GCA

[patsy53]

Diagnosed GCA in July. Started with 60 steroids now down to 8. I have been having tingling and numbness in my head. Although these are becoming less frequent. Rhuemy ordered a CT scan which I had on 18 December. I heard nothing until Thursday when I received a call from rhuemy but my mobile went off before i could speak. The viocemail just said she wanted to speak to me. Then on Friday evening i came home from work there was a letter from hospital with an sppointment for a MRI scan in a weeks time. Have any of you had a MRI scan because of GCA and what would scan be looking for. I just feel a bit anxious. Look forward to hearing your comments

[Runrig01]

Hi Yes, I have had MRI and an MRA of the head, but mines was to look for GCA as the biopsy I had done had been negative, but GCA symptoms continued.

It is possibly just to get better images than they were able to get with CT. try not to worry. you could call your Rheumys secretary in Monday for further information.

[patsy53 in reply to Runrig01]

Thank you for quick reply. I have to phone on Monday to confirm i will attend the appointment and I shall speak to secretary. Again..thank you

[bert403]

Hi...I also have GCA, was diagnosed in Sept 2014... Started on 60mg, it is now almost 1yr 5mo later and finally down to 10mg. Had one flare up along the way and at that time I was down to 17.5 and had to go back to 40. Since that time I have tapered much slower. As of now I am on 10mg for 3 months and hoping to taper to 9.5 and then to 9mg. will probably be on that dosage for a while. As frustrating as it is, it is better than going back up. I think you have tapered way to fast. My CRP has been slightly elevated lately, but Dr's decided to continue a slow taper as long as symptoms are under control. Good luck.

[Anna135]

Yes, I had an MRI done, although it didn't show anything.

[DorsetLady PMRGCAuk volunteer]

Hi Patsy,

Diagnosed with GCA in April 2012. Did have a MRI scan, but not for GCA, for OA in shoulder. Procedure is nothing to worry about.

Am a bit surprised at your very quick reduction. Maybe the dosage of Pred is not quite enough to control the inflammation associated with the GCA and that's what your

Rheumy wants to check?

Hopefully you'll soon get an answer.

[Nap1 in reply to DorsetLady]

Hi. Think you reduced much too quickly. I was diagnosed in July of 2015 and started on 40 then went to 30 after a month and then to 20 Had to go back to 40 and now it's 30 and 35 every other day. If blood test ok Tuesday then I'll go to 30. Since having relapse of GCA I am being very conservative. Hate what I feel like and what I look like. Must stay one step ahead of this disease. My relapse was indicated by my blood. Symptoms didn't come on because I upped the pred. I am lucky my blood numbers go up first. Please be careful. This is a serious disease and proper medicine doses are important. Good luck to you.

[Caro12line]

Hi. I have GCA diagnosed Jan 2015. Started. 60mg and now tapered to 7mg. I think maybe your taper is too fast? My GCA was diagnosed with a PETCT scan after a negative biopsy. My GCA is in my Aorta Arch and Subclavian arteries, it still puzzles me how my first symptoms were head pain. But since initial diagnoses I have not had to have another scan, Ruemy says I am in drug remission although my CRP and WBC are higher than normal. But as most of my bloods for everything are always high or low normal we go by different markers "normal for me" readings.

[PMRpro Ambassador in reply to Caro12line]

If the subclavian artery is narrowed due to inflammation then it could affect blood flow to the head - and other further arteries could be slightly narrowed too.

[Caro12line in reply to PMRpro]

Thank you PMRPro... I am sure you have mentioned this before (Subclavian Steal) but I forgot! Sorry Pred brain rules! 😊