gain from the lovely preds made me reluctant to show my no longer sylph-like body on the beach!!

But I keep telling myself it could be lot worse. So many of you are obviously much more incapacitated than me and I just wish you all lots of positive thoughts and maybe one day when the summer really comes to stay, the sunshine will make us all feel brighter.

wendyanne

You can do no better that join that support group,. The last meeting they had the Guest Speaker was Professor Bhaskar Dasgupta, world leader on PMR & GCA.Their last newsletter would be worth the joining fee as well.

Also you could visit pmrandgca stop forumup stop co stop uk