Need Advice

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Need Advice

Postby mmclane » Tue Dec 16, 2008 5:15 pm

My daughter has been in a coma for a month now and her doctor just got back results from a second biopsy. His Official Diagnosis: Inflammatory Disease of Brain-Inflammatory driven by B & T cells. He said no antibodies where found so he was not going to start her back on plasmapheresis which she was on for about 6 days with steroids. She is currently on 1000 mg of steroids per day. The doctor has told us we can choose from 5 treatments I’ve listed them below.

I need to make a decision ASAP.

Here are the 5 treatment options:

1.Cellcept (mycophenenolate mofetil)
2.Novantrone (mitoxantrone)
4.Rituximab (rituxan, mabthera, reditux).
5.Campath (alemtuzumab) – Doctor has advised to use this one.

thanks in advance.
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Postby carolew » Tue Dec 16, 2008 6:34 pm

Sorry to hear that your daughter is in such a severe state. I don't understand that they are not giving you a more precise diagnosis. All those treatments are used for MS . I do thing that she will need something as strong as Campath if he diagnosis is indeed MS. .. otherwise.... it is difficult to make a suggestion.
Best of luck to you and lots of courage through this ordeal.
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To mmclane

Postby lyndacarol » Tue Dec 16, 2008 8:09 pm

mmclane--I am so sorry for your daughter's situation. Altho she apparently does not have an actual "diagnosis" of multiple sclerosis, the doctor seems to be operating under the same principles (and offering the same treatments) that most of us have seen (starting with steroids and moving on to even bigger guns!).

I'm sure the doctor has taken her thorough history, ordered blood tests of everything known to mankind (including insulin and blood sugar levels), and consulted with specialists.

My concern is with your comment,
The doctor has told us we can choose from 5 treatments I’ve listed them below.
HE is the one with the expertise and medical knowledge.

I would ask, in the case of each of the five drug treatments, "What is each supposed to target and do, if you don't know what you are dealing with.

My prayers are with you.
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Postby mmclane » Tue Dec 16, 2008 10:26 pm

Yeah I thought it was very odd that he would leave it up to me and my daughters mother to choose when we have no medical background. He did suggest choosing campath but said it was up to us and that he would need FDA and board approval to use campath. It gives me the feeling that he thinks none of them are really going to help. But all he would say was it's a life of death situation we are dealing with.
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Postby patientx » Wed Dec 17, 2008 8:32 am

This sounds like an awful situation, but something is not adding up. The doctor diagnosed inflammatory disease of the brain, not MS? And he diagnosed this from a biopsy? Did he perform an MRI or spinal tap?

From what I understand, Rituxan targets mainly B cells, so if the aim is to knock out both T and B cells, it doesn't seem Rituxan would be the most effective. Both Cytoxan and Campath strongly suppress the immune system, and both are already FDA approved for other uses. So I'm not sure why the doctor would need FDA approval to use Campath. Others on this board know much more about these medications, so they would be be able to give you more information.

With this doctor giving you this little information and asking you to pick a treatment, I think I would seek out another opinion.
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Postby jimmylegs » Wed Dec 17, 2008 9:42 am

sounds very frightening. heartfelt condolences, mm

so dx brain inflammation(encephalopathy)? i don't pretend to be an expert - the doc's ruled out hepatoencephalopathy? i wouldn't know if that would involve b and t cells so pardon my ignorance... i ask because we have a related thread on liver dysfunction and brain damage in ms going on.

is there any reason to suspect liver trouble? nutritional issues that could lead to liver trouble? could her potassium or zinc or b1 be down, and ammonia elevated?

sorry to ask these, i know i'm not answering your question - i don't know about choosing pharmaceutical solutions though... i just know about trying to assess what could have gone wrong with the day-to-day routine prior to illness and see what might be suspect...
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Postby dignan » Wed Dec 17, 2008 12:12 pm

mmclane, I'm really sorry to hear about your situation. If the doctor thinks it might be MS, or something similar, Campath has shown by far the most promise as an MS treatment, although only for relapsing-remitting disease, not progressive MS. So if the doctor prefers campath, and it is the most promising MS treatment (phase 3 trials are still ongoing to confirm this), for what it's worth, I would go with campath. I wouldn't dare say this if the doctor wasn't already recommending campath.
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Postby cheerleader » Wed Dec 17, 2008 1:57 pm

So sorry for you and your family. Your daughter is in my prayers. I'm sure this past month has been very difficult and trying for you. By now, the doctor has ruled out all bacterial, viruses and vitamin deficiencies? Ask to see as much blood work as you can-
Campath sounds like the right route.
Maybe see if the doctors can check your daughter's intra and extra cranial bloodflow with ultrasound, to make sure there aren't any blockages. There could be coagulation issues which wouldn't appear on MRI.

Inflammatory brain diseases such as multiple sclerosis (MS) include hyperactivation of the coagulation pathway which includes thrombin.

Hang in there, and let us know what happens-
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Postby patientx » Wed Dec 17, 2008 2:22 pm

Jimmylegs's mention of encephalopathy got me searching the web, and I came across Hashimoto's encephalopathy. Is this possibly what the doctor was considering, at least originally? According to what I read, this is an autoimmune disorder characterized by anti-thyroid anti-bodies. IV steroids are the standard treatment, and it seems plasma exchange has also been used. ... motos.html

Maybe due to the lack of detected antibodies, the doctor can't diagnose your daughter's condition as this? Maybe he is assuming it is some sort of autoimmune condition that will respond to immuno-suppressants. Has he ruled out infectious causes?
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