update since GCA relapse after pausing Actemra

[Kt1943]

Hi everyone, just wanted to give an update since my last post about having to,pause Actemra after having severe sepsis. Had appointment with rheumatologist this past week. I had increased to 30 mg prednisone, GCA symptoms of headache and scalp pain were gone but I still had pain in shoulders, neck and upper back. Since this pain was not cured with the prednisone the rheumatologist doubted it was PMR so ordered X-rays. She lowered prednisone to 20 mg for another month when we will re- evaluate and is starting Actemra infusion again (yea!!). X-rays showed severe arthritis in neck and cervical spine and other problems such as changes in alignment and stenosis so am starting physical therapy for that. In the meantime, just to add to the excitement, I had gone to the foot doctor about a sore little toe and he discovered I had an ulcer below a corn. He took X-rays to make sure no infection in the bone and (here’s the interesting part!) he announced that another toe which was bruised after I ran into the bed in my wheelchair was actually broken,! Didn’t hurt but now I am sporting a “fashionable” boot which doesn’t make transferring in and out of the wheelchair the easiest manoever! Never a dull moment but I am very happy to go back on Actemra and hope soon to be reducing my prednisone again. Thanks all for your help and advice during this latest flare. Love to you all.

[PMRpro Ambassador]

Hope it all goes well.

[Kt1943 in reply to PMRpro]

Thanks much

[SheffieldJane]

Wishing you well after all your trials and tribulations. 🌺

[Kt1943 in reply to SheffieldJane]

thank you. I feel fortunate not to have some of the trials that others relate. Hoping for good response to actemra😀

[Fatsiajaponica]

Just wanted to say thank you for the update, it's good to hear an update from people who have been waiting for results etc...stops us wondering how you are. Glad that you will be back on Actemra as that has worked for you and good luck with the physio. You are one resilient lady. Sending a hug.

[Kt1943]

thanks so much. Appreciate the hug!

[Grammy80]

Good heavens, you are a veritable juggler. I'd say that you have enough! You have such a wonderful attitude, and I wish you the best!! 💞

[Kt1943 in reply to Grammy80]

Oh Grammy. You of all people have had so much to put up with and your attitude has always encouraged all of us. I do hope you are weathering your latest “storm”. Thinking of you and sending love.

[Grammy80 in reply to Kt1943]

So unpredictable and maybe that is kind in a way. It may sound trite...but we don't have to look far to see bigger problems. This wonderful forum is 'home' to me and I never fail to get a lift from all of you. I saw the neuro-opthalmologist today and 'you are stable' is always good to hear. Little does he know~!😂😁🤣 He is bright and kind and will follow me every four weeks. No doubt he knows when it comes to the GCA, he is the one I have the most faith in...he really guards that right eye. So glad you have the 'stylin' boot.' 💞

[Pixix]

Sending hugs! Hope you feel better soon!

[Kt1943 in reply to Pixix]

Hugs are always so encouraging! Thank you!

[krillemy]

I hope you get through this. It's impressive that you've maintained such a great sense of humor

[Kt1943 in reply to krillemy]

Humor is the secret weapon!