To all GCA and PMR patients:

[PuttyPenguin]

Just a quick note on something that I discovered recently...

A few months ago I had a flare-up of PMR when taking 10mg and did, what we all do, and increased my Pred to my previous ‘happy’ level of 12.5mg. Everything settled down so after about three weeks, I took a more leisurely route to decrease. However when I reached 10mg again, I got a GCA flare up. I was really surprised as I’d thought they would come together. But they don’t. So I’m posting this info for any newbies. You can have flares in either disease or in both at the same time.

The second thing I’d like to mention is, having spoken to a Rheumatology nurse about the above, she told me that should I have any problems with the GCA and wish to speak to a nurse, then call the helpline and after leaving the requested relevant details tell them that you are a GCA patient. I didn’t when I had the GCA flare-up - because no-one told me - and they took 3 weeks to get back to me. If you have GCA they will get back to you usually within 24 hours and I have tried this as I'm still having trouble with this flare-up So I’m guessing that if I didn’t know about this screening process then there are maybe a lot of GCA patients out there who also don’t know.

I hope this helps someone. Wishing you all well xx

[Nextoneplease]

Thank you Photojournalist

Useful info indeed! All the best to you 😊

Nextoneplease x

[jinasc]

I assume you were diagnosed Jan 2021 from your profile. What dose did you start on please.?

If it was Jan this year and your down to 10mg, I am not surprised that you had a GCA flare. When you have both - it normally takes longer to get the GCA under control and on high doses for GCA not that I had both. However speaking to people who had both, they said that the high doses meant that they did not have much pain with the PMR till the came down to a lower dose............

I had two flares with GCA one after 6 months - then another around 6/7 months later - they were put down to too fast reductions. So we then went to no more than 10% at a time.. but my Rheumy was good and decided to go down that route.

BTW this was long before tapering plans.

[PuttyPenguin in reply to jinasc]

Thanks for Jinasc. I was diagnosed in November 2020 and I had a rapid reduction from 60mg to 20mg in six weeks. That was a ride and a half! I have now been told to take a much slower journey. But my point to this was to assure GMA and PMR people that you can have a flare up at different times - seems crazy, I know. xx

[RoadTrip]

I had the same. PMR flare at 9 mg, flare rules a few months later mild GCA flare at 8.5 mg, a few months later now trying 8.5 mg again. It does confuse me how the two diseases co- exist. Hope your next reductions go well.

[PMRpro Ambassador in reply to RoadTrip]

It isn't coexistence - they are just different expressions of the same illness depending on where is affected.

academic.oup.com/rheumatolo...

Bit complicated maybe but Fig 1 is clear enough.

[RoadTrip in reply to PMRpro]

Many thanks for article. So if flaring in different areas that’s just how it is? Or does GCA flare imply that inflammation is worse, as needs higher Pred to start? If latter case then assume would always have PMR flare with GCA flare. Sorry brain gets bit confused at times!

[PuttyPenguin in reply to RoadTrip]

Hi Roadtrip! I have no idea why this happens only that you can have flare-ups of the two diseases at different times. Seems ridiculous to me but there again no-one understands the whys and wherefores of our diseases.

[PMRpro Ambassador in reply to RoadTrip]

Don't know really - I think I would apply the "add 5mg to the dose you flared at" and see if that worked first. Unless you had definite GCA symptoms in which you would need more AND a chat with your doctors.

[PuttyPenguin in reply to PMRpro]

Thank you Ambassador! I spoke to the nurse who told me to go back to where I'd previously been 'happy' (12.5) for two months. Which is what I've done. Most of the symptoms have gone now, just a bit of tingling now and then, and I'm a month into this period. I have a phone call arranged with the rheumatologist next month by which time I'll now if the nurse was right!

[RoadTrip in reply to PMRpro]

Many thanks the add 5mg etc. seems to have worked.

[lkcreedon in reply to RoadTrip]

How long did you add 5 for? Was it 4 or 5 days?

[RoadTrip in reply to lkcreedon]

I added 5 mg for 10 days then 2 1/2 mg for 5 days and then spent a month on the last dose I felt fine on. If you look at FAQ there are details of what to do in event of a flare, see the link below

healthunlocked.com/pmrgcauk...

[lkcreedon in reply to RoadTrip]

Thanks Roadtrip. Sometimes it's hard to know what is best to do. Thankfully this site is of great help and support.

[RoadTrip in reply to lkcreedon]

It is difficult to know what to do for the best. I’ve been left to my own devices, been discharged by hospital Rheumatologist, for over 3 months and have heard nothing from GP. As you say, the site is a great help and support, which I would truly be lost without. I hope you get your flare sorted out, best wishes.

[lkcreedon in reply to RoadTrip]

Thanks RoadTrip. Yes pretty much managing things on my own with regard to the handling of the medication and with the help of this site.

[RoadTrip in reply to lkcreedon]

Seems to be the same for a lot of folks on here. As many doctors seem to like fast tapering, perhaps being left to our own devices is not all bad!

[lkcreedon in reply to RoadTrip]

Yes agree with being left to our own devices. We know our own pain afterall. Without this site tho we would be lost a lot of the time.Thank you

[lkcreedon in reply to RoadTrip]

Just read your link to DorsetLady's post. Very good and helpful. Thanks for that RoadTrip 😊

[PuttyPenguin in reply to RoadTrip]

sorry Roadtrip I've just realised that you were 'talking' to the Ambassador....

[RoadTrip in reply to PuttyPenguin]

No problem, I regularly get confused by the indenting of replies. I thought your other reply was in response to my original reply to you to which it seemed to make perfect sense. If that makes any sense at all!

[PuttyPenguin in reply to PMRpro]

Thanks for the link, Ambassador...now all I've got to do is understand it....but you've expressed it nicely in one short sentence and that's good enough for me! But it is weird.

[Nagswoman]

How do I know it is a GCA flare up? Not getting much help or interest from the medics?

[PMRpro Ambassador in reply to Nagswoman]

A flare is a return of the symptoms you had originally - although sometimes new stuff does appear. It pays to know the signs of GCA and don't be in denial.

[Kiwisufferer2019]

Can someone please tell me the symptoms for GCA. I've suffered a lot of headaches over the last couple of months. Have had PMR 2 and a half years, was given a temporal biopsy 2 months after starting prednisone which was negative, but I've read that if you've started prednisone it doesn't give a correct reading.

[PMRpro Ambassador in reply to Kiwisufferer2019]

This is a very old post and few people will see your question.

I suggest you have a look at this from the FAQs:

healthunlocked.com/pmrgcauk....

which has links to a multitude of posts and replies from people describing their experiences and symptoms when they had GCA.

Once you have absorbed that, post a new thread and ask any specific questions you have.