Posted , 8 users are following.
After nine years of PMR I have been on 5-6 mg pres & now another big flare so have doubled the dose to 10 mg but am not sure how long to stay on this dose & then do,i decrease slowly or straight back to 5mg?
Oh dear why have i forgotten after all these years??!! This condition must affect the memory too!
0 likes, 15 replies
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EileenH jane03457
Posted
It probably does cause brain fog!! Don't worry.
Is this a flare because you were trying to reduce or an increase in disease activity? If it is a flare because you were trying to reduce then you could stay at 10mg for a week or so and then drop back to say 7mg and then reduce slowly again. If it is a flare in disease activity you don't know what you need and probably would be better dropping 1mg at a time - or maybe try 8mg after a couple of weeks and see if that is still enough.
jane03457 EileenH
Posted
Thanks as always Eileen,
this is a big flare , two days on higher dose now, already improvement for the pain.
I think in the past i reduced very quickly to where i was before the flare so do i go down 1 mg a day or more?
You are a star for all the help you give to so many,
thank you.
EileenH jane03457
Posted
If this is a flare in disease activity you have to be more careful about reducing because it could well be you need a higher dose now and the old dose where the flare occurred is too low. And that means reducing slowly - and that means 1mg every couple of weeks at least, not every day. It does depend on which source you think caused the flare in symptoms,
EileenH
Posted
If you decide you can drop back to the old dose plus 1mg then you can do it from one day to another as long as you weren't at the higher dose for more than a week or so. 1mg per day isn't a taper as such.
jane03457 EileenH
Posted
Thank you so much for your support Eileen, i feel so alone with this fight after so long!
I have been on 4.5 - 6mg over many years now but this last flare is a b....!
So I went directly to 10 mg & had relief within 48 hours but another agony night last night but little pain at all during the day as usual.
it is so hard to know what is going on , how can I know what is the cause?
In the past when I have had a flare I have a few days on double & then reduce quickly but I dont want to make things worse!!
I hate to bother you again but I so value your sound advise Eileen, thank you
EileenH jane03457
Posted
Tell me more about your night time pain? When? Where? Does it go after getting up and moving around?
jane03457 EileenH
Posted
The pain is extremely painful in my right shoulder & my neck & also my left shoulder but that one is not so severe.
Ever since I was diagnosed with PMR nine years ago the pain has always been within the shoulders .
About nine months ago my neck became very painful & I tried to get some relief from Osteopathy but sadly that didnt help & he was unsure if the problem was PMR or wear & tear to a woman of my age!! (70)
During the day the pain wears off & I usually just have a dull ache or sometimes no shoulder pain at all.
I find any repetative movements such as ironing, painting, hoovering can irritate the pain.
I am dreading going to bed now & so unsure what to do!
THANKS so much Eileen
EileenH jane03457
Posted
What time at night do you have pain? Do you have any when you go to bed?
jane03457 EileenH
Posted
No Eileen, when I go to bed i just have aching shoulder & neck & usually fall asleep ok but then I am awoken by the pain, perhaps when i attempt to turn over .
I have never really noted the time that I get the pain but think it often midnight onward .
I have had many periods in the past when i have had no pain at all even on the 5 MG.
It is all such a mystery & I hate to,complain but find it so hard to function on poor sleep.
Thank you Eileen .
EileenH jane03457
Posted
It may be worth keeping a diary about the times if you can and ask your rheumy if there is any possibility you may have ankylosing spondylitis rather than PMR. It is typical for that to cause back pain much earlier in the night than PMR does - to respond to pred at higher doses and worsen again as the dose falls. It is also typical in it improves as soon as you are out of bed and moving about. The point about differentiating is that it responds better to other drugs - and it can start just like PMR, even mimic GCA symptoms! There have been a few patients on the forums where this has turned out to be the case.
jane03457 EileenH
Posted
Thank you so much for your help Eileen, that is a good idea to keep a diary.
Anything is a possibility, i do not experience much back pain really though.
In all these years of PMR? I have only ever seen one Rheumy who was so unhelpful & suggested that I go onto Methatrexate & considering that I have primary immune deficiency would be completely wrong!
I have decided to bite the bullet to see a highly recommended Rheumy privately for an opinion. I just need to know what is going on with my body after so many years!
EileenH jane03457
Posted
I've heard a few similar stories the last few days: a patient with fatty liver was being pressured to go on mtx! Sometimes...
Where are you?
jane03457 EileenH
Posted
Do you mean where do i live?
EileenH jane03457
Posted
Yes - not the address, the area. Just wondered if someone can recommend a really good rheumy in the PMR/GCA field. Even good rheumies don't always "do" everything well.
jane03457 EileenH
Posted
I live near to Reading but often go to Oxford for medical appointments.
I am going to see Dr Chan in Reading soon.
still on double dose, but much night last night!