What have I got?

Hi, would appreciate any advice.

I have shoulder, neck, upper arm, slight lower back and upper leg pain, started few months ago.

One doctor thinks its polymyalgia and the other at the practice disagrees and thinks its fibromyalgia.

Where do i go next, I can hardly ask for a third opinion.

Ive been put on prednisolone 15mg and have been on it for past 10 days. I forgot to take one day and was practically bedridden the next day. It doesnt take away all the pain, only about 60-70%.

Is the dose too low? If I have got fibro does this medication work for that?

Theres talk now of putting me on ibuprofen and amiltryptiline.

Bloods all normal, slightly raised sed rate, whatever that is. Awaiting results of chest X-ray (havent been told why I needed that!). Urine normal.

Im at a loss as to what to do next.

[SnazzyD]

Oh dear that’s not nice for you. All I can go on is my own experience and what descriptions I’ve read on here. I only had GCA, the sister condition to PMR, but I have had Fibro on and off for years. PMR seems to cause loss of function with potentially horrible pain and stiffness that doesn’t respond to pain killers to any useful degree. With Whereas with Fibro, my experience is that although the pain can be awful, the joints and muscles aren’t as compromised and function is not affected in the same way. It also comes and goes whereas PMR doesn’t seem to if it is left unchecked. Fibro responds much more easily to pain killers, good sleep and other general measures.

One thing that really ought to ring bells is that your pain is so much better on steroids and that alone should be pushing them towards PMR. Fibro isn’t thought to be an inflammatory condition but more of a brain pain processing dysfunction. There might be some sort of inflammatory trigger but not in the same was as the vasculitis of PMR that is actively starving muscles of blood, hence the crippling effect.

Missing a dose and the pain flooding back is more evidence. 15mg is the starting dose but some people need higher than that, 20-25mg.

The other thing to realise is that the steroid is not curing the autoimmune activity, it’s just stopping the effects of the inflammatory products produced that cause the vasculitis. The idea is that the steroids provide a safety net and quality of life until the autoimmune activity dies down over a few years. Once on steroids and comfortable people can’t then go back to normal as if nothing is wrong. Life changes usually have to be made where rest and TLC are the order of the day, particularly in the first few months to a year. Sometimes when people complain the steroids aren’t working it is because they are still going about their usually stressful (for a sick body) day to day business.

Diagnosis can be tricky, especially as blood inflammatory markers can be normal though you at least have some raised ones which is more than some have. The docs should know this but is does seem many don’t.

Who put you on the Pred? The sceptical one or the PMR siding one? Can you choose who you see ultimately?

Others will reply so sit tight for more and probably better help.

[Hidden in reply to SnazzyD]

thank you so much for taking the time to reply. the sceptical one is the fibro/amiltryiptline doc who is due to call me this morning. i dont like her dismissive attitude at all. theyre all so concerned with covid jabs at mo, i feel like im bothering them but I cant go on in this amount of pain. thanks again for advice

[SnazzyD in reply to Hidden]

Perhaps you need to fight your corner and say that in view of the excellent response to Pred you would like a month’s trial of it, especially as she is so busy with other matters and can’t help with what is an inhumane level of disability. You can say you are aware that Pred isn’t effective against Fibro.

Have a read of these

arthritis.org/diseases/more...

medicalnewstoday.com/articl...

[123-go]

I agree with SnazzyD. As long as you are polite and respectful you have every right to question the diagnosis. I would practically quote all of Snazzy's comments/findings, especially missing the Pred dose, saying you've done some research. If you aren't satisfied at the end of the conversation you can ask for an appointment with the other doctor. Don't be fobbed off. Oh! and write down what you want to say before the telephone appointment crossing off points as the conversation proceeds.I wish you luck and will be interested to know the outcome. We are all behind you in spirit.

[Hidden in reply to 123-go]

she's just called me. is still convinced its not polymyalgia as the pred has not given me instant relief as she said it should have done.

she now wants me to taper the dose for the next 2 weeks and from tonight start the amiltryptiline. which im dreading. i was on it many years ago for post natal depression and walked around like a zombie for a year.

[123-go in reply to Hidden]

I wondered if the GP might get to you first! I can only tell you what I would do now: I wouldn't take the amiltryptiline on the grounds of its previous effects and I wouldn't reduce the Pred because you have felt the effects of missing just one dose. I would ring the surgery for an urgent appointment to speak to the doctor who gave the PMR diagnosis and if that proves difficult ask to speak to the Practice Manager so that you can explain your concerns and ask for her support.I'm so sorry for you and the position you've been placed in. Things like this are more stressful when you are so poorly but it's your body and your health that takes precedence when you feel you've been given an incorrect diagnosis. 💐

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Pred doesn't give everybody instant relief....it does some, but not all. Up to 70% improvement is what is expected/written in guidelines...and 15mg is not enough for all. The fact that you had 60-70% relief should be taken into account - and maybe a increase to 20mg or even 17.5mg might prove enough.

A slightly raised Sed Rate (ESR) indicates COULD be PMR - so I think you need to push for a further tril on Pred.

Like 123-go I would resist the amitriptyline.

[Hidden in reply to 123-go]

thank you.

[cisy]

Hi .This is so like me it could be my post. I was told after 3 months I had PMR. Given pred and cos I was still in some pain 2 days later told it wasn't that . Following week I felt a lot better but still some pain and swelling. Took 3 months to speak to a Rheumatologist who said I had to decrease at 5mg a week. This just hasn't happened as decreasing while being affected causes more pain. My own Dr then increased it. By the end of September I was on 40mg a day. The urgent "I'll see you in 4-6 wks" from the rheumatologist still hasn't arrived but I did speak to him last month and he told me to Google Fibromyalgia. I know this pain and swelling is PMR. He even told me so.

I had got down to 20mg end December but had a relapse last week and now on 25mg.

Best advice I've had on here is listen to your body.

[piglette]

Fibromyalgia does not react to Pred while PMR really does not react to Ibuprofen. If the pred works say at 20mg then it is unlikely to be fibromyalgia.

[PMRpro Ambassador]

If you partially responded to 15mg the first thing they should be doing is trying 20mg - 15mg is often not enough. The best differentiation between poly and fibromyalgia is 1) PMR may have raised inflammation markers in 80% of patients and 2) PMR responds to pred. Bith htese are due to the fact it is an inflammatory condition, fibro is NOT and does not respond to pred. And the pain returning without the pred shows it is pred-responsive. Your slightly raised sed rate is a sign there is inflammation - do you happen to know what the reading was? (it is measured by putting whole blood into a vertical tube and measuring how fast the red cells settle to the bottom)

You can ask for a third opinion - from a rheumatologist rather than GPs.

In the 2015 Recommendations they say the starting dose should be the lowest effective dose in the range 12.5 to 25mg/day - obviously that suggests that 15mg may not aways be enough. The instant and total response is a myth - 70% in a week is taken as fairly indicative of PMR.

rheumatology.org/Portals/0/...

[AdoptMeow]

I have had fibromyalgia since 1984 and PMR since May 2018. I clearly remember the pain I was in for a month before an urgent care doc started me on prednisone. I would probably have gotten violent if another doc tried to take it away. What you are describing is not fibromyalgia and amitriptyline will not help, just make you less active and more stiff. What was the lab result for C-reactive protein? I'm praying for you to get the treatment you need.

[AdoptMeow]

Hello Hidden. I'm hoping you have made progress toward getting appropriate medication. I read your post and responses again, and it struck me that the doctor who proposes a fibromyalgia diagnosis has recommended ibuprofen, which is not an appropriate or useful treatment. Ibuprofen is for inflammation. As SnazzyD stated, fibromyalgia is not an inflammatory disease. It does not cause swelling or joint stiffness or damage. Amitriptyline is prescribed for fibromyalgia for the purpose of more restful sleep. A low dose of 10-25 mg is taken a once a day a few hours before bedtime. I did have one family doctor who said he had some fibro patients on 200 mg per day. I would turn into Sleeping Beauty or Juliette at that dose!