I'm don't know where to turn at the moment. I was DXD in 2005. Started Tysabri in 2006 and stayed on till last September. Washed out and started Gilenya in early 2013. Did not do well, had 5 days of IV steroids then went on Tecfidera. At the end of August I had 3 days of steroids, had an MRI last Friday and my brain is stable but my cervical spine had enhancing lesions (my cervical and thoracic spines are the problem, my brain is actually quite good!). Started another 3 days of IV steroids. I'm so sick and tired of this. RNP is checking some index in my blood word that may enable me to go back on Ty as I am JC+. I'm just so sick and tired of all of this stuff. I'm 59 years old and I'm falling apart.
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Hi Hancock, sorry that you find yourself in need of being here, but I am glad to "meet" you.
I don't have any words of wisdom as I am not on any dmard at the moment. But I wanted you to know that someone cares and I will be praying for you.
What exactly are your symptoms, maybe someone could recommend a good med or routine that could help.
We do understand your frustration. -
I'm almost 62 and was diagnosed 1 year after I retired. Not to be flip, but "Welcome to the golden years." For those of us diagnosed when older, we become SPMS quicker since we no longer have "brain reserves" (used those up when we were younger
)
I'm also on Ty, but I'm JC-. However, for 4 months I thought I was JC+ due to a clerical error. I had assumed I would be positive and planned on staying on Ty anyway because it is the most effective drug available. At my age quality of life was the most important part of my decision.
Even if you have the "3 strikes" against you, the risk of PML is 1/80 at the most, I believe. My chances of developing any number of cancers is far higher than this; after losing my mother to brain cancer, this is a far greater fear for me.
Biogen has learned so much about Ty and the risk of PML since I started the drug (42 infusions ago), there are many more areas to monitor to help patients make an educated decision.
My one and only symptom is a digression in my walking. This hasn't stopped, but it is due to damage begun before I was diagnosed. I've finally accepted that this isn't going to improve, and so I've begun to make decisions to assist me in the future. However, I believe some new sx started right before I went on Ty, have been pushed back.
I have no answers for you, but I hope I'm given you some insight into my decision process. Good luck with your decision.
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Hi Hancock ...
I also do not have any magical answers just concern for
you. I was diagnosed in 2004 and have been taking
AVONEX since then. I have my good days and bad. I
just wanted to let you know that you are not alone and
you have all of us Supporting you.
Take Care
KathyWhat YOU Are Is ... GOD'S Gift to You
What YOU Make Of Yourself Is ... Your Gift To GODComment
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Thanks,
For your thoughts and responses. I have another doctor appointment tomorrow so we shall see how things go! Thanks again, SueComment
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hancock708,
Sorry you are doing so poorly right now. Your thread caught my eye because it sounds like we have been going through similar things.
I went off of Ty (last infusion April) and tried Tec. Not sure if it was the going off of Ty, a natural progression of the disease or what but basically my balance and mobility took a dive (I started using a cane). Since I couldn't "stomach" (couldn't handle the GI side effects) Tec I discontinued after 8 weeks. I am also JC positive. I was retested and my number came up low enough that I decided to go back on Ty. Just waiting now for insurance approval, infusion nurse to get back from vacation, etc.!! It has been frustrating and I am hopeful that going back on Ty will help. Hope you got some good news at the doctor's appointment!!Comment
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Index isn't back yet
But I'm hoping it will be low enough to go back on Ty. Still holding!!!!
SueComment
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