LUV2DANCE2
04-28-2007, 04:17 PM
I have been on Avonex, then Rebif for 8 years +/-, yet I am slowly getting worse. I question maybe it is from the shots that are making me worse. Whwn I discuss with docs, they put the fear in you like the minute you are off shots, you will be in a wheel chair. I would like to hear from anyone who has gone off shots, after many years, & what their results were.
Thank you,
Thank you,
Sponsor
msladyinca
04-28-2007, 04:48 PM
Hi Luvs,
While I am not a dr, it sounds to me as though your MS is fairly aggressive in that you are having breakthrough disease activity even while on the strongest of the older generation DMDs (you said you're getting worse)... therefore going off Rebif might make you 'feel better' initially because you won't be experiencing the side effects of the interferon, but the fact still remains that you are having breakthrough disease activity with the very real possibility that you might have "silent lesions" forming while off therapy as MS is a progressive disease. :(
Have you discussed Tysabri as your DMD of choice with your neuro?
All the best dearheart,
Lauren
While I am not a dr, it sounds to me as though your MS is fairly aggressive in that you are having breakthrough disease activity even while on the strongest of the older generation DMDs (you said you're getting worse)... therefore going off Rebif might make you 'feel better' initially because you won't be experiencing the side effects of the interferon, but the fact still remains that you are having breakthrough disease activity with the very real possibility that you might have "silent lesions" forming while off therapy as MS is a progressive disease. :(
Have you discussed Tysabri as your DMD of choice with your neuro?
All the best dearheart,
Lauren
MSNik
04-28-2007, 11:28 PM
Please keep us posted on this, what you decide and how your disease progresses. Having been on Rebif just under a year, and having NOT had any real issues since being on it for 4 months- I dream about the day when I wont have to take these shots anymore! I think about stopping it, but wont- simply because it is doing what its supposed to do, for now.
Please know you are in my prayers, and I hope that you find relief in the near future. Tysabri is something you should investigate. Read the posts on it, and on Mitox....its doing amazing things for some....
hugs,
Nikki
Please know you are in my prayers, and I hope that you find relief in the near future. Tysabri is something you should investigate. Read the posts on it, and on Mitox....its doing amazing things for some....
hugs,
Nikki
sunshine149
04-29-2007, 12:01 PM
switching medications may be the way to go, one does build a tolerance over time to these meds.
MSNik
04-29-2007, 03:33 PM
Actually, they dont build up a tolerance. In fact, I just had this exact conversation with my doctor and my pharmacist this week. They advise against switching from an Interferon A beta-1 to Betaseron. They also advise against switching from any other CRAB UNLESS IT IS WARRANTED, such as intolerance or, of course, any kind of allergic reaction. The meds themselves only improve as the level in your blood stream build up and it can take up to a year for Copaxone to reach full blood level, Rebif 6 months, and so on...
There are people who experience breakthrough symtoms, due to the progression of their disease, which is why CRABS are only approved for Remittant/ Relapsing MS, not Progressive. I myself, have Progresssive and am still on Rebif, simply becasue there is NO evidence that it cant continue to work, or slow down the progression of the disease; however, no one is promising me that I wont have relapses even though Im on it.
The drug is not to fault, the drug doesnt stop working..it either works for you, with your system or it doesnt..however, as the disease progresses, there are only so many options to look into. As Laren stated, some feel better getting off CRABS, if they had bad side effects or initally didnt tolerate it well. It took me 6 full months before I stopped having injection site reactions and flu like symtoms. Now, I can take it and forget it for another 2 days.
Tysabri is one which is so new, and so advanced, it may be the right drug of choice..it should definately be explored with your doctor.
Good luck.
There are people who experience breakthrough symtoms, due to the progression of their disease, which is why CRABS are only approved for Remittant/ Relapsing MS, not Progressive. I myself, have Progresssive and am still on Rebif, simply becasue there is NO evidence that it cant continue to work, or slow down the progression of the disease; however, no one is promising me that I wont have relapses even though Im on it.
The drug is not to fault, the drug doesnt stop working..it either works for you, with your system or it doesnt..however, as the disease progresses, there are only so many options to look into. As Laren stated, some feel better getting off CRABS, if they had bad side effects or initally didnt tolerate it well. It took me 6 full months before I stopped having injection site reactions and flu like symtoms. Now, I can take it and forget it for another 2 days.
Tysabri is one which is so new, and so advanced, it may be the right drug of choice..it should definately be explored with your doctor.
Good luck.
Lisa_P
04-30-2007, 08:04 AM
I never knew there was this time delay thing for the drugs to really get in your system. I've been on and off my Copaxone since December. I'll quit taking it (against doctor's wishes) every now and again because the site reactions get so dang intolerable! I was on Avonex over a year and never stopped having the "flu" and THEN went over year before I was persuaded by a very bad relapse to try SOMETHING else -- the Copaxone was my choice at that time. So I guess I need to tough it out for a year or so? starting now -- since I've a little more than irregular in my treatment?
MSNik
04-30-2007, 11:33 AM
hi Lisa. Im not a doctor, I cant tell you what to do; however I can tell you that even the drug insert says something about not stopping it and it taking 6months plus to reach full blood level. My Neurologist told me that at about 6 months it STARTS working well, but can take up to a year to really start showing the affects. I went with Rebif, not Copaxone for personal reasons; however that drug too, says UP TO SIX MONTHS to reach full blood level. If you are starting it and stopping it, it really does only make sense that you are not really giving it a chance. Your body isnt adjusting to it. I know people who have been on Copaxone for a year now, who have absolutely NO problem with it and swear by it..say they never felt better- but they too, had adjustement periods in the beginning.
I would say give it a good 3-4 months of not skipping it and see if you dont feel better..if you still feel lousy, maybe Copaxone isnt for you and youll need to try one of the Intereferons. Copaxone is a synthetic drug...Rebif, Betaseron and Avonex are not...they are more like the bodys own chemistry...however, Copaxone is the one which is supposed to be the easiest to tolerate!!!
keep us posted.
Nikki
I would say give it a good 3-4 months of not skipping it and see if you dont feel better..if you still feel lousy, maybe Copaxone isnt for you and youll need to try one of the Intereferons. Copaxone is a synthetic drug...Rebif, Betaseron and Avonex are not...they are more like the bodys own chemistry...however, Copaxone is the one which is supposed to be the easiest to tolerate!!!
keep us posted.
Nikki
msladyinca
04-30-2007, 03:57 PM
Hi Lisa,
I've been reading the various comments posted on the various threads of this forum, and I'd like to add my comments as well...I happen to agree with Nikki's comments but add:
...off my Copaxone since December. I'll quit taking it (against doctor's wishes) every now and again because the site reactions get so dang intolerable! I was on Avonex over a year and never stopped having the "flu" and THEN went over year before I was persuaded by a very bad relapse to try SOMETHING else
It appears to me (and I'm not a dr either) that you can't tolerate the older generation DMDs due to their side effects and injection site reactions.
I'm not pushing Tysabri on anyone, but only wish to make you and others here aware that we have the option of Tysabri available to us...pursuant to the approved FDA labeling, Tysabri is for patients with relapsing forms of MS that generally have not responded to, or cannot tolerate, other MS treatments. What this means is that Tysabri is a first line (like the ABCRs) and/or a second line defense/treatment for MS.
The phrase "cannot tolerate" can be interpreted by the treating physican to include their "needle-phobic" patients...or patients with "aggressive forms of relapsing MS"... , therefore, the patient does NOT necessarily have to fail one med first in order to have Tysabri. Pursuant to Dr. Katz and Dr. Temple of the FDA, they explained to the public in a Conference Call shortly after their Advisory Committee hearings in March, 2006 that the FDA's decision/language above was purposely left open and left up to the treating physican.
Whatever DMD you choose, I wish you good health and happiness, always. :)
Lauren
I've been reading the various comments posted on the various threads of this forum, and I'd like to add my comments as well...I happen to agree with Nikki's comments but add:
...off my Copaxone since December. I'll quit taking it (against doctor's wishes) every now and again because the site reactions get so dang intolerable! I was on Avonex over a year and never stopped having the "flu" and THEN went over year before I was persuaded by a very bad relapse to try SOMETHING else
It appears to me (and I'm not a dr either) that you can't tolerate the older generation DMDs due to their side effects and injection site reactions.
I'm not pushing Tysabri on anyone, but only wish to make you and others here aware that we have the option of Tysabri available to us...pursuant to the approved FDA labeling, Tysabri is for patients with relapsing forms of MS that generally have not responded to, or cannot tolerate, other MS treatments. What this means is that Tysabri is a first line (like the ABCRs) and/or a second line defense/treatment for MS.
The phrase "cannot tolerate" can be interpreted by the treating physican to include their "needle-phobic" patients...or patients with "aggressive forms of relapsing MS"... , therefore, the patient does NOT necessarily have to fail one med first in order to have Tysabri. Pursuant to Dr. Katz and Dr. Temple of the FDA, they explained to the public in a Conference Call shortly after their Advisory Committee hearings in March, 2006 that the FDA's decision/language above was purposely left open and left up to the treating physican.
Whatever DMD you choose, I wish you good health and happiness, always. :)
Lauren
MSNik
04-30-2007, 04:27 PM
I just wanted to say having read Lauren's post, I agree with her, too. Its personal decision. And, you may very well be a good candidate for Tysabri; however, you also might not have gotten thru that really bad stage that alot of CRABs force on you...you need to really talk to your Neuro, evaluate if you gave Copaxone a fighting chance, or if you werent dedicated to giving it a long enough time to work- and then discuss whether or not you might be a good candidate for Tsyabri. Please keep up posted- and Lauren, great job explaining the whys or switching, or not to switch!
Nikki
Nikki
msladyinca
04-30-2007, 07:55 PM
Hi Nikki...
We sound like a Shakespearean playwriters with MS..."To Switch Or Not To Switch, That Is The Question". HeeHee ;)
Take care,
((((hugs))))
Lauren :wave:
We sound like a Shakespearean playwriters with MS..."To Switch Or Not To Switch, That Is The Question". HeeHee ;)
Take care,
((((hugs))))
Lauren :wave:
MSNik
04-30-2007, 08:54 PM
Hugs back at ya, Lauren. You are a very strong woman. Hey, I posted under a new thread a question about birth control pills...know anything about getting off of them while dx with MS?? If you do, please read the post.
Im having major issues with a war between MS doc (who says staying on is a good idea as estrogen helps prevent relapses) and GYN who says after 17 years and the decision to have a tubal- its time....
Looking for real responses from people who have been there (here) and am not getting any!!
Hope you are feeling good today..
Nik
Im having major issues with a war between MS doc (who says staying on is a good idea as estrogen helps prevent relapses) and GYN who says after 17 years and the decision to have a tubal- its time....
Looking for real responses from people who have been there (here) and am not getting any!!
Hope you are feeling good today..
Nik
Lisa_P
05-01-2007, 10:17 AM
They're coming to take me away, Ha-ha
They're coming to take me away, Ho-ho
Hee-hee-haa-haa
To the funny farm
Where life is beautiful all the time
And I'll be happy to see those
Nice young men in their clean white coats and
They're coming to take me away, ha-ha!
:dizzy:
They're coming to take me away, Ho-ho
Hee-hee-haa-haa
To the funny farm
Where life is beautiful all the time
And I'll be happy to see those
Nice young men in their clean white coats and
They're coming to take me away, ha-ha!
:dizzy:
MSNik
05-01-2007, 05:33 PM
Lisa,
Are you okay? ALittle concerned since this post had pretty much nothing to do with the thread...but since you must have had a reason for posting this...well, just checking on you.
Nikki
Are you okay? ALittle concerned since this post had pretty much nothing to do with the thread...but since you must have had a reason for posting this...well, just checking on you.
Nikki
Lisa_P
05-01-2007, 06:31 PM
What's the big deal? Someone said "heehee" and this came to mind -- just a little levity! Geez.
MSNik
05-01-2007, 07:30 PM
hey, as long as you are okay...just trying to show some compassion...thats all.
You seemed alittle "off" when you posted that. I didnt get the connection..
As long as you are ok..
thats all that matters.
N
You seemed alittle "off" when you posted that. I didnt get the connection..
As long as you are ok..
thats all that matters.
N