First Appointment with Rheumatologist...

[Spittal9]

There’s 15 minutes of my life I’ll never get back! What a waste of my time. Was diagnosed with PMR in hospital 6 months ago and put on 10 mg of prednisolone. At my request, as still in a lot of pain, it was upped three months later and I went up to 15mg. A couple of months after that I upped it again to 17.5mg and that relieved most of my pain. GP unhappy with this and said to go back to 15mg. Then she changed her mind, but forgot to tell me, that 17.5mg would be okay.

Anyway, saw rheumatologist yesterday, who confirmed my starting dose should have been higher, said he would have started me on 20mg and that obviously I’ve been messed around a bit by GP. His proposed plan for me is to reduce monthly from now, going from 17.5-15-12.5-10-9-8-7-6-5-4-3-2-1-0. He reckons it’ll only last another year to a year and a half and then I’ll most likely be fine. He said there are some people who are on it a bit longer. I love his optimism lol...

He did say that if I have a flare I should go back to the dose the has worked previously before reducing again and that makes total sense to me. I’ll be following the advice of my fellow sufferers on here, with his guidance in the background, and it will take as long as it takes.

[Blearyeyed]

The positive side of things is at least he kept you on your medication and told you you can increase if you need to.

And agreed that your GP had mucked you about and that you should have started on a higher dose.

So definitely not 15 minutes completely wasted as you now know that even though his timetable is optimistic if the GP argues with your needs you have his advice to increase when necessary to fall back on to.

Take care xxx

[Spittal9 in reply to Blearyeyed]

Hi Blearyeyed, yes, as you say not a complete waste of time. I suppose I was wanting him to tell me something I didn’t already know lol.

Hopefully my GP will be okay if I need to tweak my dose, following his advice. I’m pain free most of the time just now at the slightly higher dose, so enjoying this wee hiatus for now.

[Blearyeyed in reply to Spittal9]

That's the point you can say , " well the Rheumatologist told me to ....." far less stress getting things sorted out locally when you have that extra backing xxx

[jinasc]

You could, if you want to, send me a PM and I will send you the article that Dr Sarah Mackie wrote for our magazine about the small trial of DSNS and take both to discuss with your Rheumy. Looks to me as though he might be interested and open minded.

[Spittal9 in reply to jinasc]

Hi jinasc, that would be great, thanks for that. I’ll message you now. I’ve to go back to see him in six months to see how I’m getting on with tapering. He was actually really nice and at least I’ve got his advice to fall back on of increasing again if I have a flare.

[SheffieldJane]

He doesn’t sound too bad. It’s just that you know so much now. He may come in handy later. We are a pretty fearsome group for any doctor.

[Spittal9]

Hi there, I told him I was part of this forum, attended a support group and read anything I could about PMR. At least he listened to me and agreed that me increasing my dose was the right thing to do. I have gained so much knowledge about PMR since being on here. Definitely helps!

[RecentPMRdiag]

Hi Spittal9,

I am only 6 weeks into PMR and Pred tapering - but from my experience so far some of those drops in the tapering are too ambitious, and it takes a while to recover from a relapse.

A couple of tips from this forum I have used successfully:

- The initial dosing of Pred is supposed whatever is required to 'control' symptoms. There does not seem to be a clear understand of how much discomfort is deemed to be 'control'.

- Split dose between AM and evening (rather than only AM). I split 2/3rds AM and 1/3 evening and it has improved sleep and increased my energy and concentration levels - and therefore makes it easier to drop down to a lower dose.

- Cut up the pills to reduce the size of the steps (I cut 5mg pills into quarters to give be 15-13.75-12.5 sized steps [I have only got to 12.5 so far]). I have found small increases in Pred dosing effective in dealing with relapses (I have had two relapses so far).

- Keep a detailed diary of daily symptoms, diet, sleep, exercise and dosing times - to help you analyse the effect of dropping dose levels. I have noticed a 2-3 day delays in symptoms after long days/exercise.

- As Pred dosing drops I feel much better and need to resist the inclination to overdo backlog of work and exercise.

- Try and establish a daily routine (including early nights) and resist pressure to change routine with Xmas tasks

[PMRCanada in reply to RecentPMRdiag]

I did exactly the same as what you had noted and it has served me well two years into my PMR journey!

[Spittal9 in reply to RecentPMRdiag]

That’s for the advice. Good idea to keep a diary of any changes. My aim is to take it slow.

[PMRpro Ambassador]

Not an entire waste of time - he has confirmed you were correct and others weren't and that is worth a lot. The GP was daft - but those actions starting you at 10mg and trying to stop you using the right dose has wasted a lot of time and had you on pred with no balancing of the bad aspects with benefits.

[Spittal9 in reply to PMRpro]

You’re right, not a complete waste of time. I was started on the 10mg by a consultant when I was admitted to hospital in June with what turned out to be PMR. Time has been wasted but hopefully now on the right track.

[PMRCanada]

Sounds very “typical” of most rheumys....especially the textbook tapering plan and optimistic forecast of when you’ll be completely off pred (sigh). There is no way they can predict disease activity and need for alternate dose level, or when PMR will go into remission.

At least there was some recognition of possible flares with instruction on how to deal with it.

[piglette in reply to PMRCanada]

I would say he was a lot better than a lot of rheumies! At least he did not insist on Spittal9 rushing down to zero like a bat out of hell.

[Spittal9 in reply to piglette]

That is very true! It’ll be interesting to see where I am tapering wise when I see him again in six months.

[Spittal9]

I am ever the optimist but also a realist and know there will be no hurrying PMR from my life. Slow and steady is my aim.

[RichardC]

I think you have more positives than negatives from that appointment, particularly his openness to flexing the doses. Have a great Christmas and we'll see you at the support group soon !

[Spittal9 in reply to RichardC]

Hi Richard, yeah I think you are right when I read other peoples experiences. Hopefully see you all in January. Got the job I went for! Not started yet but it’ll only be two days a week to start with. Hope you have a great Christmas and all the best for 2020. Cristine