Trying to pack and move to a new home. Pain seems to be returning.

[1Purplecrow]

After PMR diagnosis in Oct 2013, I had immediate pain reduction on 20 mg pred. I've been tapering down to current dose of 5 mg. where I'm to maintain till next Rheumy visit in March. Last week I commenced preparations to sell current home and find a new home. Currently I am packing our belongings and seriously engaged in all the preparations to put my home on the market. My Pred dose is 5mg. Since last taper, two weeks ago. I have noticed the pain is gradually returning. It seems transitory , as in, one day I have back pain, next day it's shoulder pain, then knees hurt, etc. It isn't severe pain, but I fear I am on the road to the dreaded flare. Any suggestions?

[PMRpro Ambassador]

To be down to 5mg now from 20mg in October is very fast - one group recommends remaining at 10mg for a year! Whilst you might be able to cope well for normal living at 5mg it is very likely that the stress of a house move is increasing your need for corticosteroid - it is, after all, considered to be one of the most stressful events in life (more than family arguments and job interviews). Plus you are doing relatively heavy manual activity - and that is always bad news with PMR! I had had PMR for 5 years but with no treatment (undiagnosed and relatively mild) and just after we moved with a quite simple move that wasn't needing to find a new family home as we were moving abroad to our flat which we already had here the PMR struck like a ten ton truck - I couldn't get out of bed! Even then it was 6 months before I got pred but that is another story.

Suggestions? Well, either you don't move (which I assume is not much help) or you need to negotiate with your doc to allow you to have a slightly higher dose to cope with the extra effort if you can't get someone else to help you. We've seen on other forums that the younger people who need to continue to work tend to need a slightly higher dose of pred or they suffer as you are. We tell people who are r educing to clear the decks and rest for the first week or so - it does help. If you have an infection or are undergoing and operation or other stress many doctors will up the dose slightly to cover that. And spread things out, don't go at something like a bull in a china shop - and consciously plan a rest period every afternoon that you stick to like glue. It does help.

[1Purplecrow in reply to PMRpro]

Thanks for the practical advice. I think I knew the answer already, but I was hoping to stay with the lower dose.

BTW, This site has been a lifesaver to me. Here in the

U.S., I haven't found any resource even close to this one!! Never heard of PMR till it crashed onto me.

So grateful to have access to other's trial and error experiences. It helps.

Again thank you!

[PMRpro Ambassador]

For the 3rd time today I will tell someone who has arrived in the UK from the other side of the pond (so to speak) - there are 3 PMR/GCA forums based here in the UK, each slightly different from the others. What they all have in common is that the moderation is good and the advice is all based on good medical info and experience - spam adverts are weeded out immediately and bizarre advice is countered with founded responses.

All of them welcome members from anywhere - one of them has members all round the world and a load of night owls as well. When someone is having a crisis in the middle of the night there is very likely to be someone to answer them within a couple of hours. When you are having a crisis even that can be a long time but you will never be left for days waiting for a suggestion.

[IslandShell in reply to PMRpro]

Hello PMRpro, I also am from the other side of the pond and have not been able to find a resource such as this in the U.S. I so appreciate this forum and would appreciate information on the other two forums you mention. As I have followed you on the forum I am impressed with your knowledge of PMR and thank you for the time you put in for us with your responses.

[smiley67 in reply to PMRpro]

I would like to know the other forums that you are talking about ?

[suzieh]

I was down to 5.5 mg then started to feel as you do - I tried to put up with it for a couple of weeks. I then had a horrible week lots of pain and feeling ill - yes a full blown flare. Went back up to 7.5 and now after 2 weeks starting to recover. I think you need to up your dose by a few mg to see if this is adequate to control it- if not maybe more is needed. Like you I am sure mine was linked to stress. Hope you feel better soon and the move goes well

[1Purplecrow in reply to suzieh]

Suzieh, thanks for the reassurance. I did add 2.5 back to my dose, and will continue at 7.5 for a while till I can get the 1 mg pills.

This moving thing is a challenge!