Hi all,
I''m in the process of tapering my prednisiline dose and have reduced over the last few months from 30mg down to 13.5mg and have found that at each drop it takes about three or four days for my body to notice the reduction and react with muscle pain, sweating, tiredness and generally feeling unwell but if I persevere after a week or two I improve until by week three to four I feel good and am ready to take the next drop. Two weeks ago I droppedfrom 13.5mg to 11mg and although this time it took longer for the withdrawal symptoms to kick in they are much worse and don't seem to be improving so far. Has anyone any thoughts or experience of this and any suggestions on whether it is better to perservere in order to get to a lower dose as soon as possible or whether increasing the dose by say 1mg for a while to alleviate the symptoms?
Betty
Hello Betty
From my experience when on the higher doses (I started at 40mgs) that you are coming down from at present, it did take a few days of feeling uncomfortable before my body adapted to the new dose.
However, it seems to be even more difficult when decreasing at the lower doses, for instance a few months ago when trying to reduce from 4mgs to 3mgs I put up with the gradually worsening pain for a month and finally had to give in when walking became very difficult and increase back up. I tried increasing back up by 1mg which gave me no relief so I further increased to 5mgs at which I felt comfortable again.
So, it appears that in my case, the longer I put up with the pain, the higher I then have to increase the dose in order to control it.
ESR and CRP blood tests at the time confirmed that my inflammatory markers were raised, definitely necessitating the need for increasing the dose. Therefore, perhaps it would be as well for you to ask your GP for blood tests at this stage and if your inflammation levels are raised, then you can increase back up now rather than risk having to increase even higher by letting the situation worsen.
We all hate taking these steroids and want to get off them as soon as possible but we have to remember that they are giving us some quality of lifes, so go by the blood test results and I do so hope you improve again soon.
Good luck.
MrsO
Agree with Mrs. O - don't wait beyond what's comfortable when you are reducing. I've found before it's sometimes a case of two steps forward and one back.
I did see a withdrawal phase through earlier in the year, but it wasn't easy to say the least of it. I'm now reducing again very slowly from 5mg daily to get to 4.5 daily if possible. Seems to be OK at the moment, but I've now got so much going on that I'm not sure if I will be able to sustain it. If I can, I should reach the 4.5 at the end of next week.
Good luck,
Nefret
Thanks both for the advice. It would seem that it has to be a slow process and I must take it easy but persevere with a slow rate of drop. I hadn't thought to have further blood tests because the next rheumy appointment is not until November when I reckon he would like to see me down to about 5mg and last time I saw him I was on a high dose and he thought it not worth doing bloods at the time. Perhaps I'll have a chat with my very good GP and see what he thinks.
Thanks again - what would I do without this site!
Betty
Cheers Everybody, This is where this site is so helpful in swapping experiences! I still feel a \"new girl\" only having suffered 6 mths. tho' probably a bit more before that undiagnosed. I have noticed as I have come down it has got harder and the withdrawal period longer but as was pointed out to me the %drop increases each time! A friend of mine has been stuck on 1 mg for ages. Her Dr. actually doesn't seem bothered at all as apparently the side effects of Pred. are virtually non-existent by then!
What I did gather early on from this site is the value of breaking tablets in half, even the little 1 mg. ones and spreading out the drop. e.g. 10 mg for 3 days, 9mg. for 1 day, then gradually cutting down to alternate days until you aim for the 9 mg everyday. Or you could try 9 1/2 mg. every third day or something similar. I'm not sure I've explained that very clearly! But one certainly needs to keep notes of how one is doing! Plus , of course, the totally unexplained day when one just feels awful anyway........
Keep going everybody! Pam
Hi there I agree with the blood test advice I have been on monthly blood test since this bout of PMR (my second ) started in Sep I started on steroids in October This time I have gone 2 mths as I have felt OK now on 5mg and due a review next week I have always felt a bit achy and tired for a few days after a reduction but my Dr has said not to give it too long before increasing if it persists as if I do I may then need to go higher than before I have also started carrying some 1mg with me in case and trying to rest the first few days of a reduction ( I know this isnt possible for everyone !! ) My Dr did say plan your reductions to suit your life style ie when I was going abroad on holiday she said to leave it until I came back I think we have to look at it as a marathon not a sprint !! Best wishes everyone