Could I be in remission after 5 years!?

[krillemy]

I have come from many symptoms even on 20 mg. Weakness, fatigue, no energy and pain if I dared to do much more than just light housework, no out in the evening, no gardening, only 400 m slow walk with the dog. In bed at 6 PM to rest. NOW after my mother passed away 5 weeks ago I am, though sad, free from the stress it was to take care of her for a very long time (long story).

So I became suddenly SO much physically better and II have tapped to 15 mg (moonface is going down). I have been on 15 mg now for 11 days. I feel the closest to well as I have ever felt. As close to me before PMR. There seems no limit to what I can do in a day (try to pace myself). It is so overwhelming, and my family are in oar but we all hold our breath, as I know that stress requires more pred. and agrewate the PMR disease, but I have not felt like this on any dose for the past 5 years.

My plan is to stay on 15 for 5 more days and then down to 10 mg. How fast can I do this? From 10 it will be 1,25 mg every 6 weeks and follow the slow taper in the end?

[DorsetLady PMRGCAuk volunteer]

Good to hear you feel so much better, but please don't get carried away....

and if you try 15mg-10mg in one step that may bring you crashing down, so please don't -

try 15-12.5 mg for a couple of weeks, then 12.5-10mg. Ensure at 10mg you are still really okay, then try your suggested taper.

You have been on Pred along time, and I understand your need to reduce... as you feel as good as you do, enjoy the feeling, but don't risk upsetting the applecart by trying to race down too quickly.

Good luck 🌸

[krillemy in reply to DorsetLady]

Thank you DorsetLady. That is also quick! Just to be sure, you mean: Go from 15 mg to 12,5 and stay for 2 weeks, and then down to 10 mg and stay for 2 weeks? I will stop at any PMR sign 😅🙏

[DorsetLady PMRGCAuk volunteer in reply to krillemy]

Yes to12.5mg for 2 weeks, but see how you are at 10mg…2 weeks should be okay, but if you’re not 100% sure, then another week or two….after 5 years, what’s a couple of weeks between friends….😉

[Exflex in reply to DorsetLady]

+1

To OP, 15 to 12.5 is the ‘standard’ taper a Rheumatologist would prescribe. No more than 10%. Having said that I’m stepping slowly using DL’s plan from 2.5 to 2 and that’s 20%. But the new dose is introduced slowly over the course of 5 weeks.

[SheffieldJane]

Bless you and condolences on the loss of your mother. It’s interesting that a (necessary) source of on-going stress once removed seems to have banished the last barrier to your recovery. In fact it was probably a big causal factor in your illness. Go carefully though, as DL counsels, PMR is a tenacious disease and grief can be very challenging in all of its many forms.

[PMRpro Ambassador]

I echo DL - don't get carried away. Just the difference in dose after so long may hit you harder than you think, Ca canny aswe say in the NE of England ...

[Koalajane]

I would say you will only know you are in remission when you have tapered to zero without any PMR symptoms. Good to know you are feeling good though