new rhumie: I have just come home from my first... - PMRGCAuk

PMRGCAuk

11,745 members21,440 posts

new rhumie

blackstone1
blackstone1

I have just come home from my first visit to this new rhumie. who gave me the good news that he could find no evidence for active PMR. Wonderful! but I hardly dare hope that it is true He put me through a series of movements that I did well and which he said that would not be possible if I was not in remission.

Because I had suspected GCA I have been on 20 mg preds for the last month or so I am afraid this this intake is masking the PMR

I told him about my scalp tenderness that went away when I went up to 25mg and returned when I went down to 15 He thought that that might e something else as the tenderness was right in the middle rather than to one side. He also advised a too fast taper at 5mg every fortnight and of course I can amend that.

He comes very highly recommended and I really hope he is right What do you learned and experienced people think

18 Replies
oldestnewest
Hidden
Hidden

As a mere baby in this pmr business I will just gasp...wish you luck and wait for grown ups to respond.

PMRpro
PMRproAmbassador

I can do ANY movement test while on pred - and it certainly doesn't need to be 20mg. I could do them after a week on 15mg if it comes to that.

When you are on pred OF COURSE the PMR is in remission: DRUG INDUCED REMISSION.

There is only one test to identify that the PMR is in remission: stopping taking pred and no symptoms returning.

Highly recommended? Time will tell.

piglette
piglette in reply to PMRpro

Not only does pred last a maximum of two years, but if the symptoms go away earlier than that the PMR has gone away too. Oh I wish. What is frightening is that trained consultants are advocating this rubbish, not just GPs who on the whole are not quite so arrogant.

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi,

I do hope he's right...but in tandem with the other sceptic who's already said ... time will tell - on all counts!

Do hope we're both proved wrong!

Thank you for immediate reply I live in hope. Will start tapering and see. Fingers crossed! but I too feel a bit dubious

Hi black stone. Oh dear! I can touch my toes, lift my arms up to the ceiling etc. etc. Because the Prednisone dose I am on is controlling the inflammation, the pain and the stiffness. I am hoping against hope that the gentle, slow tapering programme I am on will eventually get me to zero or as near as possible. Only then will I believe that the dragon has left me.

Please watch that scalp tenderness, none of us can be sure we are in the clear for GCA.

I really hope PMR is in remission for you but you cannot muck about with the risk, taper, taper, taper.

Is your esteemed Rheumatologist perhaps highly recommended for other rheumatic disorders with a higher profile?

We struggle for PMR and GCA to get the priority attention it warrants, I think. No I am sure. Best wishes for a full recovery. I walked over 11,000 steps today and lit a little flame of hope in my heart.

PMR has been the worst illness of my life but I have learned and changed so much, for the better I hope.

What a lovely thought for the day Jane.

May the flame of hope in your heart continue to burn brightly and guide you to full recovery.

I agree with the others blackstone1, even though I am a newbie.

I was diagnosed two weeks ago and am still on my initial dose of pred of 15mgs. (Lower than your current dosage????)

Twelve hours after taking one dose I could have done all the physical assessment exercises the Rheumy gave me just the day before during initial consultation and diagnosis, whilst swinging from a chandelier!!!!!

Totally agree with PMRpro - must be 'drug induced' remission surely?Steroids are a 'miracle' drug for controlling the pain and reducing the inflammation within a couple of hours, making us all believe in miracles and immediate cure. Maybe your Rheumy believes in miracles and myths?

Don't want to burst your bubble. Would love to be proven wrong, but what your Rheumy has told you goes against all I have read and learnt about this condition.

Keep us posted

Sceptically yours

Marilyn.

Oh dear WHERE do some of these specialists get their training !? Even if they are not appropriately or adequately educated during the course of their studies - then surely over the time they are practising medicine and presumably treating patients in their area of speciality they would learn on the job and develop greater expertise by reading the most up to date medical research wouldn't they ?? Since discovering this forum - I have discovered there seems to be an almost constant narrative of people with PMR and/or GCA being given unrealistic, counterproductive and sometimes quite 'incorrect' information by many medicos. I realise there are some 'good' ones and some which are more comfortable 'allowing' patients some latitude with individual treatment - but worrying stories are all too common. Anyway I hope it all works out for you as well as it possibly can.

Best wishes

I prefer to take the wait and see

route.

My strongest recommendation, though, is that you don't taper too quickly, especially seeing as you have been told you are PMR free. Slowly slowly, spare the donkey!

Take care

🌺

Hidden
Hidden

Big difference between treatment and "cure" and sometimes drs need to be happy to be part of treatment and let the cure be part of that process based on patient experience. It seems weird that anyone on significant dose of steroids can be described as "cured" ...maybe I am still brain fogging. I seemed to understand my point at start 😣.

blackstone1
blackstone1 in reply to Hidden

To be fair he did not say that I was cured, what he said was that he could find no evidence of active pmr. As others pointed out the fact that I am on 20mg preds would mitigate against that

piglette
piglette in reply to blackstone1

Hi Blackstone1, acting as Devil's Advocate I think being told I had no evidence of active PMR, would lead me to believe that I could pack in the steroids. I may be maligning him and he was saying the pred was working of course.

Hidden
Hidden in reply to piglette

A much clearer way of saying what my brain was working through lol thanks

blackstone1
blackstone1 in reply to piglette

I did put it to him that it reflected the preds that i am taking but he managed to suggest I prioritise my chest and get off the preds I am paraphrasing of course.I got the feeling that he was questioning my original diagnosis as he also advised that I take painkillers instead of upping the pred dose in the event of pain I find myself on less than solid ground and find myself questioning everything

PMRpro
PMRproAmbassador in reply to blackstone1

Hmm - well, since 15-20 mg is a common starting dose for PMR, expected to manage the symptoms and be more than most patients need - I'd jolly well hope it was leaving you mobile. But given the way PMR is felt by most experts to work I think his reduction schedule is very impractical. If you do flare you will have no idea at all where the dose crossed over into "not enough".

As for "prioritising your chest" - are you breathless with pred? Without pred you may be immobile. The proverbial devil and the deep blue sea perhaps.

blackstone1
blackstone1 in reply to PMRpro

I have bronchiectisis,pneumonia at Christmas and now just out of hospital with abad chest infection that arose fom a mild cold and suppressed immune system, dangerous for me and every episode advances the bronchiectisis so he has a point. I will certainly not follow his unrealistic schedule but will try to get back to the 3.5mg I was at before all this errupted and hope for the best.

Hidden
Hidden

Yes. I understand that. That's why I "" cured. Fortunately you understand that too. But before I lurked in this group I might have thought "cured" ...hence brain fog comment...couldnt quite get words together for what I meant....a common occurrence these days lol. Took me a week to remember what a bay window called. 😶

You may also like...