GCA Flare - how long for Pred to kick in?

[Bella1310]

Hi, a little advice please. My husband was diagnosed Aug 20 with GCA, started with 70mg Pred and got down to 3mg in November 21. He reduced to 2mg 3 weeks ago, then a flare started. Blood test showed CrP 18, a raise from 12. I rang Rheumy who faxed me prescription to raise to 6mg which he started on Monday this week. However he doesn't feel any better, just really fatigued. Is there a time it should take to work, is it not enough dose? Rheumy now on hol for Xmas and GP not around until Monday. The problem here is that we live in France and the Pharmacy will only give me what is on the prescription, and I only have a month supply at 6mg. Is the dose too low? how long before we see difference? any advice would be great, thanks in advance.

[PMRpro Ambassador]

You say he is flaring - with PMR-type symptoms or more like GCA? What is he experiencng beside the rising CRP?

[Bella1310 in reply to PMRpro]

He is being treated for GCA, just fatigue, no energy, occasional dizziness, just as he was before diagnosis last year. No pain anywhere, never has had pain.

[PMRpro Ambassador in reply to Bella1310]

Difficult to say much then really - the blood markers DO need to be monitored fairly closely I would say , at least every 2 weeks for the CRP to see what the trend is. He needs to be on enough pred to stop it rising at the very least. That will show that whatever is causing the inflammation and rising CRP is under control.

That is quite a speedy reduction from a high starting dose - how quickly has he been reducing from 10mg? That is the other part of the problem. His adrenal function now has to get back to normal and that takes time. Whilst fatigue etc is also seen with GCA/PMR, the symptoms are very much the same for adrenal insufficiency so that must also be borne in mind. Avoiding stress of any sort may help him feel better - easier said than done, especially at this time of year!

[Bella1310 in reply to PMRpro]

Thank you. He was at 10mg last April, then reduced 1mg per month until now. He was just fine on 3mg in November, the drop to 2 seems to have made the difference. I have a GP appointment on Monday so will chat to her then. He has a blood test in 10 days, so not too far away.

[PMRpro Ambassador in reply to Bella1310]

That's what happens - but 1mg a month at these lower doses is a bit optimistic. 1/2mg is more than enough, and even better, spread over 2 months. These are really low doses, there is no hurry.

[DorsetLady PMRGCAuk volunteer]

Agree with PMRpro, very quick reduction - and likely involvement of stuttering adrenals. But an increase in CRP really does need further investigation.

Unfortunately if he’s only been prescribed enough for 6mg a day, then you’ll have to work within that - and hope for the best.

I guess because he’s done so well so far Rheumy maybe doesn’t think it’s a serious flare. Obviously if he’s no better by Monday then you need to contact GP.

[Bella1310 in reply to DorsetLady]

Thank you. He was at 10mg last April, then reduced 1mg per month until now. He was just fine on 3mg in November, the drop to 2 seems to have made the difference. I have a GP appointment on Monday so will chat to her then. He has a blood test in 10 days, so not too far away.

[DorsetLady PMRGCAuk volunteer in reply to Bella1310]

With GCA, I found tapering on higher doses very easy….but slowed down significantly once I got to 10mg……1mg per month initially, then once I got to 7mg by 0.5mg a month- and a slower tapering regime.

Your hubby might want to consider that once he’s back on track.

Please let us know how things go.

[Bella1310 in reply to DorsetLady]

Update: Hi thanks for advice. Well I took hubby to A&E yesterday evening. He was shivering with cold for several hours and felt really really fatigued and weak. I am always wary of stroke, of which he has had 2 in the past five years. Well, full bloods revealed all is normal, including CrP which had reduced from 18 last week to 9, so Pred is working. Temp normal, blood sugar, white cell count, everything. The cold shivers suddenly left him after about 6 hours. So he was discharged as they couldn't find anything evident to keep him there. He has to see GP f course next week. He is still very weak today. I'm thinking his adrenal system doesn't know what to do? It had kicked in a couple of months ago, but maybe the higher Pred this week has messed it up. Oh so complicated. Thanks all for your friendly advice. Merry Christmas!!

[DorsetLady PMRGCAuk volunteer in reply to Bella1310]

Yes you might be correct about adrenals - we usually find that around 7-8mg they begin to come back into play -it's close to the normal level your body would produce when not on Pred, so it can be a very difficult time for some. This link might explain things better for you -

healthunlocked.com/pmrgcauk...

Glad to heart nothing found by A&E..and do discuss slower tapering with GP...helps both the illness and the adrenals.

Take care, and hopefully have a peaceful and less stressful Christmas. But there will be someone about, so don't think you can't ask...if you're worried about anything.

[Bella1310 in reply to DorsetLady]

♥️

[PMRpro Ambassador in reply to Bella1310]

Even after you are off pred altogether it can take up to a year for adrenal function to get back to a reliable normal. He might have had a little something going on that was a bit too much for his adrenal function to rise to. Though you would expect something in the bloods to be waving at them. Not something he'd eaten maybe?

[Bella1310 in reply to PMRpro]

Yes you could be right. We have had some household issues this past 2 weeks, a new bathroom being fitted with a lot of problems, then yesterday the kitchen waste pipe decided to collapse. Now this would normally be a bit of stress, but my husband's job was plumbing. Since his two strokes he has little use of his hand and can no longer do such work. Frustration for him is watching someone else do it and having to pay them. He doesn't feel this is an issue, but I know that it is. Thankyou so much for your help, the link was very helpful and I have just been reading to him about Adrenals. It made very clear to a lay person exactly what happens in the body. I have a science/biology background so I understand more than the average person. However tying him to a chair seems to be my only choice to stop him trying to do too much!! Thank you!!

[PMRpro Ambassador in reply to Bella1310]

I think that very likely could be the answer - frustration can be very stressful! And he is at a very low dose now that isn't providing much leeway when there is a household mess like that! The whole bathroom thing was probably driving him nuts though he won't admit it being a bloke! Why can't such things run smoothly - because they almost never do when you have someone in to do something where you might have anticipated what happens yourself but they didn't. And all just before xmas to boot! Been there, done that ...

[Bella1310 in reply to PMRpro]

Today, our friends who were coming here for Christmas dinner, phoned and suggested we take all the food to their house and they will cook it! It is our turn as we went to their house last year. Wonderful gestures like that almost make me weep. My husband is so touched that we can get out of our house with the dog and have a lovely day - and a rest for me. He is a lot better today, and admitted that he had been pushing himself in the belief he would get his adrenal system up and working. Your info link has suddenly made him see that he has been wrong. Thank you again!!