Revimmune Testimonial and Questions Answered!
Posted: Tue Oct 30, 2007 6:51 am
This man sent me an email the other day trying to ease my fears about the treatment. I was able to ask him a ton of questions. Here is the email and the questions. Feel free to ask any questions!
Chris,
I have read many of your blogs on THISISMS and then I went to your website. After reading all of your material you appear to be extremely proactive in dealing with this disease. I am impressed. I am not a big reader of blogs but I have started as of late out of curiosity in regards to the general ms communities interest in Revimmune. I have had ms since 1995. The first five years was a piece of cake. The last seven have been a little more difficult. I have been on all the meds. Avonex, twice a week avonex, avonex in combination with copaxone and then rebif and copaxone. All this time there was also solumendrol at varying frequencies. Through all this you could say my disabilities are limited. The biggest issue is spasticity in my legs. I can walk around without aid but there is significant stiffness but it does not sound as bad as yours. Well the real reason I am writing this is due to your interest in Revimmune and insecurity about trying this procedure. I just finished the protocol in September. The procedure is very straight forward and I would not classify it as life threatening at all. If you get the chance to go ahead with this I would recommend it. Many doctors feel this could be a better solution than any of the drugs currently under investigation. Tovaxin being one of them. All of these current drugs under FDA scrutiny are immune modulators. Who knows what you are going to have 10-15 years down the road. It is too early to tell what the procedure will hold for me. I am still getting over the toxicity of the chemo and am dealing with the fatigue associated with low crit levels. THis is slowing coming back. 2-3 months they say and then hopefully we will see some improvements with the ms symptoms and damage. If you get the chance to give this a shot I say why not. I did. Just make sure you are in the best physical condition possible. It will help to get through the process and make the recovery easier. Feel free to write back and ask any questions you wish. Good luck.
Brett
Well I must say I was rather shocked to actually get an email from
someone who is involved in the treatment! I too tried Avonex (bleh)
and now take Copaxone and LDN. It seems to at least slowed me down
considerably. I've only been on roids a couple of time in pill form.
Never a drip. I've lost things on the right side of my body. I used
to play guitar and drums but those days are done for a while. You
said I could ask questions so here we go -(I draw in my deepest Ace
Ventura Pet Detective breath lol)!
Question 1 - I'm well over a 5.0 EDSS, and the lady I talked to wanted
people as such. What EDSS are you?
I am a four.
Question 2- I'm not huge on medical terms so when you say "protocol"
do you mean you have finished the treatment?
protocol is just the genertic term to describe the process. Every treatment has a protocol. HiCy or Revimmune is four days of high does cytoxan (cyclophosimide) and then a three week process of allowing your white blood cells to die off and then through seven days of nupogin shots you recreate another immune system.
Question 3- How long has it been?
I finished the treatment and came home on September 19th.
Question 4- Did you loose your hair?
I lost a little hair but shaved my head anyway.
Question 5- Are you on any medicines to rebuild your immune system or
to prevent infection or disease?
The nupogin got my bone marrow working to start and then I am on a general antibiotic for six months.
Question 6- Was there any hospital time?
No, It was all done through the in patient out patient facility.
Question 7- Was there any cost to you, or was it covered by insurance?
I rented a condo for the month in Baltimore which cost $3,000 but all the medical was covered by BC/BS. I hope it ends up being a deal for them. I was on Tysabri which was costing them about $4,000 per month and because I was able to get though the treatment with no issues or hospital time the cost to BC/BS is going to be about $30,000. If this works like everyone hopes, is was a good gample for the insurance company. They originally said no but I believe that the doctors explained the recent successes and they did the business analysis and decided it was a good gamble.
Question 8- What do you mean when you say "low crit." Never heard of it.
"crit" or "hematacrit" being my red blood cell level within my blood. This is an effect with the chemo treatment. Your red blood cells become a victim of the treatment and are killed off as well. I received one transfusion which was good and two transfusion of platletts. The low "crit" caused fatigue since this is what carries oxygen to your muscles. It takes a little while to get over this. 2-3 months.
Question 9- When you say a change in symptoms and damage does that
mean you will actually be allowed to see, or be told how your MRI
looks?
You should always be requesting to see how you MRI scans are and understand where and how many lesions you are dealing with. When I say damage I am referring to the damage done by the Chemo and the damage done by the MS. 2-3 months gets you back to where you started from from a stand point of getting over the Chemo and it is also the start of hopefully seeing some benefit of the process in regards to existing MS symptoms. Your body can regenerate some myelin. Once all the disease activity has stopped due to the Chemo and the new immune system, the body can start to heal itself in the areas of the lesions. If you have SPMS there is always disease activity and thus inflamation. Once this is gone and depending on the existing damage, you may have improvment of symptoms.
Question 10- From what you have been told, or understand, it is an
expectation to see some improvement? From what you know or heard, and I realize it's probably little, how have others treated by your doctors done?
Most of the cases in the Stoney Brook studies and the John Hopkins patients have been with individuasl with alot of disability. EDSS of 6 or greater with disease activity for many years. The duration of the disease can translate into more permanent disability. It is really hard to say for sure. The more recent the disablity could tranlate into it being more from inflamation than nerve damage and thus recovery could be better. They have had some very good case where patients have improved 3,4,5 EDSS levels. Say going from a 5 to a zero or one or a 6 to a 3. Some patients have seen little EDSS improvement but have not gotten any worse.
This protocol was orininally developed for other auto immune diseases and the success with some of those has been finominal. No disease activity for 3-4-5 years. The new phase three trial at John Hopkin has an end point of one year and the target is improvment of symptoms in the range of 40-60%. So for now I have an MRI every three months and we keep our fingers crossed for improvement.
Question 11- Was this treatment done in Long Island, or where was it done?
I was able to work with Dr. Kerr and Dr. Brodsky at John Hopkins. I can not say enough about the facililty and staff at that hospital. Unbelievable. I never felt for one second that I was embarking on a risky endevour. I had complete confidence in them from the very beginning. I gave this a shot because the upside is huge. Possible complete remission with a chance of improvement of existing symptoms. This is what Tysabri had promissed and it was the complete opposite for me, a continual steady slide, it was not working. If this does not work out these is always Tovaxin or something else on the horizon. If it does work and maybe my MS comes back in a few years then we do the process again. Revimmune, if it works or not, does not limit your choices for treatment in the future.
Question 12- How old are you, and what kind of physical shape are you in now?
This is where I may have a leg up on some people. I am 37 but I was a member of the United States Alpine Ski Team and raced world cup downhill and super G. This was in the late 80's and early 90's. I then went on to be an All American at the university of vermont and won an overall national title. I still try to train as I did when I was without MS. I am in the gym 5-6 days a week. I lift a lot of weights and try to combat the problems I am having in my legs with excersises that focus on the lower body like squats and plyometrics. (jumping, hoping, bounding) I can no longer run and with the spacsticity walking long distences is out to but you can do short explosive moves that keep you muscles working. I do a lot of this to failure and somtimes I really can't walk far afterward until my muscles recover over night. My workouts really keep me sane.
Question 13- Do you mind if I copy and paste this email and the
responses to your questions? I will keep you 100% anonymous if you'd
like.
I would be honored for you to post this and I would be more than happy to answer additional questions that you or anyone else might have. What is your current situation about being on a list and being #65?
I hope this helps and take care.
Brett
Hows that for service folks? LOL Hope this helps!
Chris,
I have read many of your blogs on THISISMS and then I went to your website. After reading all of your material you appear to be extremely proactive in dealing with this disease. I am impressed. I am not a big reader of blogs but I have started as of late out of curiosity in regards to the general ms communities interest in Revimmune. I have had ms since 1995. The first five years was a piece of cake. The last seven have been a little more difficult. I have been on all the meds. Avonex, twice a week avonex, avonex in combination with copaxone and then rebif and copaxone. All this time there was also solumendrol at varying frequencies. Through all this you could say my disabilities are limited. The biggest issue is spasticity in my legs. I can walk around without aid but there is significant stiffness but it does not sound as bad as yours. Well the real reason I am writing this is due to your interest in Revimmune and insecurity about trying this procedure. I just finished the protocol in September. The procedure is very straight forward and I would not classify it as life threatening at all. If you get the chance to go ahead with this I would recommend it. Many doctors feel this could be a better solution than any of the drugs currently under investigation. Tovaxin being one of them. All of these current drugs under FDA scrutiny are immune modulators. Who knows what you are going to have 10-15 years down the road. It is too early to tell what the procedure will hold for me. I am still getting over the toxicity of the chemo and am dealing with the fatigue associated with low crit levels. THis is slowing coming back. 2-3 months they say and then hopefully we will see some improvements with the ms symptoms and damage. If you get the chance to give this a shot I say why not. I did. Just make sure you are in the best physical condition possible. It will help to get through the process and make the recovery easier. Feel free to write back and ask any questions you wish. Good luck.
Brett
Well I must say I was rather shocked to actually get an email from
someone who is involved in the treatment! I too tried Avonex (bleh)
and now take Copaxone and LDN. It seems to at least slowed me down
considerably. I've only been on roids a couple of time in pill form.
Never a drip. I've lost things on the right side of my body. I used
to play guitar and drums but those days are done for a while. You
said I could ask questions so here we go -(I draw in my deepest Ace
Ventura Pet Detective breath lol)!
Question 1 - I'm well over a 5.0 EDSS, and the lady I talked to wanted
people as such. What EDSS are you?
I am a four.
Question 2- I'm not huge on medical terms so when you say "protocol"
do you mean you have finished the treatment?
protocol is just the genertic term to describe the process. Every treatment has a protocol. HiCy or Revimmune is four days of high does cytoxan (cyclophosimide) and then a three week process of allowing your white blood cells to die off and then through seven days of nupogin shots you recreate another immune system.
Question 3- How long has it been?
I finished the treatment and came home on September 19th.
Question 4- Did you loose your hair?
I lost a little hair but shaved my head anyway.
Question 5- Are you on any medicines to rebuild your immune system or
to prevent infection or disease?
The nupogin got my bone marrow working to start and then I am on a general antibiotic for six months.
Question 6- Was there any hospital time?
No, It was all done through the in patient out patient facility.
Question 7- Was there any cost to you, or was it covered by insurance?
I rented a condo for the month in Baltimore which cost $3,000 but all the medical was covered by BC/BS. I hope it ends up being a deal for them. I was on Tysabri which was costing them about $4,000 per month and because I was able to get though the treatment with no issues or hospital time the cost to BC/BS is going to be about $30,000. If this works like everyone hopes, is was a good gample for the insurance company. They originally said no but I believe that the doctors explained the recent successes and they did the business analysis and decided it was a good gamble.
Question 8- What do you mean when you say "low crit." Never heard of it.
"crit" or "hematacrit" being my red blood cell level within my blood. This is an effect with the chemo treatment. Your red blood cells become a victim of the treatment and are killed off as well. I received one transfusion which was good and two transfusion of platletts. The low "crit" caused fatigue since this is what carries oxygen to your muscles. It takes a little while to get over this. 2-3 months.
Question 9- When you say a change in symptoms and damage does that
mean you will actually be allowed to see, or be told how your MRI
looks?
You should always be requesting to see how you MRI scans are and understand where and how many lesions you are dealing with. When I say damage I am referring to the damage done by the Chemo and the damage done by the MS. 2-3 months gets you back to where you started from from a stand point of getting over the Chemo and it is also the start of hopefully seeing some benefit of the process in regards to existing MS symptoms. Your body can regenerate some myelin. Once all the disease activity has stopped due to the Chemo and the new immune system, the body can start to heal itself in the areas of the lesions. If you have SPMS there is always disease activity and thus inflamation. Once this is gone and depending on the existing damage, you may have improvment of symptoms.
Question 10- From what you have been told, or understand, it is an
expectation to see some improvement? From what you know or heard, and I realize it's probably little, how have others treated by your doctors done?
Most of the cases in the Stoney Brook studies and the John Hopkins patients have been with individuasl with alot of disability. EDSS of 6 or greater with disease activity for many years. The duration of the disease can translate into more permanent disability. It is really hard to say for sure. The more recent the disablity could tranlate into it being more from inflamation than nerve damage and thus recovery could be better. They have had some very good case where patients have improved 3,4,5 EDSS levels. Say going from a 5 to a zero or one or a 6 to a 3. Some patients have seen little EDSS improvement but have not gotten any worse.
This protocol was orininally developed for other auto immune diseases and the success with some of those has been finominal. No disease activity for 3-4-5 years. The new phase three trial at John Hopkin has an end point of one year and the target is improvment of symptoms in the range of 40-60%. So for now I have an MRI every three months and we keep our fingers crossed for improvement.
Question 11- Was this treatment done in Long Island, or where was it done?
I was able to work with Dr. Kerr and Dr. Brodsky at John Hopkins. I can not say enough about the facililty and staff at that hospital. Unbelievable. I never felt for one second that I was embarking on a risky endevour. I had complete confidence in them from the very beginning. I gave this a shot because the upside is huge. Possible complete remission with a chance of improvement of existing symptoms. This is what Tysabri had promissed and it was the complete opposite for me, a continual steady slide, it was not working. If this does not work out these is always Tovaxin or something else on the horizon. If it does work and maybe my MS comes back in a few years then we do the process again. Revimmune, if it works or not, does not limit your choices for treatment in the future.
Question 12- How old are you, and what kind of physical shape are you in now?
This is where I may have a leg up on some people. I am 37 but I was a member of the United States Alpine Ski Team and raced world cup downhill and super G. This was in the late 80's and early 90's. I then went on to be an All American at the university of vermont and won an overall national title. I still try to train as I did when I was without MS. I am in the gym 5-6 days a week. I lift a lot of weights and try to combat the problems I am having in my legs with excersises that focus on the lower body like squats and plyometrics. (jumping, hoping, bounding) I can no longer run and with the spacsticity walking long distences is out to but you can do short explosive moves that keep you muscles working. I do a lot of this to failure and somtimes I really can't walk far afterward until my muscles recover over night. My workouts really keep me sane.
Question 13- Do you mind if I copy and paste this email and the
responses to your questions? I will keep you 100% anonymous if you'd
like.
I would be honored for you to post this and I would be more than happy to answer additional questions that you or anyone else might have. What is your current situation about being on a list and being #65?
I hope this helps and take care.
Brett
Hows that for service folks? LOL Hope this helps!