The latest update on my Mom. She is a week of being Prednisone Free. THAT was one very long taper ( 1 year, 8 months ) which was very close to her Doctors thoughts that it would be about 2 years. Mom continues to receive the Actemra infusions every month, and at this point we are all unsure as to when those will be discontinued, if at all. All of Moms blood work is normal at this point. It is still so early only being 7 days away from the Prednisone, but she seems to be doing very well.
Since my last update she has had Bursitis of the left arm, requiring one cortisone shot and she has been pain free since about three days after that shot. Hopefully that worked!
Her biggest problem always has been even before her GCA diagnosis is UTI's and dehydration. Getting her to drink any fluids is a real job! She says she is never thirsty and thinks it is ridiculous that anyone should need to drink so much fluid..
All the aches and pains she felt while on Prednisone have disappeared, most were just minor annoyances she said around the time she was down to about 3 mg a day.
She is no longer sleeping all the time, although she is not full of energy by no means, but I do hear her running her own vacuum quite often!! She can make it through grocery shopping with much less fatigue and at 83 years old she moves faster than I can at times!
She lost a good portion of the appetite she did have, around the 3 mg a day mark as well. She is no longer eating everything and anything and has lost about 7 lbs., which I think was the last of the Prednisone bloating she was carrying around.
She has weakness in her right leg, but that is being chalked up to the fact that with the GCA and feeling so ill, she was absolutely almost inactive up until recently. She has been dizzy a few times but again that is the dehydration setting in.
I pray that all of you are well and that you are working towards that light at the end of Prednisone and all the ugly symptoms is brings.. This has all been nothing short of a nightmare and I still worry if it will all rear it's ugly head again. But for the moment, for today, yes, I no longer dispense Prednisone to my Mom, FINALLY! I feel like now my Mom can live, that she is back to life, as best can be for her age and all she just went through..
God Bless,
Joyismami
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Joyismami
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That is very positive news joyismami and another ringing endorsement for Actemra! She sounds as if she is doing well except the dratted dehydration leading to UTI’s. My mother in law was the same and was hospitalised with Urine infections twice and put on a hydrating drip. She did not feel thirsty either. With her I think it was painful and difficult for her to get to the loo and she actually wanted to avoid going very often - understandable. Your mother sounds like a sensible woman, she must take water as if it were medicine. When my mother in law lived with me following her husband’s death, she had a tiny appetite but she could be tempted with nice little treats like Bri and grapes.
I looked up how to get seniors to drink more fluids and as I read this item I thought how much it was like how to get your toddler to eat more vegetables. 😀
My Mom actually went Septic with one of the UTI's she had in the past year. She was in ICU for days, and they were not sure they could stop the infection. It is so dangerous and it does kill many.. So hard to get them to understand the need to keep hydrated. My Mom will do great with fluids for about a week after a UTI, then just doesn't continue.. I hope your Mom starts to feel much better quickly!
I used to make MIL lots of jellies. Then when she didn’t want to eat either I changed to milk jellies and blancmange.
When the going got really tough I put fluids in a medicine glass, told her it was medicine from the doctor, and she’d accept 50mls an hour. She was deep in dementia by then, which sounds like the opposite of your mum Joyismami
I hope she gets plenty of years to enjoy her new found ‘freedom’. Best wishes to you both.
Interesting my mother used to drink far too much - that is she would say - but I've just had a 'cup of tea' - (ie. 10 x over) and messed up her electrolytes etc - everything in life it seems is either 'too much or not enough' !!
Such great news! I’m new enough in this journey that I haven’t heard of many (or any) currently coming off Prednisone so it’s very exciting (almost emotional) to know that yes, people really do go into remission. Thanks for sharing!
Insight 329, I never thought I would see my Mom off the Prednisone. She started at 60 mgs a day and remained there for so, so long! When I would get her to 30 or 40 mgs she was in too much pain and felt too sick to continue taper so the Doctor would boost her up again.. I believe the Actemra really played a huge role in getting her off the Prednisone. These past two years, the diagnosis of GCA and the treatment of it certainly took its toll on her physically and many days made me and emotional wreck. I felt like I couldn't do it, or I couldn't do it anymore, on many occasions. I cried a lot when I was alone, and worried.. I was sick of seeing her so sick.. Her old self being taking away by this terrible disease that just came out of nowhere was emotional for me. Because she was still working at 82, driving, and completely self sufficient, this was hard.. She had to give up her job, she opted to stop driving, and I just couldn't let her give up any more, so I think that is why I fought with her and for her so hard.. The journey is long, but positive attitude and wanting to feel well again will get you there.. I pray your journey to better health is not long, and that you too will again feel like you!!
Congratulations to you both for joining the zero club. Long may your mothers returning health continue. You are the force behind the power. Enjoy your time together without so much stress and anxiety. You have done a great job
Her GCA specialist did say that it could be upwards of 2 years. After seeing the chaos this medication brought into her life, I can only imagine how terribly hard it is to be on it for so many years. These past 2 years have felt like forever to me and I am sure to my Mom. Paul how long have you been on Prednisone and where are you at in mgs now? Zampalion, 6 years? You are a fighter! Keep up the good work! You are almost there and hopefully you will be Prednisone free soon..
Thank you so much for all the sweet comments! This group has been and continues to be a great source for information and sharing life with GCA.. I learnt so much about a disease I had never heard of before and found I was not alone.. When you are taking care of a loved one with GCA and you have no idea what to expect, this has been one of the more informative and caring places to help you get through it. My Mom still asks how the other people in this group are doing and if I have told them she is off Prednisone!! I think that when I have read to her some of your stories she felt like she could relate to what you are going through as she was going through it herself.. Often times she would say "Oh, that is just like me" or when she was feeling a bit down she would ask "are there any people in your group who have actually got better".. I think that although she was not on a computer typing to the members of this group, she felt like she knew each of you as I read her your journeys.. I can't thank you all enough for your welcoming and support.. I pray that as I check back often, I will many more of you seeing that light at the end of Prednisone and doing a happy dance!! <3
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