tapering Steroids-but pain getting worse….

[Poodlewoman]

I was diagnosed with PMR in May 2021 after what my GP thought initially was a fibro flare and I was in so much pain he referred me to a rheumatologist. My gp had started me on 30mg prednisolone which was like a miracle cure … the rheumatologist derived a three year plan which I have followed and I had to stop decreasing three or four times as the pains were still there. So now I am down to alternate 3mg and 2mg for one month then next month it’ll be 2mg etc. a new regime a new rheumatologist put me on over last 6 months … telling me I had to come off them not that any tests or side effects were negative,

But I’m in a lot of pain, my mobility is affected again and it feels just like in the beginning…

I’ve had an argument with my rheumatologist who says he doesn’t believe I have or had PMR because my inflammation markers weren’t high enough! I pointed out that my previous rheumatologists both said some people just don’t always have high markers etc…

He also doesn’t believe fibromyalgia exists …. Even though I was diagnosed with it 20 years ago ….

I developed paroxysmal afib 5 years ago so pain treatment is very difficult to have as I cannot have NSAIDs .

I cannot go back to having this amount pain on every movement….. as it affects my daily life especially as I live on my own.

I’m dreading seeing the consultant again on 1st May and am still waiting for my gp to refer me to a pain clinic !

Any advice would be welcome ……. I’m thinking I should get a second opinion from another rheumatologist as I don’t trust this one.

thankyou 🙋‍♀️😊

[DorsetLady PMRGCAuk volunteer]

Sometimes we just despair at the attitude of some Rheumies-they really are rubbish!

You could try the flare protocol yo se if that helps and then stop back to 3mg before you see Rheumy again -

healthunlocked.com/pmrgcauk...

But you do need a second opinion,but it will probably need to be private - so if you raise a new post and ask for suggestions stating roughly where you live and how far willing to travel you will get replies.

Our go to is Prof Rod Hughes -based in Surrey -

finder.bupa.co.uk/Consultan...

[Obscureclouds]

That’s so sad for you. I’m afraid I can’t offer any helpful suggestions but to stick to your guns and not reduce Pred further than the 3mg until you know it works for you. I’m sure better advice will follow. I really sympathise with your concerns about next talking to your Rheumatologist. I also have a know-it-all Consultant who is only interested in his point of view rather than being prepared to listen or discuss things so just sending this with a few hugs to let you know you are not alone. Best wishes 🫂🫂🫂🫂🫂💝

[Pinkcrocs]

I'm very sorry to hear your experience. If it was me I would see a good rheumatologist privately and seek their help, experience and support. I can recommend Dr Hughes in Surrey.

I hope things improve for you.

Sending best wishes and a gentle hug x

[SnazzyD]

I agree with what’s been said already. If you are in pain, I would not advise alternating across 1mg, but 0.5mg a month. Some find just the withdrawal symptoms from the swinging dose, cloud the picture. Some also find the adrenal glands don’t react by producing 1mg Pred’s worth of cortisol on the 2mg day. Normally we say as a rule of thumb reduce by no more than 10% at a time, not 30%. You can try it as you are in a difficult position but if you feel worse it might be that.

[suzy1959]

I also think you need a second opinion from a Rheumatologist who understands PMR and steroids, which yours clearly doesn’t!

You should not be in pain with the PMR as you just need to be on the right dosage for you. We are all different and cannot stick to a rigid plan. Our bodies have different ideas and we can’t make them comply!!

I see Prof. Hughes myself as he has been the only one to support me through what has been 13 years of PMR so far.

[Sharitone]

I changed rheumy, after an initial private appointment, and it has made a big difference. Apart from anything else, if you do not have full confidence in the person who is dictating your treatment, that can have quite a negative impact on your illness. So if you can, go for it!

[PMRpro Ambassador]

You need a doctor who knows what they are talking about in PMR - your current one doesn't. There are so many incorrect statements there.

[Maudie19]

Whenever I get down to 1 on a decreasing dose I then start pains again. I am a full time carer for my bed ridden husband so need to be pain free. At present I take 2 for 6 days and a 3 on the 7th day. Got a med review next Friday so will see what the gp says. I'm 82. My mum had PMR from age 79, same as me. When she died aged 94 she was on 5 as a maintenance dose. Good luck.

[Barbaracole]

Seems very good advice all round 👍 I think maybe private booking might help too .