Hi all,

I'm not sure if anyone remembers me...I used to be here a lot in 2008-2009....then I went off to Hopkins and did HiCy treatment (2x!)....I had a baby 15 months ago and was in a nice long remission from May 2009 (second HiCy) until December 2011... then a relapse from hell hit me and it's been awful.

Started back on Copaxone and hated EVERY second of it. Cried every night when i had to stick myself as it hurt horribly and bled a lot (realized after a week that i had a bad box of needles!)....but even when I got a new box, I couldnt go back.

Found an MS guru about 2 hrs from where I live and went to see him. He runs clinical trials and suggested one to me, as my MS has always been aggressive (though the 2nd HiCy did bring much relief - as I was having relapses and new damage every 2 months prior to that)....

So - now I'm doing this study on Ocrelizumab. It's a double blind study with Rebif. I either get the Ocre or the rebif. Of course, being that rebif has terrible side effects - i will probably very quickly know which group i'm in (both groups have an IV drip - which would be the Ocre or the placebo and both groups shoot up with rebif or placebo 3x a week).

I have thought of many of you.....just never have the time these days, what with working full time and chasing around my 15 month old...and oh, MS rearing it's ugly head.

Anyhow, I'm not afraid of the Ocre med....but I'm PETRIFIED of Rebif. I've stayed clear of the interferons for fear of not only flu side effects - but also the depression. I already struggle with that and now I'm afraid I'm gonna be on a ledge, so to speak, if I actually do get rebif. I'm wondering if any of you are on Rebif or have experience. Pointers, hints? Are the flu like symptoms horrible?

I'm gonna go read threads to catch up on whats been happening here.

xo
keri
aka redpenguins

Hiya RedPenguins! I remember you and your darling avatar! And that you were on HiCy twice.

Nice that you had remission, but sorry its over.

I don't know much about Rebif -- does it have bad side effects for everyone?

I hadn't heard of Ocre, but am interested in finding out how it affects you (assuming that is the one you get).

Keep us posted. And good luck with that 15 month old!

Hi Red! you were so inspiring to me and I never got to thank you.

I didnt do Rebif, but did Beta and I never had a blink of depression. I was on it about 3 months when I had to stop due to liver enzymes soaring, but not a hiccup.

I hope you feel better.

Hi Red!! Sure I remember you!! I hope that whatever treatment you're getting it helps you...sorry Copaxone didn't work well for you. I look like the moon I have so many craters from it

Keep us up to date occasionally...hope the baby's doing well!!

((((Keri)))) ...I've been thinking about you lately and wondering how you are doing and if you were still in remission. The HiCy was good for you for a long time.

I hate to hear that you are back on the DMD Merry-go-round. I'm off of them. It sounds like you're trialing another Tysabri-like med, so be careful of the JC virus...

Let us know how it's going for you. Any chance of another HiCy treatment?

Sally, I can't do HiCy again....i've reached the lifetime max. As for JC - they did the test on me to see if I'm at risk... Also, with this med, it's been used in treatment for RA, lupus and MS with astonishing results...and no one with ms has developed JC or anything else. SO that is hopeful.

They dosed me today with 1/2 of the first dose. I go back in 2 weeks for second half. then not again for 6 months.... I developed a low grade fever about 30 mins into the infusion - which is a known side effect for the med....and if it was just saline in the bag, that would not have happened. so we were optimistic. I also shot myself up with the "Rebif" after the infusion. i had no reaction, tho i dont think rebif has site reactions like copaxone? But i dunno.


Deji - - I thought of you often - b/c when I was last here regularly, you were really struggling with your health. it sounds like you are doing better - and i'm glad to hear that!!!

And my 15mo old is awesome. i missed her terribly while i was away and she was already asleep when i got home tonight. i havent seen her since tues morning. my heart aches!!

~Keri

Hi Red Penguins,

I have recently started this same study. I am a few months behind you, I just went in for my 12 week check up. It sounds, like as my neuro likes to say you may have gotten the good drug. I also believe that I am on the good drug, because of the quick results and non of the side effects that come with Rebif. Have you noticed any side effects from the OCR med? or how are you doing on the trial now?

Keep us posted Greenflower on how you are doing on this newer drug. I'm hoping that Redpenguin comes back and reports in too.

i don't know what HiCy is.

Hi Mariel,

HiCY is short for high dose cytoxan. It's was first used as conditioning for bone marrow transplants to wipe out the immune system. John, my husband, did the High Dose Cytoxan clinical trial for his Severe Aplastic Anemia. Since then, it's been used in other auto-immune diseases like scleroderma and Lupus. For the later, it was used after other therapies failed. They then started a trial at Hopkins using it for one of the sub-types of MS. I think they call the treatment protocol Revimmune for MS.

So it treats one form of MS and for two to four week period, you're vulnerable to infection and are on multiple antibiotics, anti-fungals and anti-virals until your white blood cells kick in again. The cytoxan is four doses, four days in a row and they administer another drug with it to protect the bladder.

With your issues regarding the porphyria, it could be more challenging for you because of all the drugs that are used after the chemo.

Hope this helps....M