Light headed. Could it be a flare up?

[luv2read]

I saw a post earlier from someone who was experiencing some light-headedness. Last Wednesday night I experienced a headache with some temple tenderness and some jaw pain. Thursday I did not feel good, but Friday and and Saturday, I felt fine. This morning I am so dizzy that i had to send my husband to the grocery store because there was no way I could have gotten behind the wheel of my car to drive. I feel like I went on a bender last night and I'm paying the price. I wish I could explain better on how it is that I am feeling. Almost like an out of body experience with zero gumption to do anything. I've never experienced a flare-up for my GCA, but wondering if this is what this is. I'm not scheduled to see my doctor until the end of the month but I'm thinking that I should call tomorrow morning to let him know. Can someone tell me what a flare up feels like. I've been down to 5 mgs of prednisone for a few months with really no problems ( ie, adrenal issues). I'm dreading going back up on my dosage because I was doing so good. I thought if I had problems with my decrease of pred, it would have hit me a lot sooner than now.

I'm thinking that my doctor will order blood tests to check my sed rate. Can that come back normal even though I might be having a flare-up?

[PMRpro Ambassador]

It can take a while for the inflammation to build up enough to cause problems and a flare due to a return of disease activity can happen any time. Sometimes the sed rate can lag behind a return of symptoms in a flare so it isn't entirely reliable.

Is there any chance it could be Covid? The symptoms could also be an ear inner problem. I think it needs a medical opinion.

[luv2read in reply to PMRpro]

I have not thought of Covid. Since it feels very similar to what I experienced before they diagnosed me with GCA, my first thought was flare up. I have no symptoms of Covid that I know of other than the no energy. I'll see what my rheumy says in the morning. I will double check with him about a possible Covid test. Thank you so much for your quick response! I know people tell you this all the time, but you and everyone else here is a tremendous help and you always make me feel better. I can't thank you enough for everything you do.

[SnazzyD]

Have you thought of a Covid test? The symptoms are far more varied than the UK gov site suggests. No idea why they haven’t caught up because it is widely accepted by those who are experts now eg ZOE study, that there is a wide variation. Others on Covid chat groups say that old problems or injuries seemed to flare up with Covid.

Also, have a look at sternokleidomastoid pain which can mimic GCA but doesn’t make you dizzy.

Have you have any extra and/or extended stress such that an ok adrenal function for the purposes before is no longer up to the job?

[luv2read in reply to SnazzyD]

No added stress except worrying about this being a flare😕

[Telian]

A flare comes on for no reason ie you’re not tapering. If you are tapering symptoms similar to your GCA symptoms come on on the day you taper - they usually go after a few days.

If you’ve been on 5mg for a while it could be a flare - meaning you’re not on enough pred for your level of inflammation.

If that’s the case try a few more mgs of pred and if you feel better that’s your answer. You should stay on that dose until all symptoms have settled before trying a small reduction of 0.5mg.

At 5mg your adrenal glands could be trying to wake up also and that can cause unpleasant symptoms including dizziness.

Either way speak to your Doctor/Rheumie to let them manage it with you. You can’t take potential risks with your eye sight.

I can only reduce by 0.5mg at a time now and it takes 7 weeks minimum to get down to the next dose.

[luv2read in reply to Telian]

I too take quite a bit of time tapering down. My doctor is very stringent about that. It has taken me two years to get to 5 mgs. I haven't done the math, but it seems like forever.

I was not aware that my eyesight could be at risk. I only thought that happened early on and because I never had an issue with my eyes on the onset of my GCA, I assumed it would not happen. Just to clarify, no-one told me that, I just assumed. I learn so much here, it boggles my mind that I've made it this long with thinking I knew everything I thought I would need to know, but something else ALWAYS comes up. Thanks for your response..

[Telian in reply to luv2read]

If your GCA flared then the risk remains.

I get headaches after nearly 7 years with GCA/ PMR. I recently had a PET scan, which showed no active LVV, Large Vessil Vascullitis, meaning my eyes weren’t at risk. I still have PMR symptoms and difficulty tapering second time around after a flare.

Basically listen to your body and don’t ignore symptoms.

[DorsetLady PMRGCAuk volunteer in reply to luv2read]

Issues with eyesight is always a possibility - although much less likely once you have started Pred, and of course on the correct dose required for your illness activity. So it’s something you should be aware of, but not paranoid about.

For some unfortunate people sight loss does seem to come ‘out of the blue’ - but actually I think the illness has been brewing for some considerable time (or if already on Pred, escalating) without anybody (patient or doctor) realising.

In my case from first ‘twinge’ of pain to sight loss (obviously with no Pred) it took 18months....not exactly overnight as sometimes quoted........but the actual loss of sight took a matter of 4 days.