Flare of GCA after 4 yrs on Pred ?

[miss-philosopher]

Is it possible to have a flare of gca efter 4,5 yrs on pred ? I have had pmr and gca since nov. 2014. Tapered from 50 mg. to 5 in 10 months. Then a virus and up to 15 mg. Then yo yoing up and down, and now I cant get undet 20 mg. 6 days ago I went to a kiropractor who tortured me, a had a coat on and it was very hot. stressful ...when I came home I felt sick. Headache sweating and became red in the face for hours when moving. I up my pred from 25 to 30 then 37,5 for 2 days and 40 one day. Slightly better in between, but still groggy dizzy and a little unclear in head. What to do ?

[Yellowbluebell]

Welcome to the forum, although I see you joined a few years ago but that this is your first post.

I dont have GCA but I am sure its possible to have a flare at any time you go below the dose your body needs. Add in to that your stressful chiro experience and its not hard to imagine your body reacting badly. Your also seem to have had a very quick taper from 60mg to 5mg in 10 months. Just as an example I started on 15mg in October 18 and have just gone to 9.5mg. This is the taper suggested by my rheumy and gp.

Everyone will be asleep here now but I am sure you will get more informative answers later in the morning when everyone is awake. YBB

[lesley2015]

Unfortunately , I did this March, after 4 years I was down to 2mg and over a period of several weeks felt worse and worse , my bloods were all raised so GP put me back up to my original starting dose of 40, but that did not control the head pain, I had to go to 60!

However , I have dropped more successfully this time and steadily working my way down again but emotionally it was a huge blow so don't ignore it go and see your GP

best wishes

[SnazzyD]

Hello. How disappointing. My initial thought was that it was a quick taper for GCA at first, but what’s done is done. By comparison I did 60 then quickly to 40mg then had a flare free decent to 5mg in about 15 months. Had my main starting dose been 50mg then add another month.

When you had the virus, did the symptoms come back? What symptoms prompt you to go back up since and is it your decision or the doc’s?

More questions - what took you to the chiropractor? Is there any chance you were dehydrated and over heated too?

I’m a great fan of chirp/osteo but since GCA there’s no way I could take it because even before GCA I always felt rough afterwards and interestingly I had to ban any cranial work due to its effects. I feel there’s a lot going on but not necessarily GCA. The groggy feeling may well be due to the sudden loading of Pred and dose fluctuations, but who knows?

[PMRpro Ambassador]

It is possible to have a GCA flare at any point - uncommon, but possible.

I think you need to get your rheumy on to this - or are they directing this yoyo approach to management? That initial taper was very fast - flares, mostly due to reducing too fast, are common in the first 18 months and the virus probably compounded it. Then you should probably have gone back to at least 20mg and approached the reduction very slowly. Once you get into a yoyo pattern it often makes getting things under control increasingly difficult - and the only way out is often to go back to well above what is needed and then very patiently reduce slowly.

How were you going about the reduction after that flare that seems to have led to the yoyo effect?

[miss-philosopher in reply to PMRpro]

I tried again to reduce a little to fast. Sometimes it seemed to work, but then a setback and had to go up again.

After the first year of 50 - 5mg, I have been trying to manage of my own. But after year 2 I was 10 days in hospital ( reuma dep.) and they put me on 50 for 5 days, then back to 15 mg. It seemed to help. 1½ yrs ago ( 3 yrs in ) I had a terrible flare of the pmr ...totally stiff in hip couldnt get up from sofa. I then took 50 for 5 days ( had to use crutches ) and it gradually subsided.

After this - the last 1½ year - I have been from 18 to 30 up and down. My newest rheumy wants me off pred altogether. She wants me to get to hospitel to be weaned of in 2 weeks. I said no thanks.

I probably have infection in a tooth, så she just called to say go to a dentist asap. and we can plan afterwards. But i´m worried about the the slight headace and groggy feeling I have now. I have taken 30mg. 2 days, 37,5 mg. 2 days and now 40mg. 2 days.

I dont know if I should try 50mg. for some days, or go down to 37,5 ...My rheumy wants me to taper quickly. and get the tooth done. I just want to get rid of the groggy feeling. I´m sure the trip to the kiropractor and the heat after has triggered something. But what may help ?

[DorsetLady PMRGCAuk volunteer in reply to miss-philosopher]

Hi,

“I dont know if I should try 50mg. for some days, or go down to 37,5 “ .....my advice would be give 40mg another couple of days to see if it works- if not then definitely up to either 45mg or 50mg. Why would you reduce if you still have problems.

Your newest Rheumy may want you off Pred, but a) it’s not her body, and b) if she thinks you’re going to get off Pred within 2 weeks without a lot of problems then she’s in cloud cuckoo land.

As jinasc says get things under control and then reduce monthly and no more than 10% - not some road-crash taper suggested by your Rheumy.

[miss-philosopher in reply to DorsetLady]

Tank you that sounds like a very good idea. You are right - and jinasc, - my newest Rheumy is crazy, and it is my body. I decide. I will do as you recommend. So glad - thank you again.

[PMRpro Ambassador in reply to miss-philosopher]

"My newest rheumy wants me off pred altogether. She wants me to get to hospitel to be weaned of in 2 weeks. "

She'd be my newest ex-rheumy. How the h*££ does she expect you to wean off pred and regain adrenal function in 2 weeks? That isn't how getting adrenal function back works. And what about the GCA?

[miss-philosopher in reply to PMRpro]

Thats what I dot understan either. I think she wants to use me as a guinea pig. She sais she has tried it before, but I doubt it. I find it very risky. The straight way to addison crisis. Dont you think ?

[PMRpro Ambassador in reply to miss-philosopher]

She wouldn't be using me as a guinea pig!!!! At least she wants to do it in hospital but yes, short cut to potentially very serious problems I'd say.

[miss-philosopher in reply to PMRpro]

Thank you, - I will sack her right away.

[PMRpro Ambassador in reply to miss-philosopher]

Good luck finding someone with a bit more brain

[jinasc]

PMRpro has hit the nail on the head "Yo-yoing".

Once you get the inflammation under control, then wait one month and reduce by no more than 10%.

Follow the DSNS pattern just using the 10% rule until you get down to 10mg.

Remember the Tortoise won the race.................not that we are in a race.