My JCV test came back borderline positive. I am eligible for Tsyabri, and I am considering Plegerdy. Is there anything else I should consider. I will of course check with the Doc at my appointment in a couple of weeks. I also live with a nurse.
My symptoms are very mild. They found 4 lesions in my thoracic spine and 3 in my brain.
My diagnosis is Multiple Sclerosis, Relapsing-remitting.
Mild symptoms are a good thing. Plegridy is interferon beta 1a but its dosing is different than earlier versions. This note sets out some of the things to watch for - https://www.plegridy.com/en_us/home/about/safety.html .
I took Avonex for a decade for very little benefit and found it very unpleasant. I've never taken Plegridy but looks the the FDA note refers to earlier interferon products like Avonex so I presume it could be similarly difficult. Hopefully someone with actual experience can chime in.
Tysabri has some quite serious warnings related to it issued by the FDA - https://www.fda.gov/Drugs/DrugSafety/ucm288186.htm . If anyone hasn't been checked for JCV antibodies then do that first. Borderline positive doesn't sound encouraging to me.
I don't use any of the blockbuster MS drugs and struggle to find the logic in a number of them. What I do is set out here but its your call and there are many other ideas to consider as well. http://www.mstranslate.com.au/ms-many-s ... y-muscles/ (the other links are up the top)
It's an interesting dilemma. Should you or should you not take a doctors advice?
The question I would ask first is why do I need to take any of these? The second question is why is one better than another if they work in different ways. I wouldn't accept the "self inject or take a pill" argument as a proper answer .
Get the FDA notes on these (just google FDA+"the product" and print the note out. Work out what you understand from the documents. In particular look at what they say about the mechanism of how the drug works and how they say it influences MS outcomes. That alone should raise a lot of questions.
There is an endless variety of opinions here about what to do. Doing nothing is an active decision. If you want to avoid suppressing your immune system have a good read of the supplements alternatives that others here suggest.
Ask why you are given those choices and not some of the others such as Gilenya or Copaxone?
What you need to find out is how much confidence the prescriber has in the treatment. Given what you have been offered then I would say it's not particularly high.
It's more of a scattergun approach. He's almost said "You're hungry. What would you like to eat? Cat or dog?" You have to work out how hungry you are.
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I've put links to the doctor's prescribing information in each of the treatment forums.Scott1 wrote:Get the FDA notes on these (just google FDA+"the product" and print the note out. Work out what you understand from the documents. In particular look at what they say about the mechanism of how the drug works and how they say it influences MS outcomes. That alone should raise a lot of questions.
I think during the diagnosis meeting we were a little overwhelmed with how it would affect our busy lives. We are both in school and work full-time w/overtime or multiple jobs. I am looking into the other meds on my list. I meet with my Doc on April 7 to decide on a course of action. The delay was to get my JCV test, a steroid infusion and a follow-up MRI.
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