Just read the stories of GCA March 22...I'm new

[Cobalt2sister]

I have learned so much thank you , and from stories have been looking at some past symptoms I had in new light. May be related to the GCA for which they are now treating me ( and pending recent biopsy results). Most recently visual disturbances (80 pred). Prior temple headaches into occipital, enlarged and bumpy temples. Very sore scalp, neck pain didn't think was related...from stories seems might be. No jaw claudication but toothaches on chewing ( twice dentist said there's nothing there) seems from stories might be related. Also only one night of night sweats, 3 waking with leg cramps, sudden new joint pain in knees, and all along terrible fatigue. In last year and half developed cardiac murmur ( echocardiogram ok), Sub ventricular tachycardia and 7 months ago two TIAs...have always been soooo healthy prior, oh also terrible postnatal drip ( good grief sound like hypocondriact!!) Only listing these as now wondering if some are all related to GCA??? What do you think and should I flesh out this list to my doctor? Oddly, though unrelated in past year had 2 concussions and covid along with TIA. But I'm doing really well, learning so much here and so much support. I am so grateful. I'm on 80 pred, prilosec, plavix, crestor ( name of drugs may be different in UK and US) babbling now ( maybe its the pred.) Thanks for listening?? Do you think some symptoms I thought not related are? Sending love and healing wishes to you all!

[DorsetLady PMRGCAuk volunteer]

These (IMHO) most certainly GCA related -

Visual disturbances

Prior temple headaches into occipital, enlarged and bumpy temples.

Very sore scalp,

Fatigue

Pain on chewing

highly likely -

neck pain

sudden new joint pain in knees

Possibly-

Cardiac issues

….so yes if there is any question on whether you have GCA - do make doctors aware of all these past episodes -if they aren’t already.

[PMRpro Ambassador]

Could well be - I "only" have PMR but I had several of those symptoms and I have an arrythmia that the cardiologist is quite confident is linked to the autoimmune part of PMR having damaged the electrical cells in the heart which govern heart rate. The arrythmia is always worse when I flare and is much less noticeable when I'm at a higher dose of pred - contrary to what many doctor will say. Pred shouldn't always be blamed for palpitations.I've had a post-nasal drip and constant sore throat the entire time I have had PMR and did have scalp pain at one point though it disappeared (can happen)

And there is an increased risk of stroke/TIA in GCA for about a year after diagnosis.

[SnazzyD]

DorsetLady has listed the main ones. I had all sorts of funny intermittent heart things, circulatory issues, hearing issues, short term memory problems, peculiar cramps, numbness in fingertips since chemo years before. After treatment for a few weeks they all stopped and never returned, apart from my hearing. Since then asking docs if they were all GCA related I’ve just had shrugged shoulders and on the fence opinions. To me the before Pred and after Pred evidence speaks for itself.

[PMRpro Ambassador in reply to SnazzyD]

I'm sure cognitive issues are mentioned in association with GCA - certainly is with vasculitis so why not? I had concentration problems and forgot stuff - improved loads with pred. And the atrial fibrillation started about the same time - very sporadic at first but increasingly noticeable as time went on.

[SheffieldJane]

Take a good Magnesium supplement for those cramps. We get low on it, it will help with sleep too when you get to a lower dose. It really does seem fairly text book with you doesn’t it? We all have our little unique variations though. Build in a regular nap after lunch to make the fatigue more bearable. Proper go to bed, curtains closed, no devices. It’s a life saver.

[Cobalt2sister in reply to SheffieldJane]

Hi...have been on magnesium and b2 for migraine. Guess what just got my biopsy results and negative despite classic symptoms. Results came through the health portal so haven't spoken with my Dr yet but I think she must continue to treat as if GCA especially with those visual episodes!? What might she do. I almost wish it had been positive just for clarification. Hmmmm

[PMRpro Ambassador in reply to Cobalt2sister]

As long as she knows that a negative result doesn't mean there is no GCA - it means they didn't find it which is a very different thing. Now she must treat on symptoms and clinical history.

[DorsetLady PMRGCAuk volunteer in reply to Cobalt2sister]

As we have said many times -biopsy very often comes back as negative- when GCA is obvious in all other aspects. Problem is, affected cells are not uniform throughout artery, they are scattered randomly so if they are not present in the sample taken it gives a false negative. Plus if you’ve been on Pred too long the cells may well have returned to normal. Some doctors know this, some don’t!

Hopefully she will take symptoms into account and continue to treat as GCA.

[Cobalt2sister in reply to DorsetLady]

Hi. I was within time frame to not have prednisone effect biopsy. I see my Neuro pharmacological Thursday but in meantime she emailed me " biopsy looks good no sign of GCA" I wrote back regarding 40% chance of still having GCA with negative biopsy but she replied " yes, theoretically but not likely but to stay on 80 pred til I see her thursday. You know you wonder given symptoms what could it possibly be if not the GSA ...I still think it is. I will report back to you all thursday. Thanks for responses and thanks for listening...it so helps me get it off my chest while I wait...

[DorsetLady PMRGCAuk volunteer in reply to Cobalt2sister]

As I said, some doctors know…..Think you need to push on what she thinks it is then!

Good luck with appointment, and hope you get a sensible outcome……

[PMRpro Ambassador in reply to Cobalt2sister]

It depends on the index of suspicion due to symptoms, clinical picture. But she does seem a bit naive ...

[SheffieldJane in reply to Cobalt2sister]

She will carry on treating you on symptoms. Either they took a biopsy from the wrong section of the biopsy or your Prednisalone had already changed the inflammation.