Discouraged

[christi48]

I started taking 5mg of Pred last June after my dx of PMR. I did well and was feeling great - almost like normal, and my inflammatory markers were in the normal range. So, on November 11 I started the ds taper routine and continued to feel great all through the 4 1/2mg period and finally got down to 4 mg. where I decided to stop the reduction and see how I felt going forward on 4 mg. Unfortunately, I started a downward spriral and got to the point, after a couple of weeks at that stage, where I was feeling bad enough that I reluctantly returned to taking 5 mg. five days ago and am very disappointed to discover that I didn't start feeling better. Before, at 5 mg., I even had painless nights. Now, at 5, I am dealing with hip pain again that keeps me awake at night. What have I done wrong and what should I do now? How does a person know when it is OK to start a taper? Thanks for being there for me.

[piglette]

If you start to feel bad, what seems to work is to increase your dose by 5mg for about a week to really hit the PMR on the head. You can then drop back quite quickly , I would do it in two steps, say go to 5mg first.

[Lilly-Gee]

Hi cristi48 Im not an expert but I too had trouble in my ds taper at 4 mg I went up to 5 then started to reduce again by 4.75 4.5 4.25 and so on til I got back to 4 …sat there for maybe 4 weeks until I was stable and have continued the tiny taper (as I call it) and now have been able to get down to 3 but the hurdle getting stable at 4 really rocked me. It made me think I was never going to get there and thinking like that just made me worse! I also had some acupuncture when the pain got to me and it helped a bit. Just enough to get me through 😃 I know we are all different so I guess what I am saying is when you get to the low doses don’t reduce by halves go by quarters 😃. I usually experience a week of tiredness when I make it to the lower dose and then I gradually even out. I also keep moving, walking is my go to when I am sore and yoga if I have the energy, sleep helps too but Im sure by now you know what works for you. Good luck try again when you feel you can 😊 I have just started to reduce to 2.75 🤞 I hope you can get on top of it soon 😊

[christi48 in reply to Lilly-Gee]

Very helpful and encouraging. Thank you so much.

[DorsetLady PMRGCAuk volunteer]

Just to clarify, are you saying your starting dose last year was only 5mg? If so why?

That’s a very low dose, and although you say you felt okay it was obviously not enough to deal with the accumulated inflammation [which can take months to actually cause an issue and it usually treated with a much higher dose] and the new daily shedding of substances [cytokines] which cause that inflammation.

The fact that your inflammation markers were normal is not necessarily a guarantee that all is okay.

As piglette says you may need to follow the advice re a flare in link below to get yourself back on track -

healthunlocked.com/pmrgcauk...

Maybe also have a read through this info post -

healthunlocked.com/pmrgcauk...

And I think you need to discuss the situation with your doctor…although if they only started you on 5mg not sure how much they actually know about PMR.

[christi48 in reply to DorsetLady]

Actually, she told me I needed to take Pred and I said "lowest dose possible, please", so she recommended 10 mg. As a reluctant pill-taker, I did some research on Pred and was scared to death of the side-effects. so I made the decision on my own to just take 5, which, as I said, seemed to work well and I felt great . So good, in fact, I started that taper in November. In the doc's defense, she did refer to me a rheumatologist, but again, after researching my choices and finding very negative reviews, I decided that my general docs and I could manage the situation. I'm seeing a different doctor now (just because of scheduling issues) and he seems somewhat knowledgeable and I do appreciate that he listens to me and hasn't been like a lot of docs I've read about in this forum who seem to be totally clueless and, frankly, reckless. I'm going to see him next week so I can discuss my experience with him. Thank you for your reply.

[PMRpro Ambassador]

Try adding 5mg - i.e. go up to 10mg for 10-14 days and see if that clears out the accumulated inflammation that is causing the pain. Then you can drop straight back to the 5mg dose. And frankly - I'd stay there for now. Your body has sent a clear message the PMR is still active.

It is less when your body is ready to START a taper but when to STOP one - and you got the signal! You were exceedingly lucky that 5mg worked - the guidelines say not to use less than 7.5mg as a starting dose. You have no leeway if your next dose in the taper is not quite enough. As it is, you have to consider you have done a taper already and be grateful such a low dose worked for you.

[christi48 in reply to PMRpro]

I am very, very grateful and I appreciate your feedback.