When to start decreasing steroids

[Dwid]

Was diagnosed with PMR and have been taking 10 mg steroids for about two months, 5mg in a.m. and 5mg in evening . Feel good, keeping the pain at bay, able to exercise, wondering when and how much (what pace) to decrease steroids?

[PMRpro Ambassador]

SLOWLY! But if you feel well you should consider trying very small reductions - you are looking for the lowest dose that manages the symptoms as well as they are managed now. Any reduction should be not more than 10% of the current dose but below 10mg seems to pose problems to many - I'd try 1/2mg at a time on one of the doses, probably the evening one to start with.

You may find this helpful:

healthunlocked.com/pmrgcauk...

[Stkeyna in reply to PMRpro]

Good advice about reducing but I often see this quoted but without the time span - so far how long do you stay at a certain level. I have now been told to come down from 7 mgs every two weeks with a half a gram drop each time. Interesting to learn you split your does as I have always been told to take all at one go in the morning!!!

[PMRpro Ambassador in reply to Stkeyna]

Read the link I gave - explains a lot.

IMHO that is too fast - 1/2mg a month is more than enough.

[Stkeyna]

Aaagh I see. Thanks but can you explain why you can be on various levels of prednislone and feeling very poorly and your blood test are fine? My bloods have been fine for about three years but I have had very difficult times with my health.

Just joined here today and I am impressed at how much help there is on here especially by - PMRpro - so well done to you! It can be a very lonely world when living with this illness and it helps greatly that it is a fellow suffering who is offering such good advice.

I often wish - at a devilish moment - when sitting across from a consultant that I could give them a 30 seconds blast of GCA! Just 30 seconds I wouldn't be want to prolong it. I think that stems from one telling me that did I know about the benefits of paracetmal for the severe headaches I was having!!! Never found Paracetmal to help in the slightest when on an ice-pick headache but perhaps it works for some!

Keep up the good work!!

[Caro12line in reply to Stkeyna]

Hi Rupert16. Agree with your comments about PMRPro, always gives great advice with great understanding. I also have GCA and have been using the "Dead Slow" method of tapering. It is working very well in my case. My Rheumy wanted me to taper faster but it didn't work for me, caused too many withdrawal symptoms. so I just presented him with my reduction plan and told him it may take a little longer than you would like but this will work better for me. He conceded and all is good. I also agree with the paracetamol thing! In my experience nothing except Pred, (and in early days before diagnosis I was given numerous prescription painkillers) can take away the pain of GCA. Good luck.

[Stkeyna in reply to Caro12line]

Thanks and good luck to you. It's a difficult journey and the more genuine help you can find then the better. It took me six years to find this site. It's a shame these details are not handed out at the hospital so people can understand there is other help out there.

Merry best!

[PMRpro Ambassador in reply to Stkeyna]

The Aussies have done several reviews that show paracetamol is no better than placebo for most of the things it is used for. And has considerably more side effects than placebo. It should only be available on prescription IMHO. When the papers were published there were noises about stopping it - and the GPs put up a chorus of horror. So it is fine to give us something that doesn't work and damages liver and other organs it seems.

Sorry the comment is so late - I forgot to click on follow...

[Mish1920]

Me too!

Thank goodness for this forum.

I am supposed to be reducing from 5mg 3 times a day to 12.5. GP has given me 5 mg tabs but not sure how to go about dosage.

In future I might ask for 1 mg tabs to make it easier.

I hope you manage to sort out your formula.

[PMRpro Ambassador in reply to Mish1920]

The recommended way to use pred in PMR is as a single dose in the morning - that allows your body the maximum time without pred being present in the system and sends a sharp shock to the new dose of inflammatory substances shed every morning in the body. It also makes the reduction a bit more straightforward. Discuss it with your doctor - if he wants references as confirmation I can give you some.

[Dwid in reply to Mish1920]

Thanks, if you could send me references on taking pred as dingle dose in a.m. Would be greatly appreciative

[PMRpro Ambassador in reply to Dwid]

rheumatology.org/Portals/0/...

Recommendation 6: Use of single rather than divided daily doses of oral GCs.