Living with PMR

[smoothilly]

I'm a 53 year old female suffering from PMR for a year and a half now. I am down to 6mg a day and feeling pretty good. I have learned when you go down in your dosage to do it real slow. I got very swollen and puffy in my face, tummy and back of the neck. I didn't even recognize myself. I have decreased my salt and sugar intake and that helps. I am a teacher of small children and I find myself so tired at the end of the day. I look forward to the day when I no longer need medrol to function as a normal person. Thank you for all the advice and encouraging word in this forum. I don't feel so alone.

[Rugger]

Welcome smoothilly,

I don't know what I would have done without this forum. The collective knowledge, advice and support is amazing - not forgetting the humour, too!

Me: PMR 18 months, on 7.5mg, tapering in 0.5mg stages.

[smoothilly in reply to Rugger]

Hi Rugger! Thank you for the welcome. How often do you suggest tapering down? Thanks

[Rugger in reply to smoothilly]

I'm trying 0.5mg each month, using the DSNS taper, but if I don't feel ready to do the next drop, I'll stay at a level for however long before starting the next taper. I learnt my lesson this summer, tapering too quickly at 1mg each month and my PMR flared, so I had to go back to 10mg from 4mg and start all over again. (Click on my name to see the graphs which show what was going on. Hindsight is a wonderful thing!)

If you've not seen it, have a look at the pinned post on the right of this page "Steroid Taper Web Application". It shows many different taper schedules, so gives you an idea of what has been tried & tested or advised! It has been designed by Sandra, who has PMR and who is studying computer science.

Take care.

[smoothilly in reply to Rugger]

.05 sounds good to me. I did the same thing in Sept. and went from 8 to 4 and had a flare up. So I am trying a middle ground now at 6. It seems to be working! Thanks for the chart, it is a good reference.

[Footfairy-1 in reply to Rugger]

I want to eventually do the 0.5mg reduction but my pharmacist say you can't get the coated Pred in that amount, the lowest being 1mg. Unless you know differently?

[smoothilly in reply to Footfairy-1]

I use Medrol and cut in half.

[Rugger in reply to Footfairy-1]

What dose are you on, Footfairy? I'm assuming you're in the UK. Coated pred comes in 5mg, 2.5mg and 1mg tablets, so you can make up any dose ending in 0.5 by using 2.5mg with an assortment of 5s and 1s! Only when we get to 1mg as our dose, will we have to cut an uncoated tablet in half to get 0.5mg.

Hope this makes sense.

It won't be long before I'm on 6.5mg, I hope, so I'll take 2.5mg and 4 x 1s.

Good luck!

[Footfairy-1 in reply to Rugger]

I'm on 15mg Rugger. Yes I'm in the Uk. Dr wants me to stay on for another couple of weeks and that's ok as for some reason over the past 5 days I've developed neck and back pain when resting my back against a chair or in bed. Up til then the pain had gone. Haven't been stressed and have been sleeping a lot (no choice really) ,not overdone anything.

Very weak arms. Was going to start some knitting but won't be able to hold my arms up enough for long enough! Would love to make rugs like you. Maybe when all this is done with.

[Footfairy-1 in reply to Footfairy-1]

Oh, by the way the pharmacist said I shouldn't cut a tablet as this breaks the coating that stops the stomach irritation.

[Rugger in reply to Footfairy-1]

That's right, Footfairy, you mustn't cut the coated tablets! The only time you'll need to cut a tablet will be when you get to very low doses of 1.5 or 0.5mg - in a few years' time (!) and then you can ask your doctor to prescribe some uncoated 1mg tablets, which you can cut in half with a pill cutter from the pharmacist - about £2.

I stayed on 15mg for 2 months.

Here's another example:

Let's suppose you want to drop by 10% from 15mg to 13.5mg. Then you would take 2 x 5mg, 1 x 2.5mg and 1 x 1mg coated tablets - no cutting required.

I feel for you, as I'm knitting at the moment. I've just picked up a cardigan that was 3/4 finished when I was diagnosed 18 months ago - so don't give up hope, you'll get there.

PMR since May 2016 on 7.5mg tapering DSNS in 0.5mg stages.

[Footfairy-1 in reply to Rugger]

Thanks Rugger. I told the Dr today that I want to taper in stages and he asked me to explain. Told him about all the wonderful support from this group and the advice re tapering. He said to talk with him about it when the time comes.

Don't know how I would have coped without the wonderful people in this group. I'm sure I'll continue to need help and encouragement as time passes. X

[PMRpro Ambassador in reply to Footfairy-1]

Down to 2.5 it can be done. You get 5, 2.5 and 1mg enteric coated. Use 2.5 plus 1 mgs and you can get .5 steps. It works fine down to 2mg. Two to one and one to zero are tricky - you have to be creative with then Dead Slow approach but it can be done. I also cannot cut my tablets - and they come in 5, 2 and 1mg, no chance for half mgs at all.

[PMRpro Ambassador]

You seem to have learnt the important lesson: slow is the new fast...

All the best from here on.

[SheffieldJane]

It sounds like you are doing really well smoothilly. Small children are exhausting even when you have full health. I find them energising and rewarding too. Let's hope you are nearing the finish line of this disease. Well done for hanging on to the job, I can't imagine being able to do that.

[smoothilly in reply to SheffieldJane]

Thanks Jane. Movement is good for me and I can do almost everything except sitting criss cross on the floor. I do a lot of wheeling around on a little chair!😁

[DorsetLady PMRGCAuk volunteer]

Hi, if you haven’t seen already I found this very good once I’d got to single figures

healthunlocked.com/pmrgcauk...

[smoothilly in reply to DorsetLady]

Thanks so much!! Very helpful!

[TooSore]

I too work with preschoolers. While they do take a lot of energy, they are so uplifting it's worth it. Without them I may not have gotten out and about in those early days! Good luck on your taper. Go slowly!

[smoothilly in reply to TooSore]

Thank you!