Temporal arteritisGCA

[Eilidhmac]

Hi folks, I am having a bit of a meltdown as the Dr has sent for bloods and is organising a scan tdue to localised headache and scalp tenderness.as I guess everyone on here knows more than I do , I have a couple of questions should you be kind enough to help.

Firstly, I have had the same headache on and of for over 5 years…. It comes and then goes away again ….. is this possible with GCA?

Also, my Dr told me I had fibro but refused me a rheumatologist consult over 10 years ago, so I blame lots of things on that. I have episodes of overwhelming exhaustion and nausea and a flare of all the stiffness and migraine like eye pain which I called a fibro flare. After a few days I am off walkin2-3 miles fairly fast again.

Lastly( you will be glad about this!) if o have to take Pred I am so worried cos I already have osteoporosis, high blood pressure and glaucoma , also IBS . ( Not mentioning the aneurysm as the Neuro has discharged me now!)

Thanking any and all who take the time to read this. Sorry for it but I am super stressed!!

[PMRpro Ambassador]

Hi and welcome to this forum!

When you say the headache comes and goes - how long does it last? How often are the episodes? Are they accompanied by what you are calling a fibro flare or are they independent of each other?

It would be very unusual for GCA to grumble on like that but it is suspected that the autoimmune disorder can start up and abort quickly, never actually coming to anything. But there is no proof, just suspicion. I had a period of jaw claudication and scalp pain/tenderness but after some weeks it disappeared again - and back then I wasn't aware of the potential significance.

[DorsetLady PMRGCAuk volunteer]

Hi and yes stressful time for you.

It’s unusual that GCA headaches would go on this long and wax and wane over time without any other typical symptoms, but as I’ve just said on an another thread we never say never. So obviously best to getting ruled out…

Presumably you are taking mediation for the issues you mention… I had GCA and didn’t find Pred affected my BP unduly [already on meds].It did raise eye pressures a little at beginning, but they soon returned to normal. Are you already on bisphosphonates for osteoporosis - if so, then you may monitoring more.

But until you know IF you have GCA and need Pred, no point in getting stressed, and I know that’s easier to say than do… Hope you get some answers soon.

[Eilidhmac in reply to DorsetLady]

Thank you both for replying. I don’t have the localised headache when I have a ‘flare’ just feel sore and nauseous ( can’t stand reading) and fatigued. I do have scalp tenderness, which can be bad for a bit then disappears. Las time I felt the localised headache( on top right of skull) for a few days was probably a couple of years ago. I have had a Ct scan and MRI ( for aneurism) since then and numerous eye exams at the Eye Clinic.

I m afraid that I put most of my symptoms down to fibro ( my bad)! X

[Eilidhmac in reply to Eilidhmac]

Yes I am on Alendronic Acid and AdcalD3

[Gimme]

Others have commented on everything else, but I can tell you that my IBS has been a lot better since I have been on pred, certainly since I reduced from the initial higher dose and ditched the alendronic acid which did upset my stomach quite badly. I make do with vitamin D and calcium to protect my bones.

[Eilidhmac]

Thank you Gimme I’m glad that you have had something positive from the Pred…. As well as the fact that it is protecting you from this disease.

I was glad to get another reply as I know some people get lots and I was hopeful, but I guess my symptoms are a bit vague. I do have scalp tenderness but they have always nodded pitiably and said.. fibro. It is hard to know when to stop blaming the fibro and get something else checked out. Thanks again.

[PMRpro Ambassador in reply to Eilidhmac]

"I know some people get lots"

It very much depends on the subject and most people on this forum have PMR. GCA is far less common so a lot of people may not have read a post that only mentioned GCA in the title or didn't feel qualified to make a reply.

[Eilidhmac]

Thank you, I understand.

[Viveka]

For 12 years prior to GCA I had regular headaches like you mentioned, going into my L eye. Diagnosed as menopausal migraine. I haven't had one since starting pred 3 1/2 years ago, even on very low doses. The GCA headache for me was very low level compared to a migraine. It feels more like on the scalp than in it.

Hope it isn't GCA, but if it is, there are far worse things to have provided the eyes are ok, so try not to stress. I have glaucoma and it has remained stable. The high BP and osteoporosis can be tackled.

[Eilidhmac in reply to Viveka]

Thank you Viveka, I am quite stressed and “up and down” with “I definitely have it” “ maybe I don’t” To make matters worse my blood tests got cancelled today because of the computer chaos! 🙄

Thanks again for replying and for sharing your experience.

[Eilidhmac in reply to Eilidhmac]

Also, if I have had it for all those years what other harm has it done. 🥲

[KASHMIRI1]

Good morning I have just read your post and it reminds me of my experience pre diagnosis. I was told I had fibro a few years prior to my GCA diagnosis with headaches that became worse. In the end they turned into migraines. Like yourself I could do good walks in between times. It all came to a head at the start of covid when I felt so ill that I had to contact the doctor and was lucky enough to be sent for a blood test that showed my blood makers where over a 100. This was the start of my GCA journey.

[Eilidhmac]

Thank you for replying. I cannot get a blood test at the moment as the NHS computers are down here so I am very stressed and I expect that there will be a big delay come Monday as well😞

Can I ask, did you have episodes of utter exhaustion when you couldn’t do anything…. I have always called them fibro flares and did have bloods done once at A&E but not sure if they did inflammation markers.

How are you now and how is your journey with Prednisolone? Thank you