Is it PMR?

[Everett19]

Hi. Diagnosed with PMR several years ago and had flare ups along the way. GP trying to reduce prednisolone dosage again, currently about to go down to 8mg. which isn't touching the pain. However I'm now wondering if in fact I have fibromyalgia. I've been doing some research on Dr Google and have just about all of the symptoms listed. Now I don't know what to do. Should I stop taking preds and ask GP for stronger painkillers and/or referral to rheumatology?

[DorsetLady PMRGCAuk volunteer]

hi,

At 8mg you cannot just stop taking Pred particularly as you have been on it as long as you have. You need to taper off it or you’ll likely have an adrenal crisis… see link -

However you need to discuss with GP to find out exactly what you have… and a referral would be sensible, although not sure how long that will take in your neck of the woods.

healthunlocked.com/pmrgcauk...

[Everett19 in reply to DorsetLady]

Thanks for your informative link. I didn't mean literally stop taking preds but go with GP guidance to get off them. The dosage currently is not controlling my pain so taking less will obviously not help. Hoping that GP can prescribe painkillers in the meantime and refer to rheumatology

[DorsetLady PMRGCAuk volunteer in reply to Everett19]

Good - but didn’t want someone new reading this to think you can just stop.

Hope you soon find yourself in a better place 🌸

[cherrysteps in reply to DorsetLady]

I have been to rheumatology 3 times all they can offer is methotrexate if it doesn't suit you, as it is a cancer drug the side effects are amongst others hair loss and bed ridden which I did not want to risk, but they will tell you it suits most people. Having had polymyalgia rhuematica for 5 years and on various dosages of prednisolone, starting at 15mg, I have got as low as 2mg and then come off them several times only to become immoble after 2 weeks. Then returning to higher dosages currently on 4mg. The secret is to reduce very slowly for your body to adapt.

[PMRpro Ambassador in reply to cherrysteps]

The dose used in rheumatology is not comparable to that used in oncology - 20mg per week compared with 5-8000mg in oncology. It may cause hair loss at rheumatology doses but rarely the total sort seen in cancer patients and I have never come across a rheumatology patient who was bed-bound because of methotrexate.

As little as 1/2mg can be enough to keep PMR symptoms under control so stopping suddenly from 2mg is unlikely to be successful. I doubt you can tell DorsetLady much about tapering - she developed one of the slow taper approaches we advocate on the forum.

[DorsetLady PMRGCAuk volunteer in reply to cherrysteps]

Did you mean to reply to me - or to author? If author, they should see it anyway.

PMRpro has replied re levels of MTX..

[SnazzyD]

With a new diagnosis it can be tempting to reduce more quickly than if you are trying to avoid a PMR flare. Bear in mind the picture can become confused or exacerbated by the fatigue, aches and pains of reducing through the ‘adrenal zone’ when the glands need to work but may not. The pains I had were very Fibro -like. It can also be difficult to know if it is a flare or not. It is possible to have both PMR and Fibro too.

[PMRpro Ambassador]

You can't stop 8mg pred just like that after the time you have been on it - you would almost certainly end up in the ICU!

Before I got a diagnosis I had almost all the listed pointers for fibromyalgia including at least 11 of the trigger points. However, 15mg pred stopped them all, some instantly, some after a few months. NOT fibromyalgia. Many of the trigger points are the same for PMR and/or myofascial pain syndrome which often goes with PMR.

You aren't reducing relentlessly to zero pred - you are tapering/titrating the dose to identify the lowest effective dose - the lowest dose that works as well as the starting dose did. Trying to force it tends to make it harder to identify when the result is a flare and it becomes harder to control them.

At 8mg there is no way ANYONE could say this is fibro not PMR. Even 9mg might be plenty to sort it out once you have had a springclean with a burst of a higher dose. If more pred clears the pain - the likelihood it is fibro is reduced, It does NOT respond to pred like PMR as it is not an inflammatory condition - though it MIGHT be an autoimmune condition and pred might reduce that aspect of fibro.

[Pixix in reply to PMRpro]

In my opinion there are definitely’parts’ of fibro pain (& OA) that are helped by steroids, in my case. BUT only at high doses. Before the bad side effects of pred really hit me I was wanting to stay high as it was helping my fibro. But as soon as I was down to about 12, then the fibro was back to normal. OA was spreading anyway, but definitely worse when I tapered to 10. Imho I think rheumies should still test the pressure points. You actually get a score & a result, but they seem to be stopping it. I’ve had 4 rheumies test me now. Score has varied but onky by 1 or 2, & the evidence has been overwhelming! But a. Dr at GP level should be able to know the symptoms, I was diagnosed by seeing a Dr & saying I had a bizarre set of symptoms (fibro wasn’t so well known then). Just a thought, as you know I have both fibro & PMR. S x

[PMRpro Ambassador in reply to Pixix]

I think they have realised the trigger points can be misleading - and they can, since myofascial pain syndrome has several that coincide,

[Pixix in reply to PMRpro]

That’s fair comment, as always..Butbwouldnt it at least lead them towards fibro &/myofascial pain, rather than just using the crystal ball? Just a thought!

[PMRpro Ambassador in reply to Pixix]

It might if enough believed in myofascial pain syndrome. But they don't ...

[Pixix in reply to PMRpro]

I didn’t realise that. Will investigate it with my GP.

[GpaJ]

Thank you for your enquiry. My PMR symptoms started 10/12years ago and I began on 15mg daily and gradually reduced to 2mg daily. I never experienced joint pain during that time, my problem was fatigue. I was diagnosed with a fairly rare blood cancer 27 months ago as a result of which I had to stop taking prednisolone. I am in remission at present from the cancer but still 'suffer' from the awful fatigue. I probably haven't been much help but I do hope your condition improves soon

[GwenTheHen16]

Hi Everett19,

I too am on Prednisalone and have had PMR for the last 2 years. I am currently on 7 1/2 mg. My doctor’s always wanting me to reduce. I’ve been up and down for the last 2 years. You won’t be able to just stop them! I don’t have pain as such but get very stiff in the hips, thighs and shoulders. I suggest you go back to your gp and see if Dr Google may be right. I hope this helps and that you get some answers soon.