John Hopkins Glutamate Study

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skn0412
Posts: 51
Joined: Thu Sep 18, 2008 10:27 pm
Location: Seneca, South Carolina

John Hopkins Glutamate Study

Postby skn0412 » Tue Jan 07, 2014 5:44 pm

Has anyone on the forum participated in the Glutamate Study at John Hopkins ?? Was wondering how their experience was with this. I was accepted to participate and just started weaning off my current meds which is being monitored by Dr. Earley. I also have a scheduled appointment with him during my stay in Baltimore so he can help with my medication (I am weaning off of Clonopin, then Mirapex, which will take almost thirty days !!). I have no physician locally that is WED/RLS friendly and he just keeps increasing my Clonopin and tells me to take the Mirapex however it helps most........having a consult with Dr. Earley will be money well spent in my book, especially since he is going to get me pointed in the right direction with meds. as well as continue to assist with the monitoring of my medications. I would be classified as "severe RLS sufferer"........being off meds will be rough, but helping with this study is so important to me as all my family suffers, and my son has it as well !!! A small price to pay for future generations.

Anyway, been a long time since I have posted on the Forum....hope everyone is well. Will be interesting to see if anyone has participated in the Study at JH.

Thanks for any and all responses !!! :)
Sue

Polar Bear
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Re: John Hopkins Glutamate Study

Postby Polar Bear » Tue Jan 07, 2014 8:06 pm

Thank you for taking part in this study, you are doing it for all of us.
Best wishes.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: John Hopkins Glutamate Study

Postby ViewsAskew » Wed Jan 08, 2014 2:42 am

I don't think I've heard anyone say there were part of it. Maybe some of our members are and they just haven't posted about it. I'm just DARN glad he's doing it! He's really a hero in my book. And, so are you and those who are going through it. Big hugs to you!
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

cornelia

Re: John Hopkins Glutamate Study

Postby cornelia » Wed Jan 08, 2014 11:44 am

I applaude you warmly for deciding to take part in this study. I wouldn't call the withdrawal a SMALL price to pay and so I find it even more brave. I wonder how they can study you when you might not be able to sleep at all or only for a few intermittant hours?

I hope you will tell us about your experience.
Thank you!
Corrie

skn0412
Posts: 51
Joined: Thu Sep 18, 2008 10:27 pm
Location: Seneca, South Carolina

Re: John Hopkins Glutamate Study

Postby skn0412 » Wed Jan 08, 2014 10:26 pm

Thank You !!! I will definitely keep you posted and will update everyone on how my experience with the study goes. I don't go to Baltimore until February 11th. A very close friend of mine that I've known for 30 years is participating as a non-RLS sufferer ... which I greatly appreciate !! She has seen me at my worst with WED and we will be in Baltimore at the same time, I know I will be miserable at that point from lack of sleep and who greater to share it with than someone that understands and knows first hand how cranky and miserable I will be !!!!! Agreed Corrie, I am already paying the price and my Clonopin has only been reduced by half ..... eeeek ...... I will see this through if I have to be up every night walking.
Sue

QyX
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Location: Berlin / Germany

Re: John Hopkins Glutamate Study

Postby QyX » Thu Jan 09, 2014 6:40 pm

Hello skn,

thank you for your dedication!

I wish you the best of luck with the reduction of Clonopin (I think it is Clonazepam, right?). I know how difficult this can be from my own experience.

Good luck!

Joanie60
Posts: 194
Joined: Thu Mar 15, 2012 2:48 pm

Re: John Hopkins Glutamate Study

Postby Joanie60 » Mon Jan 13, 2014 5:50 am

Thanks from me as well. I talked to Tiana at Hopkins about this study but I am just not in a position to go off all meds for 13 days. Being self-employed, I am sure I would end up firing myself, I am quite anxious to hear of your experience!!

Joanie

badnights
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Re: John Hopkins Glutamate Study

Postby badnights » Fri Jan 17, 2014 10:11 am

I am on their back-burner list. I went through the interviews and was acceptable, but they think I'm too far away and too severe for them to be able to manage the withdrawal well. They're keeping me in mind. So to speak. If they get desperate, I guess :)

What a great idea, to have you bring a friend to be a control.

I hope you get through it without much trauma. Take advantage of the opportunity to talk to Allen and Earley about WED, and about their research, and about what they see in other patients.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

skn0412
Posts: 51
Joined: Thu Sep 18, 2008 10:27 pm
Location: Seneca, South Carolina

Re: John Hopkins Glutamate Study

Postby skn0412 » Wed Feb 05, 2014 1:14 pm

UPDATE:
I have finished my thirty day tapering of the Klonopin and my last dose of Mirapex was Saturday night ....... this has been an interesting journey ......

I think I have been through hell and back !!! I was awake for 62 hours straight. My RLS came back with a very angry vengeance; the only relief I could get was continuous standing and walking, as soon as I sat or lay down BOOM, immediate and severe discomfort like I have NEVER experienced !! The RLS in my arms was unbearable, I was wishing for a punching bag !! Yesterday I talked to the research coordinator, Tiana, at John Hopkins (Gosh, what a great source of support she has been and a great cheerleader). She gave me a much needed pep talk (even offered a phone call from Dr. Earley for additional support!!) and sent me a ten day synopsis of what to expect after the last dose of Mirapex, and it was right on target with Day 1 and 2 absolutely no sleep and horrendous, severe RLS rebound. The document she sent, had I read it previous to yesterday I probably would have said "Really? Four days of no sleep? I can't do that" Today is day four and Glory be to God, I slept in two segments of four hours last night. Maybe out of exhaustion but it was sleep, both times I woke soaked in sweat !! These next two days are critical because this is when people quit and say I can't take it and go back on the Mirapex . THAT IS NOT AN OPTION OR ME !! I think I have it licked .... my RLS is minor this morning; I am wearing leg monitors until I leave Tuesday for John Hopkins. My appointment with Dr. Earley is Wednesday morning, he is going to set-up a treatment plan for me. Even if I wasn't in the Clinical Trial and was going to change medication I would have had to taper off the Mirapex and go through this withdrawal period. The beauty is that once I see Dr. Earley and the Study Tests are complete, I can immediately start on my new Meds. It will be interesting to see what he has planned for me. I am very excited about the opportunity to see a doctor that IS going to help me and understands how debilitating this disease can be !!! No more Mirapex or Klonopin for me (I was already at the Max dose for Mirapex anyway and was augmenting) !!

We will see what today brings .... I can only do this one day at a time ..... hopefully my husband can survive this as well !!!!! He is sleeping in the spare bedroom and I have been trying to be as quiet as I can at night. Geesh, its a long darn night on your feet, pacing trying to be quiet with nothing to do !!!

Blessings to All !!
Sue

Joanie60
Posts: 194
Joined: Thu Mar 15, 2012 2:48 pm

Re: John Hopkins Glutamate Study

Postby Joanie60 » Wed Feb 05, 2014 2:46 pm

Blessings to YOU, Sue!! I wish I was brave enough to do it, but I just can't maintain working, etc, and go off meds. Thank heavens you are brave enough and willing enough to sacrifice for all of us!! Keep us posted, you are in my heart :-)

cornelia

Re: John Hopkins Glutamate Study

Postby cornelia » Wed Feb 05, 2014 3:02 pm

I thank you from the bottom of my heart. You are a very strong person and I hope that day 5 and 6 will quickly be over. I can imagine that these nights walking around will feel very lonely. Think of the future when you will be cared for by a well known doctor who will be proud of you like we are. Think of the nights that you will sleep better again and how that feels!
Corrie

Joanie60
Posts: 194
Joined: Thu Mar 15, 2012 2:48 pm

Re: John Hopkins Glutamate Study

Postby Joanie60 » Wed Feb 05, 2014 3:08 pm

I found Dr Allen through a clinical trial at Hopkins (the nasty nasty SIT test) (nothing like what you are going thru!!!). Best thing that ever happened to me. You are going to be in such good hands!!

skn0412
Posts: 51
Joined: Thu Sep 18, 2008 10:27 pm
Location: Seneca, South Carolina

Re: John Hopkins Glutamate Study

Postby skn0412 » Wed Feb 05, 2014 3:51 pm

@Joanie.....had I been working, there would of been no way I could have done this. Between weaning off the medicine, which I had plenty of sleepless nights in the last month, to the past three days and four days next week, one would have to have a very, very supportive employer; which is hard to come by these days.
@Corrie.....Thank you for your kind words; your support, everyone's, means so much to me. I really think they are onto something with this study; and I hope down the road it will help my son who is a sufferer. And help all of us !!! There's GOT to be a breakthrough somewhere !!
@Joanie.....I am very excited to have the opportunity to spend time with Dr. Earley and have him monitor my care; he is going to work with my physician here at home and follow my progress.

Thanks ladies for your support and words of encouragement !!!! I need all I can get right now ....... I will surely keep you posted on my progress !!
Sue

Joanie60
Posts: 194
Joined: Thu Mar 15, 2012 2:48 pm

Re: John Hopkins Glutamate Study

Postby Joanie60 » Wed Feb 05, 2014 4:01 pm

Sue, I have the worst kind of employer. Myself. hahahahah. My employees would stage a walk out. Between WED and the on-set of hot flashes, I am a red hot mess often enough as it is.

Just remember, this too shall pass. And have hope, the JHU crew solved what I thought was unsolvable. And their compassion!!! You will be enveloped in care and kindness as soon as you hit the campus. The techs who worked the SIT study were fantastic. Just hold onto that...you are about to experience a new level of care, one I wish was available for all sufferers. Now if our weather will hold for you!!! Fortunately, the winter storm predicted for this weekend is not shaping up to be a major one.

Give your husband a hug from all of us...the unseen knights in shining armor, our loved ones!! (I know mine is the best, yours has to take second best status lol)

Polar Bear
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Re: John Hopkins Glutamate Study

Postby Polar Bear » Wed Feb 05, 2014 7:02 pm

Sue - I can only say that I agree with everything that everyone else has said. I want to give you a trumpet fanfare... ... and to hear how Joanie tells you of their care and compassion makes the hair on the back of my neck stand up. Imagine this care for all sufferers.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation


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