PMR

[foster123]

Hi

My name is Margaret

I have had PMR for about 5 years now?

Started on a high dose, have come down to 2 mg tried to come down last week to 1mg but had to go back up?

can’t believe that extra one could make a difference?

[PMRpro Ambassador]

Someone has posted today about the difference 1/2mg can make! Sad - but true!

[Kaaswinkel72 in reply to PMRpro]

Absolutely so.... I am OK on 1.75 mg but got the well known PMR pain in my weakest area s the neck on 1.5....so back on 1.75 the body tells me...I don t think it will kill me ...so slowly she will go....😉

[Constance13]

Margaret, can you give us a little information about yourself.

You will probably have other questions to ask and it helps if we know your background (as far as PMR is concerned).

[DorsetLady PMRGCAuk volunteer]

This is post PMRPro referred to -

healthunlocked.com/pmrgcauk...

[Mary63]

It’s not so much that 1mg drop is a lot....more that 2mg to 1mg is a 50% drop in dose. And 50% drop is still a 50% drop whether it is from 10mg to 5 or 2mg to 1mg. Can you cut your pills in half?

[Charlie1boy]

Hi,

I've been living with PMR for almost exactly the same length of time as you, and am currently at 1.5mg daily.

Yes a half mg makes a tremendous difference to me, and I wouldn't have contemplated a 1mg drop from 2mg. From 10mg onwards I have only ever dropped a half at a time.

I went from 2mg to 1.5mg using one of Dorset Lady's slow tapering plans. So far it has worked, but as PMR seems to fluctuate almost on a daily basis, I am not counting my chickens yet.

Seems to me that the lower I get, the more patient I have to be!

Good luck

Paddy

[Crusherone in reply to Charlie1boy]

Hi my name is Tom I am on 2mg a day and I would love to drop to 1.5 could you please tell me the Dorset Lady's tapering method thanks.

[Charlie1boy in reply to Crusherone]

Hi Tom,

The one I used went like this:

Week one - Sunday & Thursday new dose. Other days old dose

Week two - Sunday/Tuesday/Thursday new dose. Other days old dose

Week three- Sunday/Tuesday/Wednesday/Thursday new dose. Other days old dose.

Week four - Sunday/ Tuesday/Wednesday/Thursday /Saturday new dose. Other days old dose

Week five - every day new dose.

All I can say is that it seems to be working for me, though some days I do have slight misgivings as I do feel a bit of PMR pain. Other days though it feels fine, so I am keeping my fingers crossed. I'm not thinking about trying to go to 1 mg for a few weeks yet.

There are slower more drawn out tapering plans, which take about seven weeks, particularly the DSNS method - dead slow nearly stop.

Hope you find this helpful.

Good luck

Paddy

[PMRpro Ambassador in reply to Charlie1boy]

DSNS can be anything from 4 weeks to nearly 8 weeks depending on where you start. Or even longer if you double up on each step ...

[Charlie1boy in reply to PMRpro]

Understood, and I realise all these tapering methods can be adjusted to suit.

I was only thinking of the DSNS method I used. Perhaps I should have made that clear.

Thanks

Paddy

[Crusherone in reply to Charlie1boy]

Hi Paddy thanks for your help I will try that obviously I will have to use a pill cutter for the new dose to be 1.5 mg I have tried dropping from 2 to 1 and I find my hands go stiff but I am 76 and been a builder all my life well thanks again for your help All the best Tom

[Charlie1boy in reply to Crusherone]

Yes, a poll cutter should work well. I got mine from a pharmacist.

Just hope it goes ok for you.

From a 79 year old old codger!

Paddy

[Patience_1]

Hi, I just want to echo what others have said about halving (or even quartering) the pills. Ever since I was on 12.5mg I've only been able to tolerate 0.5mg steps down. It certainly makes me feel like a slowcoach, but almost without exception I've been able to keep heading in the right direction - which gives me a huge boost. It may also just be that you've reached a plateau and the amount of inflammation you still have requires the slightly higher dose.

[foster123]

I am now on 2mg, I seem to be ok on this

but would like to come off them altogether if possible?

[dancersize]

Hi Margaret after 2 1/2 years I'm down to 2.5 with the help of methotextrate but found 2 was a step too far so I've cut the one's in quarters and trying 2 1/4 using the slow taper. Thought I might have got to zero by January when I see the rheumy again but that's not going to happen. The rheumy said I should listen to my body. Drop from 2 1/2 to 2 is 20% so too big. Well done for getting to 2. We'll get off eventually (I hope)

[foster123 in reply to dancersize]

I have never been to refered to a rheumatologist, doc has never sent me?

Hope all goes well with you?

[Jankie]

Hi Margaret

Sounds exactly like my pmr journey

5 years and I’m on 2 1/2. Tried to go to 2 using dead slow method but too achy .

I will try again in a couple of months but I seem to be stable on 2 1/2 and anything below 5 is acceptable

I have had one big flare in 5 years and that was last year so I’m very wary of dropping down to low

Good luck

Jan

[Purplecrow]

Pretty amazing that such tiny bits of prednisone are so powerful! Makes me stunned at the dosage levels where we began.

[Florish22]

Do u ever get severe weakness weaning down