Symptoms of PMR getting worse
Posted , 10 users are following.
I am 50 and new to the group. I was diagnosed two months ago and have been on 20 mg of prednisone. The stiffness in the neck and shoulder are rearing the ugly head again. With the newest of pain recurring in the low back. All this just when my doctor told me to go to 15 mg today. So wondering if anyone has experienced the worsening of symptoms after the initial dosing of prednisone? Anyone having to go up and down on predinisone?
Thanks!
1 like, 10 replies
Anhaga Gwamma
Posted
I would say it's unusual for pain to recur after the pain has been properly controlled at the beginning and before any tapering has occurred. I wonder if your pain is due to PMR, or whether it's something else. You say you have back pain. Nerves in the back can be the cause of referred pain in other parts of the body. It would be good to get it sorted out, though, before any tapering takes place. Your recommended drop in dosage is very high. It is 25% of your dose, and it's recommended that it shouldn't be more than 10%. You could consider dropping by 2.5 (as long as your tablets are uncoated you can cut 5 mg tablet in half) for a couple of weeks, and then if that works all right, a further 2.5. Easier on the body and less likely to trigger pred withdrawal which is so like PMR it's nearly impossible to tell the difference.
julia35591 Gwamma
Posted
Hello
I started at 15 which didn't really work, moved up to 20 and started to feel normal. When I started to reduce however pain kicked straight back in. Especially to the neck shoulders area. The doctor had told me to go from 20 to 17 of pred. This forum has been really useful and I decided that it was too big a drop, going on the 10% rule so went back up to 18 for 2 weeks, then 17 two weeks and now 16. All is well apart from the pred side affects of course. I think the slowly approach is good. Plus my bloods are now norma as of last weekl. Fingers crossed something similar works for you.
ptolemy Gwamma
Posted
eddylynn36538 Gwamma
Posted
I am so lucky to have the rheumy I have. I see her every 3 months - 2 hrs away. But do have bloodwork every month. Just did that and she phoned today to see how I was doing. ESR 38 and crp 18. I said it was mostly good. I'm on 8 mg and planned to go to 7 this week. She asked me to stay at 8 for awhile longer and go to 9 if I felt it was necessary. If it's as manageable in 2 weeks as it is now I may go to 7.5. Also starting physical therapy for other aches and pains. Appreciate that I can make my own decisions.
dan38655 Gwamma
Posted
From my 3+ years of dealing with pmr symptoms and with adjusting my prednisone dosage as needed, I've noticed a pattern of the pmr symptoms migrating at will from one area or areas of the body to others. And, as a new area is attacked, there is a peak to the intensity of pain over the course of the time that the activity has flared.
Since each episode has an intensity peak to it, for whatever duration that it chooses peak, it makes sense to have to adjust one's dosage as needed to control those peaks.
I'm currently having what seems to be a peak of symptoms in my right shoulder and upper arm area, but at this time and at my now-higher dosage (up from 2 to 6mg), I have no other pmr symptoms at all, yet am thinking of spiking my dosage up to 8mg for two days as an experiment.
I'm hopeful that the spike will be useful, as there was enough response to my missing a day's dosage recently that I know that pmr is definitely still lurking.
Anhaga dan38655
Posted
Dan, I am sure this has worked for you, but I don't think, generally speaking, it's a good idea to keep on adjusting the dose up and down. I have been on a steady downward trajectory, with one or two blips where I went up by a single mg for a day or two, which I now, in retrospect, wonder were even necessary. In all other cases I've found increased discomfort to have been either not PMR at all, or pred withdrawal. I'm only saying this to illustrate that we are all different. I have always reduced slowly, using the dead slow method since 10 mg. It's almost exactly to the day two years since my first dose of 15 mg pred, I'm now at 1.5.
So, Gwamma, you'll ask for advice here and you'll get comments all over the map, plus the expert advice from Eileen and others. Hopefully you'll be lucky like me and find a way to get through this unpleasant illness without too many glitches, and I have to say I've been helped so much by reading about the many varied experiences on here.
dan38655 Anhaga
Posted
Anhaga, please understand that I was addressing the exact question that Gwamma posted to this group.
Nobody was asking me what somebody else's opinion was on this subject, they are better able to describe their own experiences.
So I described my own experience with it.
My own pred dosage requirement has fluctuated seasonally during every one of the last three years, necessitating dosage increases of 100% or more, for durations ranging from days to months.
My Rheumy's orders were to simply reduce dosage by 1mg/month, so when this became unbearable I finally realized that I was on my own, and that thankfully I was and am able to order my own refills of the 5mg and 1mg tablets.
Anhaga dan38655
Posted
Exactly, Dan, and I was concerned that your experience, which is unique and specific to you, might be taken by a relative newbie to be a common method of managing the disease, that's all. I gave my experience to illustrate another type of journey, one which I suspect is more typical although I may be wrong, and did emphasize that we are all different!
dan38655 Anhaga
Posted
Yes, and if I had started out knowing about the super-slow tapering methods, I might not have ever recognized that relatively big drops in dosage were possible at certain times, and perhaps subsequently would have no need for the increases that I later found necessary.
For my own reasons, so as to become more aware of other factors affecting my pmr activity level, I always sought lower dosages that stayed just within a manageable pain level. It took me a long time to recognize that I needed to increase my dosage promptly in response to localized/specific flares, the joint pain and the periodic fatige, so I payed a price for forcing my dosage down.
I guess it is a personal choice how high a level of joint discomfort and fatigue flare-up that one is willing to risk and to put up with in order to take less prednisone. Certainly many people will prefer a slower taper that better keeps one below the threshold of their symptoms flaring up.
My initial doctor's prescription for a 15 month taper got it in my head that my pmr and prednisone adventure would soon be over, so this seems to have affected my approach to "forcing" a lower dosage. My recent shoulder flare-up, which might be the fascia tissue inflamation that Eileen described, is something of an exception in terms of how high that I have had to increase my dosage relative to any very low dosage that I have periodically arrived at (I am testing 7mg/day right now).
EileenH Gwamma
Posted
Sometimes not all the pain is due to "just PMR" - the pred usually manages the "just PMR" pain pretty well but something called myofascial pain syndrome (MPS) is often found alongside PMR. It is caused by the same inflammatory substances that cause PMR when they are systemic (in the circulation rather than a specific organ) but in MPS they are in the fascia, especially in trigger spots which form in pairs on either side of the spine, in the shoulder muscles, about rib level and in the low back/buttocks. The fascia is the transparent skin you will be familiar with from joints of meat and poultry and it encases large muscle groups. In MPS it is inflamed and hardens, also causing muscle pain and sometimes irritating nearby nerves which can lead to referred pain. It doesn't have a good blood supply so oral pred doesn't do as much or work as quickly as it does for muscle pain and stiffness.
I have had it all the time I have had PMR - I had it before but PMR makes it worse. I have had steroid injections which helped a lot but currently I am having massage for myofascial release therapy. It is slow but it does work. Many people on the forums have found Bowen therapy helps too (not the PMR itself, the add-ons).
I would say what you are experiencing at present is more likely MPS - but you really shouldn't reduce with increasing pain since the other possiblity is that the autoimmune part of the illness is increasing. And reducing by 5mg at a time is asking for trouble in PMR. It is a perfectly normal reduction when pred is being used for other things but in PMR it often causes a lot of discomfort which you can't distinguish from the PMR. If your doctor is insistent on reducing the dose, ask him to allow you to do it in 2 steps of 2.5mg, 2 weeks apart. Gets you to the same place, just more gently.