The earlier the better

A board to discuss Revimmune as a potential therapy for multiple sclerosis

The earlier the better

Postby amalisa » Mon Jan 14, 2008 3:43 am

Hi

It's me again! It's seems that with all therapies coming up now, the fact seems to be: the earlier the treatment, the better the outcome.

On the other hand lots of doctors hesitate to go for the heavier stuff when MS is early and "mild" or want first to try some established therapies. Often valuable time is wasted that way. What makes me angry is, that scientists tend to say "as early as possible" and docs seem only to react when there is already disability obviouse and the damage done... grrr.

Do you think it is possible to get a treatment like HiCy for PPMS when one ist still under EDSS 4?

Nati
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Re: The earlier the better

Postby Lyon » Mon Jan 14, 2008 9:57 am

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Postby amalisa » Mon Jan 14, 2008 10:37 am

Bob, you are as always thorough and solid in your answers.
:)

I am just so impatient which is not good for a patient 8) There is really lots of stuff going on in research and I cannot wait Campath, FTY720, HiCy, Tovaxin to become regular treatments. Well, even if I might not be able to profit from them, since it starts to become obviouse that I am PPMS, but the fact that about 80% might in the future be able to controle this dragon fills me with happyness.

Thank God, MS is not a human being, because I assure you, I would not just show my bad finger :twisted:
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Postby chrishasms » Mon Jan 14, 2008 10:46 am

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Postby robbie » Mon Jan 14, 2008 10:55 am

I cannot wait Campath, FTY720, HiCy, Tovaxin to become regular treatments

Same here Amalisa, ther are so many diagnosed and soon to be diagnosed people that will be spared this disease at it's worst if they can just stop the progression. Unfortunatly there will be alot of us left standing in the storm watching it all happen. As hard as that is going to be it makes me happy as it does you to see ms finally starting to lose the fight.
Had ms for over 19 years now.
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Postby chrishasms » Mon Jan 14, 2008 11:13 am

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Postby robbie » Mon Jan 14, 2008 11:41 am

Robbie, Why don't you call JH?

Are you being serious Chris
Had ms for over 19 years now.
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Postby chrishasms » Mon Jan 14, 2008 12:10 pm

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Postby Lyon » Mon Jan 14, 2008 3:43 pm

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Postby whyRwehere » Tue Jan 15, 2008 1:58 am

Well, if Robbie did do it and it helped him, that would be big news...but maybe he's waiting to see how Chris does.
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Postby amalisa » Tue Jan 15, 2008 2:16 am

Robbie

Yes, lots of us will stand in the storm and watch others to go on with their lifes with little or no disability. But it has always been that way. And what is even worse: there are parts in this world where people die because of stupid little infections, knowing, that there exists a simple remedy to ease their suffering. I don't dare to think about how many people you could help with the money of one year Tysabri therapy.

About the Revimmune: I agree with Bob! At the end it's your decision, but look: It was not JH who called Chris. Chris had to make the first step. Or if I remember well, Ian (Campath) did the first step, or Bob's wife (Tovaxin)... Asking is for free! And what about this MBP8298 for SPMS? Have you ever checked that option? It's a Canadian baby.

Chris, yeah perhaps I am not PPMS. It's just that my MRI shows no inflammation only a few t2 lesions and the OB are negative. I have visibly lost some strength in my left arm and leg... End of january I will see my neuro again. Let's see what he thinks.

I seriousely start to consider HiCy as a possible treatment for me. I have already talked to my parents and my partner. Mom said, she is ready to make with me the trip to the U.S. But first, let's see what the Olympus trial will brings to us.

Bob, sorry if I vexed your delicate ears. My remark wasn't very ladylike, was it. :oops:

nati
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Postby Lyon » Tue Jan 15, 2008 7:22 am

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Postby marcstck » Tue Jan 15, 2008 7:13 pm

I contacted the Johns Hopkins people last week regarding Revimmune. I had been evaluated by Dr. Calabresi there last year, so my records were readily available to them. Unfortunately, after reviewing my records, they decided that I would not be a good candidate for the treatment. It was explained that they are looking for patients with active inflammation, who would tend to be the patients that would benefit the most from Revimmune.

I am PPMS, and an atypical case at that. My MRIs have remained unchanged during the five years of my diagnosis, showing one tiny brain lesion in my right periventricular, and one larger lesion in my upper cervical spine at the brainstem. That's the one that's causing me problems. I've never had any enhancing lesions. My lumbar punctures have always been negative. Despite the stable MRIs, my disease continues to progress. My right arm and leg are just about useless, and my left side is becoming increasingly affected as well. At my current rate of progression, I give myself about 18 months before I am bedbound.

I have tried Tysabri, intrathecal methotrexate, and plasmapheresis, all to no avail. I've also tried the combination antibiotic protocol, albeit for only three months, but also to no avail. After reading about Revimmune here and at some other sites, I was ready to give it a try.

My neurologist (one of the leading research doctors in New York City) is now suggesting I try intrathecal steroids. I'm quite hesitant to do this, since intravenous steroids left me with avascular necrosis, an extremely painful degenerative condition of the joints. Watch those steroids, people, they can do a number on you. I'm waiting to hear back from several of the other doctors I've consulted about what they think of my doing intrathecal steroids, but my gut feeling is to refuse it.

My primary neurologist does not feel that immunosuppression will work in my case. Despite that, I think I'm going to push him for Rituxan. Seems that that might be one of the only options left open to me, and doing nothing is simply not an option.

Best of luck to everyone who embarks on the Revimmune journey. It would be wonderful to see a few people rid of this terrible disease...
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Postby Lyon » Tue Jan 15, 2008 8:05 pm

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Postby marcstck » Tue Jan 15, 2008 10:30 pm

Well, since PPMS is generally marked by a lack of inflammation, it would seem that not many primary progressive patience would qualify as an ideal patient. There are the odd few PPMSers that do display inflammation, so they might indeed benefit from Revimmune.

Same holds true for those suffering from SPMS. If their lesions are lighting up under gadolinium, they'd probably be considered for the treatment...
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