I was asked to book a review with my GP when I got back so this will be next week.I have been studying the slow tapering plans so I can sensibly put my case for not being 'off Prednisolone in a few months' as I was told at diagnosis. The plan I was given back then was far too much too soon and I ended up starting over again.
I have, over the holiday, reduced from 15mg to 14.5 successfully. I thought perhaps 0.5mg every 4 weeks or monthly might be ok, or would even slower be preferable?
What would be advised by members experienced with tapering please?
At this stage you should be OK with that - at least try it and only slow it further if it doesn't work for you.
This is an established basic plan for a taper from a couple of very good rheumies - Kirwan is now retired but in his day was to PMR what Prof Dasgupta became to GCA. The author of the paper, Vanessa Quick, is now a Prof, specialising in GCA, she spoke at the charity AGM this year and is a gem. She still uses the approach - because it works. Not everyone manages the faster stages - so it should always be adjusted for the individual but it does show that "a few months" is NOT on the cards:
How YOU get through each level is dependent on you and YOUR PMR - not an idea based on a textbook patient (who doesn't exist except in someone's imagination) which someone has mis-remembered into the bargain!
Is 15 mg the point were you slow it to 0.50 mg every 4 weeks . my rheumy is having me go down fast from 60,to 40 in 4 weeks then 40 to 30 to, 30 to 20, then 20 to 15 mg every 2 weeks. I see him at the 15mg level and I do not know his plan then. He did start me on Actemra 2 weeks ago so I can get of Prednisone faster he said.
Depends on the patient. And as I have just explained to someone else - Actemra only works for one of the at least 3 underlying causes of the inflammation and if YOUR GCA involves one of the others, you won't get off pred entirely, half of patients continue to need a low dose, 8-10mg is a common level. So if you flare while on the Actemra and your doctor says it can't be GCA - he is wrong.
Basically do not reduce more than 10% at the point you are at, I found it worked for me. I was told to reduce between 2.5mg and 5mg and it was too much, in fact disastrous! 0.5mg should be fine possibly even a little bit more. Four weeks also seems sensible.
It seems a lot of doctors seem to go for that. They are not reducing, so do not know the effect it has. Some people can manage it and some like us can’t. I suppose the doctors go for a maximum rather than a minimum and assume if it does not work, the patient will complain.
I didn't tell the doc. I read what it said on here and got myself down to 14.25 from 15. I'll go on from there as has been advised by the members here. I'm feeling ok now I'm home, so the doc should be ok with it. After all, I have to take the stuff, not him
Not since the original plan that was too quick. I spoke to my own GP on the telephone and he was supportive of a slow taper but it depends if I get to see him. It can be hit and miss at our practice
i had the 3 weeks of 15mg, 3 weeks of 12.5 , then 6 weeks 10 and 6 weeks 9 which has been ok for me so far. That looks like the standard suggested NICE guidelines for NHS doctors, but they do also say some people need slower and only reduce if symptoms are controlled. I'm coming up to another drop next week, so a bit nervous. I hope you get a suitable plan agreed 🙂
It is a good idea to slow down a bit and just only reduce by 0.5mg under around 10mg, as the adrenal glands will be starting to wake up around 7mg too, which can also have an effect on some people.
When you take steroids for more than a couple of weeks your adrenal glands start to go to sleep. This means that as you reduce they need to 'wake up' again. It is normally around 7mg this starts to happen. It can take up to a year after you stop taking the pred for them to get back to normal. The symptoms tend to be being very tired, feeling sick and generally not your usual self. It does not happen to some people and the symptoms can vary a lot from person to person. In my case I was desperately tired.
Hi LittleJane! I have just reduced from 15 to 14 & plan to stay there for a month. So far so good, despite a head cold. Rheumy suggested 12.5, but that was way too quick. In fact, thinking of 0.5 reduction from now on. All the best!
Hi Little Jane,I am doing a 1/2 mg taper every 7 weeks as per DL and PMRpros advice.So far so good at 5 1/2 .Adrenals we’re not being kind to me at all,weepy,fatigue but do you know what?I did 4 hrs gardening the other day,maybe I shouldn’t have but I felt pretty good yesterday,few aches and pains etc but the health benefits mentally to me were well worth it.I lose myself out there.Glad you are coming around to the forums way of thinking and you seem SO much brighter!!Good for you!I listened to my rheumys instructions in the beginning of my GCA and it cost me 2 flares!If I had only joined the forum earlier I probably could have saved myself all that!But never mind,I’m here ,you’re here and the advice we need is on tap.,Good luck to you xx🌼🌼😜🤞🏼
Thank you all for your kind and helpful comments. I'm going to go quiet for a bit and regroup from the past couple of weeks.I received the charity's info pack for new members yesterday and will work through it. I will let you know how my review appoint goes, see you soon x
In my case I always gave it 3 months between tapers, and found that taking the extra time to let my body stabilise meant I didn't get any flares while reducing. However, when I got down to 4mg I stayed there for a very long time, as it seemed to suit my body.
Then last year I saw a rheumy who wanted me to reduce my dose. I tried, and even managed to get down from my normal 4mg to 3mg and then 2mg over a three month period. But it was far too quick for my system, and after being on 2mg for 4 days, my body rebelled and seized up.
So now I'm back on 4mg and happy to say, I seem to be living a life once more, instead of just an existence. As such I agree with you, that the slower you go, the better it is for your body (and mind!).
Thank you for your reply, I find that the longer I stay at a dose the better it works for me as well. I havent felt so well though as I have gone below 5.5mg and will chat to my rheumy at the end of the month.
I havent felt so well though as I have gone below 5.5mg
Do you think that’s your PMR or your adrenals or a combination of both? Maybe even slower taper than ever… and longer in between that tapering to give adrenals time to catch up..
Hi! DL thanks for your mail, I have GCA and at times have felt like I did at the start of GCA. I think it may be adrenal issues going on. I take methotrexate and pred. I am very tired a bit low and ache a lot. I am also waiting for a spinal stenosis op next year and that causes a lot of pain. co codomol helps that but I try not to take that all day. I am not sure how much of the pain is stenosis or GCA. I see rheumy at the end of the month so may run it by him.
Not sure why I assumed PMR, apologies, probably because you seem to be struggling with it still. Does your stenosis affect your neck and arms or is it lower back or all over? If upper spine, then no wonder you have problems knowing what is what, but if the co-codomol helps that may give a clue, although can appreciate you don’t want to take too much of that.
I see you had a rough time after your covid booster, do you think you might still have effects of that?.. or at least your adrenals are still trying to cope with that.
I don’t you probably don’t want to increase Pred [for many reasons], but how about trying an bit extra for week, and see if there is any significant difference…perhaps not an extra 5mg as we usually suggest for a flare, but 2.5mg. If it doesn’t help, the you can drop back down to current dose easily enough.Might be worth a try, and a bit more evidence as to what is the issue.
Thank you DL for your time and thoughts. The stenosis is at L4 and L5 so lower back and it effects my left leg and all down that side. I also have neuropathy in both feet and lower legs. And sciatica at times. I am desperate not to increase pred as I want to be as low as possible when the op eventually happens and I am having trouble with my weight which I hate. I am having my covid vaccination in two weeks time but am dreading it as the spring one made me feel very ill. My GP increased my Gabapentin two weeks ago and its made me feel rather rather pleasant so thats going back down again and I will have to put up with the neuropathy going nuts at times. I did increase the pred a couple of weeks ago from 4.5 to 6.5 and felt better quite quickly but only did so for two days. I am seeing Doctor Khurshid at the end of the month and can always get him on the phone for advice. It seems needy to phone him when my appointment is so close. I have always found reducing pred right from the 60mg days to now to be difficult. Once again thank you for your help and support.
Oh dear, things do sound pretty awful for you at the moment. Sure Dr Khurshid would prefer you to contact him rather than suffer in silence, but I get your comments, however it’s not being needy in the least. If you need his help, you need it. 🌸
I don't think it is needy - and it MIGHT even result in seeing him sooner so he can see how you are struggling. A picture paints a thousand words - and seeing the patient is even better!
0.5mg on a DL five week taper worked well for me but even that was not set in stone and if moving to the next taper doesn't feel right then extend/repeat the last week until it does. Good luck and hope all goes well with the doctors appointment.
Thank you for your wisdom. I am not doing so well. Review booked for Friday. Went from 14.25 to 13.75 once home. Not painful, but uncomfortable arms and hips when I went for my walk 😕
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