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

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GCA or not update 4

Marlenec
Marlenec

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

16 Replies
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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. 👋

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 🌷

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

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.❤️💐

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?

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

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

Marlenec
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
PMRproModerator
in reply to Marlenec

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

Marlenec
Marlenec
in reply to PMRpro

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

Thank you Pmrpro.

PMRpro
PMRproModerator
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
Marlenec
in reply to PMRpro

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

PMRpro
PMRproModerator
in reply to Marlenec

Fail!!!!!!!

Marlenec
Marlenec
in reply to PMRpro

Yes, I feel he's failing me!

Thank you very much for your input.

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.

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.

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