Another one with ITP

A board to discuss the soon-to-be released drug Campath as a treatment for Multiple Sclerosis

Another one with ITP

Postby JP » Fri Oct 15, 2010 11:58 pm

Just another anecdote:
2/2007: First (and only) MS-exacerbation, started with Rebif
3/2008: First round of Campath (high dose; off-label)
5/2009-1/2010: Pregnancy (we had some little troubles to conceive), delivered a perfectly healthy baby
3/2010: Second round of Campath (high dose; off-label)
7/2010: Early miscarriage (surprise pregnancy); no chromosomal abnormalities found (had a D&C)
10/2010: ITP

I went to work fine, came home at night still feeling perfectly fine only to discover my legs were covered in bruises and I had gingival bleeds... I knew what it meant so straight to the ER, my platelets were only at 7k, they started steroids but the following morning I had only 3k. Now getting IVIg treatment.
And still feeling fine!!
They say I should be over it with 4 days of IVIg, and it should not return or become chronic afterwards. If I would get ITP again, they can treat it just the same way, even during pregnancy... not that I would take that decision lightly, I have had my wake-up call now and really don't wan't to die...

However, I am thinking about the miscarriage 3 months ago and potential immune problems... very interesting now, considering one of the treatments for immune-related fertility problems (cfr Dr Beer) is IVIg, the same treatment as I'm getting now for my ITP!
User avatar
JP
Getting to Know You...
 
Posts: 13
Joined: Tue Aug 14, 2007 3:00 pm

Advertisement

Itp

Postby k6ristin » Sun Nov 07, 2010 8:00 pm

Thanks so much for the update. I'm so sorry to hear, keep us posted!
How are you now?
I don't know @ Dr. Beer or fertility autoimmune issues. Are they campath, or ms related...or a thought on causes of miscarriage being that momma's immune system doesn't recognize baby?

Thanks,
Kristin.
(2 high dose campath- genzyme study treatments, 2 ccsvi liberations, my body is still fighting something affecting my gait & co-ordination!)
User avatar
k6ristin
Family Member
 
Posts: 76
Joined: Mon Mar 17, 2008 4:00 pm
Location: Florida

Postby JP » Wed Dec 15, 2010 4:32 am

I'm fine now!

One week after treatment I had a count of 234k, 6 weeks after treatment, when all the IVIg should have been out of my body, I even had 394k. Which is very very very good!
According to my hematologist, it won't be anything chronic, not "idiopathic" but entirely campath-related. The campath was still in my body 6 months after campath-treatment, and even now there could still be traces left.

I'm staying really vigilant about all those things, but the future is looking bright again. I even have "permission" to get pregnant again :D
(the fertility autoimmune issues according to Dr Beer just "are", like ms just "is"... indeed, the immune system does not recognize the baby which leads to destruction... but it is not known whether campath or ms or anything else might be a cause)
And fortunately still no flare-ups or progression from ms :cool:
User avatar
JP
Getting to Know You...
 
Posts: 13
Joined: Tue Aug 14, 2007 3:00 pm

Postby patientx » Wed Dec 15, 2010 6:50 pm

Thanks for reporting back, JP. Glad to hear the thrombocytopenia is under control.

Did the doctors give you any indication why they think the thrombocytopenia won't recur (just curious)?
User avatar
patientx
Family Elder
 
Posts: 1068
Joined: Wed Sep 10, 2008 3:00 pm

Postby JP » Tue Mar 08, 2011 12:41 pm

Well, they said that 6 weeks after IVIG-treatment, all IVIG should have been out of my body. So if any ongoing auto-immune processes would still be active, the auto-immune reaction would be back destroying my platelets. Which they think is not the case, as my numbers where increasing instead of dropping.
There is no guarantee whatsoever that the ITP won't return. But they think there is not any "classic" auto-immune ITP going on right now.

After all, I can live with that kind of uncertainty. It's almost the same as MS-uncertainty, but I think it's even better. If I would discover another ITP-flare-up soon enough, it can be treated very well in my case (up untill now), and it does not lead to disability. If I would be too late, I would be either dead or have a stroke, and than it's just game over...
(but I hate MS more!!!! Still no flare-ups however....)
User avatar
JP
Getting to Know You...
 
Posts: 13
Joined: Tue Aug 14, 2007 3:00 pm


Return to Campath (Lemtrada, Alemtuzumab)

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service