Latest rheumy appointment

[Broseley]

I had my rheumy appointment today. Long story short, surprise surprise he wants me off the pred ASAP and said I'm taking too long staying on each dose for 6 weeks (that's what I was told to do!) So now I have to taper by 0.5mg per month. He was not concerned about my recent left eye blurriness episode though did ask me about it in detail and was seemingly reassured by the optician's results of all clear.

I've been having regular blood tests at the GP's and my CRP and ESR have been creeping up and are now 20 and 32 respectively. He said my slight hip stiffness is to be expected but if it gets worse then to phone for advice. He said they can do a PET CT but only if I'm on less than 5mg pred or if my CRP/ESR goes up above 50. He got me to stand up from sitting with my arms across my chest - which I can do easily - to show me that I'm fine, really, and if I was relapsing I would no be able to do that.

I asked him about pallindromic rheumatism (PMRPro pointed me at this when I stated how I used to get tendonitis in one joint at a time for a few months.) He said if it was PR I would have swelling as well, as it is a type of RA. He said best to get the PMR/GCA sorted out first then do further investigations if the tendonitis issues come back (they already have - in my elbow). He said it could be seronegative RA.

Meanwhile I am to take paracetamol while tapering to help with any aches and pains. He said nothing about my adrenals starting up though when I mentioned to him that some people on the forum have been on pred for 10 years he said they would never be able to come off it because their adrenals will have stopped working completely, all the more reason to get off pred sooner. And predictably, he said that 'most people get off pred between 18 to 24 months' and as I am already up to 17 months I need to try to taper off it. He did admit though that this is not always possible and that I may have to settle on a low maintenance dose, as long as it's under 5mg so that my adrenals are working.

All comments and expletives welcome!

[HeronNS]

Oh dear. Another doctor who doesn't understand PMR. You need what you need, and cannot worry about adrenal function. In fact most people will, in time, regain their adrenal function and you are nowhere near 10 years yet! The median amount of time before remission is, according to some research, somewhere around six years. I've been taking pred for close to eight years, and a cortisol test about a year ago showed I was producing cortisol at a reasonably good level. My dose was around 2 mg for most of the years, after my initial taper. A flirtation with zero pred in 2020 didn't work, and I did have a very serious flare in 2021 which took a good year to resolve. But I'm still ticking and in fact feeling better than I have for some time, now tapering (yet again!) to 1.5.

There is simply no point not taking enough pred to manage the condition. Then you have both the symptoms and the pred side effects to deal with. Rushing a patient off pred usually means they have a flare and need more pred to get that flare under control.

Tapering by half a mg is not a bad idea in itself, but you must be sure you have no return of symptoms by the end of such a taper, before embarking on the next. And what's the difference, in the big picture, between a month and six weeks?

[Broseley in reply to HeronNS]

Thank you HeronNS. I offered him my copies of Newswire and he looked at me in a puzzled manner and said that's for the lay person. I said yes but it has information about the latest research. He said doctors get continual updates and he didn't need it thanks. Its a shame they're so up themselves that they can't stoop to read a very useful mag like Newswire. All he has to do is skim read it and he might discover something he didn't know!

[HeronNS in reply to Broseley]

🙄 Indeed he might!

[Suffererc in reply to Broseley]

cocky git. Perhaps if he read his updates he would be more informed. Obviously beneath him to learn any more 😊

[Seacat30]

They really like that repeated standing up test. I was too good at it and have also been told to reduce to zero. My inflammation passed on the last set of blood tests. Almost 23 months since I fell ill. I am down to 1mg now. Got pain (but also have proven injuries). Might be getting more flexible? Will see what happens at the next step down. Good luck!

[Broseley in reply to Seacat30]

Thanks!

[PMRpro Ambassador]

Most people DO regain adrenal function - and there have been at least 2 on the forum who came off pred after 13 years on pred. Which an interesting collection of false opinions! Glad he's not my rheumy!

[Broseley in reply to PMRpro]

I had made a diary as advised by someone on here recently (can't remember who, in answer to a post). He wasn't interested in looking at it. I left it with him anyway. I didn't get chance to tell him about all my aches and pains. He only seemed interested in checking me for the standard symptoms from the textbooks e.g. temporal headache, tenderness in the temples etc whereas mine has always been in the back of my head. Standing up unaided has never been a real problem, it's bending/flexing that was a major problem for me - knees, hips, back. He was himself, inflexible when it came to assessing me as an individual rather than a textbook patient.

[PMRpro Ambassador in reply to Broseley]

Very poor. I must get a thread going about such experiences - Prof Mackie and co would find it illuminating.

[Broseley in reply to PMRpro]

Please feel free to collate my comments for this.

[Suffererc in reply to Broseley]

My GP the same ‘get off Pred’ is all she talks about. Has referred me to rheumy 4 times . He has ignored it thank goodness. I am on a low dose of Pred 2.5 but have been down to 1.5 . Waste of time seeing them they seem disinterested 🤪

[Broseley in reply to Suffererc]

Yes they seem to have their own agendas and priorities, PMR not being one of them. Also, being young, I think they have a total lack of empathy.

[DorsetLady PMRGCAuk volunteer in reply to Broseley]

Lack of empathy isn't necessarily age related, but one does wonder why they go into medicine if they don't have it.

[Broseley in reply to DorsetLady]

Speaking on my own behalf, I think when you're younger it's very difficult to understand what it feels like to be older and affected by a rheumatic condition, I certainly didn't when I was young! I now know what my dad meant when he said he felt 102!

[DorsetLady PMRGCAuk volunteer in reply to Broseley]

True!

[Suffererc in reply to Broseley]

Not exciting enuff for them

[Broseley in reply to PMRpro]

He implied that after 2 years on pred it is more difficult to come off it because the adrenal glands can't recover. Not that the disease only lasts two years, but that the treatment should. That's a new one for me.

[PMRpro Ambassador in reply to Broseley]

Well that's a loads of b*££*cks - if you'll excuse the French ...

[Broseley in reply to PMRpro]

Bull***t more like! I think he was wriggling out of the 2 year myth issue, as when he said I needed to be off pred in 24 months I asked, what if I'm still getting symptoms? He agreed that this could be the case, and went on to explain the adrenal issue. He seemed to think paracetamol would be a good pred substitute - indeed I read a post on here recently where someone else had been told to use it during tapering. But it's never helped my symptoms.

[DorsetLady PMRGCAuk volunteer in reply to Broseley]

Paracetamol may help with the effects of steroid withdrawal…depending on what they may be [in fact Kate Gilbert mentions it in her book on PMR/GCA etc] - but it doesn’t help with tapering per se.

[DorsetLady PMRGCAuk volunteer in reply to Broseley]

well mine certainly have…after over 4 years on Pred…and as you’d imagine, I agree with my honourable friends comment😊

[borednow]

Well, he's little star isn't he??!! As he seems to be pretty useless, I'd just carry on doing your own thing. Sounds to me as though you're doing fine with the help of this forum which, in my humble opinion, is worth a million of some of the dozy rheumatologists we hear about.

[Broseley in reply to borednow]

So true! I will, thank you!