Have not started yet.

Tell us what you are using to treat your MS-- and how you are doing.

Have not started yet.

Postby MSKarateka » Fri Mar 24, 2017 1:28 pm

I am currently taking 50,000 IU of D 2 x/week. B complex, and Fish oil 3, 6, 9.

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.
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Re: Have not started yet.

Postby Scott1 » Fri Mar 24, 2017 1:37 pm

Hi,

What are your current symptoms?

Regards,
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Re: Have not started yet.

Postby MSKarateka » Fri Mar 24, 2017 2:06 pm

So far my life has not been impacted greatly by my symptoms. Just restless legs at times and the numbness/loss of coordination.

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.
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Re: Have not started yet.

Postby Scott1 » Fri Mar 24, 2017 5:37 pm

Hi,

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)

Regards,
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Re: Have not started yet.

Postby MSKarateka » Sat Mar 25, 2017 5:42 pm

I am really thankful for my mild symptoms. I want to stay mildly symptomatic for as long as possible. I am just wondering what questions I should ask when at my next appointment. I saw Tsyabri could cause PML through the BBB. At least the way I was reading it. I am also concerned with the immune suppressing side affects. I work in a hospital in close contact with patients. I am also in school full time and want to remain able to attend class.
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Re: Have not started yet.

Postby Scott1 » Sat Mar 25, 2017 8:19 pm

Hi,

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.

Regards,
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Re: Have not started yet.

Postby NHE » Sat Mar 25, 2017 9:09 pm

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've put links to the doctor's prescribing information in each of the treatment forums.
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Re: Have not started yet.

Postby californiadreamin » Sat Mar 25, 2017 9:56 pm

Why not Tecfidera? Just wondering what the reasoning is. I personally would be worried about pml more at this point given what you described. Tysabri would like be good for two years at the lower risk for pml. With ocrelizumab coming out next week (in the US) with a much likelier lower pml risk it might be worth trying gilyena or Tecfidera first. Does your dr have a good reason to not start with that?
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Re: Have not started yet.

Postby MSKarateka » Mon Mar 27, 2017 4:44 pm

I am still trying to decide if we ended up steering the conversation toward Plegridy and Tysabri before we knew the difference.
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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Re: Have not started yet.

Postby MSKarateka » Sun May 21, 2017 4:25 pm

I have been accepted into the Ocrevus trial. I am having a tetanus shot because I am due. I am also getting my varicella antibodies tested to see if an immunization is in order. Apparently, while on Ocrevus my ability to make antibodies will be diminished.
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Re: Have not started yet.

Postby MSKarateka » Sun Jun 25, 2017 8:22 am

I have gotten all my immunizations up to date and the Doc has given me clearance to start after July 17.
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