PMR and FIBROMYALGIA

Hi Ascot Lady! I have had PMR for just over 2 years and last month was diagnosed with Fibromyalgia. I have been taking Steroids all this time every time I try to reduce them I get further pains and my GP who is very helpful advises a 'boost' as she calls it so have to increase then start reducing all over again I hope in time to get feeling a lot better having been newly diagnosed with the Fibromyalgia with the aid of diet etc but I also have gastro problems and cannot eat a lot of the foods advised to help Good Luck!

Best Wishes Grannie Annie

Hi Grannie Annie, EileenH and MrsO, thank you for your replies. I have been to the my GP today, she said to have blood test for Bone Profile, Hepatic profile, Renal profile, Esr aand Fbc, to see whats happening in my body. Am going in the morning so should get results within 3 day I hope. Will keep you posted. Hope your all well. Had to change my name cause had to set upnew password as it wouldn't accept my old password.

Take care

Rita - Good luck with the blood tests tomorrow and I hope the results lead to the right treatment to make you feel better.

MrsO

I haven't been able to post on here for a little while as I was admitted to hospital on 28th January when my blood calcium level (adjusted level) reached a dangerously high level. This was picked up in a blood test following which I was contacted by the out of hours doctor who advised me that I needed to get myself to A & E as soon as possible.

For the past year the pain in my muscles seemed to have got worse and on top of this I was suffering with a lot of pain in my joints. At that time my calcium was being recorded as a lot lower than it should be. I wrongly assumed the excruciating pain I was experiencing was solely my Fibromyalgia but it now seems that due to my low calcium my body was taking calcium from my bones to make up for the deficiency and this in turn was causing the additional pain in my joints, which also made it so difficult for me to get in and out of the bath as well many other activities.

I am posting this just in case any other Fibromyalgia sufferer may also have calcium problems or if you're not sure it might be an idea to have your calcium checked to be on the safe side. It can be so difficult when suffering from both Fibromyalgia and calcium deficiency/too much calcium to distinguish what is causing which pain. All I know is that since my calcium levels have been under control I am not suffering the same pain I was.

Chris

My calcium level is now under control and although I do still suffer with the muscle pain of Fibromyalgia it is nowhere near the extremity that I was experiencing

My PMR started in November 2012 after I have the flu vaccination. I was very fit and healthy and use to visit the gym swim and walk up to 10 miles three times a week. The day after having the flu vaccination my arm swelled like a balloon and after four days the swelling went down but then I had severe pain in my left groin then my right groin and then the whole of my trunk and after two weeks both my arms. I was unable to get out of bed and had a high temperature and burning sensation in the affected area. My GP was very good and diagnosed PMR took blood tests and I am now on Steroids. Although the pain and burning is not as severe the immobility and stiffness is still there most of the day but on a morning I have difficulty walking and my arms cant move above my elbow until very late in the day when they move more easily. Then it is back to square one in the morning. I have only had PMR for four months but have not been able to drive since the attack as my arms are so weak. As I am new to PMR I would welcome any advice or guidance for fellow sufferers

Chris L

Grannie Annie - I can't imagine how I missed your post: does it not occur to your "helpful" GP that the point at which your pain returns is the dose at which you need to stay? Yo-yoing as you have been is the worst thing you can do - if your body isn't ready to go lower, you will repeat this again and again, the total dose of pred will be even higher than if you remained at the lowest dose you are able to get to without pain.

It is possible to have both fibro and PMR and there are other medications that help with the fibro. One at least is an antidepressive but it isn't being used as that when used for fibro - many patients get upset as they think the doctor is suggesting it's "in their head". It just so happens it has a side-effect that helps the fibro pain.

Eileen

Christine 18 - why is it beyond the medics to keep an eye on calcium when patients have our problems I just don't understand! We have a lady on the other forum who also has calcium problems (low) and it has been ignored manfully by her medics. And they are trying to get her to take bisphosphonates without sorting out her calcium and vit D deficiencies first - totally against the advice of the drug companies that make the stuff!

Eileen

Christine82 - I have just had an email from someone who also is sure his GCA problems started after having the flu jab but the medics pooh-poohed him. I will tell him about you - I don't know if he visits this forum, he does have some contact with the other one, the pmr gca northeast support group at forumup. There is a link at the top of this topic index or you could google the words I've given you.

I think I remember him saying there is a warning in the data sheet that comes with the flu jab - he is a pharmacist by trade so is busy researching this aspect.

I also had similar problems to you after being switched from ordinary prednisolone in the UK to methyl prednisolone here in Italyby the hospital - couldn't do anything until mid afternoon. My GP here switched mye again, this time to Lodotra which is a special form of prednisone which you take at 10pm and it is released overnight so the blood level peaks early in the morning and it has worked very well for me and I need a much lower dose than I did of the methyl prednisolone - I had had to increase it a lot to get any relief.

Some people are resistant to prednisolone, you may possibly be one and it is worth trying the other versions to see if they are better.

Lodotra is being trialed at the moment for PMR, it is already approved for rheumatoid arthritis. If you are not being helped properly with 15mg pred then another possibility is that your doctor's diagnosis may be wrong - and it may be another type of vasculitis or even GCA which is a possibility given you upper arm problems.

Go back and push for more tests - have you seen a rheumatologist?

Eileen

Hi Eileen - I totally agree with you especially when the symptoms particularly of low calcium is painful joints which can add to the already painful symptoms of both fibromyalgia and polymyalgia. However I don't think that many GP's are very knowledgeable on the effect of low or high calcium levels in their patients. My admission to hospital was basically expedited when I had a phone consultation with my GP and told him that I was sure my calcium had gone too high due to my symptoms. He then arranged for me to have a blood test which eventually led me to being admitted to hospital. Sadly not all doctors will listen to the patient like mine did so I was very lucky that he took notice. Sometimes we know better than a GP how our bodies react.

Chris

"I don't think that many GP's are very knowledgeable on the effect of low or high calcium levels in their patients"

Well they b£**%y well should be - it is absolutely basic physiology/biochemistry and an essential part of medical knowledge. If they don't know that they shouldn't be in medical practice, it is disgusting. They are general practitioners and as such can't be expected to to know specialist things - but my GPs in Durham were actually quite happy to google what they didn't know or weren't sure of. It's nothing to be ashamed of.

And he shouldn't have waited for the blood test via him - he should have given you a letter to appear at A&E where they would have checked it and you'd have had a result in very short order.

I have suggested it is a plot in the part of the gubmint to kill us all off and save money ;-)

I have just had a second transient global amnesia - the difference in dealing with it between Durham, a university teaching hospital, where I was the first time and here in northern Italy was like night and day. Here got it right - and it is also a mainly state funded system so no excuse there, although we do pay a small contribution for each thing.

The things that are being ignored (whether it is recommendations or warnings or results of tests) are putting people's lives at risks and it isn't right.

And then sodding NICE comes up with bright ideas like IVF for everyone including the dog...

I can feel my BP rising as I write ;-)

Eileen

Hi Eileen! I am just trying to sort out the least steroid I can take without being in too much pain! Until 7/8 weeks ago I didnt know anything about Fibromyalgia and just thought my pains were part of PMR or arthritis! I have taken amitriptylline in the past and have been on antidepressants for the last 5/6 years! Am trying to sort out my medication - I also have gastro problems and labyrinthitis which keep recurring so dont like to take anymore tablets than necessary

Eileen

Thank you so much for your prompt reply, my GP said it was just coincidence but after looking up muscle aches and pains after flu vaccine I came up with hundreds of similar symptoms and all said their GP did not record it. If you just put in side effects of the jab they come up with nothing. Your comments on prednisolone could be right as my symptoms have got worse since he reduced my dose to 12.5 and started me on weekly Alendronic Acid for osteoporosis, prior to that I seemed to be improving each day and certainly my arms worked a lot better and sooner during the day. I shall certainly look up the forum information you suggested.

Christine82

I'm afraid as a scientist I get very irritated by medics who decide a patient reporting symptoms soon after an incident - especially if it is taking a drug - is coincidence. I have heard about a lot of people with "flu-like" symptoms which are dismissed by many as "all in the head" because you CAN'T get flu as such from the vaccine. However - who said the pains are flu? You can put in a yellow card report yourself - it doesn't have to be the doctor or pharmacist and EVERYONE who has had these symptoms for more than a couple of days should do so. I had my flu jab for the first time ever and had absolutely no problem but maybe I was lucky.

Before you were put onto AA did you first have a dexa scan to see if you need it? And were your blood calcium and vitamin D levels also checked? If your calcium and/or vit D are low they MUST be corrected before AA is given or it doesn't work properly and you are at risk of developing a low calcium because the body can't "claim" it from the bones. It is specified this is done in the prescribing info from the manufacturer but most doctors seem to ignore it (and I'm no friend of Big Pharma believe me so when they come up with that sort of suggestion I'm happy to believe they have a good reason for saying it). I have been on pred for 3 1/2 years now and my dexa scan readings haven't changed at all and I DON'T take AA. I will consider it it when they show me a good reason - taking it "just in case" is bad medicine as you shouldn't take it for more than 5 years according to the most recent recommendations as that increases the risk of some of the nastier side effects of AA. BUT this is one of the side effects of AA: "bone, muscle or joint pain".

And reducing from 15 to 12.5 in one overnight jump is also often too much, whatever the guidelines say, although I doubt your GP bothered to read them. A reduction should not be more than 10% of the current dose - at 15mg that is 1.5, just about half of what you were told to do. Quite a few people can't manage that size step, 1mg at a time is far more effective as there are fewer flares.

Personally, I would refuse the AA until a dexa scan has been done and I would ask to try something else if I needed it because of threatening osteoporosis. And I would also suggest to my GP that s/he alters one thing at a time in future so it is obvious if a new treatment has an effect, good or bad.

It seems to me it is a shame there isn't an entry qualification for med school called "common gumption" -

Eileen

Eileen

Thanks for that. GP has upped steroids to 15 and taken me off AA for the time being. Feel lot better, but go back next week to see how I am and may suggest dropping only by 1.5.

i never reduce more than 1mg at a time and left at least a month between each reduction , i then reduced only if i felt ok to do so now i am down in the 7s i have to make my reductions even smaller and only if i feel comfortable ,its not a race and you pay a price if you try to go down quickly carolk