i have called rheumy, she instructed me to drop from 30 to 25( had been at 30 3 days) 3and then take 25 for 3 days, then drop to 20, was doing ok on 20 until 9th day came, which seems long time to have side affects and symptons return, that was 17 days ago, still having pain back, shoulders, buttocks etc, she advised stay at 20 , see how i felt after this wkend, i don,t want to increase, and neither does she, but what the heck happened ?
As we've already discussed on the other post - you probably did too much!!!!!
well ok, hard to believe such a small amount of activity could so this, but i am hearing that from lots of people on this forum,thanks again
In my opinion, the reductions were too fast, by far. I'll be interested in what others say here, and meantime, best wishes and sympathy for your pain--
Barbara
thanks Barbara
I was on 30mg for 6 weeks! Tried to drop to 25 and couldn't but after 6 weeks I dropped ok. Patience is the name of the game here to survive. From 15mg I can only drop half a month to avoid pain and feel rotten for the first week as the body adjusts.
yes ive heard that from many people, but my point was, i had already dropped from 25 to 20 and managed for 9 days, before i had this setback, but ive been told if i was too active day before, could have caused this flare, i guess i,m looking to hear from someone, who also suffered side affect after that time frame, ie 9 days , i thought if you were going to have side affect from dropping too low, would happen within a day, at very most 2 days ?
Not necessarily. There can be a delay, depending on so many things including your activity, any stress in your life, maybe even falling off the wagon with your diet. By the same token you may find that being quite strict about limiting your activity and treating yourself kindly you may recover quickly without having to increase the pred. I think you should try to ride it out if you can. The whole thing is, you have to get your dose down so that the rheumatologist can confirm the diagnosis, right? The sooner that can be done the better for you.
People probably don't want to hear me say it again, but I will. Namely, never reduce pred by more than 1 mg. per MONTH. Period. And as you get down to something like 4 or 5 mg., start the slow-slow-almost-dead method.
Cheryl, I'm glad that you managed for nine days before you had a setback, but I wouldn't worry about that any more. When I was reducing pred, before I found the necessity of S L O W, I routinely suffered side effects three or four days after the reduction, even up to a week..
Everyone is different, of course, and you will gradually learn how best to deal with PMR in your own case. Maybe it's time to stop questioning about the ifs, ands and buts and 9 days, and start paying exceedingly close attention to what your body does. As Diana (above) noted, "I can only drop half a momth to avoid pain and feel rotten for the first week as the body adjusts." Plainly, she knows just what is possible in her case, for her body.
And once again, you can see how slow, slow reduction is the answer. There can be no rush in dealing with PMR, and your patience will be rewarded generously.
Regardless, every good wish for few or no setbacks as you learn to slow down, and a very happy Thanksgiving--
Barbara
I maybe shouldn't be speaking for Cheryl, but she's in the unfortunate position of having been started on too high a dose by her GP and now the rheumatologist needs her to get the dose down relatively quickly so that the diagnosis can be properly confirmed. Cheryl really doesn't have the time at this point, very early on in the treatment, to spend as much time as would someone with, say GCA, who had been correctly diagnosed and put on a high dose. It's going to be difficult, but she can't take two years to do this. It's got to be bite the bullet and get to the level the specialist asks for so that the diagnosis can be confirmed - or not, if it turns out to be something else.
Cheryl, I really do appreciate how hard this reduction is going for you. I wish we could get together over a tea or coffee and just commiserate. But this too shall pass and hopefully soon you will have your diagnosis confirmed (or corrected) and be painfree with correct treatment.
I see that I didn't have the appropriate background information to reply sensibly--thanks for providing it. Thank you, and Cheryl, I'm sorry I replied without sufficient information.
Happy Thanksgiving, everybody--
Barbara
Happy Thanksgivng to you. We had ours last month, but it's not as big a holiday as in the US. I feel the US holiday is bigger than any other there, except maybe July 4th?
Well I originally dropped to 13mg too fast and after 9 days at that level I suddenly had such a flare in my spine I thought I was dying. I quickly upped to 15mg and the pain subided after 2 hours. That's when I started to drop by just a half a month. But we all have to find a level that suits us.
I am not sure why you were on 30 mg for PMR. Most people get relief at 15 mg, but not always! I needed 25 mg to control the excruciating pain.
After only 3 days at 30 mg, you should be able to drop the dose quite quickly. Perhaps, as in my case, your autoimmune activity requires a somewhat higher dose than "average" until the inflammation clears.
When reducing prednisone I often had a delayed reaction, going several days with no change in symptoms, then having pain return. In a few days, the pain either got worse (and I returned to the last dose) or got better (and I stayed at the new lower dose). Watch the trend.
If the pain has returned, that means the inflammation is not being controlled at 20 mg. No one wants to increase the dose of prednisone, but that may be what you have to do to treat YOUR condition. You may need 22.5 mg or even 25 mg for a while
PMR varies tremendously and adjusting the prednisone dose is a very individual thing, not the cookbook instructions many doctors follow.
thank you Anhaga, appreciate your empathy, turns out, something else is going on, had few urine tests done along with bloodwork over last few weeks, 2 tests showed blood in urine, they had to do one more cytology test for urologist was referred to, saw him today, going tues next week to hospital for cystocopy, of course if not familiar, that,s to test for bladder cancer along with other possiblilities, i am on edge, stressed naturally, wondering if bladder problem triggered pmr, >? do you or anybody have info on this , would be interested to know , thanks
thank you snapperblue, good to know it can happen after many days, rheumy wants me to hold out, before adjusting, see my gp re insomnia before any adjustments to dosage, or splitting current dose, don,t want sleeping pills, but without sleep, think pain seems more intense, and just all over feeling of illness, seeing gp in next day or two
That is an additional worry for you, isn't it? I remember years ago I found a lump in my neck. It was an enlarged lymph node. It was biopsied, but naturally I was terrified. The doctor said it could be any one of a hundred things, ninety-eight of which would be of no consequence. Turned out it was non-symptomatic sarcoidosis, but it was a scary few weeks. I had two small children at the time. Hopefully your symptoms will turn out to be equally benign.
As for what triggered your pmr, no one knows what does it. It does seem like most of us can point to a specific final stressful event, whether physical or psychological, kind of the straw which broke the camel's back, and maybe your final straw is the bladder condition, on top of everything else you may have been dealing with. One evening about a year ago I started writing a post which listed every stressor I could think of from the previous few years. I got to fifteen items, which didn't include that day's fresh dose of trouble. Deleted the post and never thought of reconstructing it again. It was kind of cathartic, actually, to write it all down and then just hit delete!