John Mills on behalf of VUK is Interested in hearing about the experiences of anyone who has been treated with Tocilizumab for treating GCA. (Good or Bad)
NICE are doing an appraisal of this drug and VUK have been invited to take part in the consultation.
Please contact John.mills@vasculitis.org.uk
My Mom who is 83 was diagnosed with GCA in September. High dose of Prednisone started at hospital, temporal artery biopsy performed and confirmed diagnosis, discharged 4 days later on 60 mg. of Prednisone daily. Each time her physician tries to wean her off the steroids she can't get to 30 mg. of Prednisone daily without feel just terrible. Since the diagnosis and even while on treatment she is still rather tired and she is having pain in both of the upper thighs down to the knee, describing it as tired/sore muscles. She can not walk far with out the pain becoming intense and she is also short of breath during exertion. She started on IV Infusion Tocilzumab this past Monday and will go for continued infusions every four weeks and the physician will try to bring down her Prednisone once they feel she has enough of the Tocilzumab in her system. Keeping fingers crossed this is the medication that will get her on a lower dose if not completely off Prednisone. Keep in mind she was still working full time and was on no medications for anything prior to this diagnosis of GCA. She was very active with more energy than most 30 year olds, and it is hard to see how much this disease has taken from her quality of life.
My experience sounds similiar. I was very active before gca and now cannot walk very far without resting. I am off the prednisone and have an infusion of actemra once a month ...probably the rest of my life. I am 78 years old. I do not think I could handle anything outside of the home ...I can barely keep my home up ...am starting to use someone to come in to clean once a month next week.
Hi Buddyk,
I have seen this all first hand and the toll GCA takes on a persons life. Your description of your inability to keep us as you use to could very well have been my Moms. The amount of rest needed is beyond words and being unable to do daily routine tasks has been so frustrating here. You didn't mention how long you have been diagnosed and treated for GCA, but I hope that in time you will regain some strength back to be able to do a little more as each day goes by. I had to really instill to my Mom that resting was of utmost importance and to do it whenever she needed to, and in all honestly she had a very hard time accepting there was now so much she could not do. I also kept assuring her that in time, every little thing that she did to try to take a baby step, was a huge step forward.. I honestly thought she would never, ever leave her recliner again. I had accepted that this is what it was going to be.. She would go from bed, to bathroom, to recliner and that was all she could do and with great struggle. There were and will probably continue to be days where she can't do more than that..She needed a walker and slept in excess of 20 hours a day. She is not 100% and may never be, but 9 months after diagnosis her legs are a bit stronger, the pain in her legs is gone, and she has more awake time each day. Please do get someone in to help you do what you can not do right no, both inside your home and outside. It is ok to accept help. It is going to help you concentrate of getting some of your strength back. Rest, anytime your body says to, it is SO IMPORTANT!! I know how frustrating this is as I have been out of work, staying home, to take care of anything my Mom might need. Trying to keep her motivated and positive without pushing. You have already accomplished what many have a very difficult time doing and that is getting off the Prednisone.. What a wonderful medication with horrible side effects this is! You could die without it, but most days it feels like it is what is killing you..The Actemra has been a huge part in my Moms road to recovering as much as she can. It is only since the infusions that she has been able to taper, and the results are noticeable. Every time I taper her down it's a wait and see how it will go.. I pray you will every day find a little more strength and energy. Use it cautiously, don't push, and take care of you!! Please stay in touch and keep up with this group, they are wonderful people, with so much knowledge. I have learnt so much from each of their stories. You are not alone that is for sure!
Hugs,
joyismami
Thank you for sharing your Mom's story. She is fortunate to have such a compassionate daughter, especially with a disease that does not often show any fusible signs of disease...the pain and fatigue are like an illusion! Quality of life is very important, I hope the Actemra will continue to do the job😊
Hi joyismami,
I can't tell you how much your reply meant to me as I have had gca for 15 months and have met only one other person who has it. And he doesn't have the fatigue that I do. I have been trying to figure out what the source of the fatigue is. The cardiologist has turned my pacemaker up and it hasn't made any difference. My rhomotologist will not acknowledge what my fatigue is coming from so I had decided it was from having to sit sooo much. So have been forcing myself to walk outside, swim and go to a strength training class. But that has not made a difference either. Sometimes when walking I have to stop OFTEN (hopefully where I can sit down) and rest . Sometimes my husband has to come and pick me up...I walk very very slowly. So it was good to hear that it is probably the arteritis causing this lack of strength and tiredness.
I have been fortunate with going thro the prednisone to be able to get off of it. The infusions don't seem to make any difference for me but dr says I'd have a lot more symptoms if I was not taking it. Actually my only symptoms is this EXTREME. Tiredness. It changes throughout the day. I can walk in a store almost normal and come out just crawling.
My son just brought a scooter on vacation with us so I could get around."
Your response brought tears to my eyes ...it was so wonderful to talk to someone else who has this awful disease. It was wonderful to have someone clean my house ..as I have not been able to do numerous things.
Please stay in touch. I don't know what I would do without strength from the Lord as I am also a caretaker for my husband who has early ahlzheimers. I have a loving , caring daughter just like you. She says she is my caretaker as I am my husbands.
Keep in touch my new friend,
Buddyk
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