Re: Vanderbilt study

[Guest guest]

Alice, that's exciting! What drug are they testing? I'm sure you told us, but you know how long most of us can retain anything!

When they did the big Remicade study, I applied but my lung function wasn't bad enough. I was hoping it would help the NS symptoms. As it turned out, many people did get some relief from other symptoms besides pulmonary. By that time, I was in remission, but if the sarc monster dares to poke his head out again, I'll be looking at Remicade early on.

Good luck, and I hope that if you are on the drug rather than the placebo, that you'll get benefits that outweigh any side effects.

Ramblin' RoseModerator

It's not that life is so short-------It's that we wait so long to begin.

(attributed to Wooden, among others)

> To: Neurosarcoidosis > Date: Fri, 27 Aug 2010 05:36:11 +0000> Subject: Vanderbilt study> > I went to to Vanderbilt yesterday ( Wednesday August 25th 2010 ). I had to have bloodwoork. Which 10 of the tubes will be sent all over the world for sarcoidosis research, the nurse told be that they can test the blood for up to two years. I took what they call a loaded dose yesterday, then today I started on seven pills , which I take at the same time, There will be 15 people in the study, I'm number 12. The study will last for 12 weeks with me taking the meds for 8 weeks. I will go back in 4 weeks for test and pick up my meds, then at 8 weeks I will go back for 6 hours of test. I want get anyomre meds. I will continue to take the meds I am on for the sarcoidosis, I will start to taper off my other meds after 8 weeks. Then at 12 weeks, they will call me and if I am having probelms I will go up for more test. Of course they don't know of side affects. They could tell me the side affects of each drug. I do have to keep a diary. Dr. Drake is a Christian. She told me to go home take the medicine and pray. You had to meet a certain criteria to be in the study.She told me at any time I felt like I couldn't handle it to call and I could stop at anytime. I feel that God has blessed me with this chance to be on a cutting edge cure.> The study is for the lung's.I did sk if she thought tht it might help my neuro-sarc. Of course she didn't know. She sid will can hope, tht it would be good if it did.> > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

This is great news, I was accepted to a study in Cleveland, but had to pay my own way there, and my lodging, and just didn't have the money to do that.  I will pray took, that these meds are great and really help you with little to no side effects, keep us posted.

would be awesome if there's something else out there that can help, would be great!  Blessings, Marla

 

I went to to Vanderbilt yesterday ( Wednesday August 25th 2010 ). I had to have bloodwoork. Which 10 of the tubes will be sent all over the world for sarcoidosis research, the nurse told be that they can test the blood for up to two years. I took what they call a loaded dose yesterday, then today I started on seven pills , which I take at the same time, There will be 15 people in the study, I'm number 12. The study will last for 12 weeks with me taking the meds for 8 weeks. I will go back in 4 weeks for test and pick up my meds, then at 8 weeks I will go back for 6 hours of test. I want get anyomre meds. I will continue to take the meds I am on for the sarcoidosis, I will start to taper off my other meds after 8 weeks. Then at 12 weeks, they will call me and if I am having probelms I will go up for more test. Of course they don't know of side affects. They could tell me the side affects of each drug. I do have to keep a diary. Dr. Drake is a Christian. She told me to go home take the medicine and pray. You had to meet a certain criteria to be in the study.She told me at any time I felt like I couldn't handle it to call and I could stop at anytime. I feel that God has blessed me with this chance to be on a cutting edge cure.

The study is for the lung's.I did sk if she thought tht it might help my neuro-sarc. Of course she didn't know. She sid will can hope, tht it would be good if it did.

[Guest guest]

I hope all works out well for you. Hope that out of this study they do begin to find a cure. Take care. Be well.MattSubject: Vanderbilt studyTo: Neurosarcoidosis Date:

Friday, August 27, 2010, 1:36 AM

I went to to Vanderbilt yesterday ( Wednesday August 25th 2010 ). I had to have bloodwoork. Which 10 of the tubes will be sent all over the world for sarcoidosis research, the nurse told be that they can test the blood for up to two years. I took what they call a loaded dose yesterday, then today I started on seven pills , which I take at the same time, There will be 15 people in the study, I'm number 12. The study will last for 12 weeks with me taking the meds for 8 weeks. I will go back in 4 weeks for test and pick up my meds, then at 8 weeks I will go back for 6 hours of test. I want get anyomre meds. I will continue to take the meds I am on for the sarcoidosis, I will start to taper off my other meds after 8 weeks. Then at 12 weeks, they will call me and if I am having probelms I will go up for more test. Of course they don't know of side affects. They could tell me the side affects of each drug. I do have to keep a diary. Dr. Drake is a

Christian. She told me to go home take the medicine and pray. You had to meet a certain criteria to be in the study.She told me at any time I felt like I couldn't handle it to call and I could stop at anytime. I feel that God has blessed me with this chance to be on a cutting edge cure.

The study is for the lung's.I did sk if she thought tht it might help my neuro-sarc. Of course she didn't know. She sid will can hope, tht it would be good if it did.

[Guest guest]

The study consists of four oral antibiotics Ethambutol, azithromycin, rifabutin, and levaquin. They are doing to different studies with these drugs one is a skin study and it is blind study some get the meds and the others get placebo. With they lung study all fifteen get meds.

To: Neurosarcoidosis Sent: Fri, August 27, 2010 11:49:48 AMSubject: Re: Vanderbilt study

This is great news, I was accepted to a study in Cleveland, but had to pay my own way there, and my lodging, and just didn't have the money to do that. I will pray took, that these meds are great and really help you with little to no side effects, keep us posted. would be awesome if there's something else out there that can help, would be great! Blessings, Marla

I went to to Vanderbilt yesterday ( Wednesday August 25th 2010 ). I had to have bloodwoork. Which 10 of the tubes will be sent all over the world for sarcoidosis research, the nurse told be that they can test the blood for up to two years. I took what they call a loaded dose yesterday, then today I started on seven pills , which I take at the same time, There will be 15 people in the study, I'm number 12. The study will last for 12 weeks with me taking the meds for 8 weeks. I will go back in 4 weeks for test and pick up my meds, then at 8 weeks I will go back for 6 hours of test. I want get anyomre meds. I will continue to take the meds I am on for the sarcoidosis, I will start to taper off my other meds after 8 weeks. Then at 12 weeks, they will call me and if I am having probelms I will go up for more test. Of course they don't know of side affects. They could tell me the side affects of each drug. I do have to keep a diary. Dr. Drake is a

Christian. She told me to go home take the medicine and pray. You had to meet a certain criteria to be in the study.She told me at any time I felt like I couldn't handle it to call and I could stop at anytime. I feel that God has blessed me with this chance to be on a cutting edge cure.The study is for the lung's.I did sk if she thought tht it might help my neuro-sarc. Of course she didn't know. She sid will can hope, tht it would be good if it did.