Reducing Pred up & down

[PJPS]

After being on 12.5mg of Pred for one week I still don't feel as good as I did before my first flare at 9mg, I am thinking that maybe I should increase to 14mg over the next two days to see if it makes a difference? Any advice or thoughts would be welcome.

[PMRpro Ambassador]

Many doctors feel that you need plus 5mg to deal with a flare - and that would be about right. It is also common for it to be harder to control a flare than the pred result first time round. Once you get this under control be very careful reducing and go very slowly to avoid another flare. Getting into a yoyo pattern with your pred dose makes it increasingly difficult to reduce successfully.

I don't know how long you've been on pred but don't expect to be able to get below 10mg happily in less than several months.

[PJPS in reply to PMRpro]

Thank you for your reply, I've been on Pred since Dec 2015, started at 15mg for 4 weeks, 12.5mg for 4 weeks, 10mg for 4 weeks & then 9mg, that's when the flare kicked in. Dr now agrees once I get to 10mg I should stay on that for a lot longer - months not weeks.

I will try 14mg over the weekend to see how it goes.

I am so grateful to be able to use this forum, and thank you once again for taking the time to reply.

[PMRpro Ambassador in reply to PJPS]

Dec 2014 I assume? Yes - really a bit quick to try below 10mg. The paper from the Bristol rheumatology group suggests a year at 10mg and that reduces the flare rate to 1 in 5.

rcpe.ac.uk/sites/default/fi...

in case you haven't seen it, it is pretty easy to read most of it and is aimed at your GP so they shouldn't be huffed at being offered it to read if they aren't familiar with it.

[Daisyharper in reply to PJPS]

Hi Yes I had similar problems going from 10 to 9 back on 9 now and seems to be improving, Dr says stay on it about 12 weeks, we will see, good luck, everything takes time and patients with this illness I have discovered, the forum is a great help.

[Parijm]

I'm on 7mg Pred after starting on 30mg last April. However I've been in discomfort since dropping from 9 mg last Nov. Dr suggests going back to 10mg. Feel disappointed that I'm not able to continue reducing and unclear how much pain I can put up with. Should I up my dose? I can't decide.

[piglette in reply to Parijm]

I managed to drop to a low dose but was in a lot of pain and assumed that it would improve if I stuck on that dose and it didn't. The GP told me to increase 5mg which I did which meant I was much better although the pain did not improve as instantly as it did the first time I took pred. I am reducing really slowly now and stopping if I have pain, a much better idea.

[Daisyharper in reply to Parijm]

Yes, better to be pain free than Trying to reduce too early

[Celtic PMRGCAuk volunteer]

Parijim, yes your Dr has given you good advice. I can understand the disappointment as I well remember that feeling when getting as low as 3mgs and then having to increase back up to 10mg to cope with the returning inflammation. You are still within your first year of treatment and have done really well to reduce from 30 to below 9mg in that time - perhaps a little too well if you see what I mean, reducing too fast and therefore not giving the steroid dose sufficient time to keep the inflammation under control. Remember the steroids are not curing anything but are just damping down the inflammation that causes the symptoms until PMR and/or GCA decide to go into remission. You would be wise to increase that dose now before the inflammation takes more hold, in which case you would need to go even higher.

[Parijm]

I didn't understand the significance of increasing the dose by more than 1mg. Dr advice to go to 3mg increase concerned me, but posts here mention increase of 5mg. Also I'm aware that increasing dose may not kick in so quickly as I am experiencing a flare up. I'm so appreciative of feedback given to me today

[pollyg263]

I got down to 1 mg last week. but felt th pain coming back so raised it to 2 mg within 48 hours I was back to no pain. don't know how long to leave it before I start to reduce again. but I get a lot of advice on the pmr forum I am on Eileen is brill and full of good advise