Polymyalgia

[Breid101]

I’m new here. Was diagnosed with PMG about 4 years ago. Been on Prednisolone ever since. Started at 20mg now down to 3mg. Just been reading NHS info re PMG and seemed to indicate that the condition usually lasts up to 3 years. Because the steroids keep me pain free how do you know if the condition is still active. I also have very tender scalp most of the time for the past couple of years. Is this common?

[SheffieldJane]

Hello and welcome to the site! You are doing pretty well if you are symptom free on 3 mg. The painful scalp needs to be investigated in case it is related to GCA. This can and does happen unfortunately. Please alert your doctors. The very best of luck!

[DorsetLady PMRGCAuk volunteer]

Hi,

As SJ says please get your scalp checked.

Actually the average time for PMR is now quoted at just under 5.9 years - from studies in America.

Provided you are on the correct level of Pred you should be pain free (or almost), but that doesn’t mean the illnesses is gone, just means the medication is controlling the inflammation caused by it.

The only sure fire way to know if PMR is in remission is to get to zero and stay there for weeks or even months with no return of symptoms.

[PMRpro Ambassador]

The median duration of pred management for PMR is actually 5.9 years! Not what the NHS so mistakenly claims and we, as mere patients, have been saying for years.

medpagetoday.com/rheumatolo...

The only way you can know if it is gone is to keep trying to reduce in 1/2mg steps every so often and see if it works. If you get niggles you go back to where you were and wait again. But 3mg is a very low dose and if I ever get there I'll take it gratefully!!!

[Daisychain12 in reply to PMRpro]

I’ve been repeatedly told PMR lasts 6 to 12 months. I just smile and nod. And grind my teeth.

[patriciawhite in reply to Daisychain12]

Ha yes we do a lot of teeth grinding don't we .It's almost obligatory !

[Hidden]

Hi Breid101 I don't know if you have seen my posts from 2 years ago and if they will help you at all but I was similar to you tender scalp when I got down to a low dose but I carried on with my reducing pred and i have now been off of Pred since February 2017 and tender sca!p disappeared when I came pred completly It took a good 6-8 Months for my arms and shoulder to stop aching and feeling tender, 3 of my friends had PMR and 2 are now off of Pred they both to!d me my arms and legs would ache. It is a kind of weird feeling you aren't sure if it is a flare up but it is a different pain. My GP suggested i took ibuprofen if pain was too bad which I did for 3 months, and I have been feeling so much better since last december my muscles have got stronger and I am back to my old self.

[powerwalk in reply to Hidden]

That is good news! Well done.

[powerwalk in reply to Hidden]

Hi - can I ask - did you have issues with fatigue while trying to get off the pred? Or indeed throughout the PMR phase?

[Hidden in reply to powerwalk]

Hi I did get tired while reducing the pred but it was a tiredness like when you start exercising for the first time and your muscles ache . It is like a circle the pmr weakens muscle so does pred you start strength muscles they ache but a different kind of ache. I gave up my job in retail in May this year and have felt this well in 4 1/2 years so I really think that PMR is linked to stress like my GP suggested. We even moved house in September and I had no flare up so I am just keeping my fingers crossed things stay like this.

[powerwalk in reply to Hidden]

Yes couldn't agree more - I definitely got this because of severe stress! Many thanks. Best wishes.

[Cyclegirl54 in reply to powerwalk]

I think it was stress for me too.

[Valnvaughan in reply to Hidden]

I am on 2—1.5 mg Prednisolone. I find I have sensitive scalp....I think it is a skin / thinning hair thing....feel like trying a pre-wash oil moisturiser...what do you think?

For my aches I’ve found a light rub with one of those knobbly rollers to stimulate blood flow seems to work.

Valerie

[Hidden in reply to Valnvaughan]

Hi Valerie..My scalp really tender as i got down to 2mg pred and my skin was really dry and itchy i don't think I have ever used so much moisturiser!!!! As for my hair ...It was always fine flyaway hair with a bit of a wave while on pred it seemed to thicken up and it is now really wavy!!! I found using coconut oil once a week was amazing but you do have to put shampoo on your hair before wetting it with water as the oil stays on it and my hair goes lank. Hope this gives you some help.

[Valnvaughan in reply to Hidden]

Thanks for tip.

[Suet3942 in reply to Hidden]

That’s fantastic, hope for us all.

[patriciawhite]

5/6 years is more realistic ,don't ignore a tender scalp .Odd as it sounds when we get used to something we do tend to accept it and ignore it don't we My Rheumatology do monthly blood tests to check for inflammation see about that it keeps you up to date while you are reducing reducing ,good luck with the reducing but don't be a hero . We all have different things and reactions so you will have to take our advice in a pick and mix way . Nothing is set in stone ,This condition affects us all in different ways