Off prednisolone but pains back

[Suin555]

Hi, I haven't posted for a while. To summarise I was misdiagnosed with PMR & it took me over 3 yrs to get off prednisolone. However after feeling fine for about 6 weeks when I stopped taking them I now have my original pains back. Awful pains up the back of my head. My doc not sure what's causing this & I am now on painkillers but they are doing no good. Soo frustrated now as not sure what's wrong with me. Thinking of going back on prednisolone. 😢😱

[SheffieldJane]

I am interested in why it was decided that the PMR was a misdiagnosis. Your current symptoms sound like GCA and your condition behaved like PMR morphing into GCA which it does to a significant percentage of us. This would be a good time to have an ultrasound scan first choice or a temple biopsy whilst on no Pred to obscure the results. If you are not being supported, go to emergency services to have these headaches investigated. The back of the head is a typical spot for GCA symptoms. Look out for eye symptoms and jaw claudication,

[Suin555 in reply to SheffieldJane]

Thank you for your reply. I saw 2 different consultants who agreed I didnt have PMR. I saw a homeopathic doc today & he thinks the head pain could be muscle spasms/inflammation. No-one has really given me an answer. Anxiety was also muted!! Fed up getting no answers.🥵

[PMRpro Ambassador]

How was it established you were misdiagnosed with PMR? And if that were so - why did it take 3 years to get off pred?

What has happened now is absolutely typical of someone with PMR who mistakenly thinks the PMR is in remission when in fact it is at a very low activity and 1mg of pred is enough to manage it and stop a relapse. Whatever it is - it is pred-responsive and a low dose is plenty to manage it. So why stop the pred? As you have found - painkillers do nothing.

[Suin555 in reply to PMRpro]

Thank you for your reply. I saw 2 different consultants who both agreed I didnt have PMR. But it took me so long to get off prednisolone. I suppose a low dose wouldnt cause many side effects as it would keep the pain away. One doc thinks it's muscle spasms but all pain is in the back of my head. I am so confused.

[PMRpro Ambassador in reply to Suin555]

On what GROUNDS did they say it wasn't? You obviously have SOMETHING that is pred responsive, at a low dose. I can say from personal experience that muscle spasms would cause similar pains - but they do NOT respond as well to pred the way PMR does.

[Suin555 in reply to PMRpro]

Both consultants said I didnt have the common symptoms. I just know that since I stopped the prednisolone the daily head pains have come back. Think I should ask my doc to go back on low dose??

[PMRpro Ambassador in reply to Suin555]

What WERE your symptoms?

One day we will manage to get through to doctors that no two patients are the same and many things WE know are common they claim not to recognise. But I know that the rheumy I saw ony saw what he wanted to see - I really was pretty textbook apart from normal range blood markers. But he wanted it to be anything but PMR - it is as if they think it is beneath them. I had had a few classical GCA symptoms too - but I was never asked because they were so convinced you must have a headache. In fact, of almost all of the symptoms only about 40% of patients have that particular one.

[Suin555 in reply to PMRpro]

Oh I have completely lost faith in my own GP. When I saw him at the beginning of all this I had headaches & aching neck,shoulders & fatigue. I have a brilliant homeopathic doctor now who diagnosed Epstein Barr virus. He thinks I have painful muscle spasms. But I am thinking of a low dose of steroids to control the pain.

[123-go]

A GP is what it says on the label, i.e., a general practitioner. We are fortunate if we see a GP who has some knowledge related to our symptoms but if he/she can't help with the problem it should be written in the 'rule book' that he/she refers us on.

Suin555, have you considered changing your GP? Pain itself is a strong indication that something is not right.

I hope you get some answers very soon.