Drug Would You Take an Experimental Drug For ME/CFS and/or FM?

Would you take a promising but highly experimental drug for ME/CFS and/or FM?

  • I'd take it in a snap

    Votes: 31 30.4%
  • I'd learn towards taking it

    Votes: 35 34.3%
  • I'd see if I could let others try it first. If it looked good I'd be an early user.

    Votes: 24 23.5%
  • I'd wait for substantial clinical evidence before I tried it.

    Votes: 12 11.8%
  • I'd want a clinical trial done first

    Votes: 10 9.8%

  • Total voters
    102

Issie

Well-Known Member
I considered that Issie...
But no it certainly wasn't detox. I started having the worst stomach pains ever after eating anything and than it just went straight downhill... I had basically only pain before that (alos insomnia, mild GI problems), and after I got a whole new list of symptoms: brainfog, much much much more pain, weakness, fatigue, photo sensitivity, not to mension the depression like going through hell. It didn't got better... I kept being vegan but it just got worse... I'm now for a while getting slowly better but I begun eating meat and eggs again, stopped going to the university and stopped working for total fully pacing, started taking lyrica (before, with the allodynina I simply couldn't be in the world, everything that touched me hurt so bad... I felt like I needed to be on a white endless space floating.), but I'm still a loot worse than I was before trying to go vegan. :\

I think somehow I developed a fruit malabsorption, cause now I can't get close to fruits. It messed something in my gut that triggered it all... Before I use to have GI problems and all but nothing I ate was such a big problem (I used to do the most crazy experiences in the kitchen hehe) and I used to drink a lot... it's pretty strange.

There was also the fact that I stopped taking Cymbalta at the same time (I was only taking 30mg, for 3-4 months and it was of no help at all), so I wondered if it could be some kind permanent/delayed damage of the Cymbalta or the Cymbalta withdrawl, but all doctors assure me that this was impossible. (I mean, I had a lot of withdrawl sympyoms but they went away before going downhill...)
Also have you looked into Mast Cell Activation Syndrome. Best way for me to describe what can happen is - not allergic to a lot but react to everything. Treating that has been one of my best helps.
 

Dee4dogs

Member
I'd lean towards taking it but I think a lot depends on what stage you are at. When I was worried about being permanenetly bedrideen and was sleeping most of the day I had nothing to lose, I'd have taken anything. When I had severe pain I took carbamazepine despite the side effects, and they did lessen with time. Once you recover a bit you have something to lose so its more of a baance against just how bad the side effects are and - very important this - would they stop if you stopped the drug? I'd risk pretty bad side effects if I could be sure they wouldn't last.
I agree with you 100% Tatt. My 1st diagnosis of CFS from EBV in 1989, 26 yrs in. Initial diagnosis of active EBV for 2 yrs was hell on earth, slept & existed, would have tried anything. Symptoms have waxed & waned since. Over the yrs additional diagnosis of Fibro, depression, arthritis, sleep apnea, herniated discs with radial tears in lower back & same in my neck. Now on Butran's patch to manage pain & just recently stopped working which was mostly from home. LDN worked for Fibro pain but not herniated disc pain. I keep up with my house & pets by pacing myself with an isolated existence. I'd lean towards taking it with the same concerns of long lasting sided effects. It's a progressive illness, where you are in your journey will have a lot to do with answering this question.
 

Folk

Well-Known Member
Also have you looked into Mast Cell Activation Syndrome. Best way for me to describe what can happen is - not allergic to a lot but react to everything. Treating that has been one of my best helps.
Yes Dr. Kaufman said that by my history he's pretty sure I have it. But it was just by an online conversation so it still informal, let's see when I get there.

How did you treat it? Anti histamines?
 

Issie

Well-Known Member
Yes Dr. Kaufman said that by my history he's pretty sure I have it. But it was just by an online conversation so it still informal, let's see when I get there.

How did you treat it? Anti histamines?
Yeah the more I thought about what you said and how you reacted I'd almost bet on it. It wasn't the diet. You probably have some mutations in your methylation and with the foods it started you not methylating properly and then the already underlying mast cell "stuff" kicked in. Working on the methylation and mast cell may do wonders for you. And then you can do my challenge to go vegan. We will compare notes.

Yes, there is a lot to learn about MCAS. There are three different histamine That you have to block and stabilize. Cort has been trying to get me to blog about it - but my life is consumed at the moment. That can also explain your pain and also the feelings you get with exercise. Exercise causes a degranulation of the mast cells. As does strong emotion (Including sex, anger and stress). So may be one of your puzzle pieces.

Issie
 

Folk

Well-Known Member
Yeah the more I thought about what you said and how you reacted I'd almost bet on it. It wasn't the diet. You probably have some mutations in your methylation and with the foods it started you not methylating properly and then the already underlying mast cell "stuff" kicked in. Working on the methylation and mast cell may do wonders for you. And then you can do my challenge to go vegan. We will compare notes.

Yes, there is a lot to learn about MCAS. There are three different histamine That you have to block and stabilize. Cort has been trying to get me to blog about it - but my life is consumed at the moment. That can also explain your pain and also the feelings you get with exercise. Exercise causes a degranulation of the mast cells. As does strong emotion (Including sex, anger and stress). So may be one of your puzzle pieces.

Issie
Sex has always been something that took almost all my pain away... (alcohool being the other, but now it's been a while without drinking)
When I don't use whips and handcuffs. :rolleyes:
 

Issie

Well-Known Member
Sex has always been something that took almost all my pain away... (alcohool being the other, but now it's been a while without drinking)
When I don't use whips and handcuffs. :rolleyes:
Hmmmm, not sure how to respond to your last comment. Alcohol can cause a mast cell response too. So few of us are able to drink. So may not be your issue.

Issie
 

Folk

Well-Known Member
Hmmmm, not sure how to respond to your last comment. Alcohol can cause a mast cell response too. So few of us are able to drink. So may not be your issue.

Issie
Yes that's the strange part... Alcohool normally took all my pain away. From time to time I got very very red (like much more than normal, all over my face and chest, like alergic response) and with a tachychardia. But not always.

If you do that blog on it, please let us know, I would like to read.
 

Tammy7

Well-Known Member
For me I would have to pass on any experimental drug.......mainly because I don't see any drug as a one size fits all ............... this disease is too complex and multifaceted for one drug to cure. I think it requires a more wholistic approach.
 
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Steve

Well-Known Member
The question you need to ask is, would you be in a phase 1, 2, or 3 trial? I'd be in phase 3 trial, testing if drug already suggested to be "safe" and effective in small group is effective in larger groups or various dosages. Phase 1...scary unless you are getting worse and have nothing to lose, as noted by someone above, unfortunately starting to sound familiar to those of us getting older. My son was in a Phase 3 pediatric dosing study for Remicade 20 years ago. Only four children were allowed in this major city;three dropped out due to side effects, my son stayed on it for ten years. Putting a kid in a clinical trial is a different level of anxiety and stress even.
 

Steve

Well-Known Member
You guys are overthinking this. Simple yes or no IMO. I'm over 20 years in, I have no life, no friends and I'm just getting worse inspite of the crap load of money I spend on meds and supplements. And I'm old. So I have zero to lose.
Jeez. But a lot of us are trending in those directions.
 

michele

Member
I have been sick with CFIDS/ME for 32 years. I have tried a lot of things that were "supposed" to help. None did, but some made me permanently worse and may have been the cause for me becoming disabled in a new way in addition to CFIDS/ME. Now I am 72, and don't want to make myself worse, or cause more disappointment and work for my husband, who is my caretaker. Maybe if I was younger and something very promising came along I would think differently. Overall I think I trusted doctors too much, when the truth was they really didn't know what they were doing and were essentially shooting in the dark. When we know what is truly causing our illness, then maybe a cure will come. That can't happen without research.
 

Grace2U

Active Member
I'm with Minx in that I've tried so many interventions and live such an isolated life....

Count me in......even after being #11 for the surgeon who implanted an experimental Cervical SCS which went horribly awry I have paid big time for that decision, yet in 1968 I was one of the 1st patients to undergo a pinned femur (10 inch rod implanted in the marrow of the bone via the hip and a year later removed) with great success! That experimental surgery enabled me to avoid a body cast and all that comes with being laid up for months.....moved forward with my young life within a few weeks :)

I am 62 now, trust my doctor, and am a 20 on the functionality scale. Just a couple months ago, during a very difficult dip, I was praying, yet again, to exit this planet..... Don't know why our lives are full of suffering, but I will see the bigger picture when I'm with The Lord!
 

Grace2U

Active Member
It's not an easy question. FDA approved Clinical Trials have strict guidelines to protect the welfare of patients: Clinical Trials and Human Subject Protection If patients meet all the criteria set out in the trial protocols which adhere to FDA guidelines then they can make the decision to enroll or not. For the patient it comes down to weighing options with the advice of physicians. A drug trial involving patients will have met certain criteria for safety in pre-clinical work before clinical work begins. Adverse events in clinical trials vary in severity depending on the condition being targeted and the patient must make the decision to enroll on the basis of options available.

With these factors in mind and given the many medical unknowns of ME/CFS and Fibromyalgia, the biological target of the trial, history of other treatments with the same target and the medical rationale for the trial would factor considerably in the decision.

When all the rational factors are taken into account and risk/reward is assessed the patient must have the conviction and courage to go ahead and enroll.

I have the courage. I would need the conviction, the threshold for which would be fairly low if I knew the risk was high but the trial would help significantly advance understanding of this terribly maddening, debilitating disease.

"JW" is this a link? Clinical Trials and Human Subject Protection Its not working for me. Help?
 

LewieP's Mummy

New Member
I'm in the Stage 1 UK trial at University College Hospital - looking to see if I have dodgy B Natural Killer Cellis in my blood. I'm having to wait until the results of the large scale Norwegian trial are announced before I know if I can be part of Stage 2, Rituximab. I'd try anything; 10 years with ME now, I'd love my life back, would not care what I had to take!
 

Grace2U

Active Member
I'm in the Stage 1 UK trial at University College Hospital - looking to see if I have dodgy B Natural Killer Cellis in my blood. I'm having to wait until the results of the large scale Norwegian trial are announced before I know if I can be part of Stage 2, Rituximab. I'd try anything; 10 years with ME now, I'd love my life back, would not care what I had to take!

Please keep us posted "LewieP'sMummy". I hope you get good days ahead :)
 

corinne

Member
Re the poll...
Honestly I think most of us have already tried off-label stuff, drugs we could get and self-treat with, things we just took on a whim, or experimented with stuff we already knew could hurt us. Most of us are desperate...plain out desperate. I have already taken black-box antivirals, IV mega dose steroids, and stuff I can't even remember at this point. I would not even hesitate to take something they said could help!
 

Grace2U

Active Member
You sound like some who have POTS along with gastropherisis. My sis figured out she is fructose intolerant. And I figured out with 23&me that I have issues with sulfur type foods. I had to totally lay off them until I worked on my methylation mutations. Now I can eat the foods, but not take concentrated supplements that are sulfur based. So maybe something like that.

Sorry you had to stop your studies and lay low. Maybe you will find something that will help SOON!!!! We are all looking.

Not sure diet was your cause. Being vegan has to be thought out carefully or you can imbalance some things. Did you supplement B12, iodine and Vit D? Those things my doc says we must do as vegans.

Hang tight. Hope is still alive.

Issie
Thank you Issie :) Methylation process? I too have the 23andMe info....did you have the results interpreted by someone? I have been able to garner very little understanding as to how to apply the results to "real life" . If anyone has any suggestions about this please relay :)

I was diagnosed with Gastroparesis back in 2007 which continued through 2010. Botox injections via endoscopy every 8-10 months alleviated the most horrible symptoms I've ever lived with :( Went from 5'6" 154lbs to 107lbs within 5 months. I am so very thankful I'm not experiencing those years again.

My Neuro Doc doesn't think it was GasPar..... I failed to ask him if not, what? Putting it on my list of ??? to ask him next month. Maybe it was this Autonomic Dysfunction I've just recently been diagnosed with showing itself even then or the Mast cell thing you brought up? Again, thanks for your insight Issie :)
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Re the poll...
Honestly I think most of us have already tried off-label stuff, drugs we could get and self-treat with, things we just took on a whim, or experimented with stuff we already knew could hurt us. Most of us are desperate...plain out desperate. I have already taken black-box antivirals, IV mega dose steroids, and stuff I can't even remember at this point. I would not even hesitate to take something they said could help!
Well said, Corinne.
I guess most of us are continual guinea pigs..and are used to that.
I remember a course of hydrogen peroxide IV's that my doctor at the time said was the last-ditch effort...Later I was told they were quite controversial. As per my usual response at the time - I noticed nothing at all!
 

Abrin

Well-Known Member
At this point, I would stand on my head and sing I am a little teapot backwards if I was convinced it would help me. ;)
 

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