Immunosuppression in Amyotrophic Lateral Sclerosis (ALS)

[KCAE]

Any thoughts about this trial?

 

[Txgirl]

If an ALS patients own immune system is attacking the motor neurons. Then this would be something the researchers need to work on.
ALS very well maybe an immune system problem. Find the cause, find the cure.

 

[markt2495]

I was first diagnosed with multi focal motor neuropathy 3 years ago. I started ivig therapy and cut gluten out if my diet. I later got a diagnosis of mnd confirmed by 3 Drs (I was in denial...still am really) anyway there has been no deterioration for such a long time. I put it down to the ivig and gluten.

 

[Nikki J]

Hi I think you are asking about the trial of the specific immunosuppressive regimen that was given the the first stem cell group? The purpose is to look at whether maybe that accounts for Ted's remarkable results rather than the stem cells. My sister had a chance of participating and turned it down. Her neuro concurred. I think partly because she is very frail and the increased risk of infection was too great. Are you considering it? Ask a lot of questions for sure. I heard a rumor that one of more of the original stem cell group were given another round of the full immunosuppression regimen and at least one person showed a positive result. I do not know if this is true but if it is that might influence your decision.

 

[KCAE]

I am considering this trial, just searching for the right questions to ask. Thanks

 

[frankb]

It is my understanding that Ted's remarkable results are yet not fully explainable, but the immunosuppression regimen could well have been a contributing factor. I have been in the immunosuppression intervention trial since November. Monthly visits have mostly consisted of data gathering tasks such as lab work, strength measurements, and a lumbar puncture. My next visit is a real goody since I will receive (intravenously) my first study drugs. Also, I will return home with 3 study drugs which will be taken orally. I have read that one's specific DNA, (such as with Ted) could possibly benefit from immunosuppression while another person's DNA might not have the same benefit. Also, the trial might be a complete bust such as our Dexpramapexole (sp?) study. But hey, if we can get improvement in one out of ten patients , or one out of fifty patients it is all worth it. Only 40 or so volunteers are being recruited for this study and at very limited centers. let's hope for the best ! !

 

[KCAE]

I am in at Mass General, three months behind frankb. His post is spot on, nothing ventured, nothing gained.

 

[GregK]

A couple of links to help understand this:
A Novel Immunosuppression Intervention for the Treatment of Amytrophic Lateral Sclerosis (ALS)
Immunosuppression in Amyotrophic Lateral Sclerosis (ALS) (NIPALS2013)

If you have more info please add the links!

 

[GregK]

This might be of interest too:
Locations

United States, Georgia
Emory University Active, not recruiting
Atlanta, Georgia, United States, 30322
United States, Massachusetts

Massachusetts General Hospital Recruiting
Boston, Massachusetts, United States, 02114
Contact: Anne Bozik 617-724-4246 [email protected]
Principal Investigator: James D Berry, MD

University of Massachusetts Medical School Recruiting
Worcester, Massachusetts, United States, 01655
Contact: Diane McKenna-Yasek, RN, BSN 508-856-4697 [email protected]
Principal Investigator: Robert Brown, MD, PhD
Sub-Investigator: Colin C Quinn, MD​

 

[Montycapuleti]

Hello all
My older brother, a 60 yr old man who was born deaf, was officially diagnosed with ALS, earlier today...as a family, we are trying to get a grip on this shocking news... He was diagnosed at Beth Israel Boston. He has weakness is his thighs and left arm..He began rilutek tonite...this is my first visit to the forums..I see the post above from gregk list some trials..I intend on reaching out to a couple of them..was wondering if anyone on the forums has had any contact with these trials and has been accepted...I again apologize if this is addressed elsewhere, the diagnosis is hours old and this is my first visit. Thank you

 

[Nikki J]

I am very sorry about your brother. Give yourselves a little time to process and learn. Generally clinical trials take people in their first 2 years of symptoms. Each trial has other requirements specific to them but new onset there should be options for him. MA is a good place to be. Is he staying at BI? A fine hospital but not known for ALS. MGH has a clinic and some of the best ALS neuros around in my opinion. They also are very into clinical trials and research. You can look at clinicaltrialsdotgov search amyotrophic not als,
Best of luck

 

[Montycapuleti]

nikki,
thank you for your words and your information. we are going to get a 2nd opinion at mgh and most likely will move over to there (my sister is a nurse practioner in radition oncology at mgh, so she is researching the right ALS neuro to see)..They said he is not at the beginning, but not at the middle either, i guess i take that as maybe 25-30% along the way? hard to say when symptons really began..He had balance issues maybe 28 months ago, but with his being deaf, he always had balance issues..he says his legs started to feel 'heavy' last spring, his hand started to tighten up winter of 2012-13...so he may be in the first 24 months...anyway, sorry to ramble. i will definetly stay on top of the clinical trial link and see what can be done

 

[Montycapuleti]

thank you again, nikki!

 

[KCAE]

Montycapuleti

Mass General has openings for this trial. Talk to Anne or Melissa

 

[NotALS!]

I have been on IVIG for a year now, treatments twice a month. I've had remarkable results. It has saved my life.

I am a 53 yr old female and was diagnosed with ALS 4 years ago. I initially tried rocephin and had great strength improvement and cessation of progression. Eventually, I tried numerous antibiotics and all lost effectiveness over time.

I was having trouble breathing after taking doxycycline. Drs were considering a diaphragm pacemaker since I wasn't breathing much at night.

The IVIG has improved my strength and breathing considerably. It is very expensive but luckily I have great insurance and brave drs willing to try new drugs.