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Scared but optimistic with RRMS
Hi. I am in the process of switching my med from copaxone to tysabri. I used to be on rebif and copaxone. I had horrible reactions and have to switch. I am thrilled it will be 1 time a month and very scared about the possible side effects. I live in South Jersey outside Philly and have two little guys ages 3 and 5. I also have a big guy age 39 (my loving and supportive husband). I have been on no medicine since July and hopefully will begin Tysabri in October. I would love any advice or tips. Can you drive there yorself for the infusion? Do you get nauseus? skin reaction? fatigued? infections? vaginitis? How do you deal? What do you take to combat it? Is vaginitis like a yeast infection? Do you eat before infusion? What type of skin rash? Does it itch or just look ugly? Does Benadryl help? Do you take vitamin supplements? Do you avoid crowds during flu season? I have a great support system, but I sometimes do not accept help well and am very independent. Any thoughts?
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Hi Lisa and welcome to Neuro Talk. Here is the link to our very active MS forum....http://neurotalk.psychcentral.com/forum17.html
I'm glad you've joined us. :hug: |
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Lots of questions! I have MS and we have a terrific MS community here with lots of support. And many on Tysabri. Once you get settled in with the MS Forum, you will find lots of answers to your questions. I think Alffe has already given you the link to our group! As for answers about Tysabri, you will get lots of answers there, too. Everyone will react differently to the medication, which I am sure you have found with the ones you have already been on. The best way to find out is to try the medication and see how you will tolerate it. I was on Tysabri and did fine unfortunately my insurance company decided to play doctor and thought otherwise. :mad: After a year of appeals, I lost the battle and decided to apply for clinical trials and was accepted into one which I am still in. So just call me Lab Rat! It's not a bed of roses, having this disease, nor finding a drug that will work for you. But having a positive attitude will do you more good than anything else, and even that's hard. Welcome...we're glad you're here but sorry for the reason. http://sl.glitter-graphics.net/pub/1...hix95m99ef.gif |
Hi, Lisa! :Wave-Hello: Welcome to NeuroTalk!
Another MSr here, c'mon over and jump right in, the water is warm.:) |
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Tysabri is one of the most simplistic medications that I have ever used. After over 23 years with MS, it was a very pleasant surprise to find such a wonderful medication. You will love the process. Here is what happens: 1) At the infusion center you replay to the five important TOUCH protocol questions. 2) The medical staff then establishes an IV line for you. 3) You have a saline drip for about 30 minutes. 4) You then have a Tysabri drip in the same IV line for about one hour. 5) When the Tysabri in infused completely, the saline drip is turned on again while the medical staff monitors you for about an hour. 6) You go home, happy! As for the Benadryl, I discovered that all 15 of the MS patients that I have seen at the infusion center do take Benadryl capsules before they get their infusion. I have not. But either way, it would not hurt. If you do so, be sure to tell the medical staff. You can drive yourself to and from the infusion without a problem. I have never had a skin rash or nausea from Tysabri. I do bring some snacks and a book with me for every infusion. You do get a bit sleepy a few hours after the infusion. I do avoid crowds during flu season, and I keep a small pack of "handi Wipes" with me at all times to disinfect most everything as needed. -Vic |
Hello dear one!
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Helloooo dear Lisa, I am very glad you found "Neurotalk" -many many sharp cookies here, they are walking the same path, and can help you~ my dear sister takes Copaxone... she seems to do well with it but she doesnt like the auto injector so she gives the shots to herself... |
Hello and welcome to Neurotalk - you will find many great and wonderfully supportive people here!!
I don't have any experience with Tysabri - sorry!! If I can help you in any way please don't hesitate to ask - I am more than happy to help you in any way I possibly can!! Thanks and I am looking forward to seeing you around the forum soon!! Alison:hug: |
Hello Lisa. I have MS as well.
I've had no personal experience with Tysabri, but we sure have plenty of members who do. I see that you've been given some good link so i hope you'll get some answers soon. I'm so very pleased that you found your way to us, although I'm sad for the reason why. I hope to meet up with you in the MS Forums, and please don't hesitate to ask if you think any of us can help you out in any way. |
Welcome to Neuro Talk...we do have a great forum for fellow MSer's. My honey was diagnosed in 1986 and has progressed to SPMS. He was on Ty last year for I think seven doses...I felt he was being used for the docs benefit not his.
I do know it has helped many and I have not heard of any side effects... |
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