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

HiCy PPMS Trial

At my appointment with Dr. Kerr last Sept he mentioned that he would be starting a trial of HiCy with a few PPMS patients and he said that he would have some preliminary results in about six months.

I emailed him in Feb to inquire about the status of the trial and he responded that it would be about another four months before he had any data.

I have tried to email him several times ...
Read more : HiCy PPMS Trial | Views : 2674 | Replies : 2


question

I read revimmune doesnt work with people who dont have any enhancenced lesions. Has anyone recently had this treatment who has not shown enhanancement for years?

My MS has been mild and I have had it for years, but recently I been having new symptoms. Tingling, burning muscle pain, just no energy, so tired I feel like someone gave me a sleeping pill etc...

My last MRI has been stable, like it always has been ...
Read more : question | Views : 2872 | Replies : 10


Got an email from Dr. Kerr regarding my MRI on Thursday.

"got it. the MRI looks great Chris. The MS is completely and totally inactive. Good news!!"

That is the email I got from the good doctor verbatim.

So it definitely looks like the treatment in addition to the Copaxone has cured the Auto Immune side of MS. I am going to use the word cure until I pop something active or new again.

I am a believer this may be a venous issue so even ...
Read more : Got an email from Dr. Kerr regarding my MRI on Thursday. | Views : 2573 | Replies : 3


My new MRI

Some lesions are now completely gone with all of them healing now.

Seems to be working on the AI side of MS.
Read more : My new MRI | Views : 1980 | Replies : 1


Keri??

How are you???
Read more : Keri?? | Views : 2953 | Replies : 4


vitamin D?

Does anyone know how much vitamin D (and what kind? d2 or d3??) the people who did hicy @ Rush are currently taking?

thanks,

keri
Read more : vitamin D? | Views : 4163 | Replies : 11


Hi-Cy - where and how much?

Hello Everyone: Thank you for posting so many positive comments. It always makes me happy to read them and to know there is some hope to at least lessen the effects of this horrible disease.

My questions: where and how much?

I'd really like to take this treament early (I've been diagnosed with RRMS for just over a year now) and I'd really like to know who to contact to (hopefully) get this thing started. ...
Read more : Hi-Cy - where and how much? | Views : 3522 | Replies : 7


white count 6600!!

OMG, the nurses couldn't believe it. WBC went from 730 to 6600.

And my neuts went from 29 yesterday to 3334 today!!

I could be gone from here early next week. Only need 3 days with counts over 1000. Today is day 1 of that.

But I will say this - I was in terrible pain last night, could barely walk - even had to call the on-call IPOP doc.... was a reaction to the ...
Read more : white count 6600!! | Views : 2405 | Replies : 5


Nine Weeks Post Treatment-NC

I am nine weeks out of HiCy treatment (in NC) and just finished my third week of PT (going twice weekly). I wanted to check in with you veterans and see if where I'm at sounds "normal" to everyone.

I too experienced some issues with increased spasticity beginning about two weeks out of treatment. However, since I have a baclofen pump, it was fairly easy to rectify. The neurosurgeon simply increased the dosage over a ...
Read more : Nine Weeks Post Treatment-NC | Views : 1870 | Replies : 1


white count 730 and rising

So my white count never got down to zero - but only to 110. My neutrophils did hit ZERO and stay there for 2 days. They are now at 29, while my wbc is 730. I'm on my way up..... successfully rebooting!

No complications as of yet, either.

Today was Day 3 of the growth hormone shots.

Thanks for all of your well wishes,

~Keri
Read more : white count 730 and rising | Views : 1618 | Replies : 2


 

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