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-   -   NIH Clinical Trial: Neurotropin (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/145753-nih-clinical-trial-neurotropin.html)

peppermintpatty 02-28-2011 02:10 PM
NIH Clinical Trial: Neurotropin
 
Is anyone here participating? I've just signed up and passed the preliminary screening. Now waiting for them to contact me (it could take up to a week). Of course, if we have a government shutdown, it will take longer as they won't be able to accept new patients.

mrsD 02-28-2011 03:01 PM
It might be that the trials are already paid for.

I wouldn't worry yet.

peppermintpatty 02-28-2011 03:16 PM
The funding is there for the trial, but if the government shuts down, the workers themselves won't be there. It would only be for a few days (hopefully). I just hate being held up when I want an answer. :o

ballerina 03-07-2011 10:05 PM
Quote:
Originally Posted by peppermintpatty (Post 748766)
The funding is there for the trial, but if the government shuts down, the workers themselves won't be there. It would only be for a few days (hopefully). I just hate being held up when I want an answer. :o
Hi peppermint patty,

Have you heard anything from NIH regarding the clinical trial?

Teri

peppermintpatty 03-07-2011 10:33 PM
I actually did just a few hours ago. I'm in! So excited & can't wait to see how this works out. I am so very hopeful. :cool:

ballerina 03-08-2011 06:39 AM
Quote:
Originally Posted by peppermintpatty (Post 751045)
I actually did just a few hours ago. I'm in! So excited & can't wait to see how this works out. I am so very hopeful. :cool:
Hi Peppermint patty,

Please share specifics. How long do you have to be there? Can you still take your current meds? Do they reimburse you for travel, etc?
Teri

peppermintpatty 03-11-2011 11:06 PM
Quote:
Originally Posted by ballerina (Post 751114)
Hi Peppermint patty,

Please share specifics. How long do you have to be there? Can you still take your current meds? Do they reimburse you for travel, etc?
Teri
Sorry I didn't respond sooner! Let's see....

Here's a quick blurb with some info:

Quote:
The admission criteria for this initial study have recently been amended to include patients who developed pain in one limb that has been diagnosed as having CRPS I or II for more than 2 weeks. Subjects are now being recruited for this outpatient, double blind, placebo-controlled cross-over study. The study requires 11-12 weeks with 3 or 4 short visits to the NIH Clinical Center. Eligible patients will be reimbursed for travel and other expenses, continue on their current medications as well as the experimental agents and will receive optimal medical care at no cost. The patient and/or the patient’s physician should contact the NIH at the address listed below. Upon completion of the study the patient’s physician will receive a report of the results of the study and recommendations for future treatment, as necessary.
For my first visit, I have to be there from 8a-2p. They will arrange flights and reimburse up to $20 for meals and $170/night for hotels. (Not sure how familiar you are with the DC area -- you'd be really pushed to try to eat for $20/day, but you could perhaps find a hotel for under $170/night, although taxes in the DC area can be pretty steep also.)

You can still take your current meds, I believe, except for narcotics, benzodiazepine, or Soma.

You'll take either the placebo or the drug for five weeks, then swap meds for a second five weeks.

That's as much as I have right now; awaiting more info.

Hope it helps. :)

ballerina 05-17-2011 07:49 PM
Quote:
Originally Posted by peppermintpatty (Post 752287)
Sorry I didn't respond sooner! Let's see....

Here's a quick blurb with some info:



For my first visit, I have to be there from 8a-2p. They will arrange flights and reimburse up to $20 for meals and $170/night for hotels. (Not sure how familiar you are with the DC area -- you'd be really pushed to try to eat for $20/day, but you could perhaps find a hotel for under $170/night, although taxes in the DC area can be pretty steep also.)

You can still take your current meds, I believe, except for narcotics, benzodiazepine, or Soma.

You'll take either the placebo or the drug for five weeks, then swap meds for a second five weeks.

That's as much as I have right now; awaiting more info.

Hope it helps. :)

Hi Peppermintpatty,

How is the neurotropin study going? Are you getting any relief?

betsykk 05-18-2011 05:15 AM
My daughter was in that study last summer for 10 weeks. For anyone considering it, you must have RSD in one limb/side only so that they can use the other side for comparison. They will do a lot of testing on you and they are very thorough. All of this is free to you so it is a wonderful opportunity for those with limited or no insurance.
The staff is very nice there as well. We were able to stay at the Marriott right down the street which took the per diem rate and included parking in it as well.

Liz

ballerina 05-18-2011 03:30 PM
Quote:
Originally Posted by betsykk (Post 771433)
My daughter was in that study last summer for 10 weeks. For anyone considering it, you must have RSD in one limb/side only so that they can use the other side for comparison. They will do a lot of testing on you and they are very thorough. All of this is free to you so it is a wonderful opportunity for those with limited or no insurance.
The staff is very nice there as well. We were able to stay at the Marriott right down the street which took the per diem rate and included parking in it as well.

Liz
Hi liz,

Did your daughter get any pain relief from the neurotropin?

Teri

betsykk 05-18-2011 07:22 PM
unfortunately no,. she could not really tell the difference between a and b.

amyb20 05-18-2011 10:52 PM
im sorry, im new to alot of this, what is Neurotropin?

ballerina 05-19-2011 10:27 AM
Quote:
Originally Posted by amyb20 (Post 771730)
im sorry, im new to alot of this, what is Neurotropin?
Neurotropin is extracted from the skin if rabbits and has been used extensively in Japan to treat neuropathic pain, including CRPS with excellent results. I spoke with the lead researcher who indicated that all positive responders to the drug would be able to keep taking it after their participation is the study was over.

I applied to the study myself but was initially denied because I has recently undergone tDCS. I was told that when I had a stable pain level for several months I could apply again. I opted not to however because admission to the study required an nerve a conduction test that I deemed too risky for me at this point.

Hope this helps! Teri

betsykk 05-19-2011 01:44 PM
I don't know if 'keep taking it' is exactly what will happen. It is not FDA approved, therefore your insurance probably will not pay. What you have to do is jump through hoops and YOUR doctor (not NIH) will have to apply for compassionate use and get approval for you to take it. How insurance deals with that is unknown to me. I do know of several people who have had excellent results which is very exciting.

peppermintpatty 05-22-2011 10:08 AM
Quote:
Originally Posted by betsykk (Post 771914)
I don't know if 'keep taking it' is exactly what will happen. It is not FDA approved, therefore your insurance probably will not pay. What you have to do is jump through hoops and YOUR doctor (not NIH) will have to apply for compassionate use and get approval for you to take it. How insurance deals with that is unknown to me. I do know of several people who have had excellent results which is very exciting.
The drug rep for the Nippon Zoki Pharmaceuticals indicated that they would have some part in ensuring that the drug continued to be available for trial members. (And I'm hoping that I am stating that correctly, some things may have been lost in translation.)

For trial members who have reacted favorably to the drug, there is also the option for a third phase to continue taking the drug a bit longer.

ballerina 05-23-2011 08:41 AM
Quote:
Originally Posted by peppermintpatty (Post 772687)
The drug rep for the Nippon Zoki Pharmaceuticals indicated that they would have some part in ensuring that the drug continued to be available for trial members. (And I'm hoping that I am stating that correctly, some things may have been lost in translation.)

For trial members who have reacted favorably to the drug, there is also the option for a third phase to continue taking the drug a bit longer.
Has the neutropin effected your pain level?

ballerina 07-03-2011 03:22 PM
How are you doing????
 
Quote:
Originally Posted by ballerina (Post 772979)
Has the neutropin effected your pain level?
We haven't heard from you in a while. How are thingd going with the neurotropin?

Has it given you any relief?????

Thanks!

peppermintpatty 09-22-2011 09:39 PM
Hey there guys... the long awaited response! I tried to copy & paste over here but evidently it didn't like my formatting so I'll just link you:

My Experience in a Clinical Trial at the NIH

I'll be posting more general info tomorrow about clinical trials at the NIH. If you have any additional questions, please feel free to post them either on my blog or here & I will do my best to answer them. :)

betsykk 09-23-2011 05:37 AM
My daughter completed that study in the summer of 2010. We had high hopes too and in our view, she seemed to be doing better. No trips to the ER, a little more functional. But when push came to shove, she could not see a difference between A or B and opted out.

peppermintpatty 09-23-2011 09:45 AM
Quote:
Originally Posted by betsykk (Post 808342)
My daughter completed that study in the summer of 2010. We had high hopes too and in our view, she seemed to be doing better. No trips to the ER, a little more functional. But when push came to shove, she could not see a difference between A or B and opted out.
I'm sorry to hear that. I wonder what the final statistics will be?

This disease is really a "chew you up and spit you out" disease as far as hope goes, isn't it? You never know if something is truly helping you or if it's the ebb and flow of the disease itself.

peppermintpatty 09-24-2011 12:56 AM
And here is the rest of it:

Participating in a Clinical Trial at the NIH

Jerie 09-29-2011 12:27 PM
Quote:
Originally Posted by peppermintpatty (Post 752287)
Sorry I didn't respond sooner! Let's see....

Here's a quick blurb with some info:



For my first visit, I have to be there from 8a-2p. They will arrange flights and reimburse up to $20 for meals and $170/night for hotels. (Not sure how familiar you are with the DC area -- you'd be really pushed to try to eat for $20/day, but you could perhaps find a hotel for under $170/night, although taxes in the DC area can be pretty steep also.)

You can still take your current meads, I believe, except for narcotics, benzodiazepine, or Soma.

You'll take either the placebo or the drug for five weeks, then swap meads for a second five weeks.

That's as much as I have right now; awaiting more info.

Hope it helps. :)
I'm bummed, I didn't qualify, pain is already spread. Hope something comes along soon. I'm tired of flushing money down the toilet. I'm happy for you. I pray it works out good for you.

peppermintpatty 10-03-2011 04:49 PM
Quote:
Originally Posted by Jerie (Post 810438)
I'm bummed, I didn't qualify, pain is already spread. Hope something comes along soon. I'm tired of flushing money down the toilet. I'm happy for you. I pray it works out good for you.
Wow, I'm sorry it didn't work out for you. Have you considered any others?

I went through the trial but ultimately the med didn't work for me. It was - and still is - very disappointing, but I'm just moving on to the next step.


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