Bewildered

Hi, Id appreciate any advice please.

I was diagnosed by an emergency doctor with polymyalgia and was started on 15mg of prednisolone which I took for 2 weeks. I had bad side effects, racing heart and couldn't sleep.

My own doctor thinks the diagnosis is wrong and that I have fibromyalgia.

I dont know who to believe or how to go forward with this.

The inflammatory markers on my initial blood test were slightly raised and my own doctor said that was nothing to be concerned about.

She's told me to come off the pred, which I have but the pains in my neck, upper arms and upper legs has come back.

It never really went away on the pred, maybe 50-60% relief.

Im awaiting the results of the 2nd blood test.

Also I have an underactive thyroid which hasn't caused me any problems since diagnosis approx 15 years ago.

When I queried with her if maybe I should have been on a higher dose of pred, she said 15mg is the standard dose to start with.

[herdysheep]

Welcome. Others will be along with far more knowledge than I. From my very unmedical position, it sounds as though you did get relief from the pred. It doesn't necessarily get rid of all the pain etc - depends on how much inflammation is roaring round. Some side effects settle after a while. The fact that the pains have come back would suggest pmr and maybe a bit longer on pred would make sense.

I 'll leave you in the competent hands of those who will follow but thought you may like a response of some kind now!

[SheffieldJane]

Yes 15 mgs is the standard dose to start with and if that doesn’t deal with the inflammation, then in experienced hands we are usually moved up to 20 mgs. I am afraid that sometimes Fibromyalgia is used as a sort of cop out diagnosis, although it is quite specific and can run alongside PMR.Your condition seems to be behaving like PMR in that it responded to Pred and the symptoms worsened when you came off it. Symptoms rule in the diagnosis of PMR, blood tests are an indicator but cannot be relied upon alone. Some patients ( 20%) show no change in their CRP blood test results. The side effects you mention are quite common, especially the insomnia. I found that the palpitations settled but they should be investigated.

Prednisalone is the only drug we have for PMR and imperfect as it is, it works. Most side effects can be mitigated, treated or monitored. I really think you need a third opinion. It is dangerous to leave PMR untreated and symptoms tend to worsen with unchecked inflammation doing further damage to your arteries sometimes leading to Giant Cell Arteritis and other forms of Vasculitis. Personally, I think the first doctor was correct. People on here will be glad to advise you on the nitty gritty of learning to live with PMR and Pred. Good luck! I think you knew really.

[HeronNS]

Fibromyalgia is not inflammatory and does not respond to pred. Polymyalgia is responsive to pred and the moderate dose you took is one of the ways of confirming the diagnosis. However you were treated in the emergency setting so I assume you were not run through the gamut of tests which exclude other conditions? Even that doesn't always help. I was not diagnosed at the beginning because my markers were considered "normal for my age", I later learned they were significantly raised. Your markers will now be down because you have been on pred - did your GP consider that possibility? Ordinary painkillers helped marginally before my diagnosis; I was always a bit better after taking aspirin for a headache, but not by much. However PMR is a diagnosis of exclusion so you really should have full testing done to eliminate the other possibilites. When the others are eliminated, then you are left with PMR or in rare cases GCA. If the tests have not been run, get them done asap while you are still off pred. If they were run and she can only come up with fibromyalgia as a diagnosis, well, I think you already know what the rest of us think of that! If 15 mg helped, but not enough, you needed a bit more, and also you needed to get more rest and to behave a bit like an invalid because PMR is a significant systemic illness, although invisible, and you need to be kind to yourself.

[PMRpro Ambassador]

Well she isn't entirely correct and is out of date. The recommended starting dose is the lowest effective dose in the range 12.5-25mg:

ard.bmj.com/content/74/10/1799

Recommendation 3

If you needed 20mg then 15mg was not that effective dose. The fact you got about 60% relief and it all came back when you stopped suggest that it IS PMR - or at least, NOT fibro which isn't an inflammatory condition, doesn't raise the markers at all and doesn't respond to pred (which is an antiinflammatory). In fact, even 1 or 2mg more might have made a very noticeable difference. As SJ says above, fibro is too often used as a cop-out for lazy doctors who can't be bothered to keep up to date.

I don't suppose you know what your markers were for her to say "slightly raised". There was a trend at one time to accept that having higher ESR levels was a natural part of aging but in the meantime that has been discounted - on the grounds the patient may have an undiagnosed inflammatory condition. They used to take up to 30 as OK for aging women - no longer, anything above 20 is accepted as raised. However, the normal range is not the range of levels acceptable for a single person, it it the range that covers 95% of a very large population of apparently healthy people who were tested to find the normal range. YOUR personal normal level may be low single figures, as mine is. When mine chugs along at just under 20 it is considerably raised FOR ME.

When you took the pred did you also adjust your activity levels? That can also confuse things. Pred isn't a cure - and if you try to do a bit more because you do feel somewhat better then you will feel bad again. They claim to look for a 70% global improvement in symptoms - I'd say I did have that but it wasn't the same for everything: the stiffness and some muscle pain was gone in hours, more of the muscle pain went over the following week but the deep hip, foot and hand pain took a few months to go entirely.

[SnazzyD]

The others have said it all but I’ll just add that it does seem that often patients are not warned that Pred can cause these side effects, how it actually feels, especially when the body hasn’t got used to it. So, when it happens they are alarmed and think it is a severe reaction when yes, it does feel bad, but it is normal. Once the fear is taken out of it, it is easier to cope with and does get better with adjustment and reduced doses. Not sure why the doc says 15mg “to start with”, suggesting some flexibility, only to give up on it when it doesn’t quite hit the mark but well enough to suggest it’s worth pursuing. Fibro doesn’t respond to Pred; I know from my own experience.

[DorsetLady PMRGCAuk volunteer]

As others have said, GP is partly correct -15mg is common starting dose - but not always enough for all patients and is within a range as described by PMRPro. Plus inflammation markers are not always risen with PMR.....mine were deemed satisfactory at outset, but it turned out to be GCA....so they are only part of the diagnostic tool.

The fact that you had some improvement would lead most of us to think it’s PMR, but either not enough Pred, or your activity was not tempered.

As you are having more tests, I assume she is testing for fibromyalgia?

Please keep us informed.