GCA/facial nerve drop/double vision/blood levels normal.

[Mar-jay]

I am having problems again. GCA now over 5.5years. 4 weeks ago left side if face dropped. Lasted 5/6 days. Went to GP possible Bell’s palsy . My vision as starting to get more blurry. Then I got double vision and possibly triple vision. Ended up speaking to rhuemy at whittington/urgent care. Then sent to urgent eye clinic royal free Hampstead. Facial nerves 6/7 possible inflammation. Prism put on glasses. Back to Whittington urgent care, brain /neck scan, brain MRI, my bloods all normal as usual. Preds upped to 40. Back at urgent eye care on 10 th March. Eye vision much better . I couldn’t drive watch tv read. Felt sick in car. Too much movement around me was difficult. My other usual symptoms of GCA appeared. Top of head really sensitive, left jaw, tongue, headaches and body aches. I for some reason ignored them as I usually do. Why the hell are my bloods so normal when I have this

Even when in the beginning I was having vision loss

Because of eyesight problems it has really frightened me. I have new rhumy gp and he is putting me in for some drug at UCLH? Before a panel? He didn’t tell me what yet just I will have to inject. Needle phobia! Methotrexate @ 15 p/w.

Just to add more to the mix re head neck, I’m waiting on surgery at queens sq neurological hospital. C2To C7, T1 then when that’s healed pelvis and lumbar. I think it’s repair/ replace and compression release. I get lots of head pain coming up shoulders /neck to back of head. Tingling/numbness down arms mainly felt one. Also. Both knees torn meniscus. Oh ! I nearly forgot, CFS, fibromyalgia and Aspergers (my inability to seek help until it’s nearly too late, not being able to recognise there is a problem. Also now heart problems fluid and something else.

Because of all these meds I feel like I’m falling apart. Where do I go from here. Thank you your time in reading this.

[PMRpro Ambassador]

Out of interest - what makes them think it is Bells Palsy rather than a TIA/ministroke? I assume that was ruled out? Has no-one connected the C2 to C7 problems with many of these symptoms?

I imagine you are being put in for the use of tocilizumab either under the NICE criteria or on an individual patient basis. It is a biologic that has been shown to reduce the need for high steroid doses in GCA.

[Mar-jay in reply to PMRpro]

Thanks PMRpro for reply. They no longer think it’s Bell’s palsy. My biopsy for GCA was after 3 1/2 weeks being on 60mg preds. It was negative. And apart from the bloods I have nearly all the symptoms. In the beginning I was loosing sight in left for short spaces of time but it came back each time. Tongue, jaw, top of head, temples headaches and the rest of the aches around my arms/shoulders . Within 30/40 hours of starting pred I couldn’t believe meds could be soo good! I felt like spring chicken!

I still don’t know how to use posts replies on this site. I just wait till something comes up on my emails then click.

[PMRpro Ambassador in reply to Mar-jay]

If you want to make a post of your own, scroll to the top of the page where you will see a blue box with a pen icon and Write. Click on that and a page comes up with a box to put a title and another box to write your post - almost the same as writing a reply. But you managed that once anyway!

If you want to see what other people say on a thread you liked, click on the box under the post which says Save Post and then you should get email notifications of them too.