Tapering

[Lancashirelass07]

My GP says reduce down to 15 mg After only 2weeks , is this a normal length of time,? after reading some posts about dubious , but how can you argue with them . When they are prescribing?.

Advice welcome thanks everyone.

[HeronNS]

i don't really know, as 15 is the level at which I started and have never taken more. But I would suggest you not drop the whole 5 mg at once or you will run into trouble. It's best if you can drop by 2.5 and stay at that level for a couple of weeks before tapering further to get to 15. I also think that although people are often told to taper by 2.5 from 15 they often seem to find that a big step and 1 mg is easier on the body, and really takes no longer, depending how you do it, with far less in the way of withdrawal symptoms.

[SnazzyD]

I suppose the first question is, how do you feel on 15mg? I would hazard a guess that a 5mg drop would not be a great experience. Would they agree with 2.5mg, even over 2-4 weeks isn’t going to make a huge difference in the grand scheme, I wouldn’t have thought. I think docs tend to react better if you have thought of a plan rather than just saying no which sounds like you’re refusing to drop at all which always gives them the willies. However, if you are still symptomatic you need to spell that out.

[PMRCanada]

I dropped from my starting dose of 20mg down to 15mg after one month. My GP wanted to ensure that the inflammation was being addressed as I had been suffering with symptoms for almost 6 months before diagnosis. He checked my ESR and CRP levels before I dropped to 15mg.

It was the next drop (as per rheumy instructions), from 15mg to 10mg that caused a flare so I had to go back up to 15mg for 5 weeks, then I dropped by 1.25mg increments as rheumy would only prescribe 5mg tablets, which I cut in 4.

Best to discuss with your physician if you are concerned. Pay attention to how your body responds to the taper.

[Hidden]

I don't think it's that unusual to drop 5mg when your starting dose is above 15mg. But whether it is doable is another matter. How do you feel now? If you have 80% reduction of symptoms then it may be worth trying 15mg. Remember when tapering it's normal to have a few aches due to dropping the pred. Paracetamol will help that and it occurs in the first few days. If after 2 weeks the symptoms return then you know you have gone too low and 5mg 2 weeks in is to much, too soon. Just keep asking questions when you are unsure.

[DorsetLady PMRGCAuk volunteer]

No it’s not the normal taper. Most say at least 3 weeks at starting dose, and if starting on 15mg then taper to 12.5mg then 10mg.

I appreciate you started higher - at 20mg which is obviously why your GP thinks it’s okay to drop to 15mg - but I have my doubts - both in time and dose. It can take at least 2 weeks for you to really be sure your starting dose has mopped up all the pre diagnosis inflammation.

You can drop 5mg at a time if you are talking about GCA doses, and in the 30s or 40s but I fear it may be too much in your situation.

I know it’s difficult at the start to argue with the doctor, but I think you must say you are a bit concerned about reducing so quickly - and maybe say you are willing to try but get him to agree that if you hit a problem you can go back up to 20mg, stabilise and then try a slower taper 20-17.5-15mg. That way he can see you are willing to try his way, but you have a back up plan if it doesn’t work.

[piglette]

The trouble is a lot of doctors are hell bent on getting us off steroids. I have never understood their thinking, they give us steroids which work wonders and then immediately want us off them?

[Lancashirelass07 in reply to piglette]

Hi , It seems to me no 2drs have the same advice , looks like it's trial and error , not good enough really, no wonder we are all confused and anxious.!!

[Hidden in reply to Lancashirelass07]

Have you got enough pred and time before you see him to do 2 more weeks at 20mg? I think if you can get symptoms under control you will feel better and can hold your corner. When we first go and get diagnosed we are so vulnerable and it takes a while to build yourself back up.

[dillydally1]

hi, I started at 15mg for two weeks then was dropped down to 12.5mg. whilst I was on 12.5mg had a bit of a flare, so doctor told me to stay at that level and did another blood test. I am now down to 10mg and not feeling to bad, fingers crossed it will continue. I felt the same as you if a doctor says you have to do this, then I felt obliged to do it. take care x

[Telian]

Depends how you feel, has your pain improved? If not then you need to stay as you are a little longer until you do. It may be you need to increase the pred too if you don’t improve. Listen to your body and as already been said have a plan and discuss it with your doctor. Rushing a taper will not work.

[PMRpro Ambassador]

It would be normal when using pred for any other reason except PMR!! It is the sort of approach used to reduce from a higher dose to zero when pred is used for something like bursitis or asthma.

Offer this to your GP:

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

It was developed by a top rheumy while at Bristol and presented to GPs at the Royal College of Edinburgh to help them to manage their PMR and GCA patients better when it was difficult to get a rheumy involved early because of waiting times.

Many of us think it is still on the fast side and that not enough emphasis is put on adjusting the tapering for the individual patient and their symptoms. When it comes to tapering each reduction step should be no more than 10% of the current dose so at 15,g that would be 1.5mg. At 10mg it is already down to 1mg and even that may be too much below 10mg.

[cranberryt]

Mine wanted me to drop from 20 to 15 because according to her “15 is all you need for a starting dose anyway.” I stood my ground and she agreed to a 2.5mg drop every 2 weeks instead. I am now at 15 and will keep doing 2.5 drops every 2 weeks until 10. then 1 drops. I would feel more comfortable with 4 weeks at each dose but so far I am doing ok this way.

[PMRpro Ambassador in reply to cranberryt]

No - 15mg is what SOME people need. If you had to go to a higher dose to get things under control obviously 15 wasn't enough was it!!! What a silly thing to say ...

[cranberryt in reply to PMRpro]

I know, right!