Polymyalgia Rheumatica

BettyE--I'm in the US but am curious about your wax bath.  I have considered that in the past.  Any particular brand or features you recommend?

I'll look up the details and send you a PM later today. ( I expect we are not allowed to mention trade names on the open forum. I bought mine in UK but I seem to remeber that it is, in fact, made in USA.

When I was referred to the  O.T. I was given two sessions in the big hospital bath which was what got me interested. The therapist said to check with her before buying and she was very approving of my choice which was reassuring

Thank you.

That's interesting.  I had heard that warm paraffin (the stuff you use to seal preserves) can be incredibly soothing for arthritic hands.   

Hi Amkoffee!  I, too, have consulted my hand surgeon for a tendon rupture in my little finger (right hand). I've been reducing my Pred from 10mg, maintenance, to currently 7mg.  He won't do the tendon repair until I'm at 5mg.  I don't think I can make it to 5mg.  I'm constantly in some level of pain, some days less, some days more, almost like the day I was diagnosed (will be 2 years in Nov.) with PMR.  Lately, I'm sort of averaging a 4-6 on the pain scale,

Did you have to reduce to 5mg for your wrist surgery? How long were you at 5mg prior to your repair?  Did you return to a comfort-state of pred afterwards?  At this point, since I love to swim, too, I'm going to wait to the end of Sept or early Oct to schedule the tendon repair.  I just don't know if I can get to 5mg.  I'm struggling with 7mg, with lots of discomfort, and am staying at this dose for another week before I try for 6½. (I'm following the DSNS process).  Any thoughts would be appreciated!  Thank you in advance.

It might be worth shopping around to see if you can find a surgeon who would operate now. Some surgeons are less fussy about the dose.

If you are struggling at 7mg it is likely to be far worse at 5mg - but if you have to reduce for the surgery there is perhaps not a lot of point in using DSNS which is designed to minimise the likelihood of develop steroid withdrawal which is so similar to PMR patients and doctors think it is a flare. And of course it identifies the right dose for you much more accurately. But since you already are in pain, maybe dropping to 5mg quickly would allow you to have the surgery and then get back to the right dose of pred after a few weeks - you will have a period of pain but you will have shortened the run up to the surgery and speeded up the return to normal. You are in pain anyway - so hurry up the bit you can. The anaesthetist will need to keep a close eye on you for adrenal function during and after the surgery anyway.

I had a surgeon for my hip surgery who wanted me at zero pred. I negotiated with him at 5mg. Have you tried negotiating there is not that much difference between 7mg and 5mg?

Thanks Eileen for your consult!  I would love to find another surgeon, but this one is my 2nd opinion, already (insurance won't cover more).  He is a "Best Doctor" recipient for 10+ years. Very hard to get referrals for him.  He's a sports surgeon for Boston teams, musicians, and other repetitive use injuries.  (I play piano for my own enjoyment, was thinking of harp lessons when this rupture happened). So, I want to stay with this surgeon. (Even the other surgeon I consulted wanted me at 5mg before he'd proceed.) All I have to do is call the office and tell them when I will be at 5 mg.  (which is my morning dose, currently, so I'm only telling a little white lie!!!).  I did try to negotiate with him, and he was adamant about the 5mg.  So, ok, I "can" be at 5mg. temporarily.

I was thinking to make the appointment for early Sept. now, allowing me to pop down to 5mg just before the surgery, then, back up to 10 for a few days post surgery. Then work my way back down to where-ever is my new comfort level.  I know my adrenals will have a fit, I figured on that.  But at least on 7mg, I'm losing the puffy face, my hair seems to be coming back in, altho kinky-curvy, and I've started to lose some weight.  I'll just have to deal with the discomfort, pre-surgery.

I truly wonder, if I were in a serious accident, rushed to hospital & surgery to repair the injury, whether they would not do the surgery because I was on 7mg of Pred. I so doubt it.  But what's the difference?  Here in the US, we don't have the steroid card you have.  I think it's a great idea, similar to our "Medic Alert" necklace tag or bracelet.

Much appreciation for this group!  I've learned so much over the past months!  Thank you for all the links!  At least my GP is on board with my Pred... I went to, now, three Rheumys that were basically clueless. The last one had experience with Lupus and Sjogren's, I had high hopes for her. But she was so uninterested and unwilling to discuss this disease, my GP said not to worry about any more Rheumys, she'd take care of my Pred needs.  I love my GP!!!

I wish there was a directory of Doctor's, Nurse Practitioners, Rheumy's, that are at least aware of PMR, and the long term insults that Pred does to the body, as well as adrenal complications, flares, relapses, if reduction is too fast.  Sigh.  PMR is the 2nd most common auto-immune disease that the over 50 crowd contracts. So why are their so few who understand and can deal with the symptoms? Just food for thought.

Will update the group when I know more.  Thank you again!

Marla

Hi Ptolemy!

Yes, I did try to negotiate with both surgeons.  Both were adamant about me being at 5mg.  You're right about there not being alot of difference between 7mg and 5mg.  But I'm sure my adrenals will say differently!  LOL!  My plan is to temporarily drop to 5mg, just prior (day or two) the surgery, and go back up a day or so post surgery.  I've been on the DSNS since April, so am out of that 3 month concern about steroid withdrawal.  Truth be told, I am on 5mg as my morning dose, taking the other 2mg at nite, so I could just say, "yep, I'm on 5 mg".... little white lie, sigh.

Thank you for responding.  I've learned so much from this group.  Printed off info *DSNS process, the new Mayo clinic findings...) for my GP who is totally on board with helping me thru this, and renewing my Pred prescriptions.  I'll report back post surgery!

I know surgeons do not like pred because of the increased danger of infection and slow healing. They like to limit problems to zero. I suppose I can sympathise. If you were in an accident and you were on a high dose of pred they may operate but they would also be taking much greater risks which would not be good news. I hope it all goes well.

"I've been on the DSNS since April, so am out of that 3 month concern about steroid withdrawal"

Sorry - don't understand what you mean.

Hi EileenH!

My bad!   I should have had the paper open to confirm what I wrote.  I should have typed "cover" instead of "withdrawal".

The paper I tried to remember is found on this site.  I've included the link below for the full document.  I've excerpted, the portions relevant to my comment.

https://patient.info/doctor/precautions-for-patients-on-steroids-undergoing-surgery

Precautions for Patients on Steroids Undergoing Surgery

Authored by Dr Colin Tidy, 19 Jan 2016

Introduction

[omitted]

Pre-operative considerations

[omitted]

• Steroid cover is required if taken within three months of the surgery. This is because adrenal suppression can occur after only a week and may take as long as three months to recover.

Peri-operative management

Patients who should receive steroid cover for surgery (and during major illness) particularly include:

[omitted]

• Patients who have received corticosteroids 10 mg daily within the three months preceding surgery.

Peri-operative steroid cover

[omitted]

Remember that patients receiving <10 mg of prednisolone or equivalent do not need steroid cover but should continue with their usual maintenance steroid dosage. Patients on long-term steroids do not require supplementary steroid cover for routine dentistry or minor surgical procedures under local anaesthesia.

----------------------------------------- end of exerpts --------------------------------------------

Thank you for bringing up my error.  I hope this helps as to where I found the information.

Regards,

Marla

No problem Maria - it just sounded funny!!!