Polymiagle Hoping to be free of Very soon

[Polymiagle1943]

I was diagnosed with polymyalgia May 2017 my 73 birthday. I am very active and at first thought I had been over doing it. I started on 15 mg. of prednisone a day Unfortunately I was not given calcium tablets until a year after diagnosis and 18 months after diagnosis was given a bone scan that said I had osteoporosis in spine and hips by this time I was down to about 8or 9 mg pred. Can’t remember exactly. Any way I fell whilst barn dancing and broke my hip. I was then put on alendronic acid.

Shortly afterwards I was diagnosed with diabetes, apparently due to steroids. So I lowered my dose over the next few months to 2 mags, a day. None done with doctors advice as I was only called in for blood test. I expect gp.s are to busy and wait for patients to call them. Shortly afterwards I had what I call a flare up. My hands and wrist were badly swollen stiff and painful as well as my shoulders and neck. I went to my gp. Who thought pmr.Would not be in the hands. So sent me for xray and a rheumatologist app. I was better before the rheumatologist appointment arrived. Meanwhile I looked at web and discovered that it can come in the hand, I then increased my steroids to 6mgs. I am now going down fast as this was only a couple months ago. From 6 to 2 .1/2 mg. My question for advice is how quick can I get rid of the last lot of steroids as going down to 2 too quickly could have caused my flare up. The web says 10% at a time but that is difficult to do with tiny tabs. To break up. I found a YouTube video suggesting taking them 2 hours later each day until 24 hours have gone and so on. I don’t want another flare up. Or stay on too long and become diabetic again. Has anyone tried this.

[Mary63]

You can cut a 1mg pill in half using a pill cutter, in order to reduce from 2 1/2 t 2 mg. Have you got 1mg tablets? I think the dose you are on at the moment is very unlikely to lead to a diabetic issue, so if I were you I would not rush it, as you are probably right that going too fast caused a flare.

Good luck

[Polymiagle1943 in reply to Mary63]

Thanks for that, never thought of a pill cutter will buy one and take reduction slower. Interesting to see other blogs with wrist pain.

I wore a brace to do the garden as it was that bad. Wish I had seen them before. I think my Gp. Was thinking along the lines of Rheumatoid. Thank goodness it wasn’t.

[Soraya_PMR]

I’m quite sure your quick reduction caused the flare! And it will do so again and again if you try to force it. There is no alternative to a slow steady(ish) reduction.

You’d be better off treating the bone issue with calcium, vit D3 and vit K2 and weight bearing exercise; and the diabetic issue with a low carbohydrate high fat diet. Both are discussed at length on the forum, try the search function.

And just to add, you have no way of knowing if you were osteoporotic PRE pred, might not be the pred that caused it. Might be your age/post-menopausal/genetics.

[Polymiagle1943 in reply to Soraya_PMR]

Could be all those things or coincidence. I always thought I had strong bones as i drank lots of milk ate cheese and other calcium foods in my life, garden swam walk carried bales of hay etc. Will never know now. Will try look at more on forum now I have joined. Thank you for reply.

[Blearyeyed in reply to Soraya_PMR]

Great advice !

[Purplecrow]

Had you had a bone scan prior to PMR diagnosis...just curious as 18 months of pred seems a short(ish) time to cause dramatic bone loss... but then..I am not a medical person...they will be along soon.

Sorry to hear of your travails, I know the horror stories about prednisone, but recent research seems to debunk most of them...hang around this forum, you will get the latest and best education available from our experts...

shout-out! You know who you are‼️

Kind regards, Jerri

PMR diagnosed 2013.

[DorsetLady PMRGCAuk volunteer]

Hi,

as you are only 2 years into diagnosis, your PMR may still be quite active, despite the fact that many GPs insist it only lasts for 2 years. That is the absolute minimum, and many patients have it a lot longer. So whilst it's active you need the correct amount of Pred to control the inflammation. To cause a flare you obviously went below that level.

As you've found out you can cut tabs to get nearer to the "10%" figure quoted but a slow taper such as one attached may make it easier to get to a lower dose. it very often becomes more difficult the lower you get, less excess Pred sloshing about.

healthunlocked.com/pmrgcauk...

But you need what you need so don't be in too much of a rush to get to zero. That's not the aim, the aim is to get to the LOWEST dose that controls your symptoms.

Might be an idea to have a look at this too_

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

To avoid diabetes problems cut your carbs drastically - after 9+ years on pred and currently at 15mg still my Hba1c is 37 and has rarely been any higher.

You are not reducing relentlessly to zero - you are looking for the lowest dose that gives the same good result as the starting dose did. Nothing you can do will get you to a lower dose than that. And PMR lasts a lot longer than the 2 years so many doctors appear wedded to: that median duration of pred management is 5.9 years.

medpagetoday.org/rheumatolo...

How fast you can taper depends on you and your PMR - nothing else. And going too fast and too low will just result in a return of the symptoms.