GCA Flare

[Sho-Sho]

I am pretty sure I am experiencing a mild flare of my GCA. I was diagnosed nearly 4 years ago, tapering slowly down. Have been stuck at 6.5/7.0mg for nearly a year now but for the last couple of weeks I have been getting headaches, feeling quite fluey & achy (I am sure I it is CV as have been self isolated for 4 weeks now not seeing anybody but my husband!). How much should I increase the pred & for how long. Am too nervous to go to the surgery to have a blood test. Any thoughts would be much appreciated.

[SnazzyD]

Are the headaches the same as you had prior to diagnosis? If it were me I wouldn’t be bumping up the Pred back to GCA levels without speaking, on the phone at least, to a doc. If your husband has been out at all or you’ve received anything into the house, it is possible it could be Covid (though the pattern isn’t textbook) and I wouldn’t want to be on high dose Pred without good reason. They might suggest a modest increase in Pred, but some sort of discussion is needed. This level of Pred for me was miserable with a permanent fatigue, fluey feel amongst other symptoms, which didn’t start to let up until I got to about 5mg. I just pushed through because I didn’t have any real GCA symptoms like I had before and I suspected that myPred level was too low for daily requirements but too high for my adrenals to realise they needed to work. My eventual appointment with an Endocrinologist confirmed this.

[Sho-Sho in reply to SnazzyD]

Thank you for your comments. I think the headache is more central, but I know initially I thought I had really bad sinusitis & was initially treated for that, the worrying thing is that this is exactly what it feels like now. I have had quite a stressful few months as we moved house at the end of January, my husband suffered a heart problem as we moved (but is fine now) & then my daughter had a mastectomy (she has recovered very well & doesn't need any further treatment, thank goodness) & now of course, the virus worries. So pretty stressful, so I just wonder whether the anxieties have been a trigger to cause the GCA to flare. It is so frustrating because a few weeks ago I began for the first time in 4 years to feel a little better & have more energy. My Rheumatologist referred me to an Endocrinologist a year ago now to have the adrenal function test because she thought I was experiencing adrenal insufficiency, even at 7mg (which she feels that although most endo's say that 5.0 is about the level the adrenals need to kick in, she doesn't agree with that. However the test showed there was no adrenal function . All very confusing. Sorry this is a bit rambling.

[SnazzyD in reply to Sho-Sho]

From what I’ve learned from a handful of different Endos, 7mg is still enough to keep the adrenal glands sleepy which is why I wasn’t allowed the test until I was at least down to 4mg. I found that 7mg wasn’t enough to deal with much extra in the day but my adrenal glands weren’t taking up the slack. I agree with her that the adrenals probably do need to kick in but they may not, at least not fully. If you think we make about 8mg naturally when the adrenals are awake it stands to reason that if you take 6-7mg of a potent synthetic corticosteroid they don’t need to work much yet. If you then need extra cortisol because life is stressful and your pill has worn off, you have no back up yet.

[Sho-Sho in reply to SnazzyD]

The comment 'about having no back-up' is very interesting. I hadn't thought about it in that way. Hopefully now with this enforced rest, my system will settle down & start coping again without increasing the pred, which I am so reluctant to do.

[SnazzyD in reply to Sho-Sho]

Well you currently have a few ‘choices’ - possible GCA or PMR, possible COVID and possible adrenal insufficiency, or non of the above. Keep a close eye and an open mind.

[Telian in reply to Sho-Sho]

That’s a lot of stress and could cause a flare. Arrange a telephone appointment with your GP first of all but an increase to 10mg will tell you if it’s needed. You can drop back down quickly without side effect if not the answer.

[Sho-Sho in reply to Telian]

Thank you.

[Hidden]

Hi sho sho, I was just wondering if you think it could be PMR showing itself. It's not unusual for PMR to accompany GCA and show itself at lower doses. It's just the achy flu type feeling that makes me ask. I know you have a headache too, where is that appearing in your head? In the same place as your GCA?

PMR

images.app.goo.gl/QzBae1AiC...

For PMR we usually add 5mg for a week then go back to previous dose plus 0.5mg or 1mg. That usually works for me. In fact up from 6mg to 10mg worked for me. My worry is that may not be enough if it's GCA, but it's not worth going higher if it's not GCA symptoms in the current climate perhaps, without discussing with rhrumy. Hopefully someone more helpful will be along. I just wanted to ask the questions regarding PMR. 🌻

[Sho-Sho in reply to Hidden]

Do you get headaches with PMR? My body is certainly much more achy than when I first had a GCA.

[PMRpro Ambassador in reply to Sho-Sho]

If it is affecting your upper back and shoulders it can tighten muscles up into your neck and cause headaches.

[Sho-Sho in reply to PMRpro]

My shoulders & neck are certainly more achy. Do you need more than 7mg to control PMR, particularly having been on pred for so long.

[PMRpro Ambassador in reply to Sho-Sho]

Time has nothing to do with it - it is the activity of the underlying autoimmune disorder which varies over time and from person to person. It is different for everyone. I've had PMR for 15+ years, on pred for over 10 years - and while I have been down to 5mg successfully a few years ago, I need over 10mg to manage symptoms most of the time. PMR plays to its own rules - and they can be unpredictable.

[PMRpro Ambassador]

I agree with Snazzy - you need to at least speak to a GP. It possibly is a flare of the GCA because of the stress we are all under at the moment but a chat with the GP wouldn't hurt. Providing you can get at him that is!

[Sho-Sho in reply to PMRpro]

Also thank you for your advice & comments, it is very much appreciated.

[SheffieldJane]

Our husbands can bring the virus in with them. I tend to bark instruction like “ don’t put that there” and “ wash your hands again”. You may have a mild version. I feel, as you describe, in the evenings too and have wondered, but feel a bit dramatic because it is mild, there is a cough and sneezing, and aching legs - getting better.

If you are talking about a blood test for your inflammation levels, they don’t tell doctors much when it’s damped down by Pred. You could try an extra mg to see if it helps your symptoms. Some people are helped by splitting their dose because it tends to wear off too early. It didn’t help me at your level which I found the trickiest of all. Just trial and error. I eventually got to 3 mgs. I do get headaches of varying intensity every day at some point - possibly sinus.

[Sho-Sho in reply to SheffieldJane]

Thank you for the advice.

[Pippah45]

I have emailed my then my in the past which was helpful. I have also upped my dose a fraction on my own. As the others say CV could come in the house on packaging (and husbands but I don't have one!). I have several cardboard boxes in the front garden waiting to be dealt with! I put a book in the oven the other day and melted the glue holding it together! But I have read it ok! I hope you find someone to put your mind at rest. I ran a slight temperature a couple of days ago, these are not nice times.

[Sho-Sho in reply to Pippah45]

Thanks for your help.

[Pippah45 in reply to Sho-Sho]

That was supposed to read -- I have emailed my Rheumy! Sorry

[Sho-Sho]

Thank you for your help.

[Skysey]

Hi Sho-Sho.

I agree with other members of the forum. You could slightly up the pred until you speak with your rheumatologist. I was told by my consultant that if I have a flare, I can up my pred by 10 mgs and reduce it again in a few days. It certainly could be caused by all the stress you have experienced recently. I had a flare around two weeks ago and I had been under more stress than usual. I am slowly tapering my dose but still on 40 mgs daily at the moment due to the flare.Hope you get to speak to your medical practitioner to gain some further advice. Hope things level out for you soon.

[Sho-Sho in reply to Skysey]

Thank you - I am going to try & get hold of my doctor this morning. Do you have GCA or PMR?