GCA or not update 4: I had my phone appointment on... - PMRGCAuk

PMRGCAuk

20,121 members37,704 posts

GCA or not update 4

Marlenec profile image
16 Replies

I had my phone appointment on Monday with my rheumy consultant. Still on 20mg Prednisolone, he's decided not to reduce yet as my bloods are abnormal. CRP 11.7, Neutrophil above high limit, Lymphocyte, Monocyte and Eosinophil all below low limit. Consultant thinks could be an infection so doing bloods again on Monday. Jaw and tongue claudation not returned, just very slight headache right side but much less energy. The consultant said that under normal circumstances (no corona virus ) he would have me in for repeat ultrasound to see if halo still there. Next appointment in 2 weeks but have to ring if other symptoms return. Sarah Mackie will do second opinion, just waiting.

Stay safe everyone x

Written by
Marlenec profile image
Marlenec
To view profiles and participate in discussions please or .
Read more about...
16 Replies
SheffieldJane profile image
SheffieldJane

I am in limbo too. Sarah doesn’t want to prescribe a Biologic during the Corvid 19 Pandemic. Her letter to my GP did say GCA ( but not TA). She is postponing a second Ultra-Sound Sigh! Keep safe. Not ventured out for 2 weeks and the foreseeable ...... 🌳. Got a cold to add to my joys. 👋

bunnymom profile image
bunnymom in reply to SheffieldJane

Hope it's nice enough you can get in your garden for a bit Jane. It's supposed to be nice here today after lots of cold rainy days. I just got a new bunny named Peter who has brought some joy to our home. Better days ahead as always 🌷

SheffieldJane profile image
SheffieldJane in reply to bunnymom

It is a beautiful day here. I welcome the pin drop quiet but I can tell my neighbours are getting restive. I hope we can all hold out. It is much harder for extroverts who get their energy from others, I need solitude to recharge my batteries ( always have). Love to you and Peter Rabbit. 🐇 x

Marlenec profile image
Marlenec in reply to SheffieldJane

Hi Jane it's a nightmare isn't it this not knowing. Although I'm convinced I do have GCA as tongue and jaw claudation completely gone. If missing teeth was making my tongue ache it should have started 3 years ago and would only be on one side. All my symptoms started within 3 weeks!

Hope you get sorted soon. Take care.❤️💐

SheffieldJane profile image
SheffieldJane in reply to Marlenec

You take care too. I face another US too, to confirm it. I am still taking only 4 mgs but with permission to go up to 40 mgs if I experience classic Temporal Arteritis symptoms, like yours. It’s a worry but these are extraordinary times. Thinking of you. PM perhaps?

Marlenec profile image
Marlenec in reply to SheffieldJane

Yes, lovely . Just going for our daily walk to feed swans and ducks. Will pm soon .❤️

PMR2011 profile image
PMR2011

Wait, did you say if halo still there? I’m confused, isn’t that a positive ultrasound?

Marlenec profile image
Marlenec in reply to PMR2011

Yes I thought so too but Rhuemy consultant thinks may be a mistake!?!? If you feel like a bit of reading 😬 See my earlier posts. Thanks for replying Pmr 2011.

PMRpro profile image
PMRproAmbassador in reply to Marlenec

Did he do it or an experienced u/s operator?

Marlenec profile image
Marlenec in reply to PMRpro

It was done at the Research Centre, Chapel Allerton Hospital by Kate Smith, Sonographer LBRC.

Thank you Pmrpro.

PMRpro profile image
PMRproAmbassador in reply to Marlenec

Think your rheumy is being a tad sceptical about the skills of the operator - I wouldn't suggest it was a mistake out of that stable!!!!

Marlenec profile image
Marlenec in reply to PMRpro

Yes, I strongly agree, he disregarded the US in favour of the negative biopsy.

PMRpro profile image
PMRproAmbassador in reply to Marlenec

Fail!!!!!!!

Marlenec profile image
Marlenec in reply to PMRpro

Yes, I feel he's failing me!

Thank you very much for your input.

sharonnorfolk profile image
sharonnorfolk

I had another ultra sound and yippee no halos. He was a bit bothered as both levels are raised. Said to go back in a month, I then got an appointment letter saying 20/4/2021. When I rang the hospital I think the poor woman had just given up, She had no idea what was going on, just put a note on my record. By the way, my surgery rang today and because I am on Pred , even though I am doing a quick reduction, I have to go onto the next of isolation. Shielded, so I cannot even go to the shops or chemists. Have to laugh, at least being on my own I have the whole house to myself. ;)

Don't think that is much help but it is another story, so might help. Hope you will be ok.

Marlenec profile image
Marlenec

Hi Sharonnorfolk

Well good news that no GCA . Hope you don't have any symptoms of Covid and isolating just as precaution. Make sure you have people to shop for you. There's lots on here under Covid. Keep safe.

You may also like...

GCA update from California

I had a consult with new rheumatologist. He agrees to skip arterial biopsies and based on recent...

GCA or steroid effects update

I suspected, a flare. I am now back up to 20mg with a blood test booked for the 13/9 to monitor...

Update on possible GCA

rheumatologist in six weeks. I will have another blood test in two weeks. I can’t tell you how much...

Update on my scan for GCA flare

afternoon, scan arranged for Monday morning together with consultation and all sorted (hopefully).

Update on my first year with GCA

have chronic fatigue and my rheumy has arranged for me to see another consultant so I can have my...