Cell-cept ?

[michelleric]

Hi all,

I am sorry I haven't been here for some time.  Summer has been VERY busy, hot and exhausting for me.  Basically been a single mom since May to my 4 boys.  Life is rough right now.
Here I am asking for advice.

Saw neurologist today.  Long visit.  Starting a round of solu medrol tomorrow.  Eye issue, uveitis again, more walking issues as well as some other new Neuro "stuff".

I decided to discontinue Tysabri a couple months ago.  Too many respitory, voice issues.

She strongly is recommending cell cept again , until BG 12 comes out in about 4-5 months.  I think that is what it is called.  I am very hesitant about this.  Don't want my immune system lowered.  I also don't know anyone on it.

So, anyone on cellcept?  

If I decide not to take it, she wants me to do steroids every other month.  That seems reasonable.  I go back in 6 weeks to talk to her.

Thx,

Michelle

[michelleric]

Thx Lu.

I have decided to do the steroids...however, hubby is home this week, yay!

We had a date night, and I told him about the Neuro exam and showed him the brochure on cellcept. ( very romantic dinner conversation ;))

He said I need to follow the docs advice and try this med.  he is seeing me worsening, fairly rapidly, and
Thinks I need to do whatever it takes, to hopefully help me.

He is extremely worried about my future care, and needing outside assistance,  this makes me so sad.

That's where it stands for now,

Michelle

[Lulu54]

I would not anticipate BG-12 to be approved by the FDA before early 2013, but that really is only a few months away.  Good luck with this decision.

[michelleric]

Thanks Dennis.  I am glad to hear the cellcept is slowing your progression.  That is great.

I am going to stick with the solu medrol for now.  I tend to get sick frequently...afraid this might do me in.   I get exposed to tons, particularly when the kids r in school. :(

We will see how it goes...

Michelle

[Sailorsong]

I have been on CellCept for about 2 years now with no problems. I am classed as Progressive and it seems to be slowing down the progression of my symptoms.

How much your immune system is suppressed depends on the dosage you are taking. I am on 2000mg daily (which is considered a high dosage) and have only gotten mildly sick once in those 2 years. At that time my PC just had me stop the CellCept while taking an antibiotic for 2 weeks and I was all better. Of course I don't have any kids running around so I'm not exposed to a lot of illnesses.

Dennis

[michelleric]

Thx Lisa!  

I am leaning towards the steroids every other month.  Hopefully it will only be a few months until BG 12 comes out.  My Neuro is very optimistic about this new med.  

XO,
Michelle

[Guitar_grrrl]

I had a local support group buddy take it for a while.  I don't think he's still on it.  He has SPMS, and really, I don't think he's taking it any more for the reasons you worry about (re:immune suppression).

I hate that you're going through this, Michelle.  If it were me, I think I'd just do the pulsed steroids until BG-12 comes out.  Steroids have their dark side, though, too.  I worry about osteoporosis with all that... But we do what we gotta do.

Big, gentle hugs,
Lisa