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Lizzie2
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Updates on Jefferson Clinical Trials
« on: Sep 23rd, 2004, 4:04pm » |
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For those of you who might be interested in participating at clinical trials at Jefferson Headache Center, here is the contact information of Melissa Bloom who will gladly take your information regarding studies! Feel free to contact her directly, or you can still go through me if you want. She asked me to let you all know that at the present time, the headache center can only accept local study participants. Thanks though to those of you who offered your time from far away!! Also, you must be in cycle during the study time (duh...), but if you're not..feel free to contact her anyways! A few of the trials haven't gotten approved to start yet, so if you're not in cycle now, there may still be a trial going on when you are. She can at least get your name down and contact you when trials pop up! Hope this info helps!!
Melissa Bloom, MS
Jefferson Headache Center
Clinical Research Coordinator
111 South 11th St. Suite 8130
Philadelphia, PA 19107
Ph 215-955-9476
Fax 215-955-2060
Also, you can check out Jefferson's website at http://www.jefferson.edu/headache
At some point over the past few years, I have been a patient, ER employee, research assistant, student, and nurse extern at Jefferson...so obviously I think it is a good place. However, I was a patient first! Hopefully by May I'll also be a graduate...haha!
Carrie/Lizzie2 
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Lizzie2
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Re: Updates on Jefferson Clinical Trials
« Reply #1 on: Sep 23rd, 2004, 9:35pm » |
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Bump bump bump
DJ, do you think we could sticky this one to further "the cause"? Thanks in advance if ya don't mind!
Lizzie2/Carrie
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unsolved1
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Re: Updates on Jefferson Clinical Trials
« Reply #2 on: Sep 23rd, 2004, 11:19pm » |
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I've probably already done what they want to 'test out' ... LOL
UNsolved
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Lizzie2
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Re: Updates on Jefferson Clinical Trials
« Reply #3 on: Sep 23rd, 2004, 11:23pm » |
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on Sep 23rd, 2004, 11:19pm, unsolved1 wrote:I've probably already done what they want to 'test out' ... LOL
UNsolved |
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Hmmmm ... they are working on 3 cluster trials right now...one is nearing a close and 2 are just about to start up. I can't remember what all you have done, but you may have done all 3 before. I have done 2 out of 3 myself. I did the two preventatives, but not the Zomig Nasal, which will be starting at many centers....the main center being at NECH.
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Jimmy_B.
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Re: Updates on Jefferson Clinical Trials
« Reply #4 on: Sep 24th, 2004, 6:58am » |
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on Sep 23rd, 2004, 11:19pm, unsolved1 wrote:I've probably already done what they want to 'test out' ... LOL
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They are testing Decadron I.V. & Depakote P.O. ..I talked to my Doc about it last night & he said the doses of P.O. Depakote are in the very high range & that I'll probably experience so fun side effects. I told him as long as one of the side effects was no clusters...it's cool. Still going for intake on Oct. 5th @ 10am.
Thanks Lizzie...you're one special lady. 
Jimmy
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"I'd much rather be HAPPY then RIGHT any day" Slartibartfast
Get informed! Don't vote a party ticket. Go to www.vote-smart.org and find out where your political candidates stand.
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unsolved1
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Re: Updates on Jefferson Clinical Trials
« Reply #5 on: Sep 24th, 2004, 8:22am » |
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Already done the Zomig several times (years ago) with No relief.
Decadron IM & IV .. I get all the time. It's steriods !!
Depakote PO (Pills) ??? Or did you mean . Depakon ... that is the injection / infusion form. Done those too. (Both Depakote pills and Depakon infusions).
Anything else ??
Unsolved
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Jimmy_B.
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Re: Updates on Jefferson Clinical Trials
« Reply #6 on: Sep 24th, 2004, 8:26am » |
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on Sep 24th, 2004, 8:22am, unsolved1 wrote:Already done the Zomig several times (years ago) with No relief.
Decadron IM & IV .. I get all the time. It's steriods !!
Depakote PO (Pills) ??? Or did you mean . Depakon ... that is the injection / infusion form. Done those too. (Both Depakote pills and Depakon infusions).
Anything else ??
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Yeah, it's the depakote pills. How did this work for you, unsolved? Did the Depakote & Decadron help? Any mean side effects?
Any info would be helpful.
Jimmy
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"I'd much rather be HAPPY then RIGHT any day" Slartibartfast
Get informed! Don't vote a party ticket. Go to www.vote-smart.org and find out where your political candidates stand.
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Karla
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Re: Updates on Jefferson Clinical Trials
« Reply #7 on: Sep 24th, 2004, 9:19am » |
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Well I am allergic to Depakote so I guess that one is out for me. 
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Karla
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Lizzie2
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Re: Updates on Jefferson Clinical Trials
« Reply #8 on: Sep 24th, 2004, 10:02am » |
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Well as I said they have 3 studies going on now with more in the future planned, so I wouldn't write it off just yet. Anyhow, you have to be local to participate, so sorry to Unsolved and Karla but I don't think you two count as local. 
Anywho.....Jimmy did they say what dose of Depakote they are giving you? Two Saturdays ago when I was in the ER, I wound up getting 1000mg of depakote pills (they don't do the depacon IV in the ER)...it actually helped bring my pain down to a tolerable level, but I'd gotten a crapload of meds at that point (all headache meds). When I interviewed with Jin to try to get into that study, I didn't qualify because of only having one and only one cluster period...since I'm still freaking in it. She told me that Dr. Young could just go ahead and prescribe the meds for me, but I don't think I'm ready to try depakote again yet. Last time I tried it was in 2001, and I didn't have CH at that time. I suppose it'll definately be worth my trying again if nothing else works!
The other preventative study coming up is for another med that probably several of you have tried at one point or another, although it isn't one of the major ones. I took it for over 2 years, so I'm not going to be a part of that study.
I am holding out on the Zomig NS. I used Zoming tabs only once before, and they didn't work, but I've never tried it again or for CH.
I don't think I've ever used decadron IV, but I'm not sure. I think I usually get salumedrol in the IV form. That is part of the depakote study like Jimmy mentioned. Although for some reason I was thinking she had said depacon IV and depakote pills, which would be a little weird?? Not sure!! hehe
At any rate, these studies are really worth it!! They can get the meds FDA approved for CH after good clinical trials, which is why they are trying meds that they already know help some people with clusters. If they get FDA approved, it means more research and more insurance coverage for meds for CH. YAY!!! Lithium and injectible imitrex are the only meds I've seen FDA approved for CH in my drug books, so getting more meds approved is a really big deal!!
Dr. Young told me that a new seizure med is coming out in a month or two that has the potential to help with both chronic migraine and cluster. He said it looks like a good one for the complicated patients...like me and a few of us here! He said seizure meds are 50/50 on whether they are helpful or not, so we will wait and see!!
Jimmy...I'm very glad that you are getting involved in the studies!!! As well as you others who have called. Thanks
Lizzie
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unsolved1
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Re: Updates on Jefferson Clinical Trials
« Reply #9 on: Sep 24th, 2004, 12:22pm » |
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Others may get relief from Zomig, but for me ... It's Useless ! Still only Imitrex injections work for me.
Depakote is a drug used to help control seizures, prevent migraines, and control mania associated with bi polar disorder. It did nothing to help prevent or ease the attacks of my CH. Although it's been awhile ... I think I got all the way up to a dose of 1750mg per day.
I've also had it through an IV as Depakon. Didn't help.
See a list of possible side effects HERE
Decadron is a steriod. The generic form is called a "Dex Pak". You can take Decadron by IV or IM to 'jump start' a steriod taper in the ER ... or you may have it temporarly in a steriod infusion in a hospital setting.
Decadron works much like SoluMedrol. If SoluMedrol works for you, chances are Decadron will too.
Unsolved
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Jimi
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Re: Updates on Jefferson Clinical Trials
« Reply #10 on: Sep 24th, 2004, 12:33pm » |
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Ok, ok, Unsolved, these clinical trial may not be for you. We get the point, you have tried all of these things and they are useless, as least for you. But Carrie's informative posts is to all of us who may not have tried these drugs yet.
And that is what makes clusters so unique. What did not work at all for me is a lifesaver to others.
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I am convinced that life is 10% what happens to me and 90% how I react to it.
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Lizzie2
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Re: Updates on Jefferson Clinical Trials
« Reply #11 on: Sep 24th, 2004, 12:38pm » |
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<sigh> I know that. The generic of Decadron is Dexamethasone. I've taken tapers of it many times before. It was the first steroid that my old neuro used to give me to try. Anyhow, I am pretty sure that the salumedrol is the only one I've ever gotten IV in the hospital, but I've had all the glucocorticoids in some form or other. I push Decadron for patients for various reasons all the time. But anyways...
Depacon in IV form works quite well for me, but it tends to throw my Liver Function Tests all out of whack. At most, I can use it inpatient for 3 days. I was on Depakote in pill form from about July of 2001 to October or November of that year...both the regular and sustained release form. I'm pretty sure that I went up to about 900mg. The other weekend in the ER, I got 4 pills that were 250mg each. I didn't tolerate the depakote when I took it as a preventative, but I would actually consider trying it again. Somewhere down the line I might...we'll see.
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Lizzie2
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Re: Updates on Jefferson Clinical Trials
« Reply #12 on: Sep 28th, 2004, 12:04pm » |
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