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

[Cort]

Here's the situation. It's an experimental drug. Early reports are very promising - it could be a legitimate breakthrough, but the drug also has potentially significant side effects - a dark side. You're give the opportunity to test it out - for free. You trust the doctor providing it but he/she emphasizes that nobody really knows what will happen. It could produce a breakthrough or breakdown or do nothing. What do you do?

 

[MontanaNAR]

I'd like to know if the experimental drug is treating only symptoms... or is it treating the root cause of the disease?

Big Pharma makes a lot of money on treating symptoms and has virtually no incentives for "curing" a disease.

 

[Cort]

I'd like to know if the experimental drug is treating only symptoms... or is it treating the root cause of the disease?

Big Pharma makes a lot of money on treating symptoms and has virtually no incentives for "curing" a disease.

I was going to add an "I need more information" answer but I figured too many people would check it. (I would) Let's say the drug has true breakthrough potential - some people are being cured - BUT -some information (its makeup perhaps) suggests there could be a dark side.

 

[J William M Tweedie]

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.

 

[Tina]

Here's the situation. It's an experimental drug. Early reports are very promising - it could be a legitimate breakthrough, but the drug also has potentially significant side effects - a dark side. You're give the opportunity to test it out - for free. You trust the doctor providing it but he/she emphasizes that nobody really knows what will happen. It could produce a breakthrough or breakdown or do nothing. What do you do?

I'm 8 years in and nothing has been offered. Nothing. I live somewhere between being housebound and existing. Yeah, I would seriously consider taking an experimental drug.

 

[TigerLilea]

A lot would depend on what the drug was. Is it a new unproven drug, or an older drug being used off label? Just how serious are the side-effects? How long would we be on the drug for? Two weeks? Two months? Years? I can put up with not so serious side-effects for the short term, but I don't know if I would be willing to do so for months or years.

 

[Katie]

I think because of my medical background (RN) I would be hesitant to dive into an experimental med without some knowledge of benefits/risk factors. I would hate to get worse as life is tough enough now, but if early indications were the experimental med was positive then yes, I'd be on-board. I have tried other meds like LDN and others that unfortunately made me ten times worse. Strange how the body reacts. Not one med works for all it seems.

 

[Telula]

I have taken it. It was an experimental treatment for pain given through IVs. It started with one day to test it out (no adverse reactions etc) followed by one week of treatments 6+ hours of IV a day. It was honestly one of the worst experiences I've had and not because of the side effects of which I had very little but more because of the continued pain I felt plus extra pain from both the IVs and the UTI infection I got from the first day, the humiliation from the staff and the sheer isolation of the treatment.

First of all they wouldn't let my family into the room (which I think was the surgery recovery section, super fun hearing people moaning in pain but not being able to see them because I'm curtained off. They took my glasses because and I quote "I could use them as a weapon" I suppose that's if I started hallucinating which never happened. I had very few distractions (no books, my portable game system but that didn't last long, an iPad with a movie on it before the battery would die). I wasn't allowed to walk around or get up or even be in the bathroom without assistance (I was barely feeling the ketamine even at high doses). I was talked down to especially after they looked at my chart and I assume saw what they were treating me for. I had to ask for a catheter because I can't go to the bathroom with someone watching.

The worst part is the ketamine didn't do squat and I was stuck with no food, isolated, scared, judged, and most of all in horrendous pain that wouldn't stop no matter the dose of ketamine and with very little to distract me (normally I have TV and games and other things to try to take my mind off some of the pain...really it's to stop me from going completely insane with the amount of pain I'm in).

I know it works for some people but I don't think it's the end all be all of pain meds. And I'm sure other doctors' offices are better than my experience but I also know we've all had experiences with judgemental and disbelieving medical staff so if you do find a place that will try it with you make sure they treat you well or have an advocate there to do it for you.

 

[Ruth Efird]

I already have multiple chemical and food sensitivities. I have learned to live around these problems. I am not bedridden every day, and have learned to pace myself. When I have taken drugs in the past my liver enzymes have risen, and my adrenal fatigue has worsened. I would wait until I knew much more about the drug, because short term gains could have long term consequences, like those who take chemo and radiation.

 

[Cort]

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.

I got it!
I think that's a good choice! 0 (that is another great smiley I must say - another first time use! )
I hope something shows up.

 

[Cort]

I have taken it. It was an experimental treatment for pain given through IVs. It started with one day to test it out (no adverse reactions etc) followed by one week of treatments 6+ hours of IV a day. It was honestly one of the worst experiences I've had and not because of the side effects of which I had very little but more because of the continued pain I felt plus extra pain from both the IVs and the UTI infection I got from the first day, the humiliation from the staff and the sheer isolation of the treatment.

First of all they wouldn't let my family into the room (which I think was the surgery recovery section, super fun hearing people moaning in pain but not being able to see them because I'm curtained off. They took my glasses because and I quote "I could use them as a weapon" I suppose that's if I started hallucinating which never happened. I had very few distractions (no books, my portable game system but that didn't last long, an iPad with a movie on it before the battery would die). I wasn't allowed to walk around or get up or even be in the bathroom without assistance (I was barely feeling the ketamine even at high doses). I was talked down to especially after they looked at my chart and I assume saw what they were treating me for. I had to ask for a catheter because I can't go to the bathroom with someone watching.

The worst part is the ketamine didn't do squat and I was stuck with no food, isolated, scared, judged, and most of all in horrendous pain that wouldn't stop no matter the dose of ketamine and with very little to distract me (normally I have TV and games and other things to try to take my mind off some of the pain...really it's to stop me from going completely insane with the amount of pain I'm in).

I know it works for some people but I don't think it's the end all be all of pain meds. And I'm sure other doctors' offices are better than my experience but I also know we've all had experiences with judgemental and disbelieving medical staff so if you do find a place that will try it with you make sure they treat you well or have an advocate there to do it for you.

Sounds like a completely bad experience Telula!
Why don't they make hospitals more comforting?
It's not like people are in pain or something....I wonder how they would feel stuck in chair for hours and hours with nothing to do ???

 

[Cort]

I think because of my medical background (RN) I would be hesitant to dive into an experimental med without some knowledge of benefits/risk factors. I would hate to get worse as life is tough enough now, but if early indications were the experimental med was positive then yes, I'd be on-board. I have tried other meds like LDN and others that unfortunately made me ten times worse. Strange how the body reacts. Not one med works for all it seems.

It's completely weird how differently the body works . It's not that some things don't work for people - sometimes the same thing that does great for one person makes the other person worse....

 

[Cort]

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.

My guess is that one's trust with the doctor would be very important. Of course, as somebody pointed out the degree of the possible side effects would be important as well. Could it kill me? That would be a no-go for me...Beat me up badly temporarily - that would be a go...Beat up for a long period of time - that would probably be a no-go. Of course, if it's a really new drug you probably wouldn't really be clear about of these...

 

[goldenapple]

I would take it in a heart beat. I just read the ketamine article and immediately contacted the closed clinic offering it. Medicaid won't cover it, and I'm only able to work about 10-15 hours a week so I probably can't afford it more than once, but I will still try it. I'd love to get to the "root" of the problem, but realistically if there was something that could help me get through the day I would try it.
If there were something that could bring me back to functional I would do (almost) anything. I agree with Minx, I'd even risk death becuase death seems so much better than what I'm "living" through.

 

[TigerLilea]

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.

I am not over thinking this. I gave it a lot of thought because I do NOT want to lose anymore of my time to sickness than I already have. I would rather have my limited energy and be able to accomplish small tasks each day than end up bedridden because of taking an experimental drug that made me worse off than I already was.

 

[Cort]

I am not over thinking this. I gave it a lot of thought because I do NOT want to lose anymore of my time to sickness than I already have. I would rather have my limited energy and be able to accomplish small tasks each day than end up bedridden because of taking an experimental drug that made me worse off than I already was.

I'm in the more don't want to get worse group - I know how bad this can get - and I definitely don't want that. I don't know how I would handle being bedridden with my chemical sensitivities for one thing...

If I got really worse, though, I imagine I would go into the "try anything" group.

 

[Folk]

That's crazy... I came to the forum just to create this EXACT same thread hehe
But I was thinking more about Rituximab than Ketamine.

Anyway, my answer is both I'd learn towards taking it and I would like to see other taking first.

I think there's two reasons people might not take some experimental drug: Money and the risk of getting worse

But I'm 100% sure if Rituximab was free now, a huge amount of patients would be taking it like water.
Rituximab is supposed to be very risky about it's side effects but funnily enough I've never heard or read any history of people with ME getting worse with the drug. I've read some that did nothing, some that got full remission and other improvments but none of them felt significantlly worse. (anyone know contrary info?)
Lately I've been thinking a lot about giving it a try.

About Ketamine I remember reading about it when I was experimenting drugs as a teenager and it was listed as the worse bad trip ever. The so called K-Hole. I decided it was one of the drugs I would never try (along with crack lol) haha now it became a medicine for my illness? Talk about the world spinning around.

 

[Cort]

That's crazy... I came to the forum just to create this EXACT same thread hehe
But I was thinking more about Rituximab than Ketamine.

Anyway, my answer is both I'd learn towards taking it and I would like to see other taking first.

I think there's two reasons people might not take some experimental drug: Money and the risk of getting worse

But I'm 100% sure if Rituximab was free now, a huge amount of patients would be taking it like water.
Rituximab is supposed to be very risky about it's side effects but funnily enough I've never heard or read any history of people with ME getting worse with the drug. I've read some that did nothing, some that got full remission and other improvments but none of them felt significantlly worse. (anyone know contrary info?)
Lately I've been thinking a lot about giving it a try.

About Ketamine I remember reading about it when I was experimenting drugs as a teenager and it was listed as the worse bad trip ever. The so called K-Hole. I decided it was one of the drugs I would never try (along with crack lol) haha now it became a medicine for my illness? Talk about the world spinning around.

No kidding.

At the doses they're doing with chronic pain it's not supposed to cause hallucinations by the way.

I would try Ketamine before Rituximab - just because I think it's safer in the short term....

 

[Cort]

I would like to know how it works first and then research it abit more.

my thoughts on rituximab is that it worries me knocking out apart of the immune system when ones nk function and possibly cd8 t cells not functioning. If one has alot of chronic infections i think it could make things worse.

if one has autoimmune symptoms with other autoimmune abnormalities like ana and inflammatory markers but little evidence of infections than i think they would be better suited to rituximab .

we are all interested to see the rituximab study results.

Which would you try first - Rituximab or Ketamine?

 

[Angie]

I'm 8 years in and nothing has been offered. Nothing. I live somewhere between being housebound and existing. Yeah, I would seriously consider taking an experimental drug.

I've been doing this nearly as long as you and I also exist between being housebound and existing. I'm desperate enough to be a guinea pig because honestly it doesn't get much worse than this.