The plot thickens - unexpected turns

[VickySponge]

So appointment with ophthamologust today and whilst i am waiting to see the doctor, my rheumatologist turns up to find me. What an unexpected thing to happen!!!

He explains that he wants to know the outcome of this appointment to decide what to do next. At my invitation, he joins me in the appointment and explains his interest to the eye doctor !! The ophthamologist was a lovely older lady. She explained that vision is back up to 6/6 in each eye and she could not see any haemorrhage on the optic nerve but the right eye is not in good health. I have no trace of CRVO (Central retinal vascular occlusion) but, in her view, it is Hypertensive Retinopathy. No advice from her on what to do about this except another follow-up appointment in 3 months. I will discuss this with my GP. I am not in the diabetic range, my BP meds have been upped and I monitor this; cholesterol is OK and in any case, I cannot take statins.

The rheumy explained that in his view my GCA was not currently active but it had been present initially. She was happy to agree that the GCA was not active though its diagnosis could not be ruled out. The Rheumy wants me to drop back from 40 mg pred to 20 mg pred tomorrow as the steroids maybe making the eye worse. Then to taper by 2.5mg every 3 weeks. I am interested in any thoughts here.

I asked them what to do about the continuing debilitating headaches. I explained that because I am under spinal consultant for neck issues, I have made an appointment for follow-up as this guy had suggested trying a nerve block to see if that sorts out the headache. Rheumy felt that was a good idea. He suggested referral to a neurologist if that does not help. I requested that this is done immediately to avoid any more delays and thankfully he agreed. He also said he will arrange for a head scan.

I have several thoughts going on in my head about next steps , some of which are in opposition, and would be interested in what others think.

[Grammy80]

Did I miss it, Vicky, have you had bloodwork to check your markers; ESR & CRP. Many are living proof that symptoms trump markers; at the time of my recent flare-up of GCA, my markers were normal.

I let out a loud YES!! when I read that your opthalmologist and rhemy are so coordinated and the rheumy is interested in listening. When I flared, it became clear the rheumatologist would be taking his cue from the neuro-opthalmologist regarding tapering. I'm no doc, but any time I taper, anytime, I've always stayed on the new dose for a month; I know this isn't as important when the dosage is high....and the more experienced will be along.

Have they done an MRI? Do you know what is causing these headaches before you have a procedure to block the pain? I can only imagine how debilitating they are. My very best💞

[VickySponge in reply to Grammy80]

They don't test ESR at my hospital - they use CRP and Plasma Viscosity which were both normal on Monday. Vascular ultrasound on Tuesday showed no signs of GCA. The sudden drop in steroids is worrying. Plus I have concerns that the eye results from the optician on Monday were worse than in eye clinic yesterday. I guess that could be down to the scans being superior .

[HeronNS]

Sorry I can't offer any useful advice, but what you are probably already thinking, halving your dose of 40 mg to 20 mg overnight seems a bit, I don't know, brave? foolhardy? GCA may not be active (because you've been on high dose pred?) but it hasn't been ruled out. Hope you get some experienced advice before you have to start carrying out the plan. 🍀

It is excellent that the specialists are talking to one another and keeping you in the loop! I don't know how often that happens.

[VickySponge]

I am feeling that I have to trust the rheumy and be very watchful. Something is not right but it could be due to other reasonds than GCA /PMR.