First post

[Billswife]

Hello, this is my first post. I was diagnosed with PMR on 10 June this year and started on 20mg Pred daily for 2 weeks (it worked after the first dose, like a miracle), 15mg daily for 2 weeks, then reducing by 1mg daily for a week at a time. This week I am on 11mg daily and feeling OK, no pain. I am finding this site so interesting and helpful and look forward to learning about this condition which I really know very little about.

[Hidden]

Welcome Billswife 🌷

I’m glad you are finding the Forum helpful & we’re here anytime if you have any questions.

Kind Regards

MrsN

[DorsetLady PMRGCAuk volunteer]

Hi,

And welcome,

Would you like to put a bit more on your profile please so we know a bit more about you - makes it easier to answer some questions - different countries have slightly different medications.

This may give you some more info - or raise even more questions!

healthunlocked.com/pmrgcauk...

[Linny3]

Hi Billswife and welcome

I am sorry to hear you have joined the club of pmr sufferers. You are in the right place. I wish I had found this site when I was first diagnosed 3&1/2 years ago. I don't think I would have had quite the struggle if I had known more, especially about decreasing pred, how and when to do it. Good luck and I hope you have a short pmr journey.

[Billswife]

Hi Linny3

Yes, I am still a bit bemused by the reduction procedure, having read posts from other sufferers. At the moment, having reduced from 20mg Pred to 11mg over the past few weeks I am still pain-free but stupidly thought that I would simply continue decreasing by 1mg daily on a weekly basis until I was done, around the beginning of October and that would be that. It is starting to sink in that things might not be so simple! I have been diagnosed by my very busy GP and she was a bit bemused by this assumption. I thought no she is just giving me information on a "need to know" basis and I feel so much support and information coming from this forum that I am prepared to do what I have to do to get better. Hope that feeling continues! Thank you for your good wishes and I hope you keep well too.

[piglette in reply to Billswife]

I think when you get down to 10mg it may be a good idea to slow down the taper, what did your GP plan for you to do? As you have probably read a minority of people get off pred within a couple of years.

[Billswife in reply to piglette]

As far as I am aware, the plan is for me to continue reducing by 1mg. daily on a weekly basis so by the time I see her again, and assuming no reappearance of pain, I should be commencing a week on 6 mg. daily! But after reading many experiences in the past few days I am beginning to feel that things will not be that easy. I had blood tests done again last week to check on blood glucose, kidney and liver function etc. and got the results today - "no undue concerns". Further blood tests will also be done when I see GP again. Does any of the foregoing concern you? I would be grateful for your opinion as I am a complete novice to this.

[Hidden in reply to Billswife]

As I was informed the other day 1 in 5 can find the PMR burn out in a year so you may be lucky. Your blood markers should be ok if you are taking pred but the inflammation markers can substantially lag behind. The main thing though is always symptoms. We try not to reduce by more that 10% and do it very slowly otherwise you can start to get steroid withdrawal. I got down to 8mg the first few months but did have fatigue and aches and pains. I had to go cak up to 14/15mg. 3 years later I am at 6mg too! Been here since September last. As I say you might be lucky and the PMR burns itself out. Slow and steady reduction and life. Sadly there's no way of knowing if it's gone until you have been off pred with no return of symptoms. Good luck and fingers crossed!🌻

[piglette in reply to Billswife]

Seems sensible to have blood tests every so often. I also have Full Blood Test as well as the ones you are having, plus CRP and ESR and occasionally vitamin D. I ask for printouts of the results from the receptionist. At 10mg it is usually a good idea to reduce by 1mg a month and in my case I reckon ideally .5mg a month. Your doctor should be asked though if you do plan to go more slowly than they recommended. Also have you been prescribed vitamin D and calcium? This is advised to help the side effects of the pred.

[PMRpro Ambassador in reply to Billswife]

"assuming no reappearance of pain, I should be commencing a week on 6 mg. daily"

That, at least, is reassuring because you may well get to 6mg OK but she is aware that you may not. However, what does concern me is that reducing the dose by 1mg at a time every week is a good recipe for missing what you are looking for: the lowest dose that manages the inflammation as well as the starting dose. The speed you are reducing means that it is possible that when symptoms return you are already 2 or 3 or even more mg lower than where the dose ceased to be enough. You need at least 2 weeks at each new dose - and sometimes more.

[Blearyeyed]

Welcome to our happy band if Faraway Friends with Wobbly Bob's!!😘

Keep in touch and ask all the questions you need , it really helps in those early days not to worry about the odd this and that when all you really need to be doing is getting used to your medication and coming terms with what you have.

Take care x

[Billswife in reply to Blearyeyed]

Thank you, I am very grateful for all the helpful and supportive responses.

[Telian]

Hi Billswife

It's a shame we have to meet in these circumstances but should you need advice in the future we are here. You seem to coping well with your current tapering regime and let's hope it continues.

You're fortunate to have found this forum early on in your illness, some of us didn't get to know about it for a quite a while.

Best wishes.