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
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Joyismami
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Although you think Pred is the demon drug, and for your mum it’s seems to have been, the dose she is on now is very low and highly unlikely to cause any problems although it may still be doing her good, so don’t push too hard to get to zero.
If she still has GCA lurking then she may still need some to see her through, and at 2 years that’s very likely. Mine for example lasted 5 and a half years, and that’s not exceptional, but hopefully she may be one if the lucky ones that get through quicker.
Oh Joy what an uplifting post. You obviously care for and love your mum so much. Well done for supporting her so admirably through this difficult time. I know, from experience, just how challenging it must have been at times for you as caregiver of a loved one. You are both so fortunate to have each other. Long may you continue to enjoy time together, with mum feeling well. Best wishes. X
Lovely to read a good news post, it always helps the rest of us who are down a bit because of our conditions. Thanks for sharing, take care & well done 0n being a mums best friend.
Keep up the optimistic and loving attitude. Your listening to HER body is quite a gift. She must have been a very good mother to have raised such a loving daughter.
So pleased for you both that you seem to be seeing the end of the tunnel. What a journey this has been for both of you and what comes through is the love, care, commitment and perseverance. You're on the home straits now so don't rush it! Best wishes to you both and thanks for sharing. Jackie xx
Thank you all for your kind words! I appreciate them all so much! I only did what came naturally and felt right.. My heart has always been with those who are elderly or ill, ever since my first job at 16 years old in a local nursing home. I worked there until I married and had my first Daughter.. I saw too many elderly people who were not well and alone. Being with them everyday they became like family to me.. It was the little things they wanted in the last years of their life that would have been so easy to give.. Visits from family, cards or letters, or a tube of their favorite lipstick.. They lose so much growing old.. Not driving, unable to cook or clean for themselves, and finally unable to take care of themselves, it saddened me when family just left them there.. I made a promise to myself way back then I would never ever do that to my Mother.. When my Grandparents went into that same nursing home many years later, with two small babies in tow, I was there every single day to feed them dinner at night.. My children grew up in that nursing home seeing real life and that it was good to have compassion.. Something they have carried with them into their careers and in their lives.. It's a good feeling to help people.. A great feeling, because the smallest thing can make the biggest difference in someone else's day! I can't be with you all, but I certainly am keeping positive thoughts heading your way, as I know how awful this disease is up close and personal.. Don't give up.. Fight when you can and rest when you need to.. Praying there will come a day when all of you feel the best you can be!
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