Search found 153 matches

by RedPenguins
Sat Mar 03, 2012 8:08 pm
Forum: Introductions
Topic: Belgium, 9 months after diagnose. trial ocrelizumab/Rebif
Replies: 79
Views: 27375

Re: Belgium, 9 months after diagnose. trial ocrelizumab/Rebi

Hi, I'm in the US (California) and started in the Phase III study of ocrelizumab vs Rebif. I had my first dose (well half a dose) on Wednesday. I ran a low grade fever started 40minutes into the infusion. I had my first "rebif" shot on Wednesday after the infusion. I take my second shot today. I rea...
by RedPenguins
Fri Apr 29, 2011 8:36 am
Forum: Revimmune (cyclophosphamide or cytoxan)
Topic: Hopkins video
Replies: 23
Views: 12279

Hi Linda, I did Copaxone after treatment, from June 09 to early January 10. then I stopped bc I knew I wanted to get pregnant. I am on nothing now still as I am breastfeeding the baby :) I need to contact the docs at hopkins and see if I will go back on copaxone for preventative measures when I'm do...
by RedPenguins
Thu Apr 28, 2011 7:57 pm
Forum: Revimmune (cyclophosphamide or cytoxan)
Topic: Immunizations?
Replies: 4
Views: 5456

Yes, there's usually a protocol for redoing your immunizations. I only had some of mine done b/c I got pregnant before I finished. When I'm done breastfeeding, I will have the remainder of my vaccines. :)
by RedPenguins
Thu Apr 28, 2011 7:55 pm
Forum: Revimmune (cyclophosphamide or cytoxan)
Topic: Tysabri and Revimmune?
Replies: 3
Views: 5254

I had a few (2 or 3?) Tysabri treatments before doing HiCy. My last treatment was 30 days before I had HiCy at Hopkins.
by RedPenguins
Thu Apr 28, 2011 7:51 pm
Forum: Revimmune (cyclophosphamide or cytoxan)
Topic: Hopkins video
Replies: 23
Views: 12279

Good luck with whichever treatments you try. One HiCy patient on this board had a baby after HiCy, and she did it twice. Hi Steven and everyone - I am the person whom Steven was referring to. I had HiCy twice (July 08 and May 09). I am now approaching 2 yrs post hicy treatment #2. And knock wood (p...
by RedPenguins
Mon May 03, 2010 10:26 pm
Forum: Revimmune (cyclophosphamide or cytoxan)
Topic: 1 yr post HiCy (2nd round)...Great news!
Replies: 6
Views: 6367

1 yr post HiCy (2nd round)...Great news!

Well, this board is mostly "dead" now...but figured I'd drop a quick update in case anyone ever stops by. This week marks 1 year since I underwent a second course of HiCy. (first round 7/08, second 5/09). In this past year, I have not had symptoms or relapses.....prior to this, I had relapses every...
by RedPenguins
Mon May 03, 2010 10:21 pm
Forum: Revimmune (cyclophosphamide or cytoxan)
Topic: DENIED BY CHICAGO
Replies: 2
Views: 5500

AJ - don't give up!! Have you tried Hopkins?
by RedPenguins
Thu Apr 01, 2010 7:56 pm
Forum: Revimmune (cyclophosphamide or cytoxan)
Topic: cyclophosphamide for MS
Replies: 28
Views: 13831

Tell Leon to bring a mini-recorder and record the meeting. That is what I did when I met the docs at Hopkins.

Good luck to both of you.
by RedPenguins
Thu Apr 01, 2010 5:09 pm
Forum: Revimmune (cyclophosphamide or cytoxan)
Topic: cyclophosphamide for MS
Replies: 28
Views: 13831

Ami - I know from the outside it seems scary...but having gone thru it twice - it wasn't that bad at all. Not sure though what the heck the 14 day treatment is... HiCy is 4 days if in-patient chemotherapy. Then they release you to your home (or in my case, I was renting an apt in Baltimore near Joh...
by RedPenguins
Wed Feb 17, 2010 9:13 pm
Forum: Revimmune (cyclophosphamide or cytoxan)
Topic: GoodBye Tysabri Hello HiCy?
Replies: 3
Views: 5608

Best of luck.... and know this - if you really want this treatment, there is no such thing as being too pushy to get it! :) When the docs at Hopkins met me - he asked, "So what can I do for you?" - so I told him: "You can either tell me that I don't have MS or you can give me HiCy!" He laughed...an...
by RedPenguins
Wed Feb 10, 2010 2:10 pm
Forum: Revimmune (cyclophosphamide or cytoxan)
Topic: 3 month post hicy (round 2) update
Replies: 8
Views: 7145

Carrie Trekker is no longer at Hopkins, neither is Dr. Kerr.

I would try Dr. Edward Hammond ehammon5@jhmi.edu


Good luck,

~Keri
by RedPenguins
Tue Feb 09, 2010 11:00 pm
Forum: Revimmune (cyclophosphamide or cytoxan)
Topic: 3 month post hicy (round 2) update
Replies: 8
Views: 7145

I haven't been around to update.... But my downslide was VERY brief...and could have just been caused by stress, working too much, and possibly getting sick. Regardless, my MRIs have been clean - meaning no active lesions and no new lesions. I consider the HiCy a success and am thankful to have don...
by RedPenguins
Tue Feb 09, 2010 10:55 pm
Forum: Revimmune (cyclophosphamide or cytoxan)
Topic: Chrishadms you tube video and facebook video
Replies: 11
Views: 7008

Alina, Thanks for posting. I am THANKFUL and GRATEFUL EVERY SINGLE DAY to have "met" Chris. While I never met him in person...I "knew" him through TIMS and his website....and because of that, I underwent HiCy (TWICE!) at Hopkins. And my life is, hopefully, forever changed! I was going downhill FAST...
by RedPenguins
Sun Aug 30, 2009 8:43 pm
Forum: Revimmune (cyclophosphamide or cytoxan)
Topic: how long did it take for some of you to get in JH??
Replies: 5
Views: 5867

I was also in the same timeline as Steven. Sent records in May, appointment in June, HiCy in July. I then went back for a second round of HiCy this past May.

Keep calling them - hound them if you have to - it's your health!!

Good luck and keep us posted,

~Keri
by RedPenguins
Mon Aug 03, 2009 11:16 pm
Forum: Revimmune (cyclophosphamide or cytoxan)
Topic: 3 month post hicy (round 2) update
Replies: 8
Views: 7145

3 month post hicy (round 2) update

Hi again everyone, Well, it is with sadness that I report that things have been on a downslide for the last two weeks. My previous update, I was on top of the world and living without much limitations or restrictions. In the last week or so, I have become symptomatic to a somewhat severe degree. To...

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