Hi, I was diagnosed with PMR, put on 15mg Pred after 3 months ESR only down from 37 to 31, Dr. says no PMR, stop pred but go back in 3 wks.

[tiggersue]

I have terrible problems with my legs, trunk and arms. Crampy and like something is fizzing in my legs. I have a lot of pain in my shoulder blades and my large joint on my left thumb. I get sudden sharp pains in my arms and legs. They feel stiff and achey. I feel very confused as the feeling of shaking, fizzing is very distressing but the Doctor doesn't seem concerned so therefore doesn't offer anything to help. I came off the Pred in just 3 weeks. I have to go back in 3 weeks for more blood for ESR and then perhaps see a Rheumy as it isn't atypical PMR as the steroids didn't have a huge influence on my ESR marker. Anyone have any thoughts? Thanks.

[Hidden]

Hi Tiggersue,

Unfortunately I'm in the same kind of situation and been there since before Christams with still no resolution to the problem.

The symptoms you describe are exactly like mine - even to the pain in the joint of my left thumb!

When I first went to my GP with this she diagnosed me with PMR. The markers were way up, and as an aside my vitamin D count was way down to about 20% of what it should be. She put me on Pred and after about 3 weeks and a test which flummoxed her because it showed no markers, she took me off and diagnosed me with Fibromyalgia.

In March I saw a rheumatologist whose report showed that I may have PMR but further tests would need to be done. Those tests I'm expecting to happen in July (what a wait!). Meanwhile I'm on nothing but amitriptyline and Zapain and I shuffle round like an old man whose lost his walking stick.

What I would suggest is that you get your GP to tie it down, and also to check out your vitamin D levels as this could be a factor. And remember that you're not alone.

All the best,

dan

[Polywotsit PMRGCAuk team member in reply to Hidden]

Dan - having to wait so long is outrageous! Would you be willing for us to quote you in a meeting we are having at the Department of Health? We need to get case studies like yours to demonstrate how patchy and inconsistent treatment is. If yes please send us an email with a few more details e.g. what part of the country you are in, age, whether or not you are at work. We won't give any personal information.

thanks

Kate

[Polywotsit PMRGCAuk team member in reply to Polywotsit]

Sorry! [e-mail]

[Ponywoman in reply to Hidden]

Hummm, I'm in Kansas, USA. Had to wait 9 months at least to get in to see a Rheaumatologist who could also treat my numbing Vasculitis in my feet,legs & arms. The current/former Rheaumatologist told me she had "no idea" what was wrong with me. So meanwhile, while waiting to see new Doc at KS University Med Hospital, could no longer work all day on my Appaloosa breeding farm. Biopsies delayed for 1 year. By this time, both feet had foot drop which put me in this wheelchair I'm not compleatly out of yet! Diagnosis: Rheaumatoid Vasculitis & Rituxan Infusions started. All this wasted time waiting & waiting. Much belated Rituxan could only bring back the foot that had most recently dropped. I could only find the 1 Doctor in large city of Kansas City to treat my symptoms! 2 other similarly qualified Docs were taking no new patients. Have had RA since about 1971-72 & always hard finding Rheaumatologists here. I have insurance-- Medicare-- too. Better have! Each Rituxan infusion bills me $49,000! Medicare settles the bill by paying around $10,000 each infusion. Start my 9th infusion Dec 1. If had been able to start infusions 6 months earlier, I'd never have seen this wheelchair!

[Annodomini]

Tiggersue, Sympathy. My doctor sister says that ESR is not a definitive factor in diagnosing PMR. Instant reaction to steroids is also influential. My markers went down quickly, but CRP is up again and I do still have PMR. Some doctors do have an imperfect understanding of the condition. Your symptoms, which sound pretty scary, could surely be due to over-speedy withdrawal of prednisolone which can be dangerous.

[tiggersue]

Hi, thanks for sharing your PMR problems with me and suggestions. I know what you mean about waiting for tests etc. My problems started in December 2011 after a very bad kidney infection. Then followed ultra sound to rule anything out to do with that. So a very long time to have unexplained pain. I have woken up this morning and am stiff everywhere and all my joints hurt. Not the normal kind of stiffness, it gets so bad and I feel like I am going to cramp up everywhere. Do you have the strange, fizzy, feeling in your legs?

[tiggersue]

Hi Annodomini, yes, I think the 5mg drop per week over just 3 weeks was rather fast and certainly by what other people have been saying about the drops. My CPR was raised at the same time as my ESR but the Doctor hasn't bothered to check that just the ESR. I am so stiff and painful this morning but this is like pre - steroids but only worse, in more joints and muscles. How does your PMR affect you? How are you now? Did you have any other tests? It must be comforting to have a Doctor in the family..!!!

[tiggersue]

Infindan, I forgot to say that my Vit D was tested and was okay. When I have tests in 2 weeks time I think she said she was going to check calcium etc. levels as well as ESR.

[Polywotsit PMRGCAuk team member in reply to tiggersue]

Hi Sue <br style=""> We are definitely with Pats on this one. It sounds as though you did come off the pred too fast. Some of the symptoms you describe are atypical of PMR so maybe you don't have PMR. Lots of people are diagnosed wrongly. However, this doesn't get you very far in knowing what's wrong, does it? Certainly you would be justified in asking for a second opinion from a rheumatologist. Good luck and let us know how you get on!

[Hidden]

If I am understanding you correctly, that you were on pred 15mg for three months and then came off in three weeks in drops of 5mg, my opinion is that you came off far too fast and are getting some withdrawal symptoms. I'm not a doctor, but I really think you must see a Rheumy SOON! My advice if you are no better by monday. Go back to your GP, Take someone with you for support and ask to see a specialist as soon as possible.

Pats.

[Annodomini]

Hello Tigger, sorry I didn't get back to you sooner. I was a textbook case - hugely raised levels of ESR and CRP and instant reaction to pred. I'd woken up almost unable to turn over in bed or reach the bedside light. Managed to crawl to the bath and then couldn't get out of it for 20 minutes. Doc was most efficient and when I started on steroids I felt like a million dollars. With reduced dosage, I don't feel quite so great, but I think I will get on top of it. After all, it's only been a year! The water is muddied because I also have osteoarthritis in some joints.

[tiggersue]

Hi all, it's been a long time and hope you are all doing okay. I still haven't got very far on my PMR journey. I am off to see the Rheumy on Tuesday after all this time. I have had no treatment since coming off the pred and haven't improved at all. My leg issue, cramping and fizzing, is worse as is my thumb joint and pain is just there all the time. I will let you know how I get on as it may help with some of your questions etc. I was wondering if any of you have problems with cramping and fizzy feeling in your legs, trunk? I am trying to remember everything to tell the Rheumy, think I might write it down.