I am 43 and was diagnosed exactly a year ago. I have been on Rebif and my 3 month and 6 month MRI were fine. My most recent MRI shows 2 new lesions. My doctor wants to repeat MRI in January and possibly change to Tysbari. I don't know what to do since I am the only employed person in my home. My husband has a congenital cardiac defect and has been on disability for 6 years (may eventually have a heart lung transplant) My kids who are now 18 and 20 live at home, one in college and the other with a part time min wage job. I can't see taking a medication that has that many risks when I am responsible for the care of others. I know I have to think about my own health too but isn't there a less scary option?
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Hi SVD, sorry for what you're going through. Looks like these "kids" have passed the adult threshold, so don't be shy in asking them to help with caregiving or housework. There are other interferons you can try, but Ty is twice as effective in reducing worsening disability and preserving cognitive function. The odds of death or infection for me were low enough, and my risk factors were low or non-existant enough that Ty was a good first line defense for me. You can create your own risk profile by getting tested for JC and looking at the other risk factor criteria. My odds of dying from taking Ty are 1 in 10,000. With T2 lesion load, age, and presenting sx of mobility issues, my prognosis with MS is not good in my opinion, and I will do whatever I can to preserve what I have.
Nobody can tell you what to do medically, but I urge you to do lots of research to make a decision that is right for you. I don't focus on "I could die." I focus on "I feel better. I did everything I could to remain healthy and happy."
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