Worried

[Janann25]

Due to the possibility that my PMR had turned to GCA about 10 days ago - thankfully it hadn’t - but it meant I was on 60mg Pred for 4 days (normally in 6mg) and have been reducing daily, having got to 10 yesterday. But during last night and this morning I’ve had a bad headache and am shaking badly. I even feel as if I’m shaking inside. I’m trying to get a doctor appointment today but I really rely more on the advice here. Could this be because I’ve reduced too quickly and should take extra today. I take my coated Pred before bed.

I hope there’s someone around to help me.

Jan

[DorsetLady PMRGCAuk volunteer]

I would say yes, too quick a reduction. Can understand why and guess you were following instructions, but cutting dose every day is a bit too much.

I would have suggested a couple of stops along the way to let body “catch up” so to speak.

Perhaps take an extra 5mg now and see if that makes any difference whilst you wait for medical advice..but then take it slightly slower.

Obviously not back to “beginning taper”, but certainly not a daily drop.

Come back and let us know what GP says please.

[Janann25 in reply to DorsetLady]

Thank you so much. As we discussed in my previous post, I had a choice between dropping straight back down or reducing slowly so I chose the slow method - but obviously not slowly enough!! I’ve managed to get an appointment for later this morning but will take 5mg now. Again, thank you - this forum truly is wonderful.

[DorsetLady PMRGCAuk volunteer in reply to Janann25]

Good - so pleased that’s it wasn’t GCA, but coming down too quickly would certainly make you discombobulated -to put it mildly!

[Janann25 in reply to DorsetLady]

I’ll let you know how it goes with the doctor.

[PMRpro Ambassador in reply to DorsetLady]

After only 4 days at a high dose even dropping from one day to the next should be OK. uncomfortable possibly - but OK.

[Janann25 in reply to PMRpro]

What would you think is causing the problem I have, if not too fast a reduction?

[PMRpro Ambassador in reply to Janann25]

In my reply to you I did say it could feel very uncomfortable but it isn't dangerous as such - maybe didn't express it well. This was a comment to DL

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Should be …but as we know things don’t always go according to plan 😊

[Janann25 in reply to DorsetLady]

I managed to get an appointment with a very pleasant, young doctor who actually had a good knowledge of PMR/GCA and side effects of steroids. She confirmed that my body was struggling with the taper and also said that, whether the reduction was instant or slow, there are always some people whose physiology doesn’t cope well. And in view of the problems I’ve had over the last 5 years, I can definitely believe it!! I’d taken along the instructions given to me by the consultant at the Eye Clinic and she decided that, having got to within 3 days of the end of the taper, to continue as shown. So, it looks like I’m going to have several uncomfortable days before it settles down☹️ My BP and heart rate are up but she’s not concerned and I have an appointment to see her again next week. Thank you both DorsetLady and PMRpro for your advice. Jan

[PMRpro Ambassador]

I really do think it is unlikely to be a great problem after only 4 days at 60mg - my daughter often has short 6 days courses of 40mg and stop like many who have asthma - and they did suggest dropping straight down which might have been easier - only one change in dose to adjust to.

But definitely worth seeking a medical opinion.

[Janann25 in reply to PMRpro]

I managed to get an appointment with a very pleasant, young doctor who actually had a good knowledge of PMR/GCA and side effects of steroids. She confirmed that my body was struggling with the taper and also said that, whether the reduction was instant or slow, there are always some people whose physiology doesn’t cope well. And in view of the problems I’ve had over the last 5 years, I can definitely believe it!! I’d taken along the instructions given to me by the consultant at the Eye Clinic and she decided that, having got to within 3 days of the end of the taper, to continue as shown. So, it looks like I’m going to have several uncomfortable days before it settles down☹️ My BP and heart rate are up but she’s not concerned and I have an appointment to see her again next week. Thank you both DorsetLady and PMRpro for your advice. Jan

[DorsetLady PMRGCAuk volunteer in reply to Janann25]

Glad you managed to get appointment hope it all goes well during next week.

[Janann25 in reply to DorsetLady]

Thank you 🙏

[PMRpro Ambassador in reply to Janann25]

She sounds like a keeper! It's true - we all react differently to changing the pred dose but however you do it - there is likely to be a period of feeling totally rubbish. Unfortunately ...