Rheumatology Phone call !!

[rachelbell]

I have received a letter from my rheumatologist saying that I will be having a phone call to see how I am getting along .I have now tapered down to 6.5 going along okay but still very much suffering with sciatica which I have been told has nothing to do with PMR . My eyesight has not improved but that has been put down to diabetes being diagnosed same time as PMR. I've have sweats where I'm literally drenched everyone going around in jumpers I'm in t shirt .

Anyway what I want to ask is there any questions I should put to him before he takes me off his patient list please because once off your off 🙄😷

[Africschoice]

rachelbell you need to read the study done by The University of Sheffield. It's done White Rose Research Online URL it is a repository copy of a qualitative study of patient experiences of PMR, really interesting. http//reprints.whiterose.ac.uk/85252/ hopefully you can find it, if not someone will see this and put you on the right line 🤔

[Suffererc in reply to Africschoice]

could get this . Could you share a link please 🙏

[PMRpro Ambassador in reply to Suffererc]

semanticscholar.org/paper/%...

[piglette]

If you have sciatica it is normally on one leg and is at the back and start at the very top of your thigh and is excruciatingly painful and totally unlike PMR. It does go away eventually.

[rachelbell in reply to piglette]

Yes it's sciatica had it long time now and it's treated as a separate issue

[piglette in reply to rachelbell]

It is just horrible, takes my breath away.

[PMRpro Ambassador]

Well I'll disagree with him on the sciatica - it may not be directly PMR but myofascial pain syndrome can be part of some patient's PMR and IT can cause sciatic by causing the piriformis muscle to pinch the sciatic nerve where it passes through the muscle.

[rachelbell in reply to PMRpro]

Yes I have read that myself but he didn't agree!

[PMRpro Ambassador in reply to rachelbell]

Your average doctor really ISN'T well up in what muscles can do!

Claire Owen is a leading researcher in the PMR field, together with Sarah Mackie in the UK and has probably forgotten more about PMR related stuff than the average doctor ever knew!

jrheum.org/content/jrheum/4...

[SheffieldJane]

I would make a few notes of how you are feeling now and particularly ask about adrenal function as you have entered this challenging phase of the taper. Not a time to be without a Rheumatologist methinks. They may have recommended stretching exercises for the sciatica too.

[RachelJDH]

Strangely for me the sweating was awful and i found myself showering 2 or 3 times a day as i like to feel clean and dry. I also had bouts of sciatica. I did find that increasing my water intake helped loads with that. 🤦‍♀️ all these side effects seem to affect the balance of how your body works.

[strawclutching in reply to RachelJDH]

Hope you don't mind me asking about the sweating. Is this due to withdrawal as we reduce the Pred in lower doses, or is it a side issue altogether? I have insulin dependent diabetes and sweating for me has always alerted me to hypoglycaemia & the urgency to eat something. As I'm currently tapering to 7mgs Pred, may there soon be 2 reasons for any sweating to consider?

[PMRpro Ambassador in reply to strawclutching]

Probably already more than 1 - PMR/GCA cause sweats, so does pred, so does lack of pred in adrenal insufficiency!!!

[strawclutching in reply to PMRpro]

OK thanks. This illness gets more complicated as it drags on.

[RachelJDH in reply to strawclutching]

I am not able to give you an informed answer but I think for me it was the prednisolone - it is certainly one of the side effects listed. I found it rather distressing as i hate feeling unwashed and I was changing clothes constantly and my sweat did not smell the same as normal - It does seem to have gradually faded over about 12 weeks tho.

[PMRpro Ambassador in reply to RachelJDH]

That can happen in PMR without pred - happened to me early days but over a period of probably a year if not longer. The only cure I found for the BO was to stop using deodorant and allow my skin microbiome to recover naturally. Which it did and I haven't used deo for probably 16 years - and no, I don't smell!

[PMRCanada in reply to PMRpro]

I haven’t used deodorant for over 5 years and my body, like yours, has adjusted with no odour present. One small victory.

[PMRpro Ambassador in reply to PMRCanada]

And it saves a small fortune!

[strawclutching in reply to RachelJDH]

I found the sweats during the menopause got me really down. They went on for 7 years.😟

[rachelbell in reply to strawclutching]

So if you don't mind me asking how old are you or when the 7 years stopped !!!

[strawclutching in reply to rachelbell]

I started getting them at age 52 and they began tailing off at around 59. I'm 69 now.😐

[Pixix]

I have sciatica on one side and trochateric bursitis on the other. But I had it just like this for one month two winters before I had PMR. Our rheumy dept is reading patient notes & handing patients back to GP. As I’m waiting one year for an urgent referral, I’m sorry to say that I’m in favour of this, selfishly, as it may give a path for those of us waiting a year to get a consultation. Sorry if this offends, but if you’re asking us what question you need to ask & you don’t have any, then perhaps you are ready to be GP managed! My referral to rheumy is not for PMR, I’ve been through the gp for 3 years, & this forum has answered all my questions! Yes, I’ve had the sweats for 3years, too, but they are lessening now I’ve crawled slowly down to 4mg!! “Once you’re off you’re off” isn’t true, as I was referred for arthritis & then taken off as I’m under other specialty areas for that, & now I have a new referral in place. Just hoping the info helps