Posted , 9 users are following.
Hi . Have been on 15mg pred for three weeks . Pain stiffness gone but side effects literally doing my head in . Doc suggested reducing daily dose to 10mg daily . Can I reduce so quickly since I've not been on it long . From what I've read a more gradual reduction is usual . Any ideas ?
0 likes, 11 replies
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ptolemy joan83529
Posted
Hi Joan, I am so sorry you have been diagnosed with PMR, but it is good news you now have pred to help the pain. How are your blood test results? I know a friend who reduced from 15mg to 10mg after a week, which is highly unusual. I could not even reduce by 2.5mg after three weeks. Some people can reduce much more easily than others. A rule of thumb is not to reduce more than ten per cent at a time. You could try reducing 2.5mg which is suggested by a team of doctors in Bristol and see if it works OK. Doctors always seem very keen to get us down to 10mg as quickly as possible. Don't let them push you though.
I am sorry you are getting side effects, what are they?
Has your doctor prescibed vit D and calcium to counteract steroid side effects? Also have they organised a Dexascan to check your bone density?
joan83529 ptolemy
Posted
Hi Ptolemy. It feels as I said to be doing my head in literally. It's like constant pressure over my head , not a head ache , not a pain just a heaviness that makes me feel distant . It sometimes becomes a head ache I believe because it causes me to tense the muscles in my neck tho I try consciously to relax . It's just there all the time . I've always been quite calm and relaxed but am becoming increasing agitated and short tempered. Will try to reduce dose but only by 2.5 mg for a week or two and see if it gets any better I think . Thanks for taking time to tespond
daniel08939 joan83529
Posted
Do some research on GCA and have your Doctors rule that out.
ptolemy joan83529
Posted
Good luck with the reduction, if you get any problems stop reducing. You may have a bit of a problem the first day or two, but it should sort itself out pretty quickly.
Anhaga joan83529
Posted
My experience, although I didn't have the odd side effect you're getting, was to be on 15 for five weeks (the one week trial, then four more weeks). After that I reduced by 1 mg per week and was actually fine with this. It was when I tried to go to 9 mg that I found I had to slow down. So that's not as soon nor as fast as what your doctor suggests, but certainly I found it doable, therefore I was at 10 mg within ten weeks of starting on pred., and never in the subsequent two years increased above that level (currently at 1.5).
joan83529 Anhaga
Posted
EileenH joan83529
Posted
You CAN reduce that quickly safely yes - whether it is a good idea is another thing altogether! It is a usual reduction step for short-term courses of pred, it often doesn't work in PMR though.
When I first started on pred I had 2 weeks at 15mg, 2 weeks at 10mg and 5 weeks at 5mg - I was fine the entire time. Within a few hours of missing the first 5mg tablet I was in a worse state than I had been before! I never got down to 5mg without symptoms returning again for a very long time.
You could try it and if you are OK, all well and good, if it doesn't work, go back to the 15mg and then try just a 2.5mg step down the next time.
I'm surprised to hear you have such bad side effects after just 3 weeks and at 15mg which is a relatively low dose - what problems do you have?
joan83529 EileenH
Posted
Hi Eileen. It's difficult to describe how my head feels within about an hour of taking tabs . It's like constant pressure over the top of my head , not a head ache as such but as day goes on it can become a head ache tho I suspect that's because it makes me tense and tho I consciously try to relax I'm aware that I'm clenching the muscles in the back of my neck . I presume this is the brain fog . Also feel wibbly wobbly , daft as it sounds. Not painful but horribly disconcerting and mood changing. I think I'll try a 2.5 mg reduction and see what happens . Thanks for your reply
EileenH joan83529
Posted
It may well improve after a while - many such feelings do as your body gets used to the medication. Some people take their pred before bed - and such side effects happen overnight while they are asleep - although some people find it keeps them away. Another possible solution is to split the dose, taking about 2/3 in the morning and the rest later in the day - the two low doses don't trigger the side effects so much. That isn't recommended in GCA by the way for anyone reading this post.
I did have some pretty nasty side effects at one time but never anything I considered worse than the PMR itself!!
shelley45866 joan83529
Posted
EileenH shelley45866
Posted