Advice on steroid use

[Esmeruth7]

I saw rheumatologist on Wednesday who was not my usual one. He told me all my pain i.e. head, shoulders, hips was due to taking steroids and having a build up of inflammation. I have to reduce prednisolone by 1mg every month. He gave me amitriptyline for the pain 10mg which I have taken last 2 nights and have to say not as much pain. What I can't understand is if steroids are supposed to stop inflammation why are they making it worse for me.

The rheumatologist was adamant that people are increasing their steroids because of flare ups but it could be an inflammation issue because of the steroids. Sounds like a viscious circle to me.

Would appreciate any comments.

[PMRpro Ambassador]

"He told me all my pain i.e. head, shoulders, hips was due to taking steroids and having a build up of inflammation"

The entire purpose of taking prednisolone is that it is one of the most powerful anti-inflammatory agents available. If you have a build up of inflammation it is because the pred dose is too low - not too high.

I would love to know what his evidence is for this theory - because it's one I have never heard from any of the rheumatologists I work with in the PMR field!

[Esmeruth7 in reply to PMRpro]

Thankyou PMRpro. He wants to see me again in 4 weeks so I will ask him more.

[PMRpro Ambassador in reply to Esmeruth7]

Just asked Sarah Mackie - she is very interested to know the proposed mechanism As am I ...

[Esmeruth7 in reply to PMRpro]

Thanks PMRpro I have just read Sarah Mackie's report in Newswire issue 36 and all comments on this forum and I am utterly confused as to what the rheumatologist told me. It seems I will have to wait for my nect appointment to get some answers.

[Longtimer in reply to PMRpro]

Sounds exactly like a Rheumie I have told you about in the past...I think they were all trained in la-la land!

[Koalajane]

Strange information and somewhat unbelievable,I have been on amitriptyline for 6 weeks for sciatica. It certainly worked for sciatica but did nothing for my PMR,

I will carry on with prednisolone.

[DorsetLady PMRGCAuk volunteer]

Strange viewpoint! 😳

[PMRpro Ambassador in reply to DorsetLady]

I've asked Sarah for her opinion ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Be interesting to hear her views on this opinion …

[PMRpro Ambassador in reply to DorsetLady]

Quite - because that has major implications for anyone seeing that doctor when they have a flare ...

[Bcol]

Decidedly odd

[SnazzyD]

Do please ask him to explain the mechanism so he can educate us on the forum. Goes against everything I’ve read and been told, so I’m ready to have my mind blown.

[Esmeruth7 in reply to SnazzyD]

I certainly had my mind blown as I was convinced he was going to up the steroids. I will certainly let you know what happens on my next appointment. He seemed to be really against long term steroid use.

[DorsetLady PMRGCAuk volunteer in reply to Esmeruth7]

Lots are! But perhaps he’s got the magic 🪄 answer-sure everyone would like to know if he has!

[SnazzyD in reply to Esmeruth7]

And then the PMR just magics away?

[DorsetLady PMRGCAuk volunteer in reply to SnazzyD]

Course it does😳….

[PMRpro Ambassador in reply to Esmeruth7]

I'm sure he is - but obviously doesn't know much about the nature of PMR! Next question - how does he feel about condemning patients to long term pain and disability because he won't use pred as required in PMR? In the absence of any other options ...

[Longtimer in reply to SnazzyD]

I had a Rheumi give me his sheet to lower, which was very fast....it put me in lots of pain, when I returned and told him, his words were, if you have pain lowering, it's not PMR....I was speechless, which is very rare for me!....he saw my face and said, this is how I would treat my mother, I can't print what I was thinking. I was so p!eased my sister was with me to witness what he had said!....I never went back!

[PMRpro Ambassador in reply to Longtimer]

Glad I'm not his mother!!!! Is that who I think it is? I think he has revised his ideas rather ...

[Longtimer in reply to PMRpro]

Yes, that's him...

[Seacat30]

Is it the same type of pain in the same places that you had before you took any steroids at all? If so, I would tell him so and ask him to explain.

[Longtimer in reply to Seacat30]

Explain?...some are too arrogant for that....

[Seacat30 in reply to Longtimer]

I enjoyed being told that 'Nobody with PMR stands up like you do.' Oh really?

[piglette]

I begin to wonder if some rheumatologists have landed on the wrong planet. I sometimes am totally gobsmacked by the rubbish they talk.

[Nextoneplease]

Well, that does seem to make some sort of sense Dad2Cue. However, firstly it would be good if the rheumy explained his thinking. And more importantly, if we can’t increase or take steroids, how are we to control pain?? I don’t get where this rheumy’s coming from, in terms of real life as it is lived!!!

[DorsetLady PMRGCAuk volunteer]

Wouldn’t imagine Green-sleeves is anywhere near 10mg -only diagnosed 7 months ago with GCA….and not increasing Pred with GCA risks sight loss.

[Seacat30]

I think it was my springyness that impressed him. It was 10.30am by then and I had come to life a bit.

[Seacat30]

My physio has set me standing up using only one leg at a time glute exercises. My 2 buttock spring is really much superior.

[Seacat30]

That is what happened when Mr Physio made me stand up with my left leg (and my right foot completely off the floor).

[Nextoneplease]

Hi again Dad2Cue

Sorry, did you come to the conclusion that the length of time you were on pred made it harder to come off in itself? Or simply that you were still in need of pred so you couldn’t come off?

I feel I need to try to get a better handle on how hard to try to reduce. I’m only 15 months in, was at 15mg in March 2021, 40mg in June 2021, now at 12.5mg. If I reduce, I’ll probably have to reduce my activity level, and I feel at the moment that life is for the living, especially following lockdowns. My grandchildren will only be this age once!!

[OmiKon]

I got tons of useful information in this thread. Thanks for creating it! 🙏 in a week I guess I will also order some steroids from buyanabolic.com/ to make me feel a little bit better. At the moment I am choosing positions to order.