Which direction should I take now?

[Middleton22]

After being diagnosed in February 2022 and started on 15mg Pred daily I was pain free within 24hrs and up to date have had no flares. I have been tapering via DL 5-wk taper and now I have reached 1mg per day which I have been on for 3 weeks with no return of pain. I do however get tired and have naps but feel okay. I have decided to stay on 1mg until the end of January but undecided what taper to start then. Should I taper to 0.5mg and then if this goes okay start the taper to 0mg.

I am due to go on holiday on 16th March for approx 3 weeks. If I manage to get to 0.5mg should I stay on this until I return from holiday and then taper to 0mg.

Any advice would be appreciated from you wonderful people. Getting hopeful that I may be pred free soon.

Best wishes and Happy New Year to everyone.

[PMRpro Ambassador]

Me? I'd stay where I am until back from your holiday and the weather is warmer! Or should that be "less cold"? You have done wonderfully well to be at 1mg after barely a year - don't spoil that for not wanting to wait and do things even more slowly.

[Middleton22 in reply to PMRpro]

Thanks for replying so quickly. I may do what you advise and stay on 1mg until my return. Not sure why you think I have only had pmr for 1 year as it is now 2yrs since I started with the pmr pain and started pred February 2022.

[PMRpro Ambassador in reply to Middleton22]

Er - suffering from amnesia after the change of date!!!!!! "It is now 2024" - repeat until it registers!!!

Nevertheless, 2 years is not long in the PMR world either!

[Middleton22 in reply to PMRpro]

Yes I know what you mean. I have to keep telling myself it's now 2024.Not sure how my GP will react if I don't taper until April. I will have to order a prescription before I go on holiday although she has let me reduce myself but have to let her know when requesting more Pred what dose I am on.

[PMRpro Ambassador in reply to Middleton22]

Just explain you want to go very very slowly. Where are you going on holiday?

[Middleton22 in reply to PMRpro]

Yes could do as I am sure she will be okay with my reasoning and she hasn't had any problems with me on my PMR journey. Really looking forward to this holiday as it was booked quite a while ago. Flying to Tenerife to join cruise ship on its repositioning to the Mediterranean. 19 nights in all and flying back from Malta on the 4th April. Can't wait!!!

[PMRpro Ambassador in reply to Middleton22]

While in Tenerife you could ask at a pharmacy if they will sell you some pred. Some places in Europe will, not sure if Malta does, never tried. That sounds lovely - hope the weather plays ball! Where do you get to visit?

[Middleton22 in reply to PMRpro]

Visit Lanzarote, Madeira before sailing over to Cadiz, Valencia, Majorca, Sardinia, Athens Mykonos, Crete then to Malta. I think we have a couple of port days in Crete.Not sure what weather will be like but at least I don't have to clean and cook..

[PMRpro Ambassador in reply to Middleton22]

Golly - actually, although I don't like cruises, that could appeal! I've been to Lanzarote and Malta for proper holidays but none of the rest and I would like to see them.

[Missus835 in reply to PMRpro]

Funny. I had no prob with remembering 2023, but find myself tripping over 2024. Doing the math in my head. Lol. Maybe because it's a Leap Year?

[DorsetLady PMRGCAuk volunteer]

For the record, agree with PMRpro - stay at 1mg until after holday...absolutely no rush.. Under 2 years is very good to be so low... don't rock the boat. 😊

[Middleton22 in reply to DorsetLady]

Thanks DL. Been tapering using your 5-wk taper chart although I have repeated weeks sometimes which makes it maybe 6 or even 7 weeks to get to the new dose and then staying there for at least one month before thinking of tapering again. It was my lucky day when I found this forum. What a lifesaver for me as I was totally devastated and had never heard of PMR.