Quick introduction open to any questions . Never had need to join any forum and not sure how it works.

[GaryFowler231156]

I was diagnosed with PMR on 1st May 2020. Due to have appointment with rheumatologist, following findings of last blood test, showing high emzine count. Still learning to cope with PMR and restrictions involved. Find this forum helpful and in time hopefully I can contribute to advice through my struggle to adapt.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome.

Have a look at this - if you haven’t already. - healthunlocked.com/pmrgcauk...

And feel free to ask questions as and when they arise.

Only comment I would make is low starting dose, but if it worked good - but your PMR- if it’s like most on here may last a lot longer than you think.

Please let us know how Rheumy appointment goes.

[GaryFowler231156 in reply to DorsetLady]

Just had quick read and printed it to read at leasure. Yes I thought was low dose compared to others, but like you said it worked for me. And yes will update after appointment. Take care.

[DorsetLady PMRGCAuk volunteer in reply to GaryFowler231156]

The initial dose may have been okay - but would suggest you have reduced too quickly since then.

Guess you’ve probably been told to reduce 1mg a month, but I think 0.5mg a month might be more sensible.

[PMRpro Ambassador in reply to GaryFowler231156]

You then have to bear in mind that if you started at a relatively low dose - you are that much closer to the end objectiive: the lowest dose that manages the symptoms effectively. So you need to proceed rather more carefully.

[Sleepysusie]

Hi, I was diagnosed in August 2020 and have found out more about this and how to deal with it on this forum than from anywhere else. It has been helpful while I too am trying to work my way through this. It's so good to hear from people in the same position. I have no real advice myself to give at the moment but from listening to others Ihave learnt to take time for myself and not try to just "carry on" as normal. It's so good to no we are not alone in this 💐

[PMRpro Ambassador]

Hi and welcome!

Do you know what the test is called that shows the high count?

You ask us the questions - and we aim to answer Though we reserve the right to ask you questions too - but be assured, there is always a reason behind them.

[GaryFowler231156 in reply to PMRpro]

No is the quick answer. In the past I have given the doctor my symptoms and taking the medication or advice giving. But realised that I need to ask more. I have appointment with nurse tomorrow for blood pressure, I will ask for more information. Also will add to questions to ask rheumatologist on Monday. Will keep you updated. Again thanks. Take care.

[Rugger]

Hi Gary,

Reading your profile, it seems that you reduced from 10mg to 6mg in 6 weeks? If that's so, then it's much faster than most of us could tolerate. It's usual to stay on your starting dose for a month or more and then reduce by no more than 10% of your dose each time. The aim is for each change of dose to give you the same relief that you felt with the initial dose. If it doesn't, you stay at the previous dose for longer. Many of us reduce in 1mg or 0.5mg steps only.

Just something else to discuss at next week's appointment!

Take care and welcome to the forum.