with my ongoing rollercoaster, not knowing if it's Ty or something else I wanted know if there is any specific danger in postponing an infusion a week or two? Will it put me at risk to have other relapse? And if I were to discontinue Ty, how does that work? Could I go on another medication right away? I have had 6 infusions thus far.
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There are some people that get their Infusion every 6-8 weeks rather than every 4 weeks due to JCV titer and length of time on the drug. So it shouldn't put you at relapse risk. I have missed at times due to illness or weather. I do notice increase in fatigue though.
If you go off Tysabri, there is a wash out period before you can start a new medication. I believe 3 months, but not positive.
You should discuss with your neuro though since everyone's history is different.Kathy
DX 01/06, currently on Tysabri
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Originally posted by shel67 View PostThank you. I really think I'm going to put it off till next week. I'm scheduled tomorrow but I feel better each day. My symptoms are much less intense. Right after infusion they are at their worse. I am very conflicted.
Also, does your neuro do frequent blood work to make sure nothing else amiss? If no, you may want your blood checked just to double check.Kathy
DX 01/06, currently on Tysabri
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All he doctor said was I'm opposite. But this needs to be examined.
I postponed it till next week. I'm really curious to see what happens. I felt okay yesterday, my regular MS balance was good. The difference is night and day between how I feel. It's that weird heavy head swaying. The last month was unbearable. All my symptoms get intense.
Trying to retrace this; the first infusion, I felt the swaying 3 days after the infusion and that lasted till the 2nd week. The next 3 months the same but the swaying not as bad.
I remember November's infusion month being kinda steady the whole month, but I have that improved feeling the last two weeks. December, sort of the same.
But these last two months were bad. What's weird is after the January's infusion, 3 days later I felt the best I felt since this MS mess began. I thought that was it, like in September, I thought there was finally a light at the end of this tunnel. I was wrong...again.
By that Sunday I felt like I had another attack. That lasted 2 weeks and a couple days. The day of menstrual cycle, I felt better.
Then I felt better again and the day of February's infusion, the swaying, it was back and BAD. That swaying was so intense I can't do that again. It lasted 2 weeks.
Here is what is very odd and curious; the day I began my cycle, the swaying stopped again. This is is how it has been since September and even before that.
I felt better the day of my cycle each month since September, before I began Tysabari. I really want to go the full 2 weeks before another infusion just to see if the swaying comes back with out the infusion. If it's not the infusion I need to know. I do not want to stop if it is working.
Over the last 5 years Every MS flare and/or activity I have had has revolved around my cycle, so much so, I was told my MS symptoms were menopause.
This cycle was different, lighter and shorter and the swaying was worse. Last time I had a shorter lighter cycle, I had an attack and that is what led to diagnosis of MS. There is a link, I know there is.
Depending on how I feel. I'll try to see if I can put the infusion off another week just to be 100% sure it's not the infusion.
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Originally posted by shel67 View PostOver the last 5 years Every MS flare and/or activity I have had has revolved around my cycle, so much so, I was told my MS symptoms were menopause.
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