Saga continues.....and continues....

[Kern1410]

Hello all!

So....back on old brand of pred- today will be day 4 of 50mg but thinking of dropping to 40mg? I have 20mg pills - so doing 45mg would be tricky. Still have issues - high blood pressure, some chest pressure today, jitteriness, new one this morning - dizziness (my least favorite!)

Went to the eye doctor yesterday. Saw 2 doctors - I was rather a novelty!! They seemed to be thorough and at least informed about GCA but both say I do not have it. Everything in the eyes looked great, peripheral vision was great, check my pulse in head and neck for bruits (sp) everything sounded good. Of course they said I was too young, I dismissed that, he had my labs sent over. He said he usually does a biopsy if 2 or more markets were elevated - he said only one was very slight. He is worried about the pred without enough evidence and wants me off. I asked then why the severe eye pain when it went down to 20mg?? He said migraines. Which would tie in to why my GP wants to send me to a neurologist.

Thoughts?

[PMRpro Ambassador]

Seems about the only thing you can do really.

[SnazzyD]

Well, it might be migraines but I would want to ask them how they can tell from your eyes whether the GCA is in other cranial arteries not affecting the optic nerve. It doesn’t always settle there. I would also like to ask why they are not considering that you may be one of a significant minority who don’t have raised markers at all.

Is it usual for migraine to be eased with Pred only to come back when the dose drops? Sounds like familiar behaviour of GCA.

[Kern1410 in reply to SnazzyD]

I agree. I have the MRI on Saturday. At this point I would have been on pred for almost 2 weeks. I guess the MRI could only show a blockage now? The inflammation would be down - correct?

Still need to see rheumatologist and cardiologist - need to keep shaking the trees!!

[SnazzyD in reply to Kern1410]

If you’re feeling like a lengthy paper to read about MRI for this and large vessel vasculitis try this.

ard.bmj.com/content/annrheu...

If you don’t, somewhere on page 4 is says imaging of cranial arteries should done within days of starting steroids to avoid false negatives. A biopsy would be the same, though some docs say it can be a few weeks. Happy tree shaking.

[Kern1410 in reply to SnazzyD]

I think at this point it would be to rule out any blockages. This thing is all over the board! I just got out of the shower and my left eye is starting to act up!!! Why!!!! 😑

[DorsetLady PMRGCAuk volunteer]

Ask for 5mg tablets, you are going to need them anyway - and easier on the body!

[Kern1410 in reply to DorsetLady]

What do you mean? For the MRI? I’m currently on 50mg daily - but MRI’s stress me OUT!! I’m am worrying about going in that tight space - ugh!! 😬

[DorsetLady PMRGCAuk volunteer in reply to Kern1410]

Not sure if you meant this reply for me, but I meant ask for 5 mg tablets for reducing in general.

Plus if you have an MRI soon I wouldn’t decrease until after that’s been done. As you say it’s stressful - but the thought is worse than the actual procedure!

[Soraya_PMR in reply to DorsetLady]

“As you say it’s stressful - but the thought is worse than the actual procedure!”

Not for me! Claustrophobic! Last MRI was on the verge of panic for nearly an hour. I have to talk to myself very strictly to prevent myself running away, and my eyes are squeezed tight, if I was to open them momentarily I’d probably scream and start thrashing! Not ideal for a good MRI ‘keep still’ scan 😳😳😳

[Kern1410 in reply to Soraya_PMR]

Me too!!

[Soraya_PMR in reply to Kern1410]

See if they’ve got any eye masks, like sleeping masks (no metal) or take one with you. Really helped me last time because I’m always worried my eyes would flick open and that would be the end of that MRI!

[SnazzyD in reply to Soraya_PMR]

I decided after my first MRI if I ever have to have one again, that’s what I’ll do, wear a mask

[PMRpro Ambassador in reply to SnazzyD]

I can recommend having a transient global amnesia to be unaware of the downsides of MRIs or CTs ...