too much going on - how much to taper after last flare?

[humlies]

Hallo all you wonderful people. About a month ago I had a significant flare of PMR - either due to covid, or to preparing to go to our daughter in Vancouver for 6 weeks, (we leave on Tuesday 23) or to having a recently bereaved friend to stay. Or maybe all 3! I had been almost down to 1 mg. pred; however I went up to 5 mg, which I thought would be plenty to attack the flare. I have continued to have pain, stiffness, extreme fatigue, headache etc etc, so last night, at 3.00am I doubled the dose to 10mg. My rheumatologist had actually recommended that I went up to 10 mg immediately after the flare, but remembering weeks of sleepless nights I was reluctant to do this. I do feel like a different person today!

My question is this: how long do you think I should stay on 10mg, and how fast should I taper back to 5 and then 1?. I am thinking of 3 days on 10mg, then coming down 1 mg each day until back at 5mg; then about 1 week on this and then down to 1.5 over the next week. Does this make sense?

I have so much sympathy for those of you who have thought they were nearly "there" but then had to increase. One lives and learns, and there are so many of you who are so much worse off than me.

[PMRpro Ambassador]

You would probably have managed one, maybe 2, but all 3 together was almost certainly too much.

Your plan gives you a week at and above 6mg which is about the minimum we'd suggest. We say add 5mg to the dose when you flare - that would have been 6mg, You would be amazed how much difference a mere 1mg can make! I would say go to 5mg and then pause for a couple of days to see how you are. I also wouldn't go lower than 2,5mg for now at all, You have a major trip planned in a week's time. It's likely to be as much upheaval as those 3 events were. I know you will be disapppointed not to go back to 1,5mg but it would be stupid to spoil such a trip for the sake of 1mg pred.

[humlies in reply to PMRpro]

Thank you so much for this; I had no idea that 1 mg. could make so much difference, but then I think back to my efforts to reduce from 1 1/2 mg to 1mg, and remember how very difficult that was. What you say gives me hope that I can reduce to a fairly low dose reasonably quickly - and I think the idea of staying at 2.5 mg is good. Our 6 weeks with family in Canada will be wonderful, but it won't be exactly a rest!!

[DorsetLady PMRGCAuk volunteer]

Agree with PMRpro - particularly not going lower than 2.5mg with upcoming trip.

[humlies in reply to DorsetLady]

Thank you DorsetLady for reinforcing PMRPro's advice. What a great forum this is.

[Purpleazalia]

Hi humlies, have you been on 5mg for nearly a month? If so, I would be treating 5mg as my current dose, with the additional 5mg as treatment for a flare.

Can you speak to your rheumatologist for advice before your trip?

I would reduce to/then stay at 5mg until I returned rather than risk the upset a reduction can cause whilst on holiday.

I hope you have a great time and create lots of lovely new memories with your daughter.

[humlies in reply to Purpleazalia]

Thank you for your advice. Yes, I can contact my rheumatologist by email if necessary - I am fortunate to have found a helpful department, but I find this forum is wonderful for advice that is tailored to a particular situation. I will see how it goes, and try not to be too impatient!

[PMR_sufferer1]

My doctor advises tapering on pred by 2.5 mg per month with monthly blood test.

[PMRpro Ambassador in reply to PMR_sufferer1]

That tends to be fine above about 15mg but lower than that it is pushing things and below 10mg it needs to be 1mg for most in PMR/GCA.

[PMR_sufferer1 in reply to PMRpro]

So Inam taking pred in 3 doses so 3 x 5mg timed throigh the day For me ot really works no side effects no psin even in the morning. For those taking morning dose your body processes the pred after aboutc15hrs so it cam lead to morning stiffness as tje steriods havebleft your body.. Now on 12.5 nothings.changed for me so fingers are crossed.

[PMRpro Ambassador in reply to PMR_sufferer1]

For most people with PMR 3x5mg isn't actually enough at one time to manage the inflammation which is created in one dollop in the early morning. At higher doses it may work but I think you have been lucky it works well for you.

[PMR_sufferer1 in reply to PMRpro]

Trust me I was in a bad state couldnt get out of bed without the PMR role or brush my teeth every action hurt bad.The initial feelings in my inner thigh are unexplainsble like i could feel my blood running in my veins.

Maybe i was lucky !

[PMRpro Ambassador in reply to PMR_sufferer1]

But you are still at 15mg - you need to taper from that and that may not be so easy.

[PMR_sufferer1 in reply to PMRpro]

No just started tapering 3 weeks ago been on 12.5 blood test in 1 weeks time and so far i feel good.