someone asked me a question on this forum, but I lost the thread!
I have had PMR For 3-1/2 years...15m first week, then 10...many flares before using DSNS method of tapering. Was at 8m 7 weeks ago(coming off of a flare) when I had first infusion of Actemra. I am now on 6m...have never been able to get below 7-1/2 without a major flare. So far no side effects...feel really good. I am one week away from getting third infusion, so maybe I am looking forward to it...?...some fatigue, but nothing like before. I am waiting to e
Kathy 67492, that sounds interesting, my flare occurred at 7 mg and it was bad had to go to 30 mg for relief. Now at 22.5, reducing slowly, but PMR pain free! 🙂
Hi Kathy - that was me who asked the question because my rheumy is suggesting I go on Actemra. Very nervous to try but anxious to get off the Prednisone. Thanks for sharing.
I don't have any answers for you but I just want you to know I have been unable to get below 11 mg myself. I have tried numerous ways on numerous occasions. I am back up to 15 mg right now because of some illnesses I had in May for which I was hospitalized for. But once again my rheumatologist gave me the go to start tapering again. As Aileen suggested 11 mg maybe where I'm going to have to stay for a while. You might be in that position as well.
Good luck on things I hope everything works out for you.
EileenH, when you say you were stuck on 10 mg, were you in PMR pain at 10, but not on 11 mg? Or when you went to 9 mg? I am doing good reducing to 20 mg on Monday. After that will try the DSNS 3-1 to tapered down to 10 mg. Still PMR pain free, did 3.5 miles this morning swinging 5 lb weights. Felt like I could have done more, but had other things to do. Will finish this evening, still shooting for that 15,000 step a day. Did not make it yesterday, bad weather!
When I went down below about 9mg I had symptoms. But that was in the relatively early days and I might have got lower knowing what I know now! Or maybe not
You really cannot ttell in advance - PMR has its own rules and you cannot second guess it. At present you are way above the sort of dose most people need to manage PMR. If I was on 20mg I'd probably manage to swing weights!!!
Like Eileen, I had return of pain at 9 mg. But I benefited from her experience and have used DSNS in the ensuing two years to get down to at least 1.5. I have to say that getting to 1 is more difficult than the last two tapers (from 2.5) so I think my doctor is going to be disappointed in me but actually I feel I've done very well. And no I can't swing weights. I've managed to pick up a rotator cuff injury so in the process of healing that! Sigh.
Anhaga, I am pushing myself because I lost so much with the flare, extra weight while walking, puts more stress on my bones and works my upper body as well. I been doing it since I read a book by a Canadian Doctor, leonard schwartz, while working I would walk on my lunch hour. How are you doing? Think DULSE had mine this morning. Won't that be a KICK, if it is the key! Smiling 🙂🙂!!!!
EileenH, really taking my time tapering and will continue to do so. Exercise, I added the distance a little bit at a time, I remember very well only being able to walk one lap of 1/6 of mile and having to rest before the 2 nd lap. Then when I added the weights, started with 2 lbs now up to 5. I add weight in the middle of my 2 week taper, so I am trying to be cautious.
Trying to be ready for the ski season and trying not to over do it. As always thanks for your help and wisdom. Are you going to hit the slopes this year?
I also have had my share of flares. "Stress" is a real culprit and we all have our own idea of what causes our stress..then add the physical exertion and fatigue and it is a real balancing act. Eileen cannot say it enough...rest, no rush to zero!
kathy67492, Predinisone has been like a miracle drug for me. The side effects are tough, but worth it. I am a diabetic and the the Pred raise hell with me, but at one point I could not move. It appears that Actemra, is not for diabetics, from what I read on website.
Kathy67492, I have been an active person, ride my bicycle 3000-4000 miles a year here in the mountains of New Mexico. Ski all winter long. I am not going to not push to get back in shape, as soon as I have any PMR pain I will back off. So far since being on the 30 mg which I had to stay on for about 6 weeks I have been PMR pain free. I do not know how much this diet is helping, but it does not appear to be hurting any. Pushing forward with a smile on my face! 🙂
I haven't skied for 4 years - partly due to PMR but a lot of other factors as well. I had 2 years enforced non-skiing - the end of one winter and most of the next I was on crutches! The effort to get fit enough to be truly safe on the slopes doesn't really feel worth it - there are far too many tourists here most of the winter now and the enjoyment has gone.
I used to ski in the morning when no-one was out there - now it is busy from 8.30am! Which if they behaved and could ski would be fine - but they have no manners and IMHO are dangerous. I blame the invention of carver skis myself You need eyes in the back of your head to avoid being wiped out by some idiot skiing beyond their ability. Most of my friends here have stopped too.
Global warming has changed the whole face of the season - no natural snow until after New Year which limits the area and thin cover which means more skill is required (see above). That makes it even more crowded and because we have a reputation for good weather and ideal for beginners more and more people come here. Good for the tourist business but not always nice for the locals. And the PRICES!!!!!
Oh EileenH that is a shame, we have a number of tourist also, in fact it is the tourist that keep our mountain open. Most are on our blue and green runs which leaves the black for us. It must be hard to see the mountains and not be able to take a few runs. Most of the ski areas in NM, either allow free or reduced rates over 70, so I have skied mostly free since coming here 8 years ago. Gobal warming and fires have hit this area hard. I do not understand how people can not see what is happening to our world.
My sister and her family live in the French Alps and my sister has stopped skiing for the same reasons you mentioned. She said it's just not worth it now, and the enjoyment is no longer there, but her French husband and one of their daughters still persevere, and like you, try and hit the slopes early in the mornings, although the tourists have got wind of that idea too!