GCA and flare

[christine2715]

I have had a bad flare up that has lasted over a week. I struggle to reduce my Pred and can only manage about 1 mg at a time - every 12 days in general. I need to get the Pred down as I have gained so much weight - now 17stone plus. The rheumatology nurse suggested a 5 mg boost for one day only - or three days - then back to 15mg. So 20 mg today and 15 mg tomorrow. She says that sometimes works and at least you don't loose two months getting back to where you were. Has anyone else tried that. My flare up started with me forgetting to take my afternoon dose of 9mg I think - it was the second time I have forgotten and the first time I seemed ok. Any advice would be great.

[Threeyearson]

This is my experience only, no medical advice. Several times I have had a bad flare, usually caused by doing too much when feeling good!, I have increased from 7.1/2 to 10 for 2 to 3 days, which has helped, then reduced back over 2 days. This has worked well for me. I have had PMR not GCA for 6 years now. All the best!

[SheffieldJane]

The dead slow method of reduction is recommended on here and never more than 10% of your dose. It is the tortoise and the hare, it can't be rushed. The weight gain most of us experience is to do with increased appetite and therefore eating too much of the easy bad guy carbs. Also PMR makes you slow down a lot so you're not burning it off. I wish all the weight would simply drop off when we stop taking Prednisalone but it won't. We just have to train ourselves not to give into the righteous hunger that we experience. Easier said than done, I've become a chocolate monster never having had a sweet tooth before. Good luck with your reducing!

I haven't eaten for about 3 days and I'm sure my face looks less moon- like today. I've been horribly ill though ( secretly pleased re- face).

[DorsetLady PMRGCAuk volunteer]

Hi Christine,

Sorry to hear about flare, hopefully your regime from Rheumy nurse will sort it out.

If you are very susceptible to reducing perhaps you should try the slow plan, if you don't already, and maybe only drop by 0.5mg at a time. The weight gain is a complete pain, but as you reduce that will go. Try cutting out carbs as much as you can, and eat smaller meals, but more often, that sometimes helps the hunger pangs!

Plus, remember to take your Pred, if necessary put it in a very obvious place, leave yourself post-it notes, or set the alarm on your iPhone! It's very easy to forget if you're busy doing something!

[christine2715]

Since forgetting I have set an alarm - hopefully that will prevent it. Thanks

[PMRpro Ambassador]

If you have GCA you need the amount of pred you need to keep the inflammation under control and not doing so may result in a full blown flare so do be careful. I think it is hardly surprising you are struggling to reduce at that speed - every 12 days is far too fast.

It is possible to lose weight while still on pred - I lost over 36lbs starting at 15mg by cutting carbs drastically. There is a thread on the Lupus forum from a group who have lost weight using the Slimming World approach - and my daughter has lost over a stone of pred weight despite needing pred burst for asthma every so often.

But to answer your question, yes it is possible to take pred like that to calm down a flare. It is often done in RA to reduce the joint pain but in that case it is usually to tide you over until the DMARD drug they are on kicks in again. Pred is our DMARD, the drug that manages the inflammation.

And how about getting a dosette box for your pills so you can see easily if you have taken your pills for the day - and putting an alarm on your phone (as I do) for taking them. Even my husband knows why my alarm is going!

[christine2715 in reply to PMRpro]

I have two dosette boxes, one for the afternoon and one for the morning, I have just put an alarm on my phone which may help. The rheumatologist nurse idea to go up to 20 mg form 15mg then back to 15 the next day didnt work and I felt awful and still do. In the meantime doctor rang and my ESR was 95 - taken before the above and CRP 49 So now back to 20 mg and will have to hold on that for a while.At last they have prescribed antibiotics which they have been reluctant to do. Have Sinus problems and sores under my tongue. In the meantime miserable as having to cancel two important things I planned to go to.

[PMRpro Ambassador in reply to christine2715]

Is your GCA diagnosis confirmed with a biopsy? Are the sinus problems recent or longer term? I ask as there are other forms of vasculitis that could cause sinus problems and mouth ulcers - and I think they should be considered.

My dosette box has 4 compartments, for morning, midday, afternoon and evening - which may be better than 2 separate ones.

[christine2715 in reply to PMRpro]

My GCA was diagnosed by two rheum. by PET scan. I also have wondered if I have something else and have had sinus problems for years. Had a scan if head and I gather it did not show anything - not sure what. They did not properly scan my neck - only part of it. The rheum. nurse suggestion to put pred up to 20 mg and then back to 15 next day didnt work. Really ill and in bed for two days. Didnt think it was a good plan. Seeing Prof Das Gupta on NHS on 21 Feb but will have to travel two hours. So hope to get a new opinion. Thanks for your advice.