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04-08-2015, 10:41 AM | #501 | |||
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In Remembrance
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to obtain our rightful coverage. We should be able to sue them for that. I hope your flair is short lived and does no permanent damage. Please be well soon.
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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"Thanks for this!" says: | clarkstar (04-08-2015), Grammie 2 3 (04-10-2015) |
04-09-2015, 12:08 AM | #502 | |||
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Good luck and fingers crossed for you!
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On Tysabri and love it. . |
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"Thanks for this!" says: | Grammie 2 3 (04-10-2015), SallyC (04-09-2015) |
04-10-2015, 07:30 PM | #503 | ||
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Sorry you have had ins issues and a flare Clark
Lynn, you might want to ask your neuro about Retuximab. It is what I would go to if I had to give up Ty. Good luck to both of you Linda |
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04-11-2015, 06:44 PM | #504 | ||
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Ask your neuro about LEMTRADA (alemtuzumab). It affects both B and T cells, unlike ritaxumab... and it's a monoclonal antibody (like ritaxumab and natilizumab). Look into it anyway. I just stopped Tysabri (last infusion was March 20) and will be starting Lemtrada on May 4th.
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04-14-2015, 11:46 AM | #505 | ||
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msbelle,
why did you go off Ty ? Linda |
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"Thanks for this!" says: | Natalie8 (07-08-2015) |
04-14-2015, 04:47 PM | #506 | ||
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Lemtrada was the first drug my neuro wanted to put me on. My MS is aggressive. I declined it because we didn't have insurance that would cover it and would have to pay out of pocket. I'm actually doing well on Tysabri but I'm JCV+ and I know it's not something I'm comfortable with staying on more than 2 years (maybe less depending on how my titres rise). I have researched Lemtrada a LOT and it's the medication for me (obviously my neurologist agrees). So we are paying out of pocket and the drug company (Genzyme) is helping too.
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"Thanks for this!" says: | Grammie 2 3 (04-15-2015), Natalie8 (07-08-2015) |
04-15-2015, 07:12 PM | #507 | ||
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Thank you for responding
I hope Lemtrada is a great med for you!! I am sorry your insurance isn't paying. Please keep us updated. My best wishes Linda |
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06-06-2015, 06:13 PM | #508 | ||
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I waited 8 weeks for my infusion. My Dr said that is where the data is and asked if I would go from 6 to 8. I said yes. I really like my Dr.. he is very knowledgeable and listens to me So, back to waiting 8 weeks.. all was good with the wait, didn't feel any different from the 4 to 6 and then 8. Not happy with the nurse, I was bruised in 2 places as she missed the first. She went on top of my arm, one other attempted same thing, it was painful-I now have asked to not have either one. Good thing it's a large infusion center with many nurses who are capable and most even friendly
Hope you are all doing well Linda |
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"Thanks for this!" says: | Natalie8 (07-08-2015) |
06-17-2015, 07:31 PM | #509 | ||
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Call the drug company. They will dig into your insurance issues and solve it for you. If you cannot pay they will help you with that. They are very generous and I speak from personal experience.
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06-21-2015, 01:00 AM | #510 | |||
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i have a question regarding tysabri side effects. i had infusion last wednesday, and wednesday night i started having chest cold symptoms. at this point it seems like i have bronchitis. how long will these side effects last, or is it actually bronchitis? i'm confused, because the side effects listed
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i feel as if i'm lost with this... also, my mri back in april showed more lesions but none enhanced. my neuro disagreed and says there werent more lesions.... i'm done with her, she just brushed me off the last time i saw her too, when i was having cognitive problems (turned out i had a uti). she never explained that a uti could be causing the issues or anything, she just checked my strength and reflexes etc. both times she just said she didnt think i was having a relapse and offered no insight as to what was happening, and refused to give me steroids, which i wanted this time because my leg started giving me issues just like in past relapses. anyway, done ranting
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Multiple Sclerosis Diagnosed August 2010 |
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"Thanks for this!" says: | Natalie8 (07-08-2015) |
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