In remission?
Posted , 8 users are following.
I was diagnosed October 2016. I have had the usual rollercoaster ride. I started at 10 mg went to 12 for about 3 weeks and have mostly used the slow method suggested here. Today I was going to start to taper from 3 to 2.5. I also decided to take it in the evening. I had been splitting my does. I thought I might have more pain through the day. I did not. I have some tendonitis in my right shoulder and naturally I have felt that but nothing else. I also started taking cbd oil three weeks ago. I really feel like I could stop taking the prednisone. I suppose the safe thing to do would be to continue my taper but I wanted some feedback from this very knowledgeable group. Thanks.
Linda
1 like, 8 replies
Anhaga Lindalee77
Posted
Continue your taper. I speak from experience. At 1.5 I suspected I might be approaching true remission. Attempt to taper to 1 proved otherwise! Six months later, including a week as high as 7 mg, I have finally, I think, got back on track, and I'm at 3.5, just barely, waiting to see if it's good before trying dead slow to 3. Very miffed about this, as I was lower a year ago, but that's the way it goes.
At the very least you have to be cautious that your adrenal function is up to speed so a slow taper at this level is wise, PMR or not.
Interested to hear that your new treatment may be helping.
Lindalee77 Anhaga
Posted
Do you mean the cbd oil? Who knows there are so many variables in the whole thing. Am I getting better,. Is it the oil. Am I feeling better because I retired? Who knows, I will just keep pushing ahead, slowly even though I want to go like the wind.
Anhaga Lindalee77
Posted
Yes. I hesitated to name it because it used to get moderated all the time. As you can see, I'm still nervous about naming it! It's hard sometimes to unravel what's working and what isn't. And given the idiosyncratic nature of PMR to begin with it really is a conundrum sometimes. When I was happily reducing from 2.5 to 2 to 1.5 I was also taking aloe vera. I thought this must be helping me. However when I had my recent flare taking aloe vera seemed to have no helpful effect. I expect Eileen would suggest what I was seeing was first the disease was becoming less active and then the disease became more active, and the aloe vera had nothing to do with it, just a coincidence. On the other hand I think some of the things we do must be helping us feel better even if they aren't nudging us towards true remission. So if aloe vera has a mild anti inflammatory effect, and if ginger does, and if cbd oil does, then we should take what ever works for us. If it helps keep the dose of pred lower then that can only be good. And who knows maybe taking aloe vera was the reason I didn't have to increase my dose to manage the flare by more than 5 mg, nor stay at the significantly higher dosage very long. As you say, we'll never know, because there are so many variables.
Lindalee77 Anhaga
Posted
Yes who knows what is really helping. I never thought I would have something with so many questions and so few answers. I have a disease that basically I self medicate for. I go to the doc for him to say good, keep doing what you are doing. Who knows where I would be without these forums. Don't get me wrong when I went to this rheumatologist he knew exactly what I had by just reading reports from the two other doctors I had seen. I am one grateful woman.
maid_mariane Lindalee77
Posted
Hi Linda
Interesting that you too take cbd. I've always had a bad time tappering always using the DS method and no more than 1mg could i tolerate even at 17mg. I took cbd capsules last drop from 12 to 11 no problem. I'm now dropping again but on the oil since capsules not available.
If it was me I'd just continue dropping 0.5mg and for me after i reach it i stay for at least3-4 weeks you mau consider this to allow your adtenals to catch up. Your so close don't push it.
mariane
Lindalee77 maid_mariane
Posted
I have no idea if the oil is helping or not. I really haven't had pain with this last taper. I did retire in December too so maybe it's that. Even though I don't want to I will take it slow. The advice of people who have been there done that holds a lot of weight with me.
EileenH Lindalee77
Posted
You still need to reduce that last few mg slowly - if you just stop you will be likely to suffer some steroid withdrawal rheumatism which will feel so like PMR you'll not know if it is that or a flare. And your adrenal function won't like it either - slow reduction at this stage is as much for that as for the PMR.
Lindalee77 EileenH
Posted