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Whether to Join a Medical Study - 6/6/2008 8:32:23 AM

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i live in Cleveland, home to the nationally-acclaimed Cleveland Clinic. There are a myriad of medical studies of 'investigational drugs' being conducted here all the time. One which caught my attention is on fibromyalgia.

What do Y/you think about joining such studies? Would Y/you take a drug which had not yet been through human testing? There is no compensation involved; just the hope for the patient that the drug will afford them some new level of relief.

i'm on the fence. i'm in flare again, and narcotics do nothing for me. i need morphine, a schedule III drug my MD is sure as hell not gonna prescribe for me. Nothing else i've tried -- and i have been through a lot of narcotics -- has had any effect at all. None. Zip. Zero.

During my first flare, i'd call 911 and have an ambulance take me to the hospital, where i'd get a morphine shot that would allow me to sleep and relieve my pain for a good 8 hours.

i don't want to use the ER as my only means of managing pain and getting sleep....so i am tempted to join the study. Only fear of undiscovered side effects is holding me back.

What do Y/you think?

pinksugarsub

< Message edited by pinksugarsub -- 6/6/2008 8:34:19 AM >

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RE: Whether to Join a Medical Study - 6/6/2008 9:09:09 AM

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quote:

What do Y/you think?

traditional, pharmaceutical painkillers---aspirin, oxycodone, oxycontin, etc. have the opposite effect on this slave than they do to most folks. this led this slave to seek out medicine that DOES work, for her.

she is able to manage neuropathy, insomnia and nausea better by ingesting a small, homemade brownie every evening than if she had the keys to the local Rite-Aid Pharmacy.

for your edification:

quote:

PROPOSAL TO LEGALIZE MEDICAL MARIJUANA IN STATE SENATE

Columbus -- Ohioans who use marijuana for medical reasons would not face arrest or prosecution, under legislation to be introduced by one state lawmaker.

Sen. Tom Roberts, D-Dayton, announced his intentions to offer the Ohio Medical Compassion Act, creating a regulated system for the medicinal use of cannabis.

A dozen other states already have adopted comparable protections for their citizens, Roberts told reporters during a press conference May 21.

"It is time for Ohio to join these states on the forefront of emerging medical breakthroughs and scientific advances," he said.

http://www.mapinc.org/drugnews/v08/n530/a05.html?197

North Ohio Chapter of NORML

Recent Research on Medical Marijuana

(in reply to pinksugarsub)

RE: Whether to Join a Medical Study - 6/6/2008 9:17:54 AM

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From: Houston, TX
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*HUGE HUG*

I'm sorry you're having to deal with such a debilitating condition. I know that this isn't going to be much help, but only you can decide if you're willing to take part in an investigational study of new medication for your condition. Yes, the risks can be substantial, but then again, so can the benefits. Speaking as the parent of a child who participated in a clinical trial for a device to repair her heart defect, I can say that I'm very glad we did it because it spared her from the traditional open heart procedure and today, she's fine. Speaking only for myself, I'd be inclined to go for it. You can always withdraw from the study should you decide that the side effects aren't worth it.

This website may answer some questions that you may have:

http://clinicaltrials.gov/

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RE: Whether to Join a Medical Study - 6/6/2008 9:25:01 AM

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i have fibro and would love more then anything to be able to manage my pain better but i would never ingest an investigational new drug and be anyone's guinea pig. You have no idea of the complications this drug could leave you with.

There is a new drug called lyrica, have you tried that? i heard it has side effects and isn't very effective. There is also a clinic in CA somewhere (very expensive) with this doctor who claims he can cure firbro in 2 to 3 months. His theory is that people with this syndrom have a narrow opening at the base of the skull where the spine leads down the back. The narrowness allows for pulling of the nerve bundles which is why there is such widespread pain.

Fibro is a very difficult thing to live a normal life with. People don't see it so they get tired of hearing how you don't feel well cause you look so great

........ It really affects the quality of life.

Exercise does help they say. i am currently doing pool exercise therapy after knee surgery and it's much easier on the joints then doing the same exercises outisde of a pool.

i am no longer able to take anti inflammatory drugs as i have sever gastritis from them. i never realized how much they were helping me till i had to go off them completely. i have percoset and will use them sparingly but it's hard to take them and then have to come back to baseline and deal with the pain. That is why i only use them when i really need to get physical things done that i would not be able to without pain meds. i just accept the fact i can't do what i used to be able to do. Hard place to get to, but necessary if you are going to have any peace of mind.

Good luck to you...... hope they find a cure soon!

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RE: Whether to Join a Medical Study - 6/6/2008 11:22:02 AM

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From: Woodstock ONT,CANADA
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My step mom had been asked to be a part of the Vioxx study luckily she decided to turn it down ..she did have undiagnosed heart problems as well at the time which could have resulted in her dying if she had participated in
http://www.drugrecalls.com/vioxx.html

you stated I believe in another post the RX drugs can cause problems for your stomach... each study comes with a list of terms that you have to agree to and it could include continuing the study even if stomach upset occurs as was the case in the Vioxx study ..one of the reasons my mom chose not to..it also spells out what they cover in case things go wrong which means you cannot turn around later and sue them for damages because you voluntarily agreement to the terms

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RE: Whether to Join a Medical Study - 6/6/2008 11:57:24 AM

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From: Austin Texas
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Okay why won't your doctor prescribe the pain meds you need?
Change doctors before underoing a clinical trial is my suggestion.

On the Lyrica, it has done more for me the last 3 months than all the Fentynal patches & Morphine Sulfate in the world.
It may or may not work for you.
I spent a full hour on my riding lawn mower today. I could not have done that in the last 8 years.

I'm sunburnt, bug bitten and sticky. I couldn't be happier.

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~Love your life! (It is the only one you'll get).

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RE: Whether to Join a Medical Study - 6/6/2008 1:40:14 PM

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quote:

ORIGINAL: camille65
...and sticky.

Uuuuummm...?

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RE: Whether to Join a Medical Study - 6/6/2008 1:46:33 PM

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From: Austin Texas
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90 degrees and sunny. So yes.

Stickyyyyyyyyyyyyyyyyyyyy.

Okay. I have a thing for lawn mowers.
Tractors.
Earth moving equipment.
Oooh I'm getting stickier!

I whipped off my tshirt and mowed in nothing but jeans and sneakers with the sun beating down on me. The rumble rumble of my tractor echoed in my head while I screamed/sang Abba as loud as possible.
Behind me trailed a group of dragonflies, excited by the bugs I was stirring up as I rumbled rumbled rumbled along on my trusty green tractor. Sweat pouring off my body and pooling in the seat, soaking my jeans and running down my legs when I finally unstraddled BigBoy (the tractors name).

Now I'm even stickier stickier!
*fans herself*
Oh god is it getting warmer?
I love to mow.

Cept now I can hardly move my arms and my damned jaw is locked shut. Ah well.
Something as pleasurable as mowing is worth a bit of pain.

Stickyyyyyyyyyyyyyyyyy.

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RE: Whether to Join a Medical Study - 6/6/2008 2:47:12 PM

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From: Washington
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I think it would depend on the requirements of the study. If you have to give up all other medications then end up with a placebo you would have no relief at all. Is this one of the first studies done with this new drug? If so then you would have no clue as to possible side effects or interactions. Personally I wouldn't do it.

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proudsub

"Without goals you become what you were. With goals you become what you wish." .

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(in reply to pinksugarsub)

RE: Whether to Join a Medical Study - 6/6/2008 2:59:56 PM

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Joined: 11/24/2005
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quote:

The six volunteers developed severe reactions within three hours of being given TGN1412 intravenously, while two other men who were given a placebo showed no sign of illness. One of those who was given the placebo told the BBC that the men who became ill reported feeling cold before developing severe headache and swelling of the head and neck. They later developed multiple organ failure and needed intensive care.

http://bmj.bmjjournals.com/cgi/content/full/332/7543/683?ehom

Someone has to do it.

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∞ ﮒuקּƹɼ ƾɛϰưϫԼ Ƨωιϯϲћ.

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RE: Whether to Join a Medical Study - 6/6/2008 10:17:39 PM

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From: Liechtenstein
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quote:

ORIGINAL: pinksugarsub

i live in Cleveland, home to the nationally-acclaimed Cleveland Clinic. There are a myriad of medical studies of 'investigational drugs' being conducted here all the time. One which caught my attention is on fibromyalgia.

What do Y/you think about joining such studies? Would Y/you take a drug which had not yet been through human testing? There is no compensation involved; just the hope for the patient that the drug will afford them some new level of relief.

i'm on the fence. i'm in flare again, and narcotics do nothing for me. i need morphine, a schedule III drug my MD is sure as hell not gonna prescribe for me. Nothing else i've tried -- and i have been through a lot of narcotics -- has had any effect at all. None. Zip. Zero.

During my first flare, i'd call 911 and have an ambulance take me to the hospital, where i'd get a morphine shot that would allow me to sleep and relieve my pain for a good 8 hours.

i don't want to use the ER as my only means of managing pain and getting sleep....so i am tempted to join the study. Only fear of undiscovered side effects is holding me back.

What do Y/you think?

pinksugarsub

I participated in a galucoma med double-blind study a few years ago. I was thoroughly monitored for any untoward side effects, lack of efficacy, and so on.

I'm considering entering into a study for chronic pain meds. I'd be looking forward to a certain side effect from it, hehehe.

I look at it this way: if there's something I can do which will help advance the state of medical treatment, alleviate some suffering, and improve peoples' lives, I'll do it again.

I'm all for it. Pity you live in Cleveland.

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(in reply to pinksugarsub)

RE: Whether to Join a Medical Study - 6/7/2008 2:36:19 PM

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quote:

ORIGINAL: velvetears
There is also a clinic in CA somewhere (very expensive) with this doctor who claims he can cure firbro in 2 to 3 months. His theory is that people with this syndrom have a narrow opening at the base of the skull where the spine leads down the back. The narrowness allows for pulling of the nerve bundles which is why there is such widespread pain.

I believe this is [one of] the folks who believes that chronic fatigue syndrome or fibro is caused by Arnold-Chiari Malformations [aka Chiari Malformations, or ACM1]. Which is why neurosurgeons were inundated with patients about 6 years ago - including mine. I told the office that I really did have an official diagnosis of ACM1 but it was still "let us look at the MRI" before I got an appointment. ACM1 is where you have too little skull & too much brain; part of the cerebellum is pushed out of the skull & squishes the spinal cord.

I've got ACM1, had the surgery for it, and never had fibro or cfs symptoms.

thornhappy

(in reply to velvetears)

RE: Whether to Join a Medical Study - 6/8/2008 8:25:34 AM

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quote:

ORIGINAL: thornhappy

quote:

ORIGINAL: velvetears
There is also a clinic in CA somewhere (very expensive) with this doctor who claims he can cure firbro in 2 to 3 months. His theory is that people with this syndrom have a narrow opening at the base of the skull where the spine leads down the back. The narrowness allows for pulling of the nerve bundles which is why there is such widespread pain.

I believe this is [one of] the folks who believes that chronic fatigue syndrome or fibro is caused by Arnold-Chiari Malformations [aka Chiari Malformations, or ACM1]. Which is why neurosurgeons were inundated with patients about 6 years ago - including mine. I told the office that I really did have an official diagnosis of ACM1 but it was still "let us look at the MRI" before I got an appointment. ACM1 is where you have too little skull & too much brain; part of the cerebellum is pushed out of the skull & squishes the spinal cord.

I've got ACM1, had the surgery for it, and never had fibro or cfs symptoms.

thornhappy

Thank you thornhappy for the info.... very encouraging information. i am going to ask my doctor about ACM1 being a possibility. i never heard of that before your post. When i read this CA doctor's site i don't recall that term at all. His treatment, as i recall, wasn't surgical but rather a kind of physical therapy. It was way beyond my means to ever be treated there, as you had to pay room and board as well as the hundreds every day he did this manipulation on you..... thousands of dollars. Then i thought, if this was such a great cure why wouldn't there be doctors all over the country doing it. i became skeptical despite being very eager to be rid of this condition.

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RE: Whether to Join a Medical Study - 6/8/2008 2:43:30 PM

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CFS/fibro's been a mystery for quite awhile. While there's more information being discovered about it, just the fuzziness (different symptoms, for instance) of the illnesses make it hard to evaluate, and the lack of good treatments leads to a lot of free-lancing by folks who have magic cures.

Spinal manipulation on someone with ACM1 is dangerous, and even more so if they've had the surgery to compensate for it (posterior fossa decompression, dura patch, and C1/C2 laminectomy). The cervical spine's weaker and easier to break or dislocate (no more contact sports, bummer.)

thornhappy

(in reply to velvetears)

RE: Whether to Join a Medical Study - 6/8/2008 4:00:08 PM

Monkeyontuesday

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Just a thought --

I have a friend who goes fairly often for medical trials in Austin (perhaps 3 -- 4 times per year) for two weeks at a time. He has never had any lasting complications and is a healthy individual. I would agree about the Vioxx study -- look into it and see what the stipulations are -- but if you feel it would help out your pain management, I would do it, personally.

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RE: Whether to Join a Medical Study - 6/8/2008 4:15:10 PM

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quote:

ORIGINAL: camille65

Okay why won't your doctor prescribe the pain meds you need?
Change doctors before underoing a clinical trial is my suggestion.

On the Lyrica, it has done more for me the last 3 months than all the Fentynal patches & Morphine Sulfate in the world.
It may or may not work for you.
I spent a full hour on my riding lawn mower today. I could not have done that in the last 8 years.

I'm sunburnt, bug bitten and sticky. I couldn't be happier.

MD's are regulated partially by the FDA. Legislation dictates a set of schedules for all drugs, Rx and illegal. MD's must submit reports to the government when they prescribe drugs on Schedule III, like morphine.

My MD is not going to risk being seen as Dr. FeelGood by any regulatory body just to help me out. i can't blame him; i wouldn't risk my bar license for a client either.

i also don't think he really believes me when i tell him the narcotics he has prescribed in the past have had no effect. Conventional thinking is they should have put me on my ass.

Fibro is a tough disease partially because its sufferers are required to be aggressive in pursuing treatment to a degree other patients never are.

i appreciate the comments. i still haven't made my mind up yet.

pinksugarsub

< Message edited by pinksugarsub -- 6/8/2008 4:16:50 PM >

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RE: Whether to Join a Medical Study - 6/8/2008 4:39:23 PM

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I think you should consider the possibility that you are addicted to the rush from the Morphine shot if similar Narcotics in pill form do not work.

< Message edited by impossiblesub -- 6/8/2008 5:06:24 PM >

(in reply to pinksugarsub)

RE: Whether to Join a Medical Study - 6/8/2008 4:46:16 PM

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quote:

ORIGINAL: velvetears

i am no longer able to take anti inflammatory drugs as i have sever gastritis from them. i never realized how much they were helping me till i had to go off them completely. i have percoset and will use them sparingly but it's hard to take them and then have to come back to baseline and deal with the pain. That is why i only use them when i really need to get physical things done that i would not be able to without pain meds. i just accept the fact i can't do what i used to be able to do. Hard place to get to, but necessary if you are going to have any peace of mind.

Good luck to you...... hope they find a cure soon!

Try Tramadol, it is non-scheduled and a mild opiate.

(in reply to velvetears)

RE: Whether to Join a Medical Study - 6/8/2008 5:01:47 PM

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From: Austin Texas
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quote:

ORIGINAL: impossiblesub

I think you should consider the possibility that you are addicted to the rush from the Morphine shot if similar Narcotics in pill form do not work.

I don't know if I buy a doctors being that afraid to be seen as a Dr FeelGood. Unless there is no basis for the medication.
I've been on things like Fentynal, oxycontin, MS Contin, Morphine Sulfate, Soma and numerous others for 9 years.
My doctor has me rotate through them, I carefully chart and track every medication and side effect.

Lupus, Fibro and other similar things are terribly frustrating. They can lead to a brutal cycle of pain, depression then more pain that seems to never end. It took me a very very long time to find any balance and I'm still only partly.. viable.
No one can 'see' it, so few can understand it.

The fact that I could do any lawn mowing at all is amazing and it is due to the Lyrica. So far the only side effects have been swollen feet/hands which is more than a bargain IMO.

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RE: Whether to Join a Medical Study - 6/9/2008 7:19:35 AM

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From: Apple County NY
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If there's no other treatment, then yes I would try an experimental drug. It might help, and that's what you're seeking.

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