Fibromyalgia PMR or both????

Hi there , well if it was fibromyalgia you would of felt absolutely no relief on pred. Probably would of even made it worse . So you can forget it being  fibro. Your symptoms won't improve on plaquenil for a good month at least so hang on in there. Works the same as Pred by suppressing the immune system but works much slower as it builds up in the system. Don't drink any alcohole with it. Hope you improve soon and if they don't suite you tell your Dr . Best wishe , V . 

      I have had pmr twice six years apart and my my blood markers never showed inflammation. My rheumatologist keeps telling me that he does not know what I have but prednisone works so well he prescibes it for me.

"She said almost everyone feels better on steroids"

What a load of **** - I really wish I knew where they get this idea from. My GP tried to tell me that - I soon disillusioned her! 

If it all went away when you took pred - then it isn't fibromyalgia, it is NOT an inflammatory disorder. 

Unlike Nick I'm assuming you are in the USA (we don't have "dose packs" in the UK and call PCPs GPs). So I'd suggest you look for a PCP or a rheumy who knows that up to 20% of PMR patients have normal blood markers and treats the patient not the numbers. I'm assuming you started on about 25mg and reduced daily for 5 days? That is about the currently recommended maximum starting dose for PMR, 20mg may be enough too. If what you have is PMR - and it could be - then you will get relief with pred and nothing else and you will probably be able to reduce the dose steadily to nearer 10mg over a few months (as long as you are careful). If that gives you your life back - I really don't see how any doctor can complain. They are terrified of pred - but happily hand out opiod pain killers ...

Is the thyroiditis now under control? It can also cause PMR-type symptoms. I don't know if pred would manage them as dramatically as you describe.

Hi muddyooch

I really identify with your plight.

I am 54 but last year at 53 I had much of your pains that you describe. My ESR raised but not CRP a gp diagnosed PMR and started me on steroids, there worked so well, but the hospitals don't agree, too young and they said bloods didn't confirm as they would like. My ANA negative but schrimmer test positive for sjogrens, scan of parotid positive for sjogrens but as other tests negative they didn't agree with sjogrens either, I still wonder what I have!!! I have hashimotos too from a scan on the thyroid but the steroids seem to have normalised the thyroid function one consultant said.

I have been diagnosed with sjogrens and started on Plaquenil, I have been on it nearly 6 months and it gave me some extra saliva, so my dry mouth has improved, but little else. The hospitals have reduced my steroids too quickly, but I have hadn't to slow things down as I felt so ill at the rate they wanted me to do,

on steroids my ESR now half at 24 and CRP now 11. When I got to 9mg, but I was so stiff and in pain they had to give me an injection of steroids 80mg which is helping tremendously.

Now on a dmard asathiaprine with the Plaquenil and steroids, so it must be something!!!

I have seen 3 Rheumatology consultants now, and finally last week the last one says she agrees with the sjogrens, PMR diagnosed by gp and she will support the 2 year treatment with steroids and has prescribed the dmard so I might be getting somewhere who knows. She also wants me to reduce steroids slower than the previous consultants, which I've been saying all along, so 10 months into the journey, I feel yuk at times and extremely fatigued but at least I know some of the reasons why. 

Work is difficult as long hours. 

But keep going, I've fought and fought, cried buckets, but ask for other opinions if you are not happy, and with ANA positive your fatigue could it be sjogrens, have you dry mouth eyes etc with your joint pains? 

Take care.