Story so far

[David_H]

Hi everyone. I've not posted for quite a while so I thought i'd provide a summary of my 'journey' so far. I was first diagnosed in Jan 2015 so probably had it from early December 2014 when my physio recommended I see my GP when I went to her with neck and back of upper leg pain. I started on 15mg Pred reducing to 12, then 10, then 9 (on this for 2/3 months), followed by spells on 8, 7, 6, 5, 4 (was on this for about 8 weeks as I found it a big drop and now been on 3.5 for one week now (doesn't sound much of a reduction 4 to 3.5 (these are the coated version by the way) but i've noticed the drop.

So I'm about 14 months in and on 3.5mg. Symptoms still there (neck, legs, feeling of puffiness under toes) and fatigue but much improved from when first diagnosed. I find it a struggle quite often through the day and evenings I get quite a bit of relief as the discomfort goes off.

I'd be interested to hear from other sufferers who went through a similar story and where they are now.

Cheers Dave

[PMRpro Ambassador]

Intrigued - how can you reduce in that way with coated tablets?

[David_H in reply to PMRpro]

So what's the difference (apart from the obvious)??

[PMRpro Ambassador in reply to David_H]

If you only have coated tablets you must not cut them - that exposes the inside to the stomach and negates the whole reason for being given the coated version.

The coated tablets I'm on come in 1, 2 and 5mg versions. Enteric coated pills in the UK in 5 and 2.5mg versions. That's the only sort of coated pred I've ever come across - so how do you reduce by 0.5mg at a time?

[David_H]

No, no need to cut. I take 1 x 2.5mg (coated) with 1 x 1mg (uncoated) - total 3.5mg. The 2.5s only come in coated form.

[Charlie1boy]

Hi David,

Not exactly a similar story, but I was diagnosed pmr at about the same time as you. Got down to 10mg by June 2015, but still on 8mg now, having been at that level since Xmas.

My dilemma about tapering further is because the preds take 4/5 hours to kick in, then last for just 12 hours. I have been taking the full dose about 8am, but then wake with pretty uncomfortable pain and stiffness until lunchtime, when the morning preds begin to work. Splitting the dose has not helped, as the morning dose does not last long enough, and the evening one takes another 4 hours or so to work.

I am now returning to pmrPRO's advice, and trying taking the full dose about 2 to 3am, when I have to get up anyway!!. Trial and error, and we'll see how it goes, but for the present, I feel stuck at 8mg.

Meanwhile, it seems to me you have done remarkably well to get to where you are in such a short spell of time.

Good luck.

[David_H in reply to Charlie1boy]

Hiya, yes I remember you from a year ago. like you I take mine at 08:00 and, yes, same as you i have discomfort in the morning, bit better in the afternoon and often enjoy a pretty pain free evening. Then it all starts all over again of course.

I am now taking a 2.5mg coated tablet (along with a 1mg uncoated) which, I'm told, takes longer to take effect (being coated) so it will be interesting to see how if affects my day.

I'm pretty sure i woukld have been in less pain overall had I stuck longer at the higher doses but if I can come off the steroids sooner i'll feel happier. I won't be silly about and if I feel it's not the right time to reduce again (as I have in the past and was on 9mg forsome weeks) then I won't

Take care