hi everyone have been reading posts for a while and it seems to me that everyone's journey with PMR is different. so here is my story. I was diagnosed with PMR in march 2021 by my GP I have not got below 8mg of prednisolone every time I drop to 7.5mg much more discomfort. I have aches and a little pain most days. but not enough to need pain killers. I have never seen a rheumatologist and haven't spoken to a doctor about my steroids since diagnoses. I do have fairly regular contact with my GP surgery as I am a type 2 diabetic, have Pernicious anemia, am anemic, high blood pressure under control with 3 different tablets.
I am 65 years old male and work 40 to 50 hours a week as a hairstylist. Struggle to do to much on my days off as tired and ache. Is it my PMR or just old age does anyone have any thoughts
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bluenumbertwo
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With a programme and medical history like that - I'd say ANYONE would be a bit achey, never mind a 65 year old with PMR! I salute you - but isn't it maybe time to slow down a LITTLE bit and enjoy the weekends too?
And yes you are correct, everybody’s PMR is just that- theirs.
Would say a couple of things -
Those that work do have a more difficult time that those who don’t, and as you are on your feet all day without much rest inbetween clients that makes it even harder.
At around 7.5mg/8mg your adrenals are starting to think they need to work again, so that can add in extra issues making it more difficult to reduce.
So your aches and pains could be a combination of too little Pred for what you have to do on a day to day braise and adrenals stuttering - and fatigue is most certainly the latter.
But as you also say, you do have other health issues - and obviously that makes things more complex. .. and it never gets easier as you age.
As you are just under 3 years, would say PMR is still alive and kicking… and as the issue seems to happen around the same dose, that’s telling you that 8mg is dose it requires at the moment. Won’t always be, but is for now.
Not sure that is going to change any time soon unless you can cut some of your working hours whether by shortening the number of hours per day, or the number of days per week. If that is a option for you?
Thought you might say that… so all you can do is try and catch a bit of ‘me time’ during the day… although I do appreciate that’s not as easily done as said. Bit more delegation if possible… 😊
Hi bluenumbertwo. Hair stylist at 65...respect. Mens or womens? As for aches and pains if it is PMR then drugs other than pred. won't have any effect. doing too much is probably the reason rather than your age. reducing is difficult and DL has probably got it right. I got stuck at 22.5 but leflunomide enabled me to reduce. I'm now at 6.75mg so a vast improvement. Good luck.
Hi cycli, thanks for the post. I am now finally at 17.5 mg with my fingers crossed. Thanks for the heads up on leflunomide. I will bring this up if I cannot reduce anymore. I had a very tough time getting below 22.5 and then 20 mg. It'll be a year in 3 weeks since I started Pred and was on 30 mg for 6 weeks a few months ago.
If I hadn't lost most of mine and knew where you were I'd drop in for a cut. Could you fill in your Bio with a little more info than hi. Cheers for now.
Hi Was there a Pred dose where you felt you had energy at the weekend? Eg. 9mg or whatever?
I think you’re doing incredibly well to be working those hours in a physical job with active PMR on 7.5mg. Maybe upping the dose a bit is really needed for quality of life and you should give yourself permission to do that and then restart tapering in eg 6 months.
I have found going from 8-4.5mg hard work in terms of fatigue /adrenal wise but don’t have the pressure of work so can rest a lot - if I was still working I suspect I’d be up near 10mg still.
That’s probably not helping - much better to reduce by 1mg a time rather than the way you are doing at the moment.
And although it might not sound it, there is a big difference between 10mg and 7.5mg.. a difference of 25% - recommendation is not more than 10% when dropping from current dose to new lower one.
In my opinion, the alternate days approach is more difficult…
I have read that alternate day dosing is generally not good in PMR, except maybe near the very end when approaching zero. To taper, try one of the slow taper methods developed by patients. Here (found in our FAQ collection)
Also, regarding the alternate day dosing: "In contrast to other rheumatic diseases, alternate-day administration of corticosteroids in PMR has largely been unsuccessful." emedicine.medscape.com/arti...
This may refer to one day with pred and alternate day without, but continual dose changes during a longterm chronic illness amounts to the same thing as the body has to readjust every day.
Wow, you work hard! My cousin is a hair stylist in his early seventies and has gone to 4 days a week, but they sure are long ones.
How did you taper from 8 to 7.5? In light of what you are trying to balance and the fact that adrenals are often an issue around and under 8 then I'd suggest you use a really slow taper that is often used for 5 and under. Eg reduce by no more than 0.5 at a time, or even 0.25 and take it really slow before next taper, or use one of the slow tapers like DSNS in the FAQs.
If you want to discuss your PMR with a sensible consultant, you could try Rod Hughes in Chertsey. First appointment is in person, then phone, but I think he makes exceptions and would do it all by phone.
Thoughts about the T2 - are you doing all the diet and exercise advice that comes up regularly on the forum? They really can make a huge difference to blood glucose regulation and also for high blood pressure.
On the pernicious anaemia - if you're seeing GP regularly I guess you've been tested for this. I only mention because I was put on injections supposedly for life, then when I changed doctors I asked to try tablets and B12 levels have been fine for 12 years.
Oh, I'd got mixed up and thought you were alternating 8 and 7.5 which would be fine. Yes as DL and others say 10 and 7.5 is a big decrease. And if you do such a big difference on alternate days I think it might get the body confused. I suspect you might start to feel better just by doing a gentler taper. Glad you posted.
Anything below 10mgs shouldn't decrease by more than 10 per cent of current dose. Also use dead slow and stop method to decrease...reducing by 1 mg takes 7 weeks.
me thinks that you are working too hard. The body I’m afraid with PMR is its own boss. With your other health problems it has a lot to contend with. Perhaps stay on the dosage and don’t try to reduce at the moment. Be kind to yourself, It’s not a race , your body will dictate to you and not the other way round. I’m into my 9th year and on 4 mg it’s a struggle I’m afraid.
Hope my journey is shorter. With what I've lost in 2.5yrs I dread to think of the damage a long wait will do. I need to get back to cycling even if I can't do what I did before.
Once you get below 10mg you need to reduce very slowly. Maybe 1/2 mg a week. I would stabilise by going up to 9.5 first for 4 or 5 days, then 8.5 and after that only .5 down per week. It is generally agreed that staying on 2.5 mg is fine once you get down to that.
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