I have to admit this was a ride I was not sure I could take with my Mom! Some of you will remember my posts of the battle she faced with her diagnosis of GCA.. I want to start by saying that as I thought, most, if not all of her worst symptoms were caused by the large doses of Prednisone. I had prayed this would be the case as it was so hard to watch her failing at a pretty steady pace, one thing after the other.. Her biggest challenge and scariest to date episode was that she had a UTI that went septic. After 4 days in ICU, she was coming around, but I really believed she would just continue to spiral downward. She does not remember any of the time she was in ICU but knew she was weaker than ever at this point. Again I took her home and we continued on, her routine of struggling every day with some ache or pain she had never had before. As always I continued to be positive with her and at times I had to reiterate that if she wanted to get well, she had to work hard at it.. She had a walker to start with and I took her walking every day, some days not more than a few hundred yards, but a little something to keep moving.. She is no longer using the walker at all. If you remember I was very concerned about her shortness of breath, something she had never had before the GCA. None of her Doctors seemed too concerned, but being asthmatic myself I really have a hard time seeing anyone struggle to breathe. She has continued the Actemra infusions once a month and I am slow tapering her, going down 1 mg a month on the Prednisone.. I can't say enough about how much the Actemra has done for her in getting her away from the Prednisone. When I got her down to 5 mg. I was worried as she started to have a headache so I had the Dr to a complete blood work up and they also did an MRI to make sure it was not something else causing the headaches. All her test levels came back completely normal.. She is now down to 3 mg of Prednisone a day, and I am so looking ahead to the new year, fingers crossed, praying, that she will be off this drug!! She is almost at 100% of where she was prior to the GCA. She is active again, is not having any problems breathing, has no aches or pains in her legs anymore, climbs stairs, and like before, has more energy than most 83 year old people.. It is almost two years since she started with the symptoms of GCA and what was a myriad of symptoms from the disease, but worse the symptoms of the drug used to treat it.. I wanted to share that there is hope for all who suffer from this horrible disease.. I believe a positive attitude and listening to your body, even when it makes you angry, are major assets in fighting this..There were days I just had to get away from it all, ride to nowhere and cry it out.. It is so hard to watch what this disease does, you just feel so helpless. I still fear a relapse for her, and I probably always will. I don't feel she is out of the woods yet, and she may never be.. But to have her back again, feeling so well, is a pretty great feeling.. So I continue to take it minute by minute, hope and pray for the best, and know that if nothing else, we both worked hard to get to this milestone.. This forum was loaded with information and advice and I would have been lost without it.. GCA is not your average textbook illness and whether you know it or not, you all shared yourself with me and made me an informed caregiver.. I pray you will all get to the point where you feel well again and I look forward to hearing of your successes and if you trip up along the way, keep going for it! I know that I am anxious to have a "Prednisone Free" celebration in February for my Mom! I think she deserves it! Thank you again for being a part of this great forum!
Joy
Actemra; The elephant in the room. Is it working or not working for you?
Actemra Advice and Help!
