Some advice please........

[Janann25]

I was diagnosed with PMR about six weeks ago and was prescribed 15mg Pred which worked wonderfully - like magic! After three weeks, advised by Dr to reduce to twelve and a half but that was too big a drop. Following the advice from the lovely people on here, I asked for and was prescribed some 1mg Pred, so I could decide myself what was needed. Thirteen and a half mg has worked fine for the last week or so but two days ago I had the return of the pains in my shoulders and neck, resulting in a really bad headache. I've gone up to 14mg but that doesn't seem to have helped. My question is, do people sometimes have to get back to their original dose, even after six weeks of starting treatment.

I'm due to go on a 7day cruise tomorrow - the first cruise on my own since my husband died last year - and am already both excited and very nervous - so I need to know I'm on the right track with my medication before I go.

Once again, thank you for all the help and information which this forum gives.

Jan

[DorsetLady PMRGCAuk volunteer]

Hi Janann25,

Would hazard a guess that Dr should have left you on 15mg for a wee bit longer - just to ensure the inflammation was fully under control before he reduced you. Although a 2.5mg drop is a "recognised" taper, many people do find it too much like you, particularly if it's done quite quickly.

Unfortunately some do have to go back to original dose, and I think with your cruise coming up soon it's probably a must. The fact that you have been thinking about it, and as much as you are looking forward to it, it's probably added to your stress - which hasn't helped the PMR either. Plus you're still going through the bereavement process, and every time there's a 'first" (birthday, holiday, Christmas) without your husband it's stressful. Been there!

Although you probably feel a bit deflated, think it might be wise to go back to 15mg, give it plenty of time to do it's work, and then, when YOU feel ready try reducing by 1mg. As I said, you need to take account of your situation and symptoms and do it your way - if your Dr knows your situation, which I hope he does, then he should let you take the lead.

Just take the last few weeks as a blip and start again.

Ensure you have a good supply of Pred for your cruise, ask for assistance if you need it, don't try and do too much (even though you may feel better - the PMR is still very active) - but most of all, enjoy yourself.

[Janann25 in reply to DorsetLady]

Thank you so much - you've no idea how much I appreciate the advice on here. I'll definitely go back to 15ml but as I've already taken my usual dose at 4.30 this morning- oh, deep joy!! - can I take 1mg now, to top to up to 15mg or should I wait until tomorrow to start 15mg again.

Thank you, Jan

[TooSore in reply to Janann25]

Yes, add the extra 1mg

[Janann25 in reply to TooSore]

Thank you - will have an early lunch and take it now.

Jan

[Seabyrd]

Sometimes when reducing its a good idea to alternate the old dose one day and the new dose next day for a week or so... that way about the time your body says thats not enough the old dose is taken to satisfy... That's the only way I reduce and it's worked for me all along but we are all different... good for consideration though. Hope you enjoy your trip.

[PMRJ]

Having struggled with tapering doses with PMR for a very long time, it seems best if traveling to stay with the dose that keeps you as pain free and comfortable as possible. Perhaps your original dose. Tapering can wait until you return and you begin tapering again. This is not a failure in your healing plan. It is a strategy for now. Peace and have a wonderful journey. From your PMR friend who is 2 years into the healing journey. PMRJ