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

Baltimore in May?


Looks like my re-dose is going to have happen in early May.

Anyone visiting Hopkins in May? Wanna visit me, too?

As of now, the 4 days that are in-patient receiving chemo, I will be there alone. :(

I'm scared as heck this time as someone told me that the cytoxin has a cumulative effect. I didn't get sick at all last time and it worried ...
Read more : Baltimore in May? | Views : 6023 | Replies : 26

cytoxan therapy

I've been all fo the FDA-approved drug therapies and received no positive benefits. My neurologist mentioned Cytoxan and I really like the idea of that. He also wants me to use Copaxone with it.I'd be game, but I'll have to pay almost 2k a month for that. That's cost-prohibitive for us. I'd like to hear from people who've used Cytoxan alone or with another affordable drug.
Read more : cytoxan therapy | Views : 23962 | Replies : 47

To re-dose or not...?

So, that is my question!

Dr. Kerr told me to re-dose, sooner than later, as I have some symptoms.

My last MRI did not have any enhancement (this was in March. December had enhancement). No word that the lesions are shrinking or anything.

I'm just not sure what to do. I wish it was local and hate that I can't have a doctor here in Los Angeles do this with me.

I also hate that ...
Read more : To re-dose or not...? | Views : 2225 | Replies : 2

Almost 12 months on from HiCy - MRI Results and Round Up

Hello All,

Mel's first dose of HicY was April 24th 2008.

So here we are nearly a year on and she had her latest MRI and all is good, well all is excellent.

No enhancing lesions.
No spinal lesions.
No black holes.
Stable and reduced existing lesions.

No signs of activity at all.

The best news is this is the second MRI that states no black holes, when diagnosed she had two black holes (and ...
Read more : Almost 12 months on from HiCy - MRI Results and Round Up | Views : 4683 | Replies : 16

I did High Dose Cytoxan Treatment in North Carolina.

I am so glad to find this forum! I received my final dose of high dose cytoxan on March 19th and have been home for two weeks. I am a 43 year old woman diagnosed with RRMS in '94. Progressed to SPMS in '00 and have experienced slow disability (especially gait) since then. Progression really picked up about three/four years ago and none of the conventional treatments helped.

My neurologist (Dr. Ugo Goetzl of Raleigh ...
Read more : I did High Dose Cytoxan Treatment in North Carolina. | Views : 6135 | Replies : 16

MRI comparison shots

I thought this may be nice to show for my one year anniversary and to show some clinical proof HiCy works.
Read more : MRI comparison shots | Views : 2072 | Replies : 2

Getting an MRI monday

I decided to get a new MRI. I had this disease for over a decade and a half. Always considered RRMS, but not sure if the most recent MRI will show any enhancement so I have to admit I am a little nervous. Funny I used to be worried I would show active lesion, now I am worried I might not.

At any rate, I thought I would start off getting an MRI to see ...
Read more : Getting an MRI monday | Views : 1515 | Replies : 1

PT Schedule

Mon AM- Water 45 min
Mon PM- Bowflex

Tues AM- Land gait training 45 min
Tues PM- Bowflex

Wed AM- Water 45 min
Wed PM- Bowflex

Thurs AM-Water 45min
Thurs PM- Bowlflex

Fri AM- Land gait training 45 min
Fri PM-Bowflex

This is my PT schedule until the 1st week of June. Remember, we are trying to have me walking without my cane for the 25 foot walk by June and by September maybe we ...
Read more : PT Schedule | Views : 3228 | Replies : 13

My 9 month HiCy follow-up

Had my 9 month at Hopkins. I should preface this by saying that my symptoms have increased over the last 2 months but no reactivation. I will list them to get them all in:

1. more numbness in hands and great loss of dexterity. I am having trouble brushing and bathing- still better tham before HiCy. That peg test was almost impossible.

2. Spasticity in my legs- particularly right one is really bad- timed walk ...
Read more : My 9 month HiCy follow-up | Views : 10213 | Replies : 23

Letter from Baxtor

Dear Chris Young:

We appreciate your interest and enthusiasm regarding cyclophosphamide, a life-sustaining and well-established chemotherapy agent.

There currently is ample supply of cyclophosphamide, and Baxter
continues to make it available to its customer base, including Accentia,
the makers of Revimmune. It’s important to note that the intended and
approved use of cyclophosphamide is as a chemotherapy agent, and Baxter does not currently have approval for cyclophosphamide’s use in addressing multiple sclerosis (MS). However, as ...
Read more : Letter from Baxtor | Views : 2053 | Replies : 3


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