Aa
My continution of a "new" DMD
Well, spoke with neuro on phone 2 days ago for over 1/2 hour, she saw me yesterday for about 1/2 hour before my Neuro-Opht. appt.
Here is the "final" decision, not really final but a good 90% if everything goes well with insurance...
I am going to be starting Tysabri. She is very encouraged with how well I did with the Solu-Medrol this time, that it is even a better indicator of how Tysabri would go.
I will be on it for 1 year, then see what is next. I am - JC virus, and fit the rest of the categories, that "allows" me to be on Tysabri. It is a TOUCH program and with every infusion there is lots of protocol before the IV and after the IV.
"If" things are not going the way she and I both want them too, IE: still worsening, I can always switch to Gilenya.
The factors involved for me anyway, is I am on Coumadin, and it is "known" the combinatinon of Tysabri and Coumadin. My vascular doc is involved as well.
My Neuro is "very conservative, more than she needs to be" she things, but likes to know more info about the meds. She is more comfortable with Tysabri then Gilenya, and hasn't put anyone on Gilenya yet. The MS center is having a study with about 250 patients that will be prescribed Gilenya. She has "only" put about 30 people on Tysabri at this point, but believes that will increase once she is more confident with the meds. She has been an MS neuro for quite a long time, and I completely trust her, and feel I have gotten enough info. to help make my decision.
After a year on Tysabri, if things need to be switched, then I can go on Gilenya and she will be "much more comfortable" with it, having more information about the side effects.
Another factor, is that I already have eye issues, blind spots in my R eye and now double vision, which is new. She doesn't want to add any more Eye issues, although my Neuro-Opthal. disagreed with her yesterday.
That exam is a whole different post.
The lowered immune system is similar with both meds. I have lots of kids, and work with kids, but she said the majority of the problems are sinus related. This can be "fixed" and not to worry about it.
So, papers are signed and now we wait to see what insurance says. Unfortunately I just received my 3 month supply of Copaxone and am sick I will have to waste it. My neuro agreed that is a problem as well in her practice.
So that is the long and the short of it. I also have to have an MRI on the 1st day of the infusion and I think 6 months later, of maybe a year.
She also really wants me to stop working, as she feels it is "detrimental" to my health. She has been telling me that for quite some time, and I know she is right, but again that is a whole different story.
Thanks,
Michelle
Here is the "final" decision, not really final but a good 90% if everything goes well with insurance...
I am going to be starting Tysabri. She is very encouraged with how well I did with the Solu-Medrol this time, that it is even a better indicator of how Tysabri would go.
I will be on it for 1 year, then see what is next. I am - JC virus, and fit the rest of the categories, that "allows" me to be on Tysabri. It is a TOUCH program and with every infusion there is lots of protocol before the IV and after the IV.
"If" things are not going the way she and I both want them too, IE: still worsening, I can always switch to Gilenya.
The factors involved for me anyway, is I am on Coumadin, and it is "known" the combinatinon of Tysabri and Coumadin. My vascular doc is involved as well.
My Neuro is "very conservative, more than she needs to be" she things, but likes to know more info about the meds. She is more comfortable with Tysabri then Gilenya, and hasn't put anyone on Gilenya yet. The MS center is having a study with about 250 patients that will be prescribed Gilenya. She has "only" put about 30 people on Tysabri at this point, but believes that will increase once she is more confident with the meds. She has been an MS neuro for quite a long time, and I completely trust her, and feel I have gotten enough info. to help make my decision.
After a year on Tysabri, if things need to be switched, then I can go on Gilenya and she will be "much more comfortable" with it, having more information about the side effects.
Another factor, is that I already have eye issues, blind spots in my R eye and now double vision, which is new. She doesn't want to add any more Eye issues, although my Neuro-Opthal. disagreed with her yesterday.
That exam is a whole different post.
The lowered immune system is similar with both meds. I have lots of kids, and work with kids, but she said the majority of the problems are sinus related. This can be "fixed" and not to worry about it.
So, papers are signed and now we wait to see what insurance says. Unfortunately I just received my 3 month supply of Copaxone and am sick I will have to waste it. My neuro agreed that is a problem as well in her practice.
So that is the long and the short of it. I also have to have an MRI on the 1st day of the infusion and I think 6 months later, of maybe a year.
She also really wants me to stop working, as she feels it is "detrimental" to my health. She has been telling me that for quite some time, and I know she is right, but again that is a whole different story.
Thanks,
Michelle
Mary, thanks, I am glad you r smiling like the song.."when your smiling, when your smiling, the whole world smiles with you...when your laughing.." Never mind. ;) really, thanks, I appreciate it as well!
GG, Lather, rinse, repeat...that is VERY funny! Thanks for telling me how it goes for you. I hope I am the same, "although" I wouldnt mind if weeks2-3, turn into 1-4 for me!
Michelle
GG, Lather, rinse, repeat...that is VERY funny! Thanks for telling me how it goes for you. I hope I am the same, "although" I wouldnt mind if weeks2-3, turn into 1-4 for me!
Michelle
Hey, Michelle,
I'm always a little more tired after an infusion, but I've always been able to drive myself home, and heck, once or twice I've even picked up groceries on the way home!
No symptoms during the infusion.
You've probably seen previous posts of mine though - for me, the pattern goes like this:
Week 1: Exhausted, weak, lots of spasms (see week 4).
Weeks 2-3: Great! Feel stronger, more energetic.
Week 4: Big time crash! Weak, crazy fatigue, increased spasms.
Lather, rinse, repeat....LOL!
Of course, YRMV! We're all different... I must say, though, I really LOVE weeks 2-3!
I'm always a little more tired after an infusion, but I've always been able to drive myself home, and heck, once or twice I've even picked up groceries on the way home!
No symptoms during the infusion.
You've probably seen previous posts of mine though - for me, the pattern goes like this:
Week 1: Exhausted, weak, lots of spasms (see week 4).
Weeks 2-3: Great! Feel stronger, more energetic.
Week 4: Big time crash! Weak, crazy fatigue, increased spasms.
Lather, rinse, repeat....LOL!
Of course, YRMV! We're all different... I must say, though, I really LOVE weeks 2-3!
Michelle, I am soooooo very glad that you are feeling so good at the moment and on a path that offers new hope to stay in this place for the long term. This is terrific news anytime. Right now it is making my world spin in the right direction. I'm smilin'.
Mary
Mary
Well, just got a letter from my insurance that told me Gilenya was covered for me until Dec. 2012. Since I will be taking Tysabri, I hope the insurance wont deny me.
At least I know I have good insurance, since they have offered to pay for Gilenya.
Looks like yet another confusing conversation in my future?...always a kink somewhere, but I "think" this one might be a good one regarding insurance. Might just take a while to sort out now...
Michelle
At least I know I have good insurance, since they have offered to pay for Gilenya.
Looks like yet another confusing conversation in my future?...always a kink somewhere, but I "think" this one might be a good one regarding insurance. Might just take a while to sort out now...
Michelle
Ren, of course I was not offended! I appreciate your input, always!
GG, Do you have any symptoms during/after the infusion? More fatigue or anything that would make it difficult to drive home? I am "assuming" it is just like getting a dose of SoluMedrol. Thought I would ask though.
Thanks
GG, Do you have any symptoms during/after the infusion? More fatigue or anything that would make it difficult to drive home? I am "assuming" it is just like getting a dose of SoluMedrol. Thought I would ask though.
Thanks
Michelle -
I don't think you'll be sorry on this one. Just speaking for myself, the year I was on Tysabri, I had no new flairs, FWIW.
Good luck with Tysabri and hopefully the non-working world will be better for you. I wish you all the best!
I don't think you'll be sorry on this one. Just speaking for myself, the year I was on Tysabri, I had no new flairs, FWIW.
Good luck with Tysabri and hopefully the non-working world will be better for you. I wish you all the best!
Hi Michelle,
I am so glad you are excited and on board with the plan which sounds like a good one. I didn't mean to sound negative and perhaps I should have PM'd you about my concerns. But I am thrilled that you have a solid plan of action in place. I hope you didn't take offense.
Keep us updated. This may the road I travel next.
Daisygirl - Please keep us updated as well.
Ren
I am so glad you are excited and on board with the plan which sounds like a good one. I didn't mean to sound negative and perhaps I should have PM'd you about my concerns. But I am thrilled that you have a solid plan of action in place. I hope you didn't take offense.
Keep us updated. This may the road I travel next.
Daisygirl - Please keep us updated as well.
Ren
Lu,
looks like you and I posted at the exact same time. Thanks, sounds good to me too.
I told neuro there should be a "black market" for Copaxone. It is such a waste, honestly, I know it is illegal to give it to someone, but there are SO many people who need it and cant afford it. A shame. I wish the MS centers or society could help out with this.
Michelle
looks like you and I posted at the exact same time. Thanks, sounds good to me too.
I told neuro there should be a "black market" for Copaxone. It is such a waste, honestly, I know it is illegal to give it to someone, but there are SO many people who need it and cant afford it. A shame. I wish the MS centers or society could help out with this.
Michelle
Well, Michelle, It all sounds good to me - the neuro being thorough in her decision process is important and you being able to trust this doc and go with her opinion is great.
Now comes the hard part - waiting for that first infusion to be done. Your insurance should be fine with all this. I'm with you about the copaxone - I wish there were ways we could recycle these drugs to people who could use a few months financial relief from the costs.
take care, L
Now comes the hard part - waiting for that first infusion to be done. Your insurance should be fine with all this. I'm with you about the copaxone - I wish there were ways we could recycle these drugs to people who could use a few months financial relief from the costs.
take care, L
Hi all,
Ren, I totally agree with neuro, plus I also feel "doc knows best". I have a good friend, who is a nurse prac. and she did lots of "research" about both these meds, and gave me the info straight. She is wonderful, saved me lots of headaches :) So, I am happy with this decision and do feel I helped decided as well. (listening to my doc and my instincts?) I have just been feeling so good, and the thought that Tysabri might help me to feel this good also encourages me. Thanks for your thoughts :)
Shell, thanks for the support! I feel pretty comfortable with all of this, despite the fast pace of it. (Neuro said she didnt want to be having the same discussion in June. Meaning, to slow the progression as soon as possible, if possible). I am thinking very positively for now. Helps when you feel good, you are in a MUCH better frame of mind.
Daisy, yes, your neuro and mine have the exact thoughts on these meds and where you and I fit. Thanks about the $ advice. I am curious what will be with the insurance. Good to know about the assistance program as well, thanks. Good luck with the 1st infusion and let me know how it goes...
Michelle
Ren, I totally agree with neuro, plus I also feel "doc knows best". I have a good friend, who is a nurse prac. and she did lots of "research" about both these meds, and gave me the info straight. She is wonderful, saved me lots of headaches :) So, I am happy with this decision and do feel I helped decided as well. (listening to my doc and my instincts?) I have just been feeling so good, and the thought that Tysabri might help me to feel this good also encourages me. Thanks for your thoughts :)
Shell, thanks for the support! I feel pretty comfortable with all of this, despite the fast pace of it. (Neuro said she didnt want to be having the same discussion in June. Meaning, to slow the progression as soon as possible, if possible). I am thinking very positively for now. Helps when you feel good, you are in a MUCH better frame of mind.
Daisy, yes, your neuro and mine have the exact thoughts on these meds and where you and I fit. Thanks about the $ advice. I am curious what will be with the insurance. Good to know about the assistance program as well, thanks. Good luck with the 1st infusion and let me know how it goes...
Michelle
I think I told you this in your other post too, but that is exactly my neuros thought process. He is more comfortable with the Tysabri....therefore we are going to do it for a year, and during that time, He will have more actual usage information on Gilenya.
If the info on the Gilenya is good, I will switch at that time. I am scheduled for my first infusion on Feb 2.
I have BC/BS and they cover 80% of the Tysabri, leaving me with the 20%, which is a lot of money. I asked for assistance, the Tysabri Biogen group has their own Assistance Program. I talked on the phone for just a few minutes. They asked my our 'household' gross annual income, and told me right away that I qualified for the $10.00 co-pay program.
They also told me there is a second fee charged by the infusion site that Biogen does not/cannot assist with. According to my insurance that is a 40.00 co-pay for me.
Hope that helps.....
If the info on the Gilenya is good, I will switch at that time. I am scheduled for my first infusion on Feb 2.
I have BC/BS and they cover 80% of the Tysabri, leaving me with the 20%, which is a lot of money. I asked for assistance, the Tysabri Biogen group has their own Assistance Program. I talked on the phone for just a few minutes. They asked my our 'household' gross annual income, and told me right away that I qualified for the $10.00 co-pay program.
They also told me there is a second fee charged by the infusion site that Biogen does not/cannot assist with. According to my insurance that is a 40.00 co-pay for me.
Hope that helps.....
Wow, Michelle.
This does sound like a good plan, and one that's going to suit you. What a good doc you have to care so much and to know what's too much and willing to say so too.
Your write up here sounds thorough and well thought out on each avenue especially regarding the risks.
Wishing you minimal hurdles w/insurance....and that your thoughts stay clear w/the plan.
Proud of you,
-Shell
This does sound like a good plan, and one that's going to suit you. What a good doc you have to care so much and to know what's too much and willing to say so too.
Your write up here sounds thorough and well thought out on each avenue especially regarding the risks.
Wishing you minimal hurdles w/insurance....and that your thoughts stay clear w/the plan.
Proud of you,
-Shell
Hi Michelle,
I was just wondering how you feel about the decision that was made. You talked about the neuro's opinion a great deal but not about yours. Are you okay with this decision? Did you get a chance to voice your concerns and opinions as well?
I know your neuro is good and she has done a great deal to help relieve your symptoms. I know you trust her, but I was just looking out for you....NOT criticizing just wondered if your comfortable with the decision that was made.
I'm here with you no matter which drug you use, just wanted you to be sure of your decision.
Hugs,
Ren
PS She's right about work but like you said that's another post.
I was just wondering how you feel about the decision that was made. You talked about the neuro's opinion a great deal but not about yours. Are you okay with this decision? Did you get a chance to voice your concerns and opinions as well?
I know your neuro is good and she has done a great deal to help relieve your symptoms. I know you trust her, but I was just looking out for you....NOT criticizing just wondered if your comfortable with the decision that was made.
I'm here with you no matter which drug you use, just wanted you to be sure of your decision.
Hugs,
Ren
PS She's right about work but like you said that's another post.
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