New neuro

A board to discuss Revimmune as a potential therapy for multiple sclerosis

New neuro

Postby mrhodes40 » Fri May 23, 2008 6:39 pm

My neuro moved to to be director of the Stanford MS center (Jeff Dunn)
I had to get a new guy so I got a local person instead of making the big trip to Seattle all the time.

Wow, different having a neuro who is not an MS center! he was against everything beyond regular CRABS including revimmune "That'll hurt your kidneys". (He had prescribed novantrone to 4 people and all of them got heart damage, one dying, so thus you get a caring guy who is against everything pretty much. He is really negative about how toxic the treatments are and how awful it is we thrust this on people)

Hmmm I thought as far as cytoxan, it was bladder cancer, and they knew about it and protected it with a drug.......

Anyway he did suggest since I have RA too that I might try rituximab as it is approved for that disease. It is a b-cell depletor that is being trialed in MS but it is still early, like a stage 2. What they see in the stage 2 is that the b cells are depleted and it results in dramatic reductions in lesions and relapses, showing the b cells are partially mediating MS.

Interestingly at 48 weeks, the end of the MS trial, the b cells were still depleted, treatment effect still going with that only one treatment of 2 IV's.

Since revimmune also knocks out b cells it should work at least as well, but by one year a person should have a normal and functional immune system, not one that does not work yet. I expect with time there may prove to be issues with infection in those rituxan patients.

I can see little advantage to going for this first, can anyone else? The one advantage I can think of is that it will make it clear I have tried more than just copaxone and methotrexate and prednisone, plus raise my "expenses" so the cost of revimmune looks better.

I've refused avonex and can't see any reason to go for that at this point because copaxone controls my RA too, as the pred and the MTX did. So the rituxan would be good for the RA and maybe for both diseases.

If I went for it I also guess I would possibly not be eligible for the revimmune as the long term immune suppression would probably still be there for a long time it appears?

And revimmune wipes out both b and t cells, plus gives you stems to boot, so in my mind it is superior.

This offer of rituxan based on the fact I have RA is probaly not a good idea.
thoughts?
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Postby chrishasms » Sat May 24, 2008 7:20 am

Wow

Where to start....

I did the Revimmune because I figured if I died they would learn something. No one with MS has ever come close. Plus there are no long term side effects from this either.

I just wanted something that would be done quick. I wanted to let my body do the work. I didn't want a long drawn out process of doing drugs that just helped. I wanted this done.

The doctors will not tell you this yet but I will. Tovaxin and Revimmune have got MS beat dear. I am getting better.

Do the revimmune honey. Dr. Kerr and Dr. Hammond are now my neuro's for the next 2 years.

In two years when I tell a new neuro what I did he can't chastise me because all he is doing is monitor and maintain. I already got me better and the neuro knows I can do it again and go somewhere else. lol
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Postby chrishasms » Sat May 24, 2008 9:08 am

I forgot to mention that with RA they might absolutely love to see you because it could make that better.
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Postby mrhodes40 » Sat May 24, 2008 10:39 am

Thank you Chris for the input.

See, you put your finger on it "no long term side effects". THAT is the whole advantage in a nutshell.

Reboot with no long term commitment. If you need something different down the road or if they come up with a different thing that works even better, I am assuming you can have it.

One thing that bugs me about all these newer drugs is that the studies last like 2 years at the outside. What happens to someone who has been on this kind of suppressive therapy for 6,8,12 , 20 years? I hope to live that much longer and then some. ..as long as I have some quality of life.

I wrote to the new head of my old MS clinic, a guy who came to our area originally from JH, and asked him to consider being the west coast center for accentia's protocol (like I have the right to offer that LOL!). JH's team is already coming to Seattle to give a several day seminar in June, so potentially they could talk and discuss it then if the clinic was interested. I have my fingers crossed on that!

I am not feeling too positive about the rituxan though I did find that it is being used post ASCT to improve survival and cancer free years in cancer patients.
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Postby robbie » Sat May 24, 2008 1:15 pm

20 years? I hope to live that much longer and then some. ..as long as I have some quality of life.

you are so right quality of life is the key to this whole thing. mines gone now so i'm not sure what to do .
Had ms for over 19 years now.
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Postby mrhodes40 » Sat May 24, 2008 4:40 pm

Chris you posted same time as I, Yes Carrie sounded excited about the dual disease situation. Glad it makes someone happy! :?

Robbie I do not know what to say. I am just really sorry any of us has to have this disease. I can say the first 10 years were the worst. After that there is an acceptance of the fact the MS is real and it's there and you are not in control, though this does not mean you accept it without fighting!

I am an edss6 probably SPMS (though they are reluctant to say so...makes the meds harder to consider but it's really progressive) and I still hope to find a better medical management that works.

My ultimate solution is to float my way through the potentially too difficult days on a cloud of MJ. I feel comforted knowing I have a plan for that.

I got it at 30 I am now 47.

Honestly, the greatest hero in the greatest story ever has nothing on us. We are very brave every day we get up and face a day, every time we face our discomfort with our new appearance, every time we face our PT exercise program, put on a brace, attempt to do our own care even if we need help, every time we be kind or help another in spite of our situation, every time we have to cope with some bodily funciton that leaves us feeling dependant and helpless, and all the private hells we live in that the regular a"normal" world does not begin to fathom.

MS is OUR challenge. I try to say that I will just have to be brave and have courage, but sometimes I do not want to. Brave or not, it is here, so let's choose brave!

I do not know if this helps but thinking like this helps me cope.

Blessings Robbie!
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