PMR, Prednisone, Tapering Knowledge
Posted , 12 users are following.
so, after 3 years of PMR, and some good and bad tapering experience getting down to 7-1/2m from 15-10m, it has been mostly a bad idea to taper at all, pain fatigue-wise...so why not just stay at 9-10m? Seems so many people have tapered all the way down to 3 or 1 and then flare and have to go back to 10...so, with all the ups and downs over 3-10+ years, why mess with it. I am not hearing any major pitfalls from the prednisone, with a few exceptions. I know the doctors don't like us to take it at all, but we must.
If 7m is the "normal" production of our adrenals...increasing under stress to 9-10....is taking 9-10m all the time so bad? If you have PMR you are stressed all the time!
0 likes, 21 replies
sharon35553 kathy67492
Posted
Hi Kathy, boy you are so right in thinking this because I do too. I mean if it is shownthat it takes anywhere from a year or two to get through this why not stay where we are comfortable, why are these Dr.'s so quick to taper and get us off the pred. Stress is in most of our lives in one form or another and why add more by consistantly tapering us or at least if we try to taper let us go back to where we we ok. Every Dr. I have seen, and Ive seen 3 different Rheumatologists were all anti pred, I mean totally anti pred. Im finally doing what I feel works for me. I'm at 12.5 and alternate every other day back to the 10mil and will stay here for a while.
Goiod luck!
Sharon
kathy67492 sharon35553
Posted
So nice to hear that someone is befuddled like me😊 I knew before finishing your response that Eileen would know the logic of this tapering business!...read on
EileenH sharon35553
Posted
I just don't get it - if someone diagnoses PMR then they have to either use pred (it is the only option) or tell the patient they have to put up with it. Which I really don't think is what doctors are supposed to do!
EileenH kathy67492
Posted
Because while YOU may not have had much in the way of side effects, many people do. Some of the side effects of prednisolone are cumulative - related to the total dose you have taken from the start of treatment. Examples are osteoporosis and probably diabetes. Some people develop raised eye pressures - which can also cause blindness if left or not found. If you permanently take about 10mg your adrenal glands go into hibernation - and being exposed to severe stress can sometimes lead to an adrenal crisis when the body needs more corticosteroid than is available and the adrenal glands can't respond with a emergency delivery. Normal functioning glands provide a shot as required, a few times a day - that doesn't happen when you are on pred at that level.
Most people gain weight when on pred - which adds to other potential risks such as diabetes. Long term pred can also cause skin problems, making it very thin and easy to tear, and it often doesn't heal well.
By tapering carefully and slowly you generally achieve the lowest dose that manages the symptoms without ever having a flare - that is the reason we make such a song and dance about reducing SLOWLY! Then you don't have returning pain, the fatigue isn't affected by the pred, it has no effect on the underlying autoimmune disorder that is the source of the fatigue, pred only manages the inflammation and the symptoms due to that. By being at the lowest dose - and not below - your symptoms are managed as well as they can be and you are also on the least pred you can manage with. If that is 5mg it will take twice as long to get to a given "total dose".
Using the way we advocate, you get to just under that "lowest dose", get a few niggles and go straight back to the previous dose. Maybe if you wait a couple of months you can reduce a bit further, perhaps not. But if you don't try you will never know if your PMR has gone into remission - which would mean you could stop pred altogether. Always a good thing. But there is no way of knowing or predicting who will take 2 years and who will take 6 years. Or even more.
A good doctor will let you go back to the dose that works if you overshoot the mark - but many don't actually realise how PMR works. Many believe it is like all the other things they use pred for, a course clears out the inflammation and then you taper the dose to allow the patient get off pred. But the longer you have been on pred - the harder that will be, whether the PMR is still acitive or not.
kathy67492 EileenH
Posted
It would be so helpful if the rheumys knew all of this....although I do like my rheumatologist a lot, but wonder if he understands it the way you explain it Eileen! Thank you once again😊
rachel24455 EileenH
Posted
Thank you for this - the pain is tolerable on 10mg after nearly three months, but it's the fatigue I can not bear! Does the pred have no impact on the fatigue at all? If not, then I can risk tapering by 10% next week, but I can't risk being any more exhausted...
dan38655 rachel24455
Posted
Different patients experience different responses to both pmr and to the dosage of prednisone that they take.
In my case, when I reduced my pred dosage to the level where my symptoms were mostly but not completely managed, I experienced fatigue that a 1mg-higher dosage seemed to eliminate.
I should mention that this was when my dosage was around 5-6mg per day. Currently I take only 2mg/day and have no fatigue problem at all.
The biggest factors in terms of what level of pred dosage reduction that I found tolerable were 1) any abrupt onset of bursitis in my hip or shoulder, 2) ear-ache or head-ache while sleeping, and 3) severe fatigue.
As for the rest of my recovery story, I find that as I continue to reduce, that twice-daily exercise (morning and night) is effective at preventing the flare-ups that I experienced in years past. Very light "jogging" kept my hips on the road to recovery, and light resistance work (such as tugging on a pull-up bar) was helpful for reducing my upper-body discomforts. Mornings, I go out for a bike ride. Daily is best, since these light efforts do not require the sort of "recovery" associated with athletic training. Each patient needs to experiment and be very creative in terms of determining what sort of exercise is best for them and is most tolerable day-to-day. For example, I have worked myself up to light "push-ups" done while on my feet, pushing away from the edge of the kitchen counter, using sponges to cushion my hands. I also do shallow squats while tugging on an overhead bar, but by now that is just the warm-up since after a year of this I can pull myself upward fully off the ground. Again, I do these things every day now that my fatigue has gone, and no more flares, thankfully.
EileenH rachel24455
Posted
The fatigue has to be managed by pacing. At higher doses of pred you may get the Duracell Bunny manic-ness which cancels out the fatigue - but it isn't "real".
This is our "reading list" at the end of the post is a link to stuff about pacing. The second one is particularly good and just because it was written for ME patients doesn't mean it doesn't apply to us.
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
eddylynn36538 EileenH
Posted
Eileen you asked me to keep you updated and this seems like a good place. A little info. Been on pred 10 years. I was on 10mg for close to a year. Dropped to 5 for about 6 months with no problems. I had not seen a rheumy ever and my doc sort of let me manage on my own. So eventually I quit cold turkey. I had not found this wonderful site yet. Needless to say I had a good flare, sent to a good rheumy and started back on 20 mg with reduction of 2.5 one day a week increasing to 2 days etc. Getting to 17.5 in 7 weeks.
This all went well until I cut my leg bad turning into compartment syndrome. Required 3 surgeries with my surgeon telling me I had to quit pred immediately or I wouldn't heal and could lose my leg. I was on 8 mg at the time and went to 0 in 5 days. The first 2 weeks were surprisingly good then the sh-- hit the fan. Every bit as bad as prior to diagnosis. This was over Xmas with 12 family members home. Needless to say they took care of everything. Good news is I was sent to a plastic surgeon but he watched it for a month and no more surgery needed. Healed enough in a month I could go back on pred. Started back on 10 but had to go to 13 for full relief. Will gradually get down. Rheumy wants me to reduce by 1 mg a month once I hit 10.
So yes I think it is a good idea to keep on reducing slowly as in my case my skin is so compromised. Sorry for long post.
EileenH eddylynn36538
Posted
Good to hear you've healed! After being on pred that long I htink that surgeon really was pushing his luck taking you from 8mg to zero so fast - but you seem to have survived pretty well!
The rheumy may want you to reduce 1mg/month once you hit 10 - but the crux of the matter is does your body want to and the absolute bottom line is the amount of pred it takes to manage the PMR!
Good luck!
joey_12298 EileenH
Posted
Since we are discussing the reduction of Prednisone here & it's difficulties....I was in to see the Rhumie this past Friday. Actually saw his Nurse Practioner who seemed more knowledgable about PMR than the doctor. She suggested I try to take the coated time release Prednisone which would be taken at night around 10pm. I thought it was a good idea except I am at the point of 8.25mg reducing to 8mg. I have been proceeding very slowly with my reduction because I am very sensitive to the Prednisone withdrawal pain. Everything is going well but since I am at the cusp (is it 7 or 8mg?) where the Adrenals are being tricked into again producing the required amount of my own Cortisol - I am leery. Can I or should I make this transition to the coated Prednisone at this time?
EileenH joey_12298
Posted
The biggest problem for you will be the fact that you cannot cut the tablets so you MUST work on 1mg reductions. If you are doing well with the ordinary sort I don't think I would rock the boat - even though I think Rayos/Lodotra is great. Even using the Dead Slow approach you have to have a day of old dose and a day of new dose that is a whole mg different, which isn't too bad at higher doses but as you get lower it becomes more of a problem,
ptolemy joey_12298
Posted
EileenH ptolemy
Posted
Except Rayos/Lodotra are meant to remain in the stomach for 4 hours - that's why they are to be taken within 3 hours of a meal or with a proper snack with carbs, protein and fat.
ptolemy EileenH
Posted
EileenH ptolemy
Posted
joey_12298 ptolemy
Posted
ptolemy joey_12298
Posted
EileenH joey_12298
Posted
If you have gastric problems then in the UK the enteric coated/gastro-resistant version would be ideal, they pass right through the stomach.
However - if you are in the USA they are not available but it is possible to manage PMR and GCA using methylprednisolone injections. It is now included in the guidelines. You will find a link to the 2015 guideliens for the management of PMR in this post:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
and it might be worth showing them to your doctor.