Aa
Ok, so the new MRIs are in and...
My neuro calls and tells me that there are new lesions in the C-Spine (2, if I remember correctly) as well as a "re-activated" lesion that I had in C-3/4, which is the first lesion that I've ever had. The brain MRI came back "normal" even though I've had ON symptoms for about a month now - go figure.
One thing that I don't understand is that he said "We're seeing new lesions in the spine, which we _never_ like to see" which I don't really get. Don't we "not like to see new lesions" _ever_ when we're on a DMD (I've been on Avonex for 5 months)?
He also hinted at Tysabri, which I'm very much against at this point because of the risk involved, but my insurance requires the failure of 2 CRABs before they'll approve Tysabri, anyway.
Does this mean I've got an aggressive form of RRMS or is it possible that he just wants me to go on Tysabri because it's "better" than Avonex? I'm kind of worried about that implication now...
One thing that I don't understand is that he said "We're seeing new lesions in the spine, which we _never_ like to see" which I don't really get. Don't we "not like to see new lesions" _ever_ when we're on a DMD (I've been on Avonex for 5 months)?
He also hinted at Tysabri, which I'm very much against at this point because of the risk involved, but my insurance requires the failure of 2 CRABs before they'll approve Tysabri, anyway.
Does this mean I've got an aggressive form of RRMS or is it possible that he just wants me to go on Tysabri because it's "better" than Avonex? I'm kind of worried about that implication now...
Thanks so much Quix & Lulu for the warm welcome!
Jason: I'm so happy to hear that you are starting to feel better after your gallbladder surgery. It has been my experience that most of us (MS patients) have increased symptomatology when we have an injury or an illness (such as Jason requiring gallbladder surgery), and once such an injury or illness has been remedied, many MS symptoms clear up as they were only transient.
What concerns me though is that your L'Hermittes sign is getting worse. Trust me, it is not all in your head, whether it's transient or not; The symptoms we feel are real.
Again, it is up to you whether or not you wish to stay on Avonex and ride it out, hoping that your symptoms do not continue to increase over time. I pray your symptoms don't get worse, but if they do, call your doctor and discuss this with him as he may wish to change your medication. You do have options besides Tysabri, you have your choice of Novantrone, Betaseron, Rebif, Extavia (which is an interferon beta-1b) & Copaxone (all of them coming with side effects) ... see:
http://www.nationalmssociety.org/about-multiple-sclerosis/treatments/index.aspx
I do hope you start to feel better Jason as each day passes.
Lauren :)
Jason: I'm so happy to hear that you are starting to feel better after your gallbladder surgery. It has been my experience that most of us (MS patients) have increased symptomatology when we have an injury or an illness (such as Jason requiring gallbladder surgery), and once such an injury or illness has been remedied, many MS symptoms clear up as they were only transient.
What concerns me though is that your L'Hermittes sign is getting worse. Trust me, it is not all in your head, whether it's transient or not; The symptoms we feel are real.
Again, it is up to you whether or not you wish to stay on Avonex and ride it out, hoping that your symptoms do not continue to increase over time. I pray your symptoms don't get worse, but if they do, call your doctor and discuss this with him as he may wish to change your medication. You do have options besides Tysabri, you have your choice of Novantrone, Betaseron, Rebif, Extavia (which is an interferon beta-1b) & Copaxone (all of them coming with side effects) ... see:
http://www.nationalmssociety.org/about-multiple-sclerosis/treatments/index.aspx
I do hope you start to feel better Jason as each day passes.
Lauren :)
I went and spoke with my neurologist about the different things that were bothering me and he said that the reason that he doesn't want to see new lesions in the spine is because the way that MS has progressed in my case makes him concerned about my ability to walk if it keeps up. He said that he just wanted me to start thinking about Tysabri and that for now he's recommending that we stay with Avonex until there's another relapse.
In the meantime I had my gallbladder removed on November 20th and I'm happy to say that I do feel better, but now I tend to be more aware of the pain that hasn't gone away.
In the last two weeks though, I've been having intermittent bouts of vertigo and nausea, but the first one only lasted 3 days and then it went away until today. I still have problems with the L' Hermitte's sign and the creepy thing about that is that I think it’s getting worse, but I’m worried that it’s “all in my head”, so to speak. I’m thinking about going to see my neurologist about it, but I have a feeling that I’d be wasting my time.
It’s been a really tough year and I hope things will finally start getting better soon. We’ve had a lot of support both from online communities like this one and locally and we couldn’t have made it through without it. Thanks so much for everything!
In the meantime I had my gallbladder removed on November 20th and I'm happy to say that I do feel better, but now I tend to be more aware of the pain that hasn't gone away.
In the last two weeks though, I've been having intermittent bouts of vertigo and nausea, but the first one only lasted 3 days and then it went away until today. I still have problems with the L' Hermitte's sign and the creepy thing about that is that I think it’s getting worse, but I’m worried that it’s “all in my head”, so to speak. I’m thinking about going to see my neurologist about it, but I have a feeling that I’d be wasting my time.
It’s been a really tough year and I hope things will finally start getting better soon. We’ve had a lot of support both from online communities like this one and locally and we couldn’t have made it through without it. Thanks so much for everything!
Missladyinca and Quix - thanks for the additional information.
I hope Jason pops through and updates us on his progress. This post is from September and we haven't seen him around here since early October.
Jason - let us know what's up, ok?
my best,
Lulu
I hope Jason pops through and updates us on his progress. This post is from September and we haven't seen him around here since early October.
Jason - let us know what's up, ok?
my best,
Lulu
LadyInca- A big "hi" and a huge welcome to the forum. Your data and experience on Tysabri are also welcome. I was not aware of the data that many/most PML victims had priorly been on immunosuppressive therapy. Your desire to help support and inform MSers is so welcome here. This is far more a community than one of the forums that serves as a site for individual soapboxes.
Jason - I, too, am sorry to hear about the new lesions, but I would like to voice a word of caustion about discarding Avonex just yet. My neuro - whom I considered quite brilliant, though cold - was a researcher for Avonex and Tysabri. He spoke to me quite frankly and at length about his view of the different DMDs. When I was having relapses at 5 - 6 months on Avonex, he was quitel clear that the full effect of Avonex is just becoming apparent at 6 months and after. And when you look at the data, one thing that Rebif can boast of is showing it's effect faster than Avonex (ie. at about 4 months of use).
So, you could ride out the Avonex for a few more months and move into the period when Avonex has been shown to be effective. Or, as was mentioned above, you could move to one of the higher dose interferons. Now Rebif is exactly the same interferon as AVonex, Interferon-beta-1a. It is used at a higher dose and more often. Betaseron is Interferon-beta-1b. I have not read that there would be a difference in action if you moved to the "1b" as opposed to staying with the "1a" form. But, you might ask your doc.
Now, the reality is that the DMDs do not work for everyone. When the studies talk about a 40% or so reduction in lesions, that does NOT mean that "everyone" enjoys a 40% reduction. It more refers to the unfortunate fact that 40% of "users" will see a reduction in lesions.
Second, lesions in the spinal cord are more likely than lesions in the brain to cause symptoms. Remember that huge areas of the brain are silent and lesions in those areas will not speak up with symptoms. See the Health Page called "Lesions vs Symptoms".
http://www.medhelp.org/health_pages/Multiple%20Sclerosis/Lesions-vs-Symptoms/show/61?cid=36
and "Spinal Cord Lesions"
http://www.medhelp.org/health_pages/Multiple%20Sclerosis/Spinal-Cord-Lesions/show/764?cid=36
If you have confidence in your neuro, I would trust the signals you get from him. That trust is an important thing.
I hope the steroids do kick in soon and that you don't fall apart. That would be a bad thing. :((
Good to hear from you though.
Quix
Jason - I, too, am sorry to hear about the new lesions, but I would like to voice a word of caustion about discarding Avonex just yet. My neuro - whom I considered quite brilliant, though cold - was a researcher for Avonex and Tysabri. He spoke to me quite frankly and at length about his view of the different DMDs. When I was having relapses at 5 - 6 months on Avonex, he was quitel clear that the full effect of Avonex is just becoming apparent at 6 months and after. And when you look at the data, one thing that Rebif can boast of is showing it's effect faster than Avonex (ie. at about 4 months of use).
So, you could ride out the Avonex for a few more months and move into the period when Avonex has been shown to be effective. Or, as was mentioned above, you could move to one of the higher dose interferons. Now Rebif is exactly the same interferon as AVonex, Interferon-beta-1a. It is used at a higher dose and more often. Betaseron is Interferon-beta-1b. I have not read that there would be a difference in action if you moved to the "1b" as opposed to staying with the "1a" form. But, you might ask your doc.
Now, the reality is that the DMDs do not work for everyone. When the studies talk about a 40% or so reduction in lesions, that does NOT mean that "everyone" enjoys a 40% reduction. It more refers to the unfortunate fact that 40% of "users" will see a reduction in lesions.
Second, lesions in the spinal cord are more likely than lesions in the brain to cause symptoms. Remember that huge areas of the brain are silent and lesions in those areas will not speak up with symptoms. See the Health Page called "Lesions vs Symptoms".
http://www.medhelp.org/health_pages/Multiple%20Sclerosis/Lesions-vs-Symptoms/show/61?cid=36
and "Spinal Cord Lesions"
http://www.medhelp.org/health_pages/Multiple%20Sclerosis/Spinal-Cord-Lesions/show/764?cid=36
If you have confidence in your neuro, I would trust the signals you get from him. That trust is an important thing.
I hope the steroids do kick in soon and that you don't fall apart. That would be a bad thing. :((
Good to hear from you though.
Quix
Hi Jason,
From what you have posted, it seems to me (and I'm not a doctor), that even though you have been and still are on Avonex, apparently you are having "breakthrough disease activity", even while on an interferon.
Tysabri is 68% effective at preventing further relapses, slowing the disease process down, and in some patients-even showing symptom improvements. The efficacy's of Avonex, Betaseron, Copaxone, & Rebif are only 34% to 27%, respectively.
You really have nothing to fear from Tysabri as long as your immune system is not compromised (a.k.a. very, very low). The majority of PML cases were in Germany & almost all of them previously received Novantrone/Mito..., the other PML patients were previously on Azathioprine/Imuran, Methotrexate, Remicade, etc. There are also other medications which have been linked to PML, including CellCept, Raptiva, and even IVIG treatments.
I just completed my 41st Tysabri infusion the day before Thanksgiving. For me, since restarting the medication in October 2006, I have not had one single relapse nor any new lesions on my recent MRIs.
When I was originally on Tysabri in February 2005 (before they voluntarily remove Tysabri from the market temporarily), just two weeks after my very first infusion, my right drop foot was gone, my limp was gone, my optic neuritis completely cleared up, my slurred speech was gone, and I put my walker away--only using my cane for balance which had not completely returned at that point. I was so excited!
Unfortunately, on the day I was due to receive my second Tysabri infusion, the manufacturers (Biogen & Élan) temporarily removed Tysabri from the market so that they could review all of the case histories of persons taking Tysabri at that point (the general public & all the trial patients), and review all of the Safety Data so that they could resubmit Tysabri to the FDA for approval once again (Tysabri is only the second drug to be reapproved by the FDA). I was one of the MS patients that spoke before the FDA AC (via videotape) in March 2006 in an effort to bring Tysabri back to the market. I'm so very grateful that we all succeeded!
During those 18 months that Tysabri was off the market, I was hit by a severe relapse which ultimately put me in a wheelchair. And even though I am still wheelchair bound (that damage is probably permanent now), my Quality of Life has greatly improved and my MS is now stable, thank goodness. Considering I have had MS for almost 35 years, I am so very grateful that there is a medication out there that can prevent further relapses by 68%, slow the disease process down, and even show some MS patients benefiting greatly with symptom improvements, providing that the prior damage is not permanent.
Tysabri was the best choice I ever made for myself, and I don't miss my Avonex shots, nor my Copaxone shots..., I don't even miss all of their side effects & injection site reactions, woo hoo!
I wish you nothing but the very best Jason, and I support you and your choice no matter which medication you choose, just please, make a fully informed choice (Knowledge Is Power).
Many, many hugs..., Lauren :)
From what you have posted, it seems to me (and I'm not a doctor), that even though you have been and still are on Avonex, apparently you are having "breakthrough disease activity", even while on an interferon.
Tysabri is 68% effective at preventing further relapses, slowing the disease process down, and in some patients-even showing symptom improvements. The efficacy's of Avonex, Betaseron, Copaxone, & Rebif are only 34% to 27%, respectively.
You really have nothing to fear from Tysabri as long as your immune system is not compromised (a.k.a. very, very low). The majority of PML cases were in Germany & almost all of them previously received Novantrone/Mito..., the other PML patients were previously on Azathioprine/Imuran, Methotrexate, Remicade, etc. There are also other medications which have been linked to PML, including CellCept, Raptiva, and even IVIG treatments.
I just completed my 41st Tysabri infusion the day before Thanksgiving. For me, since restarting the medication in October 2006, I have not had one single relapse nor any new lesions on my recent MRIs.
When I was originally on Tysabri in February 2005 (before they voluntarily remove Tysabri from the market temporarily), just two weeks after my very first infusion, my right drop foot was gone, my limp was gone, my optic neuritis completely cleared up, my slurred speech was gone, and I put my walker away--only using my cane for balance which had not completely returned at that point. I was so excited!
Unfortunately, on the day I was due to receive my second Tysabri infusion, the manufacturers (Biogen & Élan) temporarily removed Tysabri from the market so that they could review all of the case histories of persons taking Tysabri at that point (the general public & all the trial patients), and review all of the Safety Data so that they could resubmit Tysabri to the FDA for approval once again (Tysabri is only the second drug to be reapproved by the FDA). I was one of the MS patients that spoke before the FDA AC (via videotape) in March 2006 in an effort to bring Tysabri back to the market. I'm so very grateful that we all succeeded!
During those 18 months that Tysabri was off the market, I was hit by a severe relapse which ultimately put me in a wheelchair. And even though I am still wheelchair bound (that damage is probably permanent now), my Quality of Life has greatly improved and my MS is now stable, thank goodness. Considering I have had MS for almost 35 years, I am so very grateful that there is a medication out there that can prevent further relapses by 68%, slow the disease process down, and even show some MS patients benefiting greatly with symptom improvements, providing that the prior damage is not permanent.
Tysabri was the best choice I ever made for myself, and I don't miss my Avonex shots, nor my Copaxone shots..., I don't even miss all of their side effects & injection site reactions, woo hoo!
I wish you nothing but the very best Jason, and I support you and your choice no matter which medication you choose, just please, make a fully informed choice (Knowledge Is Power).
Many, many hugs..., Lauren :)
Thank you so much for the support and just for taking the time to respond. I'm still having some side effects from the solumedrol, so it's been a really rough day. I'm sure I'll get through it, though, especially with the encouragement from you all.
Thanks and God bless!
Jason
Thanks and God bless!
Jason
Sweetie, I can't give you any advise as far as these drugs go ( I haven't been allowed any of them).
But I can remind you that stress is NEVER a good thing for any one, especially US, so how about figuring out want works for you to let some of the steam pressure off yourself. I know this will help a lot. I also know some times it's easier said then done..
Just so you know my hugs are on their way and Prayers are being said... I really hope you start feeling better very soon...
{{{{~!~}}}} Hang on to the hope.... some times it's the best we got...{{{~!~}}} DJ
But I can remind you that stress is NEVER a good thing for any one, especially US, so how about figuring out want works for you to let some of the steam pressure off yourself. I know this will help a lot. I also know some times it's easier said then done..
Just so you know my hugs are on their way and Prayers are being said... I really hope you start feeling better very soon...
{{{{~!~}}}} Hang on to the hope.... some times it's the best we got...{{{~!~}}} DJ
he he... well... "comfortable on Avonex" isn't exactly how I would put it. I haven't been able to do my own injection for over a month and a half now, but I know what you mean. I keep telling myself that this relapse could have been much worse and that Avonex did do something. I'm going to stick with Avonex until my neurologist says otherwise, he seems to know what he's doing so far :)...
Anyway, I just finished my last round of solumedrol yesterday evening and I feel horrible, but it usually takes a day or two to (or 5 to 7) to get over the initial treatment. I'm sure it will all come together soon... either that or I'll start to fall apart :) lol j/k
Anyway, I just finished my last round of solumedrol yesterday evening and I feel horrible, but it usually takes a day or two to (or 5 to 7) to get over the initial treatment. I'm sure it will all come together soon... either that or I'll start to fall apart :) lol j/k
Hey Jason This is stinky news but it could be a lot worse. You know the DMD's are not a cure for MS - there is no cure YET. The sole purpose of Copaxone, Rebif, Avonex and Betaseron is to slow the progression of the disease and reduce the number of relapses. If you look at the studies, people on these CRAB's still have relapses, they just don't have as many relapses as people who are not on a CRAB.
So it should not be a surprise to any of us on a DMD when we do have a relapse. The CRAB should be making it less intense and shorter in duration, hopefully.
If you are comfortable on Avonex, I think I would stick with it for a while longer and see what happens. But if a change is warranted, you can try something else.
You hate to waste perfectly good drugs, but sometimes it is better to waste them than to waste yourself!
I sure hope you feel better soon - hopefully the Solumedrol will kick in soon and give you some relief.
be well
Lulu
So it should not be a surprise to any of us on a DMD when we do have a relapse. The CRAB should be making it less intense and shorter in duration, hopefully.
If you are comfortable on Avonex, I think I would stick with it for a while longer and see what happens. But if a change is warranted, you can try something else.
You hate to waste perfectly good drugs, but sometimes it is better to waste them than to waste yourself!
I sure hope you feel better soon - hopefully the Solumedrol will kick in soon and give you some relief.
be well
Lulu
Hey -
Oh, good to hear w/the MRI machine.
Ok - No, Avonex and Copax are not comparable in terms of type or dosing. They have comparable effectiveness. Avonex, Betaseron, and Rebif are interferons and Copax is a peptide, so they work through the body buy by completely different mechanism.
I like the the thinking of your Doc with waiting more time to evaluate efficacy w/Avonex. The addition of the solumed may help to simmer down that active inflammation too.
Hang tight best you can Jas - when you get reeled up w/worry, just distract yourself with the thoughts of - it's been 5 months, and it takes that amount of time at least for the med to build up and be effective. And, if it's not - you'll switch later.
Thought it seems like it won't - that reminder of normal will come, even if it's small it will make you feel better.
Here for you,
shell
Oh, good to hear w/the MRI machine.
Ok - No, Avonex and Copax are not comparable in terms of type or dosing. They have comparable effectiveness. Avonex, Betaseron, and Rebif are interferons and Copax is a peptide, so they work through the body buy by completely different mechanism.
I like the the thinking of your Doc with waiting more time to evaluate efficacy w/Avonex. The addition of the solumed may help to simmer down that active inflammation too.
Hang tight best you can Jas - when you get reeled up w/worry, just distract yourself with the thoughts of - it's been 5 months, and it takes that amount of time at least for the med to build up and be effective. And, if it's not - you'll switch later.
Thought it seems like it won't - that reminder of normal will come, even if it's small it will make you feel better.
Here for you,
shell
Yeah, I just finished 2 days of 1 gram each of Solumedrol, so I'm sure that anything that is going on in there will be affected by it and will eventually heal. I always go to the same MRI machine in the hospital where I work for my MRIs and it's the 3T machine, so I have to assume that it's the same strength every time and I was told by my neurologist that they compared the original lesion in C3/4 to the new images and there was definitely enhancement going on which indicated activity. I originally felt like I was having new symptoms and a resurfacing of old ones, that's why I went in to see them in the first place, and I'm glad I did.
They didn't feel strongly about the switch, they just suggested it with kind of a nudge. I've been on .50mL prefilled syringes of Avonex for the whole time, so is that comparable to the Copaxone dose? They called and left me a message that they would be ok with me staying on Avonex to give it more time to evaluate it's efficacy if I wanted to, and since I just got another 3 month supply, I think I'm going to give it a shot (no pun intended).
It just makes me worry that if I have an aggressive form of RRMS, is any of this doing any good?
I feel like I'm spinning out of control and I just want things to go back to normal...
They didn't feel strongly about the switch, they just suggested it with kind of a nudge. I've been on .50mL prefilled syringes of Avonex for the whole time, so is that comparable to the Copaxone dose? They called and left me a message that they would be ok with me staying on Avonex to give it more time to evaluate it's efficacy if I wanted to, and since I just got another 3 month supply, I think I'm going to give it a shot (no pun intended).
It just makes me worry that if I have an aggressive form of RRMS, is any of this doing any good?
I feel like I'm spinning out of control and I just want things to go back to normal...
Hey Jason,
Sorry to hear about the additional lesions. Was this the same strength MRI as last time? And they were the images directly compared?
You can still be RRMS and have active lesions as well as an increase in lesions. Have you been feeling like you've been in a relapse/attack? And, did the Dr. feel strongly about a switch?
If so, if your fearful of the Tysabri you can always go to Rebif, which is 44mg, or Betaseron 1ml vs. the 30mgs you are on w/the Avonex. And, there is always the daily Copax, which I'm sure you know has shown to work for some too - though by different mechanism than the interferons.
If you stay w/interferons, least your body is already 5 months into them and it would just be an increase and sub-q.
Did they treat your ON Jason?
ttys,
Shell
Sorry to hear about the additional lesions. Was this the same strength MRI as last time? And they were the images directly compared?
You can still be RRMS and have active lesions as well as an increase in lesions. Have you been feeling like you've been in a relapse/attack? And, did the Dr. feel strongly about a switch?
If so, if your fearful of the Tysabri you can always go to Rebif, which is 44mg, or Betaseron 1ml vs. the 30mgs you are on w/the Avonex. And, there is always the daily Copax, which I'm sure you know has shown to work for some too - though by different mechanism than the interferons.
If you stay w/interferons, least your body is already 5 months into them and it would just be an increase and sub-q.
Did they treat your ON Jason?
ttys,
Shell
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
