This Is MS Multiple Sclerosis Community: Knowledge & Support

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!

Wow, that's pretty good Chris. Someone with first hand experience. What I like is that there is nothing contrary to what I've read, which for my purposes makes the many things I hadn't heard more believable.

I took offense at that, but in truth, many doctors may feel that way.

Very interesting reading and I appreciate Brett volunteering the information and I appreciate your considering the rest of us and posting it!

Bob

I thought the same thing at first, but I can kind of understand. A perfect example is how a great deal of Neuro's seem to believe MS isn't just the White Matter, but also Gray Matter disease.

This would also make sense as to why so many people like myself seem to feel LDN is helping but it doesn't show it on an MRI.

It could also be why some folk on Tovaxin are not responding, there are more than one kind of T-cell being effected. I see where Tovaxin will work, but if they can do one treatment for 4 days and that is all, well Tovaxin would be out of business. Rather than finding another mrtc, kill em all and let it start over is their thinking I guess.

I'm fascinated to see what becomes of Tovaxin, Revimmune, Neurovax,...etc. I would rather have a shot of Tovaxin than 4 days of Chemo, but I got to make hay while the sun is shining.

Hi Chris,
At this moment, what would you do if Johns Hopkins called and wanted to give you an appointment date?
Bob

What time does the flight leave?

That's what I thought, and I'd probably do the same if I were you!
Bob

It was amazing to get on-line today and read the update on Revimmune. Thank you, Brett, for your post. It is great to hear from someone who participated in the study. If you know of others who have received this treatment, please encourage them to post also. We need all the first hand information we can get. Please continue to update us on how you are doing.

Bob,

Don't take offense to the Tovaxin comment.



It is really an issue of what works and what doesn't. Everyone is different and some treatments are not for everyone so the more that is available the better. I have been on everything over 13 years and so the Revimmune solution was the next option to fight this disease. I won't kid you the process was not fun. JH will say I flew through it with flying colors but as any Chemo patient will tell you killing all the white blood cells in your body and a good chunk of red ones to is physically a little taxing.

In regards to the thought process behind this protocol it is just what Chris suggested. Something along the way made the immune systems of MS patients go off the track. It took 26 years before mine went a stray. The trigger with some other people is longer some shorter. Once the lymphocytes have learned this bad habbit they continue to duplicate. Why some people have little activity and some a lot I don't think anyone knows. There is some thinking out there today that B-Cells also can be involved in the MS process with the T-cells so lets just kill them all and start from scratch.

This protocol started with other auto immune diseases. They had very good results and so to try it in MS was the next step. With all the drugs in development that appear to have much better results than the ABC drugs it is only a matter of time that these other drugs will be forgotten.

I am open to other questions if you can think of any.

Brett

Oh my hair, I'm so pretty though....lolololol

I had forgotten to ask you Brett, did you give a pint of your own blood pretreatment or did they use donated blood?

Also,were you throwing up and violently ill at all, or is it just a, "I am so tired I'm going to sleep this off" kinda thing.

I've heard Chemo sucks and makes you sick as hell. Then again so does MS.

I'm waiting on a call back today from the Dr, or his nurse. Dr. Gladstone up in Long Island somewhere. When I became #65 they told me to call back in a month to check on the progress of getting things setup. I actually waited a bit longer, to not be a pest, and I should here something today.

The fact BC/BS covered it amazed me. I always knew it was cheaper to eradicate rather than control and I couldn't figure out why they wouldn't at least try it.

Man...for the first time this actually hit me and I just teared up a bit. Right now. I could be on the verge of something huge! lol

Hi Brett,
Welcome to the forum and I'm really glad you joined. Because long term suppression has been medically accepted for so long, most people are convinced that is the "safe" way to go. The truth of the matter is that suppressing is just what it sounds like, dampening, slowing down, weakening the immune system and that doesn't have the capability to "cure" the disease.

I think it's been shown that the bone marrow isn't responsible for the multiple sclerosis process, meaning that a high dose of an immune suppressant (Cyclophosphamide) over a short period can eliminate the faulty immune system and let the bone marrow create a new, healthy immune system (Revimmune process), yet not leave the recipient susceptible to dangers like PML which require over suppression over a longer time.

In other words, it seems that high dose, short term, is safer and offers the chance of actually eliminating the disease, whereas the only thing long term suppression has in it's favor is that it's medically accepted and covered by insurance.

I appreciate you saying that Brett and it was clear that it was the doctor's opinion and not yours. It probably sounds overly smug, but when it comes to MS I've learned not to put much stock in doctor's opinions!

I have great hopes for the revolutionary new idea of "rebooting" the immune system, which at this time happens to be using high dose cyclophosphamide and Campath 1h. I imagine researchers will eventually develop substances which more specifically eliminate and let regrow ONLY the factors involved in the MS process, which will result in shorter and safer recovery times.

Tovaxin, on the other hand, eliminates specifically the IDENTIFIABLE T cells involved in the MS process, which is a marvelous improvement over simple suppression but, if Tovaxin has a downside it is that it has no effect on the B memory cells, the cells responsible for "remembering" myelin as deserving attack.

This situation means that Tovaxin has to be readministered periodically. In that light, there is no clear danger involved with Tovaxin. In the 50% of those with MS whose mrtc's can be identified Tovaxin has shown to be almost 100% effective.

If Opexa researchers are ever able to approach 100% in identifying responsible mrtc's, and if they are ever able to identify and eliminate the B cells responsible for the reciprocation of the MS disease process, that would be the ultimate and most preferable solution to MS.......an effective, one time MS treatment without danger of long term risk.

This really is the "old west" days of MS treatment in which people entering into experimental treatments can as easily face danger with no benefit as face a cure. Out of all the things out there currently, I'm convinced you got into the right one and I'm just absolutely convinced you won't be sorry. Cyclophosphamide has been around since the 1950's, so it isn't that you're dealing with a substances which long term history is unknown and that alone is worth a lot.

Again, thanks for joining, this is going to be interesting!

Bob

Chris,

I tossed my cookies twice which wasn't that bad. The Chemo really just made me very nauseous for four days. You just don't feel like eating much. They give you plenty of meds for this which helped.

From past results I am confident this will work. I was never worried about the process since as you pointed out cytoxan has a long track record and this protocol has been around for quite a few years. The only question is what disability do I get back. Like I said earlier there are some patients whose recovery was amazing but these patients had the disease a limited amount of time and thus their proplems were more inflamation oriented not actual nerve and severe myelin damage. I am also responsible for a lot of the stiffness that I deal with do to my own work out regimen.

I can't believe Chris that you have never had IV steroids???? How did your doctors deal with flair ups? I was practically self medicating with
monthly pulses for awhile and larger three or five day courses during real episodes. These doses stopped once I was on Tysabri. I think this drug does work. I had a history of flares every April. I had another on Tysabri last spring but it appeared to be very minor which is one of the benefits it is supposed to have.

I have been around this site for many years. I have been quite till now and I hope I can shed some light on this process if people want to know what it is all about. I scrambled for first hand knowledge before I started and there wasn't much.

Brett

Chris,

On the blood issue they just use donated blood. They expained all of this and its save. Most of the donors of blood are repeat customers so everything is very well screened.

Brett

OK you guys, what's the blood for?
Bob

I always had received Prednisone in a pill form. He said there wasn't any real concrete evidence between pill form of steroids verses getting a drip and it's effectiveness. Its a 6 pill for 4 days, 4 pills for 4 days, 2 pills for 4 days, 1 pill for 4 days, 1/2 pill for 4 days.

See, My MRI wasn't or has never been to much of a brain issue. I have a couple of lesions, and the last one I didn't have one active lesion. My stuff is in my Spine which is a real pisser. I got them in my lower Spine, One in my neck, and one right in the middle of it.

This from what I understand is what causes most of my spasticity, clonus, hesitancy, and foot drop. I do have fatigue, and this effects my ability to keep a conversation at the end of a day, and I do need a nap every now and again depending on what I'm doing. I take Amantidine for it and it helps mildly.

My hope is like you said, the people who have been treated up till now have had more severe EDSS scores. This means that there was some inflammation. but there was also some rebuilding. I know the overall goal is 40 to 60 percent but that is such a relative term. What is 50% of what I had? IT'S BETTER AND THATS ALL THAT MATTERS!! lol

Look at this, I was Diag'd in 2004: <shortened url>

Bob,

The blood is in regards to the transfusion I received. The Chemo kills red and white blood cells. Without enough red cells you can't get enough O2 to your muscles so there is the need for the transfusion. THis is the same for the platelets. No platelets and your not going to stop bleeding if cut.

I am not sure about the whole pill vs. IV chris but I am not a doctor.

Brett