Sister kicked out of cladribine study

[wiggles94]

Hi all and Happy Easter.  Haven't been on for a while and am actually feeling very good - if I do have MS (docs say possible MS) then I think I've finally gone into remission after 1 1/2 years of annoying symptoms.

So I'm feeling good - but my sister who is CIS - who just completed a 96 week study involving the MS drug cladribine - has not been feeling that great - but at her last exam,  her study neuro said she is stable, and even though she can't take the drug due to side effects - she could stay in the study for follow up MRI's, clinical exams etc.  

BUT the strange thing is - her MS neuro called to tell her that according to other docs (she doesn't even know who they are) involved in the study, she has converted and is no longer able to be in the study????  She is shocked to say the least.  Her neuro is going to try and get more info - but he doesn't understand how they are saying she converted - no changes on MRI and as far as her neuro is concerned - no new exacerbations or change in clinical exam.  

Has anyone ever had any strange experiences like this with a study you were in,  or heard of such a thing?

[wiggles94]

Hi Lulu,
By converted I mean she went from CIS to RRMS.

thanks for your hope for me - I hope so too! : )  Hope all is well with you and all the usual suspects on this great site.
Carol

[Lulu54]

by converted do you mean changed from RRMS to SPMS?    I'm still trying to understand what that benchmark really is.

I'm glad you are feeling well- I hope it lasts forever.

best, Lulu