Small HDC trial results

Frank · Posted: Mon Jun 09, 2008 4:04 pm Post subject: Small HDC trial results

Chris, is this the same group at JH that did your treatment?

Its only a small group of 9 MS patients with aggressive MS followed for up to 24 month. But a 39% average improvemt in EDSS sounds promising.
Trial results

--Frank
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Current regime: Tysabri restarted 05/2008 after LDN, ABX Wheldon Regime for 1 year, interested in T-Cell vaccination, helminth immunomodulation

Lyon · Posted: Mon Jun 09, 2008 5:08 pm Post subject:

First off, thanks Frank!

I'm just now going to be reading it but, at least at this point in time, it looks like the article is free (just below "early release articles") http://archneur.ama-assn.org/cgi/content/full/65.8.noc80042

Bob
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Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.

Jamie · Family Elder Joined: Jan 08, 2008 Posts: 158

Wow, this should be THE document that people read from now on.

It's fantastically informative.

I'm CONVINCED Mel's follow up with Copaxone will equal a cure.

What would be awesome would be a genetic test that was routine, standard, and if found positive could be prevented with an oral type Copaxone.

I genuinely don't believe this is very far away.

HiCy · Family Member Joined: Oct 31, 2007 Posts: 57

Dr. Chrishnan was my first contact at JH. This is the initial study of the protocol. I have to say that the results are not that terrific. I am sure this is where the 50% relapse rate that Carrie is quoting is coming from. After going through this I have mixed feeling about the procedure. It holds a lot of hope for some people but you can not hang your hat on this as the ultimate cure. It may work but it may not. Everyone is going to be different. At 8 1/2 months my results are mixed. I am worse off but it will not show up on my EDSS. My youth and physical ability are making up for the problems. I am being told that some of the problems I am know experiencing are temporary but they also could be related to axon death which is not a good prognosis and means these could be permanent problems. Only time will tell. I would still do this again because what I was doing was not working either. We will see what they say next week. With so few of us going through this I am not sure if the answer they will have will be from experience of just theory. Only time will really tell.

HiCy

chrishasms · Family Elder Joined: Sep 15, 2006 Posts: 403

I too have had a weird summer. The last month I had some twitchy issues but all my issues seem to be heat related. If I cool down or take a rest I feel a lot better.

I EDSS wise have improved already. If it wasn't for this damn knee I would be walking regularly as a part of my workout. If my brace gets here this week I will start that day. I'm somewhat optomistic I got this before the axonal death kicked in.

Well tomorrow I have the MRI and I will be home with a copy tomorrow. I'll know if there is anything knew and next Wed is my 3 month follow up.

I agree 100% with Brett. Would not even consider anything else.

Lyon · Posted: Mon Jun 09, 2008 7:13 pm Post subject:

chrishasms · Family Elder Joined: Sep 15, 2006 Posts: 403

I got a theory about that before he even answers.

Summer sucks bad and for someone who has never had any issues with fatigue or other things many of us experience, it may be just getting it's last gasp.

Also, Dr. Kerr did say it takes some folk 4 years. I am tending to believe it will take me as long to get anything back as it did to loose it. It is sooooooo slooooooow. Some days still do suck for me. I have nerve damage.

I also think with the body under attack it puts up a certain defense of not letting you in on it all. This is my point....

I have a appt on the 24th w/ a neuro for Carpel Tunnel Syndrome. I did not have it until April. I started to get the feeling back in my body parts I had lost and unfortunately I could now feel the Carpel Tunnel!!

Getting better sucks in ways, but so far all my issues have been correcting themselves with a medical answer or rehab.

Jamie · Family Elder Joined: Jan 08, 2008 Posts: 158

2/9 relapsing only one with clinical symptoms doesn't equal 50%.

HiCy · Family Member Joined: Oct 31, 2007 Posts: 57

No new symptoms just a worsening of old ones and since these are worse I have not improved like I had hoped. It is hard to explain. It has been a slow regression starting back in December with the worse of it happening around the 1st of April. Things seemed to have leveled off. The heat sucks but that has been that way for a while. We will see what Dr. Kerr says next week. I have already talked to him about this and I would like to believe his reasoning. I would like to see if he has data to back up his theories or are they really just that, Theories.

HiCy

Lyon · Posted: Mon Jun 09, 2008 8:36 pm Post subject:

Whew! I'm sorry Brett!

It would be foolish of me to even comment right now because I couldn't guess what is going on, but you have given food for thought.

Are you on the Copaxone? Were they doing that when you went through?

Bob
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Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.

HiCy · Family Member Joined: Oct 31, 2007 Posts: 57

I was the second person they put on Copaxone which I started back in December. I have discussed this with my Neuro and they admit it makes perfect sense to do this. Train the immune system while it is still new and learning and we can all be like the test mice who did not develop MS after they were given copaxone.

HiCy

RedPenguins · Posted: Mon Jun 09, 2008 11:00 pm Post subject:

I didn't read the article yet - and am shocked it is out - as Dr. Kerr told me last week it might be a few weeks...

Anyhow - this is what I was told in person last week:

All 9 people did better - no one got worse. Two people didn't do as well as others - but those two people were ones who had been dx for 20+ years.

At 2 yrs out - 6 out of 9 were NOT on any meds and had no signs of disease activity.

At 4.5-5 yrs out - 5 out of the 9 were NOT on any meds and had no signs of disability.

I am guessing the 5/9 thing is the rationale behind the 50% thing.

Also, I believe one of the people actually wants to undergo the treatment again....and it is being considered.

That being said, I am going to try to read the article now.

I really await what Brett has to say though.....

~Keri

Kyle · Family Member Joined: Jun 10, 2008 Posts: 68

sigh, I have been following this for awhile. I had such high hopes regarding this treatment. Sad

I don't see anything here thats impressive, for people who are left with no options it might be something to look into. But I see why now this is not offered all over. They have not even done this treatment on many MS patients yet they try and claim it's a cure? This is according to an article I read a month ago.

I have a lot of respect for Johns Hopkins and the physicans there, but it looks like they are fishing for guinea pigs. People are so desperate to cure their disease they wil do anything.
good speed to those who are undergoing this treatment, I just hope and pray you all wont be kicking yourselves in the arse after a couple years for doing this.

chrishasms · Family Elder Joined: Sep 15, 2006 Posts: 403

I thought that article was fascinating but it did reaffirm one thing for me more than ever...

I HATE MS.

Lyon · Posted: Tue Jun 10, 2008 1:29 pm Post subject:

Now as always it's essential to keep in mind that what constitutes "improvement" of symptoms depends entirely on whose definition is being used.

In the same light that nothing specific to the MS process has ever been isolated to use as an accurate diagnosing tool, we also have no way of knowing with certainty when the disease process has been stopped, slowed down or left unhindered by treatments we try to use against it.

All we can possibly attempt to measure effectiveness with is by is what "seems" to be happening to our systems as plasticity is doing it's best to hide and fix disability, and that is a woefully inadequate indicator. Now we are seeing exactly why I thought it was inaccurate, dumb and unfair of the JH researchers to use improvement of symptoms as a primary endpoint.

The intention and highest hopes for Revimmune is to stop the disease process and any improvement of symptoms depends entirely on the state of the patient and their ability to heal. Improvement of symptoms is in no way indicative of effectiveness of treatment.....ANY treatment.

Bob
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Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.