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Thread: Neuraltus - NP001

  1. #1
    Forum Member MattJ's Avatar
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    Neuraltus - NP001

    Hi all,

    Now ... I have ummed and ahhed as to whether I should post the following on here. My main reason for not is giving people false hope. We all have enough on our plate to deal with! However, it would be great to hear other people's opinions. So I am going to keep this as brief (if that's possible!) and let you come to your own conclusions.

    Some of you will probably be aware of this, and have been keeping quiet like me, but there have been some potentially interesting developments based on anecdotal evidence in the NP001 Phase II drug trial.

    http://clinicaltrials.gov/ct2/show/NCT01281631

    http://www.neuraltus.com/pages/programs.html#np001

    The developments are improvements or a levelling off of symptoms in some of the patients participating in the trail. To get up to speed you need to read the following thread on the ALS TDI website:

    http://als.net/forum/Default.aspx?g=posts&t=48293

    Ok ... there are 58 pages of it but you really need to read it all to get a full understanding of events up to this point in time. Some of it is quite hard to digest (unless you're a Bio Chemist!) so I tend to move on to the next post. However, if you want to fast forward ahead to the juicy bits, view the link below by HappyPhysicist:

    On the second day of infusions I was depressed because I thought I wasn't on the drug. I felt no effects. I have heard some felt extreme fatigue a few hours after the infusions and I felt as chipper as a bushy tailed bunny all night after the first infusion. I was sunk by the thought that for the next 6 months I would have this darned PICC line in and spend about 25 days of my life is a hotel in Lexington, KY. The nurse brought me a cup of coffee and I worked on my laptop in the exam room. About a half an hour later I looked down at the cup and I saw that it was empty except for some coffee residue. Someone drank my coffee. I did!!! I drank it without thinking. I haven't been able to drink liquids without it feeling like I was performing a circus act in months. After that I joined the study coordinator for lunch and pushed the limit more and more by successively tilting my head back with each sip of water. (Before this I had to stare squarely at the floor to swallow liquid) Then for the ultimate test I leaned my head back and chugged the liquid in multiple rapid succession gulps. That would have been suicide a day earlier.
    http://als.net/forum/Default.aspx?g=...93&p=30#334628

    Also view Persevering's post on page 31:

    Efficacy: Substantially improved swallowing, increased tongue strength (moving food), increased tongue range of motion (eliminated food from collecting in areas, firmer muscles around lips (restored partial pucker and eliminated slight drool and leaking when drinking, blew out candles for 41st birthday in late June, couldn't at 40th!), more productive cough, increased range of motion with right arm at shoulder (vertical possible, was limited to horizontal), increased range of motion with neck (was less than full leftward, now normal), increased leg strength (restored ability to rise from sitting without pushing with arms), increased arm strength (much improved ability to sit up from lying flat and to turn in bed), slight increased leg coordination and balance (no reliance on cane for balance), greater dexterity in left hand (was difficult to sign number 3 with all fingers together, now easy), intermittent clear enough speech to talk fluently without reliance on iPad.

    Side Effects: Tiredness and occasional slight headache within hours of infusion. Wake rested, but repeats at each cycle and builds up. After multiple doses, tiredness lasts a couple days and slight hung-over feeling. Fasciculation's worsen during dosing. Cannot stop smiling out of amazement!
    http://als.net/forum/Default.aspx?g=...93&p=31#334676

    There's more! You will also need to view the NP001 evaluation page on Patients Like Me. The two patients above have allowed their more recent evaluations to be made available to the public. The other 7 patient evaluations can only be viewed by login in.

    http://www.patientslikeme.com/treatm...-np001?brand=t

    Excited...?! Personally, I am. Yes, it could be a scam and it's only anecdotal evidence, but if you were looking for a small amount of hope to grasp onto then this could be it. The "old timers" on ALS TDI are holding judgement and rightly so. They have seen too many false promises before ... lithium being one. However, this feels genuine to me. This disease is due a significant development in treatment and maybe this is it!

    And then there's the discussion about WF10 / Immunokine ... cor blimey ... I'll let you digest the above first as this post is already looking like an essay!

  2. #2
    Forum Member G60dubber's Avatar
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    I had read about this a while ago and found similarly positive feedback. Doesn't look like it's at trial in UK yet. I'd give it a go tomorrow given half a chance. Isn't WF10 similar but being done by a different company?

    From MNDA website:

    NP001 is a new drug developed by Neuraltus Pharmaceuticals Inc. It acts on particular cells within the immune system and aims to reduce damaging inflammation within the nervous system. A Phase I clinical trial of NP001 showed that the drug was safe and a larger Phase II trial is currently underway in the USA to test the safety and tolerability of two doses of the treatment in 105 people with MND. The current trial is expected to finish in October 2012.
    Life without love is like a broken pencil..... Pointless.

    http://mndestroyer.wordpress.com/

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    Hi All,

    A statement from the MNDA would be appropriate. Maybe at the AGM?

    If not available on the NHS, how would I acquire them privately?

    I am eager to start living again!

    Best wishes

    Graham

  4. #4
    Forum Member MattJ's Avatar
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    Here is some more information on WF10:

    http://www.nuvoresearch.com/groups/wf10.htm

    http://alsn.mda.org/news/flip-switch

    Anecdotal evidence about the potential of WF10 (You will need to search for "Example 6" on this page as there is a lot of information):

    http://1.usa.gov/qJDBQA

    Here's a snippet of the information:

    After the first cycle of WF10, the patient had a dramatic improvement of her symptoms, including: restoration of the ability to swallow and eat, leading to the removal of the G-tube (dotted line on the graph denotes time of G-tube placement, the removal is shown as a solid line and after therapy was discontinued, the dotted line shows the placement of a new G-tube), halting of facial fasciculations and vocal waivering (both symptoms of worsening neurologic disease that stopped). During the time of therapy and through 2 months after discontinuation of therapy the ALS/FRS score remained stable at 10 for 7 months, at a time when she would have been predicted to have progressed to a 0 within 5 months absent therapy. She was able to eat by mouth for 8 months after therapy initiation whereas she was never expected to eat after placement of the G-tube. Due to inability to obtain drug after the 5th cycle, she discontinued therapy after 7 months of stable disease and within the next 6 months her ALS disease progressed at a rate identical to her rate pretreatment. Based on the curves shown in FIG. 6, the patient showed a beneficial effect both in the ALS/FRS score of 7 months disease stability and in the reversal of brain based symptoms(bulbar symptoms) of her inability to eat of 8 months. No currently approved or known experimental drug has ever reversed bulbar symptoms and no drug has caused the ALS/FRS score to stabilize.
    Here are also some thoughts as to why WF10 has not been taken forward as a potential treatement for MND:

    http://als.net/forum/Default.aspx?g=...93&p=38#335027
    Last edited by MattJ; 18th August 2011 at 21:04.

  5. #5
    Forum Member MattJ's Avatar
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    Hi Graham,

    At this point in time I think the MNDA will just say "no comment". I am sure an official response will come in October 2012 when the trial finishes. Great!

    I have discussed WF10 with my mum's clinic and her GP. The clinic are not interested due to lack of hard clinical data which I understand but still find very frustrating. They won't even consider it on compassionate grounds and the phrase "snake oil" was used which I thought was a little inappropriate. There is to much evidence to say this is dubious. More importantly the drug is not licensed through the NHS so both the clinic and GP cannot prescribe / obtain it. With this in mind, if something went seriously wrong, they would be in serious trouble with the GMC.

    So as you mentioned Graham that the leaves the private route which I am actively pursuing. I'll keep you posted with how I get on but my gut feeling is that it will be the same response.
    Last edited by MattJ; 18th August 2011 at 21:22.

  6. #6
    Jacqui Priestley
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    The Phase II trial will be discussed at the 22nd International Symposium but it's about time we were allowed to have a punt!!

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    hi matt,

    i normally only read your posts but i have a question on this one. The thread title relates to Np001 and then we go on to mention wf10. there must be some difference between these two, no?

    Sorry if this is old ground for all of you. i am not so up on these things

    Jenny

  8. #8
    Robyn Copley-Hirst
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    Hi Everyone,

    Our research team have been discussing this today, for some time in fact, and I'll have some information that might be of interest to the thread which I'll post first thing Monday morning.

    Robyn

  9. #9
    Forum Member MattJ's Avatar
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    Hi Robyn,

    I hope the information is to tell us how to obtain WF10!

    Just noticed that your response has been spotted on ALS TDI. You will have quite a few people checking on Monday.

    http://als.net/forum/Default.aspx?g=...336069&#336058
    Last edited by MattJ; 19th August 2011 at 23:38. Reason: ALS TDI update

  10. #10
    Forum Member MattJ's Avatar
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    Hi Jenny,

    Sorry ... bit of an upturned conversation.

    There is evidence to suggest that NP001 is in fact based on WF10, with minor modifications to facilitate intravenous administration. Dr. Michael McGrath at the University of California, San Francisco and co-founder of Neuraltus, was formerly employed as Chief Scientific Officer of Oxo Chemie (predecessor to Nuvo Research). In 2005, after leaving Oxo Chemie, McGrath submitted his own patent application (linked above) for the use of TCDO (Tetrachlorodecaoxide) in the treatment of ALS. McGrath’s application specifically mentions WF10 and its efficacy in treating ALS.

    This is the connection between NP001 and WF10.

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