FAQ/Help |
Calendar |
Search |
Today's Posts |
08-14-2015, 04:53 AM | #15 | |||
|
||||
Wisest Elder Ever
|
I've discussed the pros and cons of Tysabri with my family (both boys and DIL) and they are concerned about the risk of PML.....especially since I am JCV positive.
I found an article that seemed pretty neutral but gave the hard facts about PML and the risk factors for JCV positive patients. It was a little scary to read I have to admit but I wanted them to know the facts. They (well my boys at least) have already been through enough with the loss of family members and I don't feel I can risk putting them through another stressful situation for 2 years while I roll the dice with Ty. So it's a no-go for me. While researching other MS drugs I found that many of the newer oral drugs also carry the PML risk. I was shocked! I remember specifically asking my Neuro if Tecfidera carried a PML risk and he said no. Well, I found a case of someone contracting a non-fatal case of PML after taking Tec! What the what??? http://www.medpagetoday.com/Neurolog...clerosis/52622. Now not only do I have concerns about the safety of the MS meds but I question my Neuro's advice on everything now. He put me on Tec BEFORE testing me for the JC Virus!!! I think it's time to look for another Neuro. My confidence in him is gone now. His alternate drug to Ty was Gilenya. Well, looky what I found on it..... http://www.fda.gov/Drugs/DrugSafety/ucm456919.htm. I'm not sure where to turn or what to do.
__________________
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here. |
|||
Reply With Quote |
"Thanks for this!" says: | SallyC (08-17-2015), Twinkletoes (08-19-2015) |
|
|
Similar Threads | ||||
Thread | Forum | |||
Lyme: such a thing as "false positive"..? | Lyme Disease, Shingles and Other Microbial Conditions | |||
"positive thinking" and healing-to Annie and others. | Myasthenia Gravis | |||
Prayers/Positive Thoughts For Our Gene, aka, "ponyboy", Please...... | Sanctuary for Spiritual Support |