Have I got PMR?

Bob

Do you need diagnostic procedures and guidelines for diagnostics and treatment guidelines to throw at your GP. If so, email me via this site.

Mrs K and others

Thanks for the offer Mrs K but I don't think my GP is in listening mode at the moment and isn't going to take any advice from me. When I tried to tell her as diplomatically as I could that 20% of PMR patients do not have significantly raised blood levels it was like a red rag to a bull and I knew was wasting my time arguing with her any further at that point.

I am having further blood tests on Tuesday before having an ultrasound scan on my groin/hip, that the consultant arranged before Xmas, and in preparation have stopped taking Ibuprufen or any other drugs just in case they affect the result. I feel terrible but am hoping it may provide a more positive result. The pleasure I would get out of telling my GP what she can do with her diagnosis would be worth every moment of pain.

One further question I would like answered is do others tend to feel better as the day goes on. In bed and first thing I am in reall pain (all over but mainly in both shoulders and my right hand) and feel about 100 years old and completely useless. I take 60-80 mg of Ibuprufen each morning with my breakfast and by lunchtime I feel like a different person. I still ache but I can face the world and do things I couldn't do earlier. It may simply be the Ibuprufen but in the mornings I desparately need steroids to releve the pain but by the afternoon I could just about manage without. Is this normal?

What happened to the snow.

Many thanks for all your contributions and kind words that I truely appreciate.

Bob

Hi Bob,

I think your symptoms are classic, at least they're almost identical to mine. When PMR first hit I couldn't turn over in bed or get out of bed without help and without having a pathetic sobbing session. I could barely walk, I just shuffled along like a 90 year old. When I sat down I found it really difficult to get up from the chair and getting in and out of the car were really difficult. My shoulders, hips and arms were stiff, painful and weak and the first 2 to 3 hours of the day were hell. By about lunch time the symptoms would almost completely go and the rest of the day I felt reasonably OK. With or without Ibuprufen it didn't make a lot of difference. If I didn't take Ibuprufen I still felt better by lunch time. I've hardly ever had any of the stiffness in the afternoon or evening although I used to get very tired. I know of several people on this site however who have to endure the stiffness and pain right through the day. Without steroids I had to cancel mornings - nothing worked. Good luck with the tests. (And yipee regarding the lack of further snow, I have a knee well past its 'sell-by' date and daren't got out in the snow, I feel as though I've hibernated and was even reduced to cleaning skirting boards for amusement this afternoon!).

Lizzie Ellen

Yes my symptoms were exactly the same as Lizzie Ellen she could be describing me sobbing trying to turn over to reach my cup of tea my kind husband brought me the first time I had this The second time I didnt get that bad as my Doctor got me on steroids quickly because of prior diagnosis I am suffereing at present I was on 4mg early December but now on 7.5 mg as of yesterday still achy today but will try 7.5 again and get blood test organised and back to the Doctor I find it very difficult mentally to increase my steroids as I feel if I go back to 10mg I am back to where I was this time last year What a Struggle !! If others have had to increase there steroids have they got back down quicker next time ?? Roll on afternoons when we all feel better I have akways been a morning person !! For me Im sure this cold weather hasnt helped Perhaps Bob you should definately lay of the Ibrofen for as long as poss before blood tests and get a first thing appointment with your Doctor so she can see what you are trying to cope with ( I am assuming blood tests would be affected by ibrofen in a similar way to steroids ??) Good Luck

Yes, my my initial symptoms pre-diagnosis mirror those of Lizzie-Ellen and Mrs G but with the addition of a few bad night sweats. Would not want ever to be back in that situation of being unable to turn over but having so much pain in the hip I was lying on that to get on to my other side I had get out of bed and lie from the other end of the bed and this procedure continued throughout the nights until my poor husband eventually escaped to the spare room so that I could then walk around the bed to change sides!

Mrs G - I'm so sorry you have had to increase back up again. My experience was that increasing back up to the previous dose never worked.......I had to go back up to 10 in the first couple of years to restore the blood tests back to normal and then gradually reduced over about 6 weeks back down to 5 where the rheumatologist made me stay for about 5 months! I agree you feel as if you are getting nowhere but I can only say that eventually you will get there - since following Ragnar's regime when reducing below 5, I am now almost (crossing everything!) down to 2. As you say, I'm sure this freezing weather is not helping us and I'm now fed up with hibernating (yet more snow last night) and becoming stiffer with the lack of my daily walk, but the risk of going out there and falling is too great. The other problem is that being stuck indoors I'm finding it difficult to resist eating!!!

MrsO

Many thanks Lizzie, Mrs G and everyone else who has listened and responded to my complaint. I can't begin to thank you all enough for your comments which have been so helpful and convinced me 100% that I have PMR.

Lizzie - your latest e-mail was the final confirmation that I needed and your comment regarding getting in and out the car really hit the spot.

I feel that I have monopolised the site for far too long, and want to give others a chance, so I am going to end this thread but I will let you know in due course what the outcome is.

Here's hoping 2010 is going to be a good year for us all.

Thanks again

Bob

If I could only find out how to put one of those smiley faces here I would.

:D

:D :D

One last word Bob. Mrs O and I are just showing off with our :D :D :D .

Just click on any emoticon to the left of the page and hey presto, its in your text. Shows we still have a sense of humour.

Like Bob, I can't seem to get an emoticon. When I click on them all I get is :D or or etc - no cute little yellow faces - help??!!

Jayeeh

Wow! Cancel that last message - I now see that the symbols I see on the preview window, come up as real yellow emoticons on the posted message. :D :D :D :D

I can remember being confused the first time I tried it, Jayhee and then being surprised that it worked!

Do you think we all need to get out more? :P :P :P !!!

MrsO

Success at last and to make up for all the missing ones before.

Bob

Hi

Although a little late in this one I have found a lot of help in using this site and speaking to others but it gives me chance to look around for answers.

I am 44 and find myself with the usual concrete overcoat with painful left leg especially when walking but what I have found is no one is the same. Blood tests normally show a raised PMR in line with other tests, if this is the only raised level my doctor says if he tests everything else, refers me to rheumatology which takes forever, then the best way to fully diagnose is there's nothing else left. 15 mg of steriods once a day after brekkie will solve. Then others have no raised levels of any significance so it's one of those illness. Alot of these illness are related to auto immune illnesses something I'm ready alot about at the moment.

I'm fighting off the steriod issue listening to other problems about it but the greatest battle is getting the diagnosis and answer, it's been 2 years for me and I'm still going because I am `too young' to have this illness apparently although there's loads others on this site that due. Good luck, keep fighting and keep talking it does really help xx :D