Aa
Update...Tysabri?
Well, my neuro called and left a voice mail on my cell. I wish I had heard it when it rang.
Basically she left a rather long message about my blood-work. (I saw her about 2 weeks ago, and she wanted to switch me from Copaxone to either Tysabri or Gilenya. There needed and still needs to get lots of tests. They have very stringent rules who goes on these meds.
She told me I was negative for the JC virus and would like to know my thoughts about this. Would I be willing to try Tysabri? She knows I was overloaded with info at the last visit and wants to go over all this. She said she has done lots of "thinking" about what med would be most effective for me.
I appreciate her doing her job so well. I have total trust in her, but am really nervous about this med. I am scared about getting the herpes brain infection, who wouldn't be, so have lots of ? for her. I am extremely lucky she is my MS neuro. I dont think I could me in better hands.
Ideally, I would love my hubby to come and speak to her with me. He has not been involved in any of my MS "issues", until they affect him. I know, not good. I do know he will go with me if I ask, I really just need another set of ears and he needs to hear this from the doc.
So, that is it. I am curious if my DX has changed from RRMS to something else. I am sure it has, but am afraid to ask. I like being in the dark sometimes, less stress. When I am ready, I will ask.
I do know of 2 people on this forum who are on Tysabri, so I will be asking them. I only know one of them by name, Rita. Anyone know who the other is?
Thanks,
Michelle
Basically she left a rather long message about my blood-work. (I saw her about 2 weeks ago, and she wanted to switch me from Copaxone to either Tysabri or Gilenya. There needed and still needs to get lots of tests. They have very stringent rules who goes on these meds.
She told me I was negative for the JC virus and would like to know my thoughts about this. Would I be willing to try Tysabri? She knows I was overloaded with info at the last visit and wants to go over all this. She said she has done lots of "thinking" about what med would be most effective for me.
I appreciate her doing her job so well. I have total trust in her, but am really nervous about this med. I am scared about getting the herpes brain infection, who wouldn't be, so have lots of ? for her. I am extremely lucky she is my MS neuro. I dont think I could me in better hands.
Ideally, I would love my hubby to come and speak to her with me. He has not been involved in any of my MS "issues", until they affect him. I know, not good. I do know he will go with me if I ask, I really just need another set of ears and he needs to hear this from the doc.
So, that is it. I am curious if my DX has changed from RRMS to something else. I am sure it has, but am afraid to ask. I like being in the dark sometimes, less stress. When I am ready, I will ask.
I do know of 2 people on this forum who are on Tysabri, so I will be asking them. I only know one of them by name, Rita. Anyone know who the other is?
Thanks,
Michelle
I am scheduled to begin my first Tysabri infusion in the next week or so. All paperwork done, insurance checked and infusion site confirmed.
My thoughts on Tysabri:
I am scared too, but I guess I feel that we have 11 infusions without great concern. From all the information I have received from the Tysabri folks. No one on Tysabri for MS treatment has developed PML in the first 11 infusions.
That gives a year to see how patients do on Gilenya.....I may decided at that time to switch.
My thoughts on Tysabri:
I am scared too, but I guess I feel that we have 11 infusions without great concern. From all the information I have received from the Tysabri folks. No one on Tysabri for MS treatment has developed PML in the first 11 infusions.
That gives a year to see how patients do on Gilenya.....I may decided at that time to switch.
Michelle,
Geez, I don't know what to say. Least we have some tysabri users to provide insight on their pre-decision thought processes.
As far as Gilenya, for what it's worth my neuro mentioned today that the herpes risk was lower at the lower dosing and that's why the fda approved the current dose. Not sure if that helps your thoughts any, but that's what I was told today.
Say the word and I'll bump up the old discussions on both meds - I know we have a couple good ones, but don't want to overwhelm you.....
Best advice I can give personally is that if you aren't ready to make a switch, then don't allow the push/rush. Take your time - continuing your current treatment will provide you benefit while you decide...
Thinking of you,
shell
Geez, I don't know what to say. Least we have some tysabri users to provide insight on their pre-decision thought processes.
As far as Gilenya, for what it's worth my neuro mentioned today that the herpes risk was lower at the lower dosing and that's why the fda approved the current dose. Not sure if that helps your thoughts any, but that's what I was told today.
Say the word and I'll bump up the old discussions on both meds - I know we have a couple good ones, but don't want to overwhelm you.....
Best advice I can give personally is that if you aren't ready to make a switch, then don't allow the push/rush. Take your time - continuing your current treatment will provide you benefit while you decide...
Thinking of you,
shell
Please continue to give up dates to us. There are some members here (including me) that would love to hear step by step exactly what is happening before taking Tysabri...and your journey on it. I am so thankful to other members that have been sharing with me.
The day may come and this helps prepare me. I understand private sharing but please don't block some of the information that may be helpful to other members.....
The day may come and this helps prepare me. I understand private sharing but please don't block some of the information that may be helpful to other members.....
Thank you all so much for your input. I am going to PM you all and ask some additional ?, if you don't mind.
Well, my neuro called again today. She is persistent and I do appreciate it, although I really wasn't ready to talk with her yet.
We spoke about 1/2 hour, and she told me to come in tomorrow around noon to speak again with her and to sign some paperwork. (I already had a Neuro-Ophtl. appt tomorrow at the hospital, so she thought it would be more convenient for me), which it is.
I will give an update tomorrow, but basically she did go over the reasons she wants to start Tysabri and not Gilenya...yet.
It is scary and hopeful at the same time, maybe. I dont know. Still on the overwhelmed side.
Michelle
Well, my neuro called again today. She is persistent and I do appreciate it, although I really wasn't ready to talk with her yet.
We spoke about 1/2 hour, and she told me to come in tomorrow around noon to speak again with her and to sign some paperwork. (I already had a Neuro-Ophtl. appt tomorrow at the hospital, so she thought it would be more convenient for me), which it is.
I will give an update tomorrow, but basically she did go over the reasons she wants to start Tysabri and not Gilenya...yet.
It is scary and hopeful at the same time, maybe. I dont know. Still on the overwhelmed side.
Michelle
I am on Tysabri.
I just found out tonight that I am also negative for the JC virus and everyone of my Drs seems to be of the opinion that PML (the brainvirus) is NOT a danger to those with negative JC results. I go through the program at UCSF and have not had a chance too like and see if this is truly the case, but 4 Drs have said to me that if u are negative for JC than PML is not a worry.
As for taking the meds, going to the hospital every four weeks for an hour and a half is waaayyy more tolerable to me than givng myself injections, but I not able to work and can still drive, so that works out for me. That is something that has to be considered. My Dr really would like me to continue on Tysabri as oppposed to switching to an oral treatment since apparently Tysabri is working and my risk of danger is very low.
You are welcome to send me a message and we can talk more.
I can tell u that I too am afraid that my MS is progressing to far and that is why the Drs have moved on to Tysabri, but the Drs won't discuss it and insist I am still labeled RRMS, and just am not having luck with the other meds. Everyone is different. Stay positive ;)
As far as how I feel... I have to say that Tysabri has had more of a positive effect on me than any other DMDs. I tried Rebif and Betaseron. I never tried copaxone because the injection site reactions I had with both the others were getting worse over time.
My MRIs have never changed in 2 years on any of the DMDs, but at first on the others I had a flare every 3-4 months and on Tysabri I have only had one in 6 months. I even got a sinus infection twice*its possible Tysabri weakens your immune system according to docs and I say YES on that personally* but I went through both infections without a flare and that is a first for me.
So I personally am sticking with it for now. If I was positive for JC...I may consider differently.
Have a good long talk with ur neuro. Write down all of your questions and don't. Change things until u are comfortable with the decision. It sounds like you are in good hands and sometimes it may just be the right thing to go with what the Dr thinks will work.
Best wishes to you
D
I just found out tonight that I am also negative for the JC virus and everyone of my Drs seems to be of the opinion that PML (the brainvirus) is NOT a danger to those with negative JC results. I go through the program at UCSF and have not had a chance too like and see if this is truly the case, but 4 Drs have said to me that if u are negative for JC than PML is not a worry.
As for taking the meds, going to the hospital every four weeks for an hour and a half is waaayyy more tolerable to me than givng myself injections, but I not able to work and can still drive, so that works out for me. That is something that has to be considered. My Dr really would like me to continue on Tysabri as oppposed to switching to an oral treatment since apparently Tysabri is working and my risk of danger is very low.
You are welcome to send me a message and we can talk more.
I can tell u that I too am afraid that my MS is progressing to far and that is why the Drs have moved on to Tysabri, but the Drs won't discuss it and insist I am still labeled RRMS, and just am not having luck with the other meds. Everyone is different. Stay positive ;)
As far as how I feel... I have to say that Tysabri has had more of a positive effect on me than any other DMDs. I tried Rebif and Betaseron. I never tried copaxone because the injection site reactions I had with both the others were getting worse over time.
My MRIs have never changed in 2 years on any of the DMDs, but at first on the others I had a flare every 3-4 months and on Tysabri I have only had one in 6 months. I even got a sinus infection twice*its possible Tysabri weakens your immune system according to docs and I say YES on that personally* but I went through both infections without a flare and that is a first for me.
So I personally am sticking with it for now. If I was positive for JC...I may consider differently.
Have a good long talk with ur neuro. Write down all of your questions and don't. Change things until u are comfortable with the decision. It sounds like you are in good hands and sometimes it may just be the right thing to go with what the Dr thinks will work.
Best wishes to you
D
I still don't know if I'm JC negative. If I knew for sure, I wouldn't hesitate to take Tysabri. I've had no new flairs in the year I've been on it. I'm taking a 3 month break from it, and in that time, I'm going to persue testing for the JC virus.
I have no regrets!
I have no regrets!
oh,
LA is too doing tysabri.
hoping she is better. she had flu that is concerning and have not heard her.
LA is too doing tysabri.
hoping she is better. she had flu that is concerning and have not heard her.
hi michelle,
I am on infusion 4.
I testssed pos. for JC anitbodies. I see my dr next week to go over it all. If i heard right, he will alooow my 18 (?) infusions since i was pos.
In the years i had most the injetaables that did not help.
In my gut i know i am not rrms,( ( i htink most likely prms) i doubt i ever have. My dr and I never raise issue of 'type' I htink probly because trying to grasp at straws for treatments. I have never asked.
I am thankful for this time i am getting tysabri for whatever it may help.
I am really happy to hear your trust of your doctor, that means alot.
be well, amo
I am on infusion 4.
I testssed pos. for JC anitbodies. I see my dr next week to go over it all. If i heard right, he will alooow my 18 (?) infusions since i was pos.
In the years i had most the injetaables that did not help.
In my gut i know i am not rrms,( ( i htink most likely prms) i doubt i ever have. My dr and I never raise issue of 'type' I htink probly because trying to grasp at straws for treatments. I have never asked.
I am thankful for this time i am getting tysabri for whatever it may help.
I am really happy to hear your trust of your doctor, that means alot.
be well, amo
I think I would opt for Gilenya, if I had the option. I'm just tired of the injections, I guess.
btw - you have caller id, right? call her back tonight and stop kicking yourself that you missed the call.
Hi Michelle, I think there are more than 2 - Rita and Chad are both on Tysabri. Guitargrl I think is taking a break right now but has also done tysabri.
We've talked about the Tysabri risks around here more than once. Quix and I both are on the side that if it were our next option, we would definitely take it. But we're also in different stages of our life .
You'll have to discuss the risk vs benefit with the doctor - it sounds like she is really on top of this. And definitely ask your hubby to go with you--- he needs to be a part of this conversation and the decisions. It's time for him to step up and be your partner because you need the support.
hugs, L
We've talked about the Tysabri risks around here more than once. Quix and I both are on the side that if it were our next option, we would definitely take it. But we're also in different stages of our life .
You'll have to discuss the risk vs benefit with the doctor - it sounds like she is really on top of this. And definitely ask your hubby to go with you--- he needs to be a part of this conversation and the decisions. It's time for him to step up and be your partner because you need the support.
hugs, L
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