After a bad week and Friday being really discouraging, I got ahold of my dr and asked if I could go up to 20mg from my starting dose of 15...his office called right away and said I could..so a big difference..the first few days on 15 were great, after that I seemed to level off and it wasn't so great anymore..people on this forum pointed out it probably was t enough..glad I listened..still a bit worried about GCA but the only symptoms I seem to have would be developing a hoarseness of voice...no big deal so far...I split my dose 5 at night usually around 2 when I wake to go bathroom, the rest in the morning when he wants me to take them..I told him morning stiffness was present and this helps so that's what I'm doing!! Seeing him next week..this forum is great for venting and support...now if can only listen and not do too much on my good days..it's hard! And I'm not a mapper but I have been taking a few...
PMR update on the 20 mg dose.: After a bad week and... - PMRGCAuk
PMR update on the 20 mg dose.
Hi daworm
I started on 15mg 3 years ago, after 3 months of testing as I got worse, lasted for three weeks but still in pain. Dr put me straight up to 30mg, at last total relief. Stayed there for a month or so then pulled back 5mg. From there I've been coming down by 2mg. three years later and 3 relapses, but now down to 9.5mg. Just found out about a cousin who was diagnosed by his Dr within 10 days, was given 40mg, then a fairly constant reduction. 9 months later he's on 3mg, but small symptoms returning.
I've wondered if an initial quick diagnosis and a large dose helps with future time/recovery.
Can't tell as everyones different, one thing for sure, don't overdo things. Keep a record of medicines you take and notes for your Dr at the next visit. It helps to not miss anything.
Early on I found I needed a top up in the evening, as the tabs seem to run out at 11.00pm back to muscle pains. This has worked for me over time, but I now rise early 5.00am and take my tabs then. Seems to help.
Lastly the note that "It's not a race", 2 years is not always the norm, the main thing is keeping PMR at bay and the feeling that relaxing and taking it easy is not wrong.
All the best.
David F.
Hi David,
Two years is very far from the norm - do wish the docs would take that on board! It gives patients false expectations.
I agree with your thoughts on your the initial high dose, and future recovery, pity I didn't get the early diagnosis!
Hi DorsetLady
At our local support meeting I met a gentleman who when I asked how long with PMR? his reply shook me = 18 years. Put my three years into perspective. But I live in hope and keep trying all the DSNS methods. Currently working with some software, designed by a university student. Has at least 15 different methods of reduction I can chose from. I have all my doses since day one now imputed, can produce lists & graphs and can see how I've reduced over time. If the dose goes wrong I can input a new regime and it will update for the next few months and I can print of the daily dose required. Great support system, just need to be a bit software savvy.
I devised a much simpler version, but it updated doses etc automatically after inputting old and new dose once.
Not really an IT nerd, but do get bored sometimes!🤓
Hope you're keeping well - it's all relative, but you know I know how to interpret the answer.
Hi David
Can you pass on the software connection for slow reduction of prednisolon. It sounds interesting,as I have problems reducing to anything lower than 15 mg. I am not savvy with software but my daughter is.
All the best with your redutionstrategies.
Edith(toenti)
Edith (toenti)
The research was being carried out by Sandra Isitt. Write to her and see if she will add you to the software. her address is:taperproject@btinternet.com. There is a PDF and within it is a training test which makes you use the software. Best of luck.
David F.
here's what I don't understand...9 years ago when I got hit really bad the first time with something like this, could hardly move or do anything , my dr was stumped, treated with pain meds and muscle relaxers, after a month of that I asked to see a rheumy, got in, lots of blood work, he "thinks" it was my thyroid...I had never been on thyroid meds, always had lots of energy...anyway I started on that and prednisone, I can't remember what dose, and after a month I asked to get off it because I felt better...I tapered off and was back at work by spring, although lighter duty..(millwright type work)....by summer I was pretty much normal and even started lifting weights again...I don't understand how that was PMR if it resolved in 7 months or so?? maybe it was a thyroid issue...the first signs back then was a swollen knee and feeling a bit like I was coming down with flu....now it started as a left shoulder type bursitis or tendonitis and spread from there...who knows...gotta go with what they suspect I guess....still on thyroid meds, doc says my readings TSH are "good"....
It is thought there are different sorts of PMR - and I definitely think that there is an acute form which lasts just a few months, and I think it is more common in men. But there are thyroid problems that cause almost identical problems - and if that was the underlying problem the first time it WOULD improve with thyroid medication.
"I've wondered if an initial quick diagnosis and a large dose helps with future time/recovery."
There is no reason why it should - the pred has no effect on the actual disease process underlying the pain and stiffness we call PMR. However, one lady has had it twice and the first time started at 30mg and had a fairly smooth reduction journey, the second time was started on 15mg and it all lasted much longer and was more difficult. Though as she says, she was significantly older the second time round at it was different in other ways too.
I've reached 13 years and counting. It took 5 years for me to diagnose myself and find a doctor prepared to agree with me! 15mg of pred brought a miracle in under 6 hours!
Yes, agreed, David. Have biopsy proven GCA, 2012 . Tapered from 100 ngs methylprednisolone to 3 mgs per day.
With a flare, ( which I get) -- go up to 8 mgs, for 2 or 3 days, then taper back to 3.
I get up at 4:30 a.m. to take the medrol. Seems to work best that way.
Continued healing to everyone, + learning to live with this.
Hi,
If you wake around 2am anyway, you could take your full dose then, some do- helps even more with the morning's pain. But if you're happy with the way you're doing it now then stick to it - it's all about what suits YOU best!
Exactly..I'm thinking of the full dose at 2 or there abouts..I don't set an alarm..hardest thing about a middle of the night dose is eating something with the pred then trying to lay down and sleep..other than that l like not waiting half the day for it to kick in....
Some take a biscuit or such, but a spoonful of yogurt is probably enough - just something for the stomach to work on rather than the Pred!
It's worth giving it a try for a few nights, if it works -good, if it doesn't - back to the drawing board!
Unfortunately our illnesses are a bit like that! and they say you don't have any fun when you get to 60! Pah, these youngsters know nothing!
Good stuff people!
Morning,
Today is day 4 of my increase from 15 mg to 20 and it is really helping. This morning is the best I have had since I started on prednizone! I'm grateful! 
I stopped splitting dose, but still take the 20 some time around 4am...quit splitting in case I also have gca that likes a full dose, at least someone said here on this forum..
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