Flare GCA./PMR

[cochise555]

Hi there I was diagnosed with GCA just over year ago ( biopsy was negative.)Put on 60mg of steroids for a while then 40 then 20 etc . I saw rheumatologist who said I presented with PMR symptoms as well . I have been tapering slowly or so I thought. It normally takes me a three weeks to a month to come down 1 mg. I got to about 6 first started to get a stiff neck very gradually but kept reducing thinking that symptom would go then I was getting some knee pain and wrist pain . ( not realising this was a flare )I got to 51/2 mg.This week I I woke up so dizzy I couldn’t lift my head off pillow and felt very unwell I also have had lot of pain around ribs and back where if you try and take a deep breathe it takes your breath away. Up my preds to 10 mg .feeling lot better but getting few pains in left temple . Slight jaw pain that come and goes .could I up the steroids a bit more then if all okay start tapering again .i did go to the Dr about my rib pain but am just waiting to have a blood test .she said chest sounds clear Any advice would be much appreciated .

[DorsetLady PMRGCAuk volunteer]

Hi,

If you’ve got from 60mg to 6mg in a year - that’s not a slow taper!

Neck, knee and wrist pain certain sounds like a flare - and if you have temple pain (is it bilateral)- then maybe you should increase Pred to 15mg for a few days to see if that helps. You can then drop back down to 10mg easily - and then take it from there. But you need to run it past the doctor.

Dizziness could be due to neck pain or maybe even adrenals - as you’ve gone below physiological level (7.5mg Pred).

As for chest /ribs - have a look at this - does it sound as if that’s what you’ve got? -it’s a UK site, but if you’re from US you can find similar info - always helps us if you put on your profile what country you live in.

nhs.uk/conditions/costochon...

[cochise555 in reply to DorsetLady]

Hi thank you fo reply . I thought I was doing too good to be true .i have had the odd pain in both temples but not at same time and only fleetingly.I will take tour advice and raise to 15 as I still have lot pains in ankle and wrists . I did wonder if the dizziness was due to the adrenals but I’m afraid if you ask the doctor that they just look at you gone out . I had looked at costochronditis and asked the nurse who also looked at me gone out . I was stupid not to realise the aches and pains over last weeks was a flare . And yes sorry I’m Uk .

[DorsetLady PMRGCAuk volunteer in reply to cochise555]

No need to apologise - but when you feel up to it just put it on your profile - and a little bit more about your diagnosis etc would be good - makes it easier to answer if we can check a bit of background - we can’t remember everybody’s story - even without the Pred 🤦🏻‍♀️

[piglette in reply to cochise555]

I am glad someone else has a doctor who just looks at them when mentioning adrenal problems. My doctors seem to just turn off and nod their heads, like a nodding dog in the back of a car.

[cochise555 in reply to piglette]

Lol .i would like to be a fly on the wall when they are unwell. I just wish they had at least one DR or Rheumatologist in my area who really listened .

[SheffieldJane]

The key is the waiting between small drops of not more than 10%. of your dose. Sometimes for a month or more. You need to wait until everything settles before you go down again. I would try 15 mgs to see if you can dampen the flames. If it works. I’d be inclined to stay there for a comfortable while. Run this past your doctor, you want to avoid a yo-yo. It then becomes so difficult to read.

[cochise555 in reply to SheffieldJane]

I think I got my percentage mixed up . Also not waiting until all symptoms disappeared. I’ve took 15 and hope if the symptoms do get better i will be able to go back to 10 then do the slow method . My doctor doesn't really show much interest and my rheumatologist just wants me off them quick and on my last appointment didn’t listen to a word I said So I’m very grateful for your advice as it’s a lonely journey.

[Rugger in reply to cochise555]

It can be a lonely journey if you don't feel supported by your doctors. Have you looked to see if there's a PMRGCAuk support group near you? If you tell us where you live in the UK, we can have a look for you, or check the website. I help run the meet-ups in Yorkshire.

By comparison with your tapering - I have taken 8 months to get from 7mg to 4.5mg and now my Rheumatologist wants me to stay on 4.25mg for the next month! (Alternate days 4.5mg & 4mg.)

I hope you'll soon be feeling a lot better.

[cochise555 in reply to Rugger]

I live in Lowestoft. Reading my diary back I now realise that I had some pain at each reduction thinking some pain was normal.Also advice by my rheumatologist to get on with it . Not realising i was probably having a flare which was getting worse all the while . Learnt my lesson there.Thank you .

[Rugger in reply to cochise555]

There is an East Anglia support group which appears to have meet-ups in various locations. They had a meeting with a speaker earlier this month. Have a look at the PMRGCAuk website and go to the 'In Your Area' page, where you'll find details of how to get in touch - 'East of England', then 'East Anglia'.

[cochise555 in reply to Rugger]

Thank you very much for the information it will be great to be able to get more information and maybe be able to attend some meetings .Thank you once again

[PMRpro Ambassador in reply to cochise555]

Not sure I't be spending time on a rheumy who is so arrogant as to not listen to their patient - who knows more about their disease and their body than they will ever know...

[cochise555 in reply to PMRpro]

I agree entirely and had made up my mind with his attitude I don’t need him .!

[PMRpro Ambassador in reply to cochise555]

Which hospital are you at?

[cochise555 in reply to PMRpro]

James Paget

[PMRpro Ambassador in reply to cochise555]

I'm sure there has been a mention of a very good one there - maybe worth a post asking?

[cochise555 in reply to PMRpro]

Thank you will certainly do that

[PMRpro Ambassador]

Under 10mg/day I don't consider 3 weeks to drop 1mg is slow!!! 60 to 6 mg in a year is not slow - it's fine as long as it works at the time because you are well above the dose you are looking for, the lowest dose that manages the symptoms, but below 10mg you are into different territory.

Are you able to contact your rheumatologist? You are likely to find the PMR side more difficult to get rid of, GCA does seem to respond more quickly for many people, but if you are starting to experience similar symptoms to your original GCA diagnosis I think your need expert input rather than jsut the GP.

[cochise555]

Hi there yes I have been following sone of the rheumatologist advice but felt very belittled when I saw him and at the time thought I was having a flare at about 7. He said FLARE what do you mean had a flare ,got a paper out and said this is the way 7 for few days then 6 etc etc I was complete gobsmacked and just wanted to leave . I thought he was suppose to help me .If things don’t improve I will try and get in touch with his sectary. But I can only imagine what he will say . I’m paranoid he will tell me I have to stop the steroids. Thankyou for the advice.

[PMRpro Ambassador in reply to cochise555]

You can't just stop steroids - you have to taper. If he gets silly - discuss it with your GP.

[cochise555]

thank you I will do that if it happens. I think he’s just a bully .