Aa
Magoo, where are you?
Hi there Magoo!
Was just wondering how your wife was making out w/the Betaseron.
Hope this finds you both well.
Take care,
SL
Was just wondering how your wife was making out w/the Betaseron.
Hope this finds you both well.
Take care,
SL
I want to jump in here and say I'm glad to hear from you also. Give my regards to your wife and invite her to speak to us.
Quix
Quix
Well I wouldn't say that you are crazy....just perhaps in a bit of a pickle. I read the post/thread that you started the other day about your situation and I can only try to imagine your frustration.
My two cents from one internet stranger to another would be to try the Rebif again. Obviously it is much easier for me to say that since I don't have to go through or have to watch a loved one go through the possible allergic reactions. But if indeed the main culprit to your health troubles is MS....by all accounts Rebif is the better DMD and I would not want to settle for Copaxone.
I hope you find some answers in short order. Good luck to you.
My two cents from one internet stranger to another would be to try the Rebif again. Obviously it is much easier for me to say that since I don't have to go through or have to watch a loved one go through the possible allergic reactions. But if indeed the main culprit to your health troubles is MS....by all accounts Rebif is the better DMD and I would not want to settle for Copaxone.
I hope you find some answers in short order. Good luck to you.
Hi again,
Sounds to me that your wife's primary neuro is confident and aggressive, so very important.
I wound up w/Rebif since Neuro suggested it, however, I could choose whatever one I wanted. I think that is pretty common practice, unless the Dr has a lot of research under his/her belt w/something in particular. Since I felt in turmoil over my own research and could not make a decision either way, I ultimately went with his suggestion, so Rebif it was for me.
No-one can be certain about the allergic reaction. Only way to really know is to challenge it. I wish I didn't have to - to find out, but it seems to me it's my only choice.
I have an allergist that believes it is the Rebif, but can't be certain. My neuro says he didn't feel it was necessary to challenge it, that I can just switch to Copaxone. And, then there is me (and my stubborn ways) telling me, it might not be the Rebif, so why switch!
Crazy aren't I? LOL......
I love the last line you sent here ". . .never have to accept that things can't be better." Inspirational!
Talk to you soon,
SL
P.S. I know I'm not the ONLY one who remembers you, and misses your posts - I don't know for certain, but feel confident enough to say, I'm sure our dear Dr. Quix has missed you too!
Sounds to me that your wife's primary neuro is confident and aggressive, so very important.
I wound up w/Rebif since Neuro suggested it, however, I could choose whatever one I wanted. I think that is pretty common practice, unless the Dr has a lot of research under his/her belt w/something in particular. Since I felt in turmoil over my own research and could not make a decision either way, I ultimately went with his suggestion, so Rebif it was for me.
No-one can be certain about the allergic reaction. Only way to really know is to challenge it. I wish I didn't have to - to find out, but it seems to me it's my only choice.
I have an allergist that believes it is the Rebif, but can't be certain. My neuro says he didn't feel it was necessary to challenge it, that I can just switch to Copaxone. And, then there is me (and my stubborn ways) telling me, it might not be the Rebif, so why switch!
Crazy aren't I? LOL......
I love the last line you sent here ". . .never have to accept that things can't be better." Inspirational!
Talk to you soon,
SL
P.S. I know I'm not the ONLY one who remembers you, and misses your posts - I don't know for certain, but feel confident enough to say, I'm sure our dear Dr. Quix has missed you too!
Again, thank you for the kind reponse.
I actually read the forum briefly everyday to see any new info posted and to see how everyone is doing....I'm just not very good a keeping everyone's personal information and stories straight.
As to how we wound up with Betaseron, I'll give you the short version.
In Sept. of 2007 the first neuro diagnosed her with MS and recommended Rebif to start immediately. He also suggested we gain a second opinion from a specialist to confirm is diagnoses. We couldnt see a specialist until Dec., at which point he referred to her as mono-phasic, meaning a clinically isolated event. He said it was up to her if she wanted to start a DMD.
Fast forward to March, we meet with the specialist again and my wife's MRIs show a drastic increase in lesions in a relatively short period of time. He now said a DMD must be started and that is nonnegotiable. He said that he believes in a higher dose - high frequency shot....either rebif or betaseron. His preference is betaseron....ultimately more meds being injected than Rebif, and much lower instances of injection site problems. The negative is slightly higher chance of antibodies being built up. The efficacy is about the same.
So the MS specialist said Betaseron and we now have a box of the stuff sitting on our kitchen table.
How did you end up with Rebif? And what kind of allergic reaction did you have? And they are certain it is the drug?
I hope that you find the answers that you are looking for. I hope that your path becomes easier. I will pray that the fight stays in you. We all have to accept the hand we are dealt in order to move forward, but we never have to accept that things can't be better.
I actually read the forum briefly everyday to see any new info posted and to see how everyone is doing....I'm just not very good a keeping everyone's personal information and stories straight.
As to how we wound up with Betaseron, I'll give you the short version.
In Sept. of 2007 the first neuro diagnosed her with MS and recommended Rebif to start immediately. He also suggested we gain a second opinion from a specialist to confirm is diagnoses. We couldnt see a specialist until Dec., at which point he referred to her as mono-phasic, meaning a clinically isolated event. He said it was up to her if she wanted to start a DMD.
Fast forward to March, we meet with the specialist again and my wife's MRIs show a drastic increase in lesions in a relatively short period of time. He now said a DMD must be started and that is nonnegotiable. He said that he believes in a higher dose - high frequency shot....either rebif or betaseron. His preference is betaseron....ultimately more meds being injected than Rebif, and much lower instances of injection site problems. The negative is slightly higher chance of antibodies being built up. The efficacy is about the same.
So the MS specialist said Betaseron and we now have a box of the stuff sitting on our kitchen table.
How did you end up with Rebif? And what kind of allergic reaction did you have? And they are certain it is the drug?
I hope that you find the answers that you are looking for. I hope that your path becomes easier. I will pray that the fight stays in you. We all have to accept the hand we are dealt in order to move forward, but we never have to accept that things can't be better.
Hi there,
So very glad you saw this, and still check in when you can. Your note is lovely.
And, don't thank me, it's that blessing that was put on this forum. I sure don't know who asked for it originally, but I do know where it comes from.
I, like many of us, seem to never forget those who have touched the forum in one way or another like you have. Despite our many limitations, we have enough memory and strength to reach out to ones we think about and remember. I remember how you came here looking for info for her, how very special that is, and often wonder how she is doing.
She got her dx fairly quickly like me. Mine was last year.
My family is doing very well, thank you so much for asking. I started Rebif. I'm off of it right now, but plan on going back hopefully soon. I had an allergic reaction to meds, and since then went off of those I was on, so that was included too.
I'm a fighter, and am going to challenge it, incase it wasn't the culprit. It's not like meds for other things (that I should just switch) so I feel the benefits are worth the challenge.
I'm waiting on some info on something else (may not be MS) that is going on in the central canal of my spinal cord, but am working hard on keeping the faith that all will resolve, or get resolved in some manner.
I have been wanting to ask you how she came about the decision of Betaseron. It, like the others DMDs, is known to be successful. I know someone who was on it for 8 years and faired very well with lack of lesion progression and attacks.
Tell your wife we are pulling for her if she wouldn't mind. Thank YOU for being a part of our family
ttys,
-SL
So very glad you saw this, and still check in when you can. Your note is lovely.
And, don't thank me, it's that blessing that was put on this forum. I sure don't know who asked for it originally, but I do know where it comes from.
I, like many of us, seem to never forget those who have touched the forum in one way or another like you have. Despite our many limitations, we have enough memory and strength to reach out to ones we think about and remember. I remember how you came here looking for info for her, how very special that is, and often wonder how she is doing.
She got her dx fairly quickly like me. Mine was last year.
My family is doing very well, thank you so much for asking. I started Rebif. I'm off of it right now, but plan on going back hopefully soon. I had an allergic reaction to meds, and since then went off of those I was on, so that was included too.
I'm a fighter, and am going to challenge it, incase it wasn't the culprit. It's not like meds for other things (that I should just switch) so I feel the benefits are worth the challenge.
I'm waiting on some info on something else (may not be MS) that is going on in the central canal of my spinal cord, but am working hard on keeping the faith that all will resolve, or get resolved in some manner.
I have been wanting to ask you how she came about the decision of Betaseron. It, like the others DMDs, is known to be successful. I know someone who was on it for 8 years and faired very well with lack of lesion progression and attacks.
Tell your wife we are pulling for her if she wouldn't mind. Thank YOU for being a part of our family
ttys,
-SL
To the say the least I'm blown away that anyone here (a complete stranger) would be thinking of my wife. Thank you very much...that is very thoughtful. I am an infrequent poster and for you to remember....wow.
As for the betaseron, its going ok. She started with a .25 dose, and just bumped up to .50 last night. The flu like symptoms have not been unbearable, and most times not presented at all. Though she has been feeling pretty badly in general the past several days.....not sure if it is the meds, the ms, stress, or just being in the dumps.
Betaseron's auto-injecter is a life saver, and she has had zero issues with the injection site.
I hope all is well with you and your family. Please refresh my memory, have you been "diagnosed" with ms?
Again, thank you for asking.
As for the betaseron, its going ok. She started with a .25 dose, and just bumped up to .50 last night. The flu like symptoms have not been unbearable, and most times not presented at all. Though she has been feeling pretty badly in general the past several days.....not sure if it is the meds, the ms, stress, or just being in the dumps.
Betaseron's auto-injecter is a life saver, and she has had zero issues with the injection site.
I hope all is well with you and your family. Please refresh my memory, have you been "diagnosed" with ms?
Again, thank you for asking.
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