Struggling to reduce Pred from initial dose of 20mg

[Lyra42]

I was diagnosed with PMR on 26 May after two months of symptoms. Started on 15mg Pred but had to raise it to 20mg after 10 days to really sort the pain out.

Trouble is that I don’t seem to be able to reduce. Managed a month or so on 18mg in July but pains came back at 17mg. Started feeling much better during two week holiday in France but gone downhill since came back and back on 20mg. Feeling really fed up. I’ve asked doctor to refer me to the rheumatology clinic.

I’m assuming it’s got worse due to stress - getting back home, going back to work (only doing a very gentle 2 hours per day) and then waiting for my son’s A- level results (good news - he did really well and is going to university). Beginning to feel that the only way I’m going to get better is to go on permanent holiday - but that’s not really practical!

Has anyone else got stuck at such a high dose?

Thank you for all your support x

[DorsetLady PMRGCAuk volunteer]

Think you may have answered your own question, stress... and even going on holiday, nice though it is, has its own stresses.

Just as a matter of interest, how long did you stay at 20mg? ..and did you really feel all symptoms under control at that dose?

Maybe not long enough, I know doctors try and start reducing too quickly, but really you need 4 weeks to mop up all accumulated inflammation. Then, and only then, reduce again at 3-4 week intervals...I'm guessing yours was quicker?

Would suggest you stay at 20mg until you're sure all under control, and then 1mg a time every 3-4 weeks...but do let your GP know what you are doing...and more importantly why!

Not sure a Rheumy appointment will be any time soon, so best to get GP onside.

[Lyra42 in reply to DorsetLady]

Thank you. I was on 20mg for 3.5 weeks the first time round and pain had virtually gone. Just debilitating fatigue. Thanks for your advice. I’ll stay on 20 for now (doctor won’t be happy) and then reduce as you suggest.

[DorsetLady PMRGCAuk volunteer in reply to Lyra42]

Doctor won't be happy...may not be, but it's your pain, not theirs....

[PMRpro Ambassador]

You will only be able to reduce without going backwards if all the accumulated inflammation has been well cleared out before you start to reduce. I got an amazing result in 6 hours with 15mg but it was months before the last vestiges of certain pains had gone enough to let me reduce at all, above all hips and feet/hands. I think it was 6 months before I suddenly though - gosh that doesn't hurt any more! I had already reduced a bit by them. And it was over 4 years before I got reliably below 10mg.

I agree with everything DL has already said - but it may well be you need a bit more pred to start. The 2015 Recommendations say a starting dose range of up to 25mg and exceptionally 30mg. You are relatively young - and experience tells us that we seem to have a rather more resistent version of PMR than average. That may mean it lasts longer (as mine has) or that it is difficult to reduce the dose of pred as they expect.

How does sick leave work for you? That is a different option from permanent holiday - although my husband and I retired in our mid-50s which you can adapt as a permanent holiday rather nicely if you can afford it. We didn't do lots of expensive holiday options - we lived the holiday and combined work and being away with our campervan. My translation etc lent itself to sitting on a campsite and so did OH's consultancy and working out experimental results. Life in retirement can be a lot cheaper than a working lifestyle!

My other question is - what are you trying to do? Being on pred isn't a licence to go back to normal life as before pred and even a bit too much on top of the stresses you describe can have disastrous consequences when they are all put together.

[Lyra42 in reply to PMRpro]

Thank you, that’s really helpful. I’m feeling low because I can hardly do anything. My husband is doing everything in the house. I’m only doing 2 hours activity a day - usually just going to work (non-physical- I’m a chaplain so just sitting and listening to people). I love my job - it’s deeply rewarding - so really want to keep going.

[PMRpro Ambassador in reply to Lyra42]

Mmmm - but it is emotionally and mentally draining and I saw an article recently that explained why brain-work is so tiring! And the commute is also tiring - I worked but my commute was from bed to office in the next room! If I felt a bit rubbish i could delay it a couple of hours.

The fatigue is what it is and even pacing doesn't always help. Has DL included this link?

healthunlocked.com/pmrgcauk......

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

No, so thanks..

[DorsetLady PMRGCAuk volunteer in reply to Lyra42]

Actually listening to others problem's can be stressful, as I'm sure you know only too well...

[Miacaro45]

I started out at 80 mg two years ago. Up and down with the meds and at 7 mg. now. I go down by 1/2 mg each month now. Slow and steady.

[tangocharlie]

I've been on 22 for ages and can't get to 21 even if I take it very slowly. So that must be the right dose for me at the present time. I'd rather not be in this situation due to all the side effects of Pred but we are where we are. Things may be different in a month's time, or they may not, no way of knowing how the disease is going to be, it's different for everybody and doesn't follow a fixed formula