Rheumatology

Has anyone else been told that their Rheumatologist appointment will only be on the condition that they have reduced Prednisolone medication to zero? I'm 2 1/2 years into GCA and initial dosage of 60mg.

[SheffieldJane]

This is extremely dangerous advice because your Adrenal system will have switched off. Suddenly stopping Prednisone could cause a life threatening Adrenal crisis. Please seek a second medical opinion and perhaps see an Endocrinologist as well.

I imagine the Rheumatologist wants a clean slate to assess your condition, but to put you in danger with this advice would make me seriously question his or her competence.

[Hidden in reply to SheffieldJane]

Sorry, I should have mentioned that I am currently on 2 mg dosage

[SheffieldJane in reply to Hidden]

Even a low dose like that could have a detrimental effect. I would have a morning cortisol test and or a Synacthen test from the endocrinologist before I went cold Turkey. It is an odd request, 2 mgs is a relatively harmless dose and yet it can keep us well. Why do you want to see a Rheumatologist? You seem to have made really good progress.

[Sharitone]

No!! Though I was pressurised to come off quickly I also went up to 60mg with GCA add-on diagnosis 2 years ago. That's just asking for patients to start telling porkies, isn't it?

Does that mean that if you stop pred, then have a major flare, they would see you at once? Nothing else would make sense, or even be safe.

[piglette]

That is rather like saying to any patient we won’t see you until you stop taking medication. What an appalling attitude.

[Bcol]

Abysmal, makes no sense at all.

[posthinking01]

I seem to be seeing a pattern here throughout forums for various illnesses - I suspect this is because if you are on steroids you automatically have to be under medical supervision and if you come off them they can reduce their patient clinic numbers - regardless of how many people may end up with complications or in pain or worse.

[PMRpro Ambassador in reply to posthinking01]

You don't have to be under a hospital specialist though - a GP is enough.

[posthinking01 in reply to PMRpro]

I have been told by two different consultants one an endo that he couldn't discharge me because I was on steroids - he wasn't happy about that.

[PMRpro Ambassador in reply to posthinking01]

How does he account for the fact that in the UK at least 75% of patients with PMR never see a specialist rheumatologist and even more never get near an endocrinologist? To say a patient must be under a specialist because the need pred is a bit sweeping.

I've just looked at your profile - do you have PMR? It is one thing if you have endocrinological problems - totally another when you only have PMR.

[posthinking01]

Hi Richard, would you be able to PM me and tell me which hospital this was please.

[Siena62]

What reason was given for this?

[PMRpro Ambassador]

WHAT? Have you been assessed for adrenal insufficiency? 2mg pred has been clearly stated by a study at Imperial in London to be adequate to function even with very poor adrenal function. Stopping that suddenly could trigger an adrenal crisis so not to be recommended.

That is besides the point that 2mg pred can be plenty to manage the inflammation of low disease activity. If you stop the pred, the inflammation can build up again. And GCA tends to last a lot longer than 2 years for most people. 4 or 5 years is a common time.

I would discuss it with my GP - if you can get to see them. You probably don't need the rheumatologist now but you do need some medical support to supply the pred.

[posthinking01 in reply to PMRpro]

Hi - do you have a copy of this study from Imperial?

[PMRpro Ambassador in reply to posthinking01]

I can't find details of a study but this is the Imperial site discussing their views resulting from their previous work:

imperialendo.com/prednisolone

where they say that some patients will be covered by 2mg - it depends on how the pred is metabolised.

Within it, it links to this work

pubmed.ncbi.nlm.nih.gov/290...

which concludes there is no benefit to switching patients to hydrocortisone as a replacement therapy.

This link

clinicaltrials.gov/ct2/show...

is to the clinical trial they have been running to provide the longitudinal data that they say is required to confirm their view.

[Pixix]

No, but after taking steroids for 3 and a bit years I was told by rheumy that I’d been on them far too long, & it was time to get off! I have out on 3 stone in weight. I explained that I had a bad flare up last year & had been put up to 10mg & was tapering slower this time. He wanted me to drop by 1mg a month, but agreed to 0.5mg a month. After I’m off completely he will give me a CRP blood test & a cortisol test, & will then speak to me by phone. I was told that if I have a flare up this time I mustn’t increase the steroids, but must (& I quote) tough it out. Last two weeks I’ve been toughing it out, & my quality of life has decreased. Due to see my doctor this week, so will be interesting to get his views!! I’m intrigued by how they told you this…by letter, or phone, please? It’s unbelievable!

[Suffererc in reply to Pixix]

I think it is quite scary reading these posts. What has the medical profession come to. Where is the caring and compassion 😕

[Pixix in reply to Suffererc]

overworked & probably underpaid, I think! I was referred back to GP last October, as they felt I was stable…but I guess they hasn’t checked as I had a new referral, with new medical problems, that was done in May last year. I was happy to be referred to GP for PMR, he’s great & wouldnt, I don’t think, ever suggest this as a course of action! I think I only need the rheumies because my GP cannot prescribe certain medicines. Reading the posts I have in the past months of experiences people have had, I think it sadly applies to many of us on this forum! He made it clear, too, that after the tests it would be a phone consultation, not a visit. I guess he’s hoping he never sees me again!!!!!

[Suffererc in reply to Pixix]

I have touched it out too and it did no good . Had to go back to 5mg

[Pixix in reply to Suffererc]

quite normal, I think, really! Keep smiling M that’s the important thing!

[Missus835]

Sounds cavalier and dangerous to the adrenals. Also sounds a bit like my Rheumatologist. At this time I have no GP, so I have to keep her, but rarely see her. My pharmacy sends a fax for refills on the Pred, off which I am gradually tapering. I have PMR, although there was a GCA scare January gone by. The ER Rheumy put me up to 60 mg. Pred and now I'm tapering back down to 20 mg. and will do the slower taper at that point. How is your body feeling at 2 mg? I would want to keep a close watch on the cortisol.

[Temoral]

Hi Richard, I started on 40mg,Aug 21 reduced on Rheumy advice quite rapidly, had to start again Oct 21. Now reached 4mg going much slower. After a few difficult conversations with Rheumy, he now accepts this, and GP has always been supportive. Taking guidance from here...I would always say take it at your own pace , and stick up for yourself with the single minded type of specialist. Good luck 👍

[Exflex]

on the back of the many posts I read about Rheumatologists and their crazy god like pronouncements, I get the impression they are fed up being Rheumatologists and regret their decisions earlier in the medical career. Maybe they would have been happier in a completely different specialty, eg dermatology, something they can actually see.

[Preacherball]

Ridiculous. My rheumy has never said such a thing and has been really good to work with. GCA is a complicated condition and cannot be treated by broad, general pronouncements.

[cranberryt]

I was told at my first rheumatologist appointment “How do you expect me to diagnose you with anything when you have been on steroids for two months. That will mask everything and I cannot conduct an accurate examination.” As if my explanation of my symptoms before and after steroids either isn’t enough or isn’t trusted. I suspect that attitude is what is driving your rheumy’s requirement, however it is dangerous and shortsighted!

[PMRpro Ambassador in reply to cranberryt]

I suppose the answer to that is that they need to set up a fast-track clinic so patients can be seen quickly before the GP quite reasonably offers steroids as pain relief when nothing else helped. But when they have a waiting list of months, even years, what else is either the patient or the GP to do? Other than what my GP did - left me in pain for 5 years. Had it gone on much longer I'd have given up.

It's why we need either a definitive test or an algorithm that gives an indication of certainty it is PMR and not something else.

[MarksPoint]

As we say in Oz...WTF !!!!!! Whatever happened to the Hippocratic Oath that all doctors swear to abide by...."First Do No Harm".

Are you in the UK?

"

[PMRpro Ambassador in reply to MarksPoint]

If you are asking the poster - they have chosen to leave to forum so won't be notified of your reply.

That is why they now appear as "Hidden"