hi there Friends,
just wondering if any of you chronic pmr “sufferers” have tried to take prednison on alternate days instead of on a daily basis and what your experiences are of have been.
i have pmr now for 5 years, am stable on 3.75 mg and/ but am having some of the side effects of prednison use like osteo porosis incl. Loss of height and increased blood pressure.
Pl. don t tell me to discuss this with my rheumatologist because I don t have one and, frankly, don t want one. Thank you.
I tried it on a higher dose and it didn’t work for me. But maybe someone can tell you there experience on your dose.
thank you so much and all the very best.
so many replies thank you!
My question started with “ suffering” from hoarsness when singing in this low key new choir….my low register did nt work ( no sound) unless I gave it “ some force” which the choir conductor did nt approve off!,
Thanks to all your feedback I did yet more searching to find out if it is the pmr that makes me hoarse or the prednison. ( inability to close the vocal folds).
What Inow found is yes the pmr can make us hoarse, AND one of the side effects of prednison also is a hoarse voice….
All good to know, so I will do as you all suggested: slow taper …it looks like that is the way to go….
To be continued!
I get hoarseness from my asthma inhaler(steroid). But so does my rescue inhaler.
thank you all again for your replies! A big help.
Yesterday I went to the throat nose and ear doctor because laryngitis for 2.5 months, (now resolved.)
He did nt think the prednison , more or less, contributed to MY hoarsness. Looked at the vocal cords with a scope and they were good and worked ok. So that was a relieve for me. His opinion was that the cords did nt close properly at the low register of singing because of age ( 71), and yes it is muscle tissue.
Believe it or not I am happy to accept that and work with that and hopefully improve the function of these “ muscles” as well as I can.
In the meantime I will go on tapering, like everybody else on this forum!
Breathe support is the most important factor in singing well. You must breathe from your diaphragm and exercise your head voice and carry it down to where your chest voice falls into place naturally. My first voice teacher was in her 80’s and could still hit high C. You can do this!
i realise i am getting a bit of the original track.. and I do appreciate yr advise re singing a lot. I have concentrated on head voice/ high notes and completely ignored the lower register. Of course…use or loose it!! I am now including this lower part / register and use head voice ad try to “ carry it down to where my chest voice falls into place naturally”
I could nt express it more clearly. So thanks again and success with the back issues next week.
Doesn't seem to be very popular and I think the 'day off' may lead to PMR symptoms..
I believe it is considered by some doctors to be worth trying to nudge the adrenals back into working.
Are you taking medication for blood pressure, it usually does get better as you reduce the Pred.
My suggestion would be a very slow taper and small steps [which as you are on 3.75 i guess you are already doing] to try and reduce overall dose rather than a day on/day off regime.
It may work, hopefully if it has for others you will find out.
thanks so much. I so appreciate the feed back of people in the same boat…..
I probably will go for the slow tape ( again! ) and see if I “succeed” with that this time!
I got a feel that my body will start to be ok with a bit less prednison….
My doc suggested ( knowing I wanted to reduce my dosage) that I take 3 mg of prednisone /4 mg on alternate days Did not work at all ! major setback in symptoms every day. so I’m back to 4 mg now and symptoms are gone I will try reducing next time
..and down to 3.5mg using a slower tapering plan rather than alternate days 😊
Thank you. 4 to 3.75 to 3.5 to 3.25 to 3 etc With a month on each?
Sounds a good plan -but as we always say just make sure everything okay on current dose (whatever that is) before you drop down-
good luck
tHANK YOU!
In the literature (sorry, not link to hand) they say it doesn't work well for PMR and is definitely not recommended for GCA. It shouldn't be used until the daily dose is below 10mg. Logic does suggest that it won't be suitable for a lot of patients since some already find symptoms returning before the next daily dose is due and find splitting the dose is better for them,
I used it in the early days of PMR and it was successful in that double the dose on alternate days did manage the symptoms well. I didn't experience much in the way of adverse effects - but I haven't with daily dosing since. However, I had some possible GCA symptoms and the local rheumy here at the time said in that case I needed daily doses to maintain the anti-inflammatory effect and I have never gone back. I have rarely been below 10mg anyway,
thank you for that comment….so far very slowly decreasing the dose seems by far the best option…
For me the idea of alternate days was also a consideration because “ i am pretty sure” the intermittent hoarseness of my voice ( not so great for a singer) could be caused by the prolonged prednison use and I thought one day on one day off might be an option to see if that makes a difference to the voice…
My hoarseness is due to PMR - it existed before I was put on pred
My hoarseness also began during the 6 months of increasing PMR symptoms before pred.
and yes, that is interesting too…and do you still suffer from hoarseness now you DO take prednison??
Very occasionally but far less often.
by the sound of it the prednison might have helped you in that respect….
I think so
It is specifically stated in one of those excellent articles on the internet that alternate day dosing is not recommended for PMR. We need the dose of cortisol every day. I suppose once you get to the final taper (like one half mg with zero as the "new dose") you are doing something similar, but that stage assumes one is going to be okay with no pred at all.
emedicine.medscape.com/arti...
"In contrast to other rheumatic diseases, alternate-day administration of corticosteroids in PMR has largely been unsuccessful."
Probably not a good idea until you get down to say 1mg and are trying to get off pred. I know for some illnesses it is suggested but I don’t think PMR is one of them.
thanks for your comment.
I would never be able to do that. By the time the afternoon approaches, if I forget to take mine, I am achy all over and I would never sleep with that kind of pain. I am on 1.5mg now and that still makes a huge difference in my functioning.
Yes I did till I got to lower levels.No problems.
A comment about your hoarseness. Have you ever had private lessons for singing? Maybe there are ways to improve your singing voice with proper instruction.
Last year I sang in the Messiah. We sang the first half in the fall which helped me to build my voice up after back surgery. In the spring we did the last section and I was given a solo and loved it. I was on 12 mg of prednisone at the time.
Private message me if you would like to hear some suggestions from a retired voice teacher, me.
yes, I have had private lessons and it was my teacher who suggested back then I should really see a throat, ear and nose specialist….about two yrs ago….
Back then i lived in New Zealand and a consult with “ tthe specialist” would be private and cost me more than I would want to spend. So I canned that idea and stopped singing, yes, sad and frustrated. Then i got cancer, now “ cured”, then we emigrated so i kept on canning it…..
Then we moved to the Netherlands Nd this pm at 3.00 I am seeing a specialist in the hospital, basically because I had laryngitis for about 8 weeks, mainly resolved and I soooo want to sing….
My teacher back then said , and that is what I feel , the vocal folds are unable to close .
And yes it all works beauty high up now head voice rings to top B when the folds are stretched out, like a rubber band. But go lower it becomes like well windy blubber.
I very much like to write to you about it, because as a teacher AND PMR person you most probably do have ideas about it that make sense and are realistic.
Thanks so much for yr reply.
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