I had my 17th infusion today. (Don't say a word RW.)

It went well, no reactions. The MS neuro spoke to me about the PML cases when he checked in on me.

He said he doesn't think the risk is any more now than it was before. He said it was my choice for whatever I would do, no pressure from him to stop. If I wanted to stop it, he'd support that too.

He thinks it might be a good idea to have MRI's every six months now but that would be the only change. They already have a good program there with the doctor checking me each month.

A bit late this mo, but I want to check in and tell you #6 infusion was done on the 12th. I did not premed this time. No reaction at all. Same as usual - no problems.

......

I had hoped to have my first infusion this Thursday but, so far, the insurance company has not gotten back with the neuros office. My dr is frustrated, but the coordinator in the office is completely blowing me off. No return calls as to the status (even though the dr called me himself, assuring me that she would call...)

Since I am off all meds, I would like to get this started! I know, patience! Thanks for letting me share!

~Teresa

Teresa,

Contact MS Active Source and have them (along with your physician) do the fighting for you.

They should get better results as a team.

-Vic

Well, my insurance company did come through with the authorization and I received my first infusion on Thursday. It went off without a hitch, the only unexpected issue was from the nurse who administered the meds. My neuro told me to premedicate with Tylenol and Benedryl - the nurse told me to NEVER do that. I am not to premedicate. Not sure what I think about that. I had no reactions - although today I am very tired and feel sick to my stomach... but I am pleased with the first infusion.

Thanks for all your support!

~Teresa

For those women on Tysabri, have you experienced any irregularities with menstruation? -- delayed, length of time of menses MUCH longer, spotting, or anything else? Does anyone know anything about this?

Feel free to PM me. Thanks.

Don't worry - you are fine. This is common with MS. I have it too. Sometimes more, sometimes much less (1 day 2 mos ago) . I've not had spoting yet but I assume it may come. I am told this is due to MS not TY. I think I agree, as it started just after my 1st relapse (b4 ty). I'm not a Dr, but based on me in the last 8 or so mos since DX, yes all has changed. I don't worry about this one. It is prob the only MS related prob I do not worry about. Hope this helps a little

a premed with Tylenol and Benedryl cannot hurt! Many Dr tell you too, many do not mention it. Mine never did, but I did tell them I premed Tylenol and Benedryl. They did not care, but I was the only one who premed. I was just scared as I am sure you were. I premed my 1st 5 infusions. I did not on my 6th and all still went fine. I think my body needed to adjust to TY. I would do the same again. I wanted to play it safe and I think I needed to. This is just MHO.

If u decide to premed again, I would not tell them. I think it is your choice. Many may disagree with me, but there is little I now have control over and I will or will not premed as I alone deam necessary.

Just an update on my Tysabri evaluation.

-Vic

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