Thank you: Thank you all for your helpful replies... - PMRGCAuk

PMRGCAuk

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Thank you

DeliaGray profile image
4 Replies

Thank you all for your helpful replies. 30028 and Beringer, nice to know you are in California, and I will be contacting you. However I am really sick at the moment with my annual allergy attack, and have lost my voice. { Some people are happy about that.!!!}

Anyway, I have a consultation this morning with my new Dr. and I am thinking that I am going to try the new drug. Since my father died as the result of an aortic aneurism I am concerned that it doesn't happen to me due to a long use of steroids. I understand that I will still take the prednisone along with the new drug, but that results so far have shown earlier remissions of GCA with no flare ups. Worth a try I think.

You all have a wonderful day.

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DeliaGray
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30048 profile image
30048

Good luck...keep us up to date on how you are doing.

30048 profile image
30048 in reply to 30048

i hesitate to mention this as it is in the side effects on Actemra but I had skin cancer removed from my forehead previous to my infusion and it returned and I had the MOHS method when it was removed for the second time. My assumption was that the previous removal had not gotten it all BUT my new doctor gasped and said..."that was the actemra".It is listed as possibly causing cancer but it does not state what kind and it is dismissed as a likely side effect. I would at least have the discussion with the doctor.

Celtic profile image
CelticPMRGCAuk volunteer

Delia, it is recommend that everyone with GCA has a chest X-ray every 1-2 years to rule out aortic aneurism. You may already be aware of this, but in view of the sad experience with your father, I thought it worth mentioning.

DeliaGray profile image
DeliaGray

Thank you, I had a chest X-ray last June at the time of my PMR and GCA diagnosis. It was clear and I have another scheduled for 2 weeks ahead.

Feeling a little low today as I am suffering with my annual bout of allergy problems. I am forcing myself to rest this weekend as I am really sick, but rest doesn't come naturally to me. I am canceling my trip to England in July although I lose a lot of money, but with all of the fluctuations in my recent lab tests I do not feel confident enough to do it right now. Bummer!

This does not feel like a day when I can see the light at the end of the tunnel. But I know it is still there.!

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