Many of you have seen my updated posts in the past regarding my Mom and her diagnosis of GCA. This month marks 2.5 years from day of diagnosis. Today she was dismissed by her Rheumatologist. My Mom no longer has any symptoms of GCA and her blood work is all normal. There will be a six month follow up to make sure this remains the same and that's it. There is no crystal ball to let us know if GCA will rear its ugly head again, but positive attitude is going to make this time of being GCA free as enjoyable as possible.
Mom turned 84 last month, has only had 1 stumble (she no longer is falling), she has no body aches or pains, she is back down to her normal weight, and is feeling well.
This did not come easy!! It has been 2.5 years of a nightmare and to have witnessed her journey with this disease and to have helped her every single day to become stronger, stay positive, and never lose hope has been one hell of a ride! Blood work, tests, infusions, medications, Dr. appointments, and doing all the things she could not do while sick, and having my husband have my back financially so I could be home with her every day, ER visits, infections, hospital stays and more have been beyond challenging! Yet we didn't kill each other!!! <3
My Mom and I stopped her Actemra infusions in May this year. We both had agreed that after having been on them so long, and after having been off prednisone for a fair amount of time, we would stop them a few months prior to the Rheumatologist visit and keep an eye out for any changes that would be of concern.. None!
The Rheumatologist was beyond impressed, not only with my Moms blood work results, but with the way she looked, the way she was able to walk with no assistance at all, and her being symptom free. She was not thrilled we stopped the Actemra but ended up conceding she had considered having her stop them after todays check up. With everything looking so positive she politely dismissed my Mom from needing any health care regarding the GCA. She did tell us, as we already knew this does not mean it won't come back. But for today, all is well. And life is one day at a time! It was hard not to cry when the Dr. stood up and high fived my Mom, then came over to me, shook my hand, and said "you did a wonderful thing here"..
The Actemra in my opinion was the golden drug.. It allowed my Mom to taper off of Prednisone slowly, carefully, and without any ill affects.. Prior to the Actemra my Mom was slowly declining every day. If any of you have the chance to receive this medication, I would be more than happy to talk with you about the details of my Moms use of it.
I think of you all so often and wonder how you are doing. This group was beyond helpful to me as I came in here completely blind to GCA and found the kindest souls, who although they themselves were fighting this disease, took the time to share with me. I am forever grateful for all the advice, stories, medical input, and friendship you have shared. I pray that you all will find your way past GCA. That you stay positive, take help when it is offered, and learn to be ok that although it is a long, slow process, you can become well again..
Much love and many prayers for all of you!!
Joy
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Joyismami
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Your mum is so lucky to have such a wonderful daughter. I have sons, they are supportive up to a point, but are so busy and have very little time to spare. Your post was lovely and brought tears to my eyes. Hope all goes well for the future.
Congratulstions on this most wonderful news!! Both you and your mom are resilient people and the epitome of a team who worked together resulting in a positive outcome.
When I was first diagnosed with PMR I did some reading on Actemra, but alas it is not available in Canada for use with PMR (only GCA and RA). My health care benefits provider covers the cost, but given my diagnosis, it is not an option. So glad to hear it was a “golden drug” for your mom.
If I was there if hi give you both....your story is inspirational and gives me hope. I long for the day my Rheumy dismisses me!
Thank you ALL so much for the kind words! Having watched my Moms struggle with GCA, I completely get what you are all going through every single day and I do hope that you find some relief and hope with all the support given in this group. Honestly there were days emotionally I thought I could not be the caregiver any longer. I certainly got lost in my Moms world of ill health and at times felt I was losing myself, yet when I stepped back a little and took a breath, clearly she was the one that was fighting the real battle. Coming onto this website and reading every post, over and over again, hearing your stories, your comments, your trials and errors, saved me many times over.. It was my saving grace.. And although she is well today, I take nothing for granted. It could all change again in an instant. But to see how happy my Mom was when the Rheumatologist dismissed her, she didn't look like a sick 84 year old woman anymore.. She looked alive and happy.
What a lovely, encouraging and positive post. In addition to being a wonderful caregiver for your mom, you also have given many here inspiration with this post. So thank you!
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Preparation for Actemra infusion?
Actermra and Pred tapering.
35mg Pred after a year of GCA,PMR
Dosing Prednisone at end.
