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My tysabri nightmare part II - please read
I am sharing, not because I want sympathy, but because I just thought you should all know what you might potentially have to go through. I don't wish it on anyone. I know that this drug is fantastic for those that can tolerate it so I am not knocking the drug. I have no idea if it would have worked for me and for those of you with great experiences I am really happy for you..I just want everyone to know that for every good story about tysabri there is also some bad ones. And for those of you that don't know: there has been two more cases of PML ( a potentially lethal brain virus) from tysabri. I knew that risk when I took the drug, but after having such a bad reaction the word "risk" takes on a very REAL meaning. The risks are REAL. Be careful. Be educated. Be proactive about your own health because no one is going to look out for YOU as much as YOU.
If you made it this far: thanks for listening. Its nice to have a forum of people fighting the same fight. Writing this is my way of "looking out" for all of you the way you guys have for me by some of the posts of yours that I have read. Hope everyone feels well and stays well and I promise my next post won't be so angsty.
Sending smiles to all of you and wishes for good health,
Sarah
If you made it this far: thanks for listening. Its nice to have a forum of people fighting the same fight. Writing this is my way of "looking out" for all of you the way you guys have for me by some of the posts of yours that I have read. Hope everyone feels well and stays well and I promise my next post won't be so angsty.
Sending smiles to all of you and wishes for good health,
Sarah
Hi Diana, thank you so much for sharing. What has happened since your last post? I'm having my 36 Tysabri infusion today. Two months ago I had a bad rash on my neck, trunk and back area, similar to the other rashes described. It went a way after a week. However after my last two infusions I have this ichy scalp that is so annoying and gets worse at night and wakes me up. I tested neg. to the antibodies, however I have been having wild symptoms that start about 10 days post infusion. I thank you for your time.
Mel
Mel
Hi, I'm new to this community and messaged Sarah earlier about my tysabri experience. I've been on the drug for over a year and have developed a horrible itchy rash after my last 3 infusions. I'm waiting the results of an antibody tysabri blood test. I see my neuro. Wed.
I'm also aware of the two new cases of PML and was just at a tysabri seminar where it was discussed. The 2 cases were in England where the Touch program isn't in effect. When I go for my infusions the nurse asks me a number of questions and if there is any doubt at all with my answers they call my Dr. to see if it is still okay to do the infusion. They said at the seminar that the patients are not monitored at all like they are in the Touch program. Some of those patients are on other meds that compromise their immune system and shouldn't have been on tysabri.
Good luck to all. I hope this helped a little.
I'm also aware of the two new cases of PML and was just at a tysabri seminar where it was discussed. The 2 cases were in England where the Touch program isn't in effect. When I go for my infusions the nurse asks me a number of questions and if there is any doubt at all with my answers they call my Dr. to see if it is still okay to do the infusion. They said at the seminar that the patients are not monitored at all like they are in the Touch program. Some of those patients are on other meds that compromise their immune system and shouldn't have been on tysabri.
Good luck to all. I hope this helped a little.
Thank you so much for sharing your heart wrenching story with all of us...this is coming from the one that has been told that her MS is "in-active" and has been denied the DMD's and has been fighting tooth and nail to get some recognition that her disease is NOT in-active and that I have the right to have the DMD's!
You certainly have opened my eyes though and I really sympathize for you having to go through what you did. I appreciate seeing it from the "other" side though and I really hope that things begin to look up for you.
It seems that we are all surrounded by ineffective, under educated, egotistical medical people in one form or another and for that I am sorry for all of us that need good, honest, educated, intelligent people that care for the patient above all.
Best of luck to you honey and please stay in touch with us...we can give each other strength to carry on when the people we think are supposed to help us, fail us miserably!
Lots of Hugs,
Rena
You certainly have opened my eyes though and I really sympathize for you having to go through what you did. I appreciate seeing it from the "other" side though and I really hope that things begin to look up for you.
It seems that we are all surrounded by ineffective, under educated, egotistical medical people in one form or another and for that I am sorry for all of us that need good, honest, educated, intelligent people that care for the patient above all.
Best of luck to you honey and please stay in touch with us...we can give each other strength to carry on when the people we think are supposed to help us, fail us miserably!
Lots of Hugs,
Rena
Wow - talk about day and night in attitude toward this drug. I am so ignorant about the whole DMD process - when I read everyone's posts about drugs it makes my head spin! Of course lots of things make it spin as well. LOL
Sarah, I'm sorry this was such an ordeal. What do you do now?
Rita, good luck to you and hopefully your experience will continue to be positive.
I guess I should start reading about these treatments so when the time comes I can make an informed choice like both of you obviously have done.
Thanks for sharing you experiences,
Laura
Sarah, I'm sorry this was such an ordeal. What do you do now?
Rita, good luck to you and hopefully your experience will continue to be positive.
I guess I should start reading about these treatments so when the time comes I can make an informed choice like both of you obviously have done.
Thanks for sharing you experiences,
Laura
Hi,
I am just in the process of getting my first Tysabri infusion set up.. :) I appreciate you sharing your story, especially for anyone who is currently considering it and is possibly not aware of all the down sides.
I am sorry you went thru so much to try to get it, only to have it fall thru in the end with a reaction. I can imagine how disheartened you must be....I know I have been waiting for this to get approved since early July. It has been what I have been pinning my hopes on...it took all that time to work thru getting approved thru the TOUCH program, and then dealing with all the insurance issues. I just got approved on Monday.
It is indeed a VERY risky and controversial medication....I have been researching it for the past 2 months... :) I have read research papers, statistics, scientific articles both pro and con, first person accounts of their experiences, found a number of people who are on it that I email with, and even found someone in NJ thru a friend here on the forum that I was able to talk to on the phone.
It is a very difficult decision to make.....yes, there are many who have been helped tremendously, but there are also many who have had reactions like you and even the more serious complications. Even though the stats on the big, bad things are low percentages, it's only low until you are one of them...
Tysabri has only been back on the market for 2 years.....not much time in the world of high end medications in my eyes. It is still experimental to a large degree as far as I am concerned. As the patient pool grows, I fully expect there will be more reactions and adverse effects that will come to light. Any time you tinker with the immune system to that degree, all bets are off to a certain degree.... :)
How long were you on Rebif and what kind of problems did you have on it? I am on it and feel terrible every day, and my symptoms keep on coming. For me, I weighed everything very carefully....like I said, this has not been an easy decision by any means. I have wrestled with it every which way till Sunday, lol. But I know for me, and my particular situation, this is my shot to possibly stop - or at least slow down - the freight train, as my hubby says... :) Each individual needs to know what they are getting into and see if the potential risks outweigh the potential benefits for them.
So I decided to roll the dice and give it a whirl - but I am fully aware of both sides of this coin. It could be the thing that works wonders for me and really gives me a life back to a certain degree....or it could all go horribly awry at any time. I am aware of the new cases of PML, as well as the whole array of serious/life treatening adverse effects, and the others that can still cause alot of problems. The list is long.... I am going in with my eyes open, and I have let my family and friends know just what a big decision and step this is, and to be prepared in case it goes bad. Everyone surrounding me is on board with eyes open also - whether they wanted to hear the bad things or not, lol.
I am fortunate that my neuro is TOUCH certified, as is his office - I will be getting my infusions there. The copay for the infusion center will be $20. I am also fortunate that currently my insurance is only charging a $40 copay each time. I had stressed about the financial issues big time. Luckily, for me, my interactions with the Tysabri people themselves have been great. I have not had to try to arrange financial aid thru them, so that may well be a whole different experience, but any time I have called they have been very informative, helpful and friendly. Completely opposite of my interactions with the Rebif people.
Again, I am so sorry this turned out this way for you, and I think it's great that you shared your experience with all of us. Knowledge is empowering to us all.... :) Is there another treatment plan for you now that Tysabri is out of the picture?
I wish you all the best....and I am hoping my infusions will be less eventful....:)
Rita
I am just in the process of getting my first Tysabri infusion set up.. :) I appreciate you sharing your story, especially for anyone who is currently considering it and is possibly not aware of all the down sides.
I am sorry you went thru so much to try to get it, only to have it fall thru in the end with a reaction. I can imagine how disheartened you must be....I know I have been waiting for this to get approved since early July. It has been what I have been pinning my hopes on...it took all that time to work thru getting approved thru the TOUCH program, and then dealing with all the insurance issues. I just got approved on Monday.
It is indeed a VERY risky and controversial medication....I have been researching it for the past 2 months... :) I have read research papers, statistics, scientific articles both pro and con, first person accounts of their experiences, found a number of people who are on it that I email with, and even found someone in NJ thru a friend here on the forum that I was able to talk to on the phone.
It is a very difficult decision to make.....yes, there are many who have been helped tremendously, but there are also many who have had reactions like you and even the more serious complications. Even though the stats on the big, bad things are low percentages, it's only low until you are one of them...
Tysabri has only been back on the market for 2 years.....not much time in the world of high end medications in my eyes. It is still experimental to a large degree as far as I am concerned. As the patient pool grows, I fully expect there will be more reactions and adverse effects that will come to light. Any time you tinker with the immune system to that degree, all bets are off to a certain degree.... :)
How long were you on Rebif and what kind of problems did you have on it? I am on it and feel terrible every day, and my symptoms keep on coming. For me, I weighed everything very carefully....like I said, this has not been an easy decision by any means. I have wrestled with it every which way till Sunday, lol. But I know for me, and my particular situation, this is my shot to possibly stop - or at least slow down - the freight train, as my hubby says... :) Each individual needs to know what they are getting into and see if the potential risks outweigh the potential benefits for them.
So I decided to roll the dice and give it a whirl - but I am fully aware of both sides of this coin. It could be the thing that works wonders for me and really gives me a life back to a certain degree....or it could all go horribly awry at any time. I am aware of the new cases of PML, as well as the whole array of serious/life treatening adverse effects, and the others that can still cause alot of problems. The list is long.... I am going in with my eyes open, and I have let my family and friends know just what a big decision and step this is, and to be prepared in case it goes bad. Everyone surrounding me is on board with eyes open also - whether they wanted to hear the bad things or not, lol.
I am fortunate that my neuro is TOUCH certified, as is his office - I will be getting my infusions there. The copay for the infusion center will be $20. I am also fortunate that currently my insurance is only charging a $40 copay each time. I had stressed about the financial issues big time. Luckily, for me, my interactions with the Tysabri people themselves have been great. I have not had to try to arrange financial aid thru them, so that may well be a whole different experience, but any time I have called they have been very informative, helpful and friendly. Completely opposite of my interactions with the Rebif people.
Again, I am so sorry this turned out this way for you, and I think it's great that you shared your experience with all of us. Knowledge is empowering to us all.... :) Is there another treatment plan for you now that Tysabri is out of the picture?
I wish you all the best....and I am hoping my infusions will be less eventful....:)
Rita
Hi Sarah!
Thank you so much for sharing. I had heard of the 2 new cases, unfortunately. Like you say, when it works, but there are always risks.
Will you stay on with us? How are you feeling now?
Thanks for coming our way, hope to get to know you better.
See you around!
-Shelly
Thank you so much for sharing. I had heard of the 2 new cases, unfortunately. Like you say, when it works, but there are always risks.
Will you stay on with us? How are you feeling now?
Thanks for coming our way, hope to get to know you better.
See you around!
-Shelly
Honey, you have all the right to vent as much as you need. That's why we're here for!
I am so sorry about your experience... and raging mad! what the hell is wrong with the American Health System?? i mean, you guys are the richest country in the world, there should be enough money to cover all of their citizen's medical needs! I had never even heard of Tysabri before, lol!
I have been dx for a few months, and i am not on any medication. I have had plenty of MRI and so far, it's all looking good. I had two attacks within a month and that was it.
I can't believe how some Drs treat you like things! My Neuro is always calling me asking me how am i doing and to just show up at his office at the first sign of relapsing.
Again, i am so sorry. I have read many posts from many people talking about the nightmare it has been to be put on one medication, the costs, the insurance, it's impossible to keep a system like that going! tell that cancer Dr you want to see his diploma and then shove it up his a**. I bet it won't fit, but at least, you made the effort!
Hope you're feeling better!
xoxox
Farrah
I am so sorry about your experience... and raging mad! what the hell is wrong with the American Health System?? i mean, you guys are the richest country in the world, there should be enough money to cover all of their citizen's medical needs! I had never even heard of Tysabri before, lol!
I have been dx for a few months, and i am not on any medication. I have had plenty of MRI and so far, it's all looking good. I had two attacks within a month and that was it.
I can't believe how some Drs treat you like things! My Neuro is always calling me asking me how am i doing and to just show up at his office at the first sign of relapsing.
Again, i am so sorry. I have read many posts from many people talking about the nightmare it has been to be put on one medication, the costs, the insurance, it's impossible to keep a system like that going! tell that cancer Dr you want to see his diploma and then shove it up his a**. I bet it won't fit, but at least, you made the effort!
Hope you're feeling better!
xoxox
Farrah
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