Valve Disease and Stimulant Use

[PairoDocs]

Hey, gang!
Anyone out there concerned about the possible link between use of stimulants, such as Ritalin, and valvular disease of the heart? A statement was recently released by the FDA to this effect. We all know about the Phen/fen debacle. Methamphetamine, cocaine, and amphetamine ABUSE are associated with all kinds of cardiac disease. Even ephedra! Some articles have been published which state that there MAY be increased valvular disease with Ritalin, Focalin, and Adderall. The articles spent a lot of time explaining that children need to have a thorough cardiac evaluation prior to stimulant use. There was a lot of discussion re: EKG vs echo or both. It means increasing medical costs to parents for sure. US News and World Report published some people's responses. One guy stated that his quality of life would be nil without it, and he would use it even if there were a 25% chance he would grow an extra head.

Since my husband has been using Ritalin for much of his life (and was able to get a PhD with its help), we both wondered if there may be a connection. The surgeon had no explanation for Chris' problem with ruptured chordae and subsequent mitral valve failure. No CAD, no rheumatic disease, nuthin'.
Whaddya think?

Spring is Bustin' Out All Over in Idaho,
-Laura

 

[lynnconnolly]

This is probably not especially relevant, but my troubles have been caused by Cabergoline - Dostinex in the USA - which is also used as by body builders and those looking for heightened sexual arousal/prolonged ability. It's been compared to MDMA in it's affect and effect.

I was given it for restless legs syndrome I might add - nothing else

 

[briansmom]

Interesting. We still don't know why Brian dissected, but he was on ritalin and adderall from about age 7. He obviously can't take it anymore and he really misses it and wishes he still had it.

 

[Freddie]

I'm starting to believe that it was Phen/fen that caused my Mitral valve to blow.
In the early 90's I was taking over the counter diet pills that contained Phen/fen, Thought it was a good thing. Yea right.

I too, had no history of heart problems, no rheumatic fever (although doctors say other wise now) and no strep throat.

IMPO, I think it was that stimulant that caused my problems.

 

[marie]

I'm starting to believe that it was Phen/fen that caused my Mitral valve to blow.
In the early 90's I was taking over the counter diet pills that contained Phen/fen, Thought it was a good thing. Yea right.

I too, had no history of heart problems, no rheumatic fever (although doctors say other wise now) and no strep throat.

IMPO, I think it was that stimulant that caused my problems.

Ditto
No history of heart problems, no rheumatic fever and no strep throat
Earline

 

[PairoDocs]

Rightfully so, the AHA, is recommending screening for kids about to take stimulants such as Ritalin.
There is a book about changing your (or child's) diet - forget who put this out - supposed to help with ADHD.

Yeah, we've been doing the diet thing since we got married, since Chris is already gluten intolerant. We also limit his dairy somewhat, but don't eliminate it. The diet is gluten-free/ casein free, in case you want to know, with no artificial preservatives, MSG, and only certain natural additives/colorings allowed. It also limits fats and sugars, so it's a pretty good cardiac diet, as well, if anyone is interested. There are lots of whole grains and fiber, too.

I don't know if this is worth pursuing. There is probably someone interested in a class-action lawsuit, but I just want more info. Part of me wants to "just get over it", and part of me wants to make sure that no one has to go through all that we went through. As a physician, I have prescribed stimulants...not in a cavalier manner, but maybe didn't do all I should have done or counseled parents properly.
By the way, my husband informs me that I am in error. He took Ritalin in elementary school and after graduate school, not in graduate school. He's convinced that Cylert "almost ruined me". He is also much more sensitive in the extended-release meds, and still takes limited amounts of short-acting Ritalin because he really needs it. He doesn't like to do it, but it's a choice between heart rate increases due to medication and increases due to anxiety.

I'm beginning to think that there needs to be a new medical specialty-perhaps a psychiatric cardiologist, or some such. No cardiologist seems to have much info regarding interactions, etc between cardiac meds and psych meds. We are, as recommended, our own advocates, and inform the cardiologist of interactions (such as Geodon and digoxin) as we find them. The numbers of folks using psychoactive medications is staggering, to say the least, and with the increasing numbers of folks with heart disease...well. I can see the writing on the wall.

Another Beautiful Day in Idaho,
-Laura

By the way, I'm from Chicago, but Idaho is sure a beautiful state. My husband would probably love it if someone wanted to visit.

 

[PairoDocs]

This time it's Chris posting. I just wanted to mention that I am pretty frustrated with the pharmaceutical industry in general. My own Ph.D. was in bio-inorganic analogues of amino acids, the official major being inorganic chemistry with a minor in biochemistry. I realize that many biological systems use similar substrates (molecules that carry information from one body system to another), but they are not identical in most cases. My point is a lot of conditions such as ADHD, depression, bipolar disorder, psychosis, and other brain-related disorders are brain-only involved. I know, from my personal immersion in the relevant research in the early 1990s and late 1980s, that there are inexpensive ways of isolating chemical effects to only work on the brain, but I've been out of the field since 1996 so I no longer access this information. The problem is specificity--a problem the pharmaceutical industry is well aware of, but chooses to ignore for more immediate profits.

The stimulants that are marketed, that also seem to affect the heart and other systems, are out there only because they're the most profitable and were discovered first. The others aren't being manufactured because it's just simply not 'convenient' to do so. They have been found; they know how to make them. Consider the actual cure for genital herpes has been known for over ten years, but companies that advertise Valtrex and the like have managed to keep the cure buried in favor of 'treatments' that leave the underlying herpes virus infection in place. This mentality also buried the 300 mile range electric car battery (these persons gradually bought up majority shares of the manufacturer then shut the place down--so as to perpetuate gasoline guzzling car usage to the bitter end). Of course, when the need is dire, 'miraculously' this inexpensive long-range electric car will reappear just in time. I could go on forever about our 50,000 year supply of coal, etc., but I won't here.

Yes, I actually considered working for a few of these companies, but having my research muzzled for the sake of immediate profit offended me so much I decided to never apply to any of these places--yes I knew this to be true from ex-pharmaceutical company chemists who had become post-docs or professors for much lower salaries. They would rather be poor and live with peace in their hearts than be relatively wealthy with the guilt. You either have to live with the knowledge that your research is 'dead' while many people are also really dead from your work not being used, or never get in the field to begin with. It may have been selfish of me to stay away, but my Asperger's syndrome, while making me a bit socially awkward, also makes me profoundly aware of right and wrong. I'd rather stand for what is right, even if I can never find a job again, than take home what I could only see as blood money for standing idle while my findings were used for evil or not at all. Frankly, I just couldn't live with the stress and guilt.

Now, however, I may find the courage to resume research, even if it's to help expose the dangerous corner cutting taken by pharmaceutical companies for the sake of profit. Heart medication shouldn't cause depression (Toprol, and the generic metoporal even worse) or partial blindness, or other mental symptoms. It should treat the heart--alone! Yes, I KNOW it's possible to isolate the heart from other systems--yes it takes work, work pharmaceutical companies are unwilling to fund, but it is possible. It takes time and money, but the net result will be improvement of the human condition. I'd like a nice 60 bpm resting pulse and feel absolutely no other effects of my medication, but instead I have to deal with 100 bpm with side-effects. That shouldn't happen, but it does. It's true that many people find a lot of these beta-blockers and calcium channel blockers to be perfect treatments for their hearts with no apparent side-effects, and I'm happy for them, but even the small percentage with the severe side-effects should not have them, either.

As for the stimulant question, it will take time and money, but if it takes a class-action lawsuit to make the pharmaceutical industry wake up and do it right (not just right for the stock-holders), I'm willing to at least have an open mind about getting involved. I need the mind-clearing effects of Ritalin (methylphenidate generic in my case), but not at the price of ruining my heart, or ruining the hearts of my fellow ADHD sufferers. Clear, organized brain, with the ability to make decisions and choose to do the more important things to completion, YES! Pounding heart ripping its valves apart, NO! Antidepressants (suffice it to say I could triple the length of this post on that subject) need a lot more specificity, too.

Please forgive the diatribe on this subject, but this hits too close to home for me. I'm all for medications that are done right, and am willing to place my life's continuity in their care. However, if medications are done wrong, I just won't stand by and put up with it. I'll say what I must--perhaps the right person(s) who have the power to change things may read a little of this and may start to make some of these necessary changes.

It might be interesting to find out how many of us who subscribe here with valve repairs and replacements at relatively young ages took stimulants for ADHD at some point (or Phen-Fen for obesity). Maybe a poll on the subject?

Thanks for reading this,

Chris

 

[lynnconnolly]

There are people who are only now discovering that they have primary pulmonary hypertension after taking phen-fen in the 90's and Marie and Freddie, I'd bet anything it's what's caused your problems, and if I were you, I'd look into the legal issue.

The incidence of valvular disease and PH is staggering with phen-fen, as it is with cabergoline, pergolide and other ergot derived drugs. It can occur even if you only had it very briefly. With cabergoline (dostinex) it's had other devastating effects including compulsive gambling and hypersexuality. People have lost their homes and jobs, stolen and committed terrible acts that they would never had done if they hadn't had these drugs.

In the US and Australia, class-actions have been going on for years, and just recently there've been a few started in the UK too, one of which includes me. Chris, I very much admire your ethics, but sadly, most pharmaceutical companies don't share such moral fortitude, as you found out a long time ago. I was astounded when I began researching cabergoline at how little testing and research is actually carried out on some drugs, and the fact that when it does uncover something potentially devastating, it's conveniently hidden or ignored.

In the UK, I suspect I am amongst the first wave of people who have been damaged by cabergoline - or at least, among the first to recognise the link - so I think as with phen-fen, in the next 10 years we are going to find more and more people coming forward with these illnesses. I think there are most likely dozens of people here in the UK who have either died or are living with heart disease, never knowing it was cabergoline that made them ill.

I'm doing all I can here to make it public knowledge. I've been in touch with dozens of websites, support groups, nhs organisations etc., to try to publicise the effects of this drug. I've done an interview and story with one of our major daily newspapers for this purpose too. It should be out in a week or so.

I also believe that a few more years is going to show long-term, nasty effects of ritalin and similar drugs. It has astounded me that in many of the reports, studies and so-called pharmacovigilance documents I've read that we, the consumers, are basically lab rats. You wouldn't believe how often this term comes up - 'long-term effects of 'x' are still to be established'. In other words, 'lets see what happens once a few thousand people have taken it for a few years.'

I'm horrified how some pharmaceutical companies are quite happy to knowingly market such dangerous drugs. It has truly shocked me. I guess it was pretty naive, but I always believed that no company would allow a dangerous drug onto the market if they knew it was harmful. How dumb was I! The only issue to them is profit and I believe their logos should include this...

'In testing, we found that a healthy profit margin was maintained throughout.
No money was harmed in the production of this drug'

 

[lynnconnolly]

Chris, I think a poll would be a really good idea... but I have no clue how to start one Do you?

 

[Rick]

Prozac

Prozac

I also took Prozac for years. Started at 17 ans was first diagnosed with AI in 1990. Anyone know if there is a link between Prozac and valvular disease?

Oaktree, I have a similar concern.

Rick

 

[PairoDocs]

In the US, cabergoline is used to treat exclusively hyperprolactinemic disorders, such as those caused by pituitary tumors. It is one of only two medications used for this purpose, and bromocriptine doesn't have a great side effect profile, either. Pituitary adenomas are not uncommon; fortunately most are microadenomas, but this a major cause of infertility, menstrual problems, and galactorrhea. There are a number of women who cannot get pregnant without one or the other, but I can tell you that people find the cabergoline much easier to take. Pergolide is used to treat Parkinson's disease, but I think it may have been pulled from the market in the US. Both pergolide and cabergoline list valvulopathy as a rare adverse reaction, and are to be used with extreme caution in those with fibrosis, hypertension, or heart disease. I do not prescribe these medications to people with these problems, and there are other meds we can use for restless legs. I would not like to throw out the baby with the bath water, so to speak. These medications definitely have a place, but need to be used with caution and informed consent.

As for phen/fen, I admit that I took it for a little over a month. I lost a lot of weight, but couldn't tolerate the side effects, so I stopped. The problem is that people with severe morbid obesity also suffer from increased problems with pulmonary fibrosis, cardiac disease, and valvular disease of the heart just from the obesity. I developed mild mitral regurgitation, tricuspid regurgitation, diastolic dysfunction, left ventricular hypertrophy, right atrial enlargement, left atrial enlargement, and moderate pulmonary hypertension as a result of obesity. This is very typical for morbid obesity. How do I know it wasn't the phen-fen? In the time since the last echo, I have lost 120 pounds, and regurgitation went to trivial in both valves, and the other problems resolved completely (except left atrial enlargement, and that is better). Thus the compounding factors.

Phentermine is still widely available, as it seems the problem was the fenfluramine, but it still is not recommended for long-term use due to risk of pulmonary fibrosis. Those who use it long-term need to be checking their pulmonary status regularly, including pulmonary function tests.

Amiodarone has pulmonary fibrosis as a major side effect, yet it saves many lives.

Lest anyone mistake me-I am not a fan of the pharmaceutical companies. Too many meds get fast-tracked and are not properly monitored. I get angry when I read about suppression of research that shows harm. I think medication costs way too much. There is no really good recall system. But people are to blame also, including me. Everyone wants a "quick fix", and push the FDA to approve medications without proper procedure. I don't know how to solve the problem.

Cooling off in Idaho,
-Laura

 

[lynnconnolly]

How do I know it wasn't the phen-fen? In the time since the last echo, I have lost 120 pounds, and regurgitation went to trivial in both valves, and the other problems resolved completely (except left atrial enlargement, and that is better). Thus the compounding factors

Hi Laura and Chris, after I stopped taking Cabergoline, my problems improved also, so I do wonder if it was your weight loss that induced the improvement or the stopping of the drug? I guess that depends on when you stopped it, as in, was it right after/shortly before your original diagnosis?

I could of course be totally wrong about this with regard to your situation, but it's very common with these types of drugs that some improvement occurs spontaneously once it's stopped. With me, the original diagnosis was that both my mitral and aortic valves needed replacing, and I had severe secondary PH. Surgery was needed fairly urgently but I was so unwell, there was a good chance I may not have survived the surgery at that time, so it was put on hold for a couple of months. Then, following echos showed enough improvement to the regurg in both valves that it's now not urgent at all. It's now moderate where it was severe.

It just horrifies me that these drugs can cause so many problems and I feel very strongly that the drug companies should be held to account for what they've done. That can only be achieved by hitting them in their corporate pockets and that can only be achieved by people who've been harmed issuing litigation. I know you don't know me, but I've always hated this litigatious society we live in - I've always been scathing about people suing for stupid things - but this I feel very strongly about because I truly believe the only way these companies will stop releasing drugs too early is if they are worried about being sued.

You wouldn't believe the resistance I've met in trying to publicise the effects of Cabergoline, and from the most unlikely quarters usually. Anyway, as I say, I could be totally wrong about this in your case, but just thought I'd mention it.

All the best, Lynn

 

[kfay]

My cardiologist at the Mayo Clinic, Dr. Heidi Connolly, was the first to really discover the link between phen fen and heart valve disease. Here is a link to one of many about how she it first came to light that there was indeed a problem. She is VERY good and gets right to the point.

http://www.cnn.com/HEALTH/9707/08/fen.phen.pm/

Kim

 

[MikeHeim]

I have feelings on this issue that are somewhat different than others. I am not responding to anyone directly, but will address things seen in posts above. It seems to me that many people want it both ways with regards to drugs and drug development. For instance, if a company were to develop a drug that slowed down Alzheimer?s deterioration, how long should they continue to go through clinical trials and experimentation to determine if other side effects occur? 10 years? 15 years? During that time period, millions of people who could have benefited from the drug would needlessly suffer because of the extended timeline. When testing out a new drug, virtually every possible side effect must be studied, and to do so takes many years and millions of dollars. Of course, this testing is absolutely necessary, yet people complain that their drugs cost too much. Why do people think that is? Companies are NOT trying to develop and manufacture drugs that are unsafe. One bad drug can (and has) destroyed an entire company. Why would they want to take that risk? By far, the vast majority of drug manufacturers are attempting to develop drugs that solve a specific problem and have no side effects. Believe it or not, such a plan is not always possible. As our society becomes more and more litigious, it only serves to stifle potential innovation that could have sweeping benefits for us all. Now, if a company is found to have discovered bad clinical data and covered it up to protect their product, they need to be fined and sued out of existence (which is what happens). However, this is extremely uncommon. Far more common is people finding obscure side effects many years after a product has been released, and then suing the company as if (for example) they should have known what 25 years of taking a particular drug would do to someone?s vision or liver function. If people want drugs to be tested for every side effect for as long as someone could take the product, we wouldn?t have to worry about the safety of new drugs being released, because there wouldn?t be any. Nor would there be anyone trying to make them.

 

[lynnconnolly]

Mike, I agree with you on many points, however, I do have documents from the testing and release onto the market of this particular drug that indicates that they did know it could cause cardio-pulmonary side effects but buried it under the caveat that in their opinion, and based on appallingly inadequate clinical trials, the risk of that outweighed the potential for patient benefit.

They furthermore saw fit to withold that information from those of us who would not have touched it with a bargepole had we known. However, let's assume they really didnt believe it could have such devastating side-effects in 30% of those taking it. Fine, that's all good... until they are selling it for restless leg syndrome. Fine, when it's used by Parkinson's patients who have such poor quality of life that the poor souls' benefit from the drug outweighs the risk. How though can they justify not telling people like me of the dangers of it when I was taking it for what was a very, very minor complaint? It's analogous of chemotherapy for heat rash in my opinion.

That's what annoys me.

Obviously I understand the need for the expedited release of a drug when it is for a serious disease like Alzheimer's and yes, I think anyone with such a crippling illness would say they accept the risks of inadequate long-term testing, but to have my heart destroyed because I had an annoying twitch at night and wasn't told that to cure it, I'd have to sacrifice my heart and lungs? No, sorry I can't accept that.

The drug company in questino knew from the get-go what this drug could do. And even if we accept they didn't, from 1996, Professor Bryan Roth has been telling them what it could do. From 2002, studies in Japan showed them what it could do. In January 2007, the biggest study of them all showed what it could do. Their patient information leaflet in the box of tablets was updated to include the risk of valvular damage in November 2007. So why then was that? A responsible company who wanted to promote only the health of their consumers would have pulled it for this use long ago. Eli-Lilly did just that with Pergolide.

This company didn't. They kept on selling it with inadequate warnings to the bitter end. They only managed to include the information that it caused compulsive gambling after overwhelming evidence from so many pharmacovigilance agencies that they had no choice.

They didn't update their prescriber or patient information for all those years. Years when they had the information of what it was doing to people. And why? Money. People would have stopped taking it in droves, just like they did with Pergolide. Eli-Lilly didn't have to pull it, and it was the responsible thing to do, however sales were down the toilet by then anyway.

I would be first in the queue to try experimental drugs if I had a terminal and horrendous illness like cancer or Alzheimer's, but I'd know what risks I was taking. I was not given the luxury of making the choice between a few disturbed nights sleep and heart and lung disease. Had I been told, had my doctor been told, I would not be here posting this today.

I appreciate your opinion and open debate with differing points of view is nothing but good. After all, that's what wars are fought for, but as much as I believe you are entitled to your opinion, I cannot share your belief that pharmaceutical giants are benevolent and altruistic. I have good reason to know that in at least one case, that is not true. I'm sure in many, many cases the individuals who do research and create drugs are indeed worthy of our thanks and many thousands of people are indebted to them. I don't wish to generically blame every person or even every company, but when accountants and lawyers are the ones with sway in any business, then altruism and benevolence and all good intentions mean nothing.

My life has been turned upside down, and inside out because a collection of corporate 'someones', somewhere decided that to inform consumers equated to losing them. I'm paying the price for their profit margin. This company hid this information. They did not respond to dozens of reports and studies showing that valvular disease was affecting over 30% of people taking their drug. They didn't respond or acknowledge it because they wanted it to sell to the widest market possible. If they had consumers best interests at heart, they'd have said 'right ok, this is what may happen if you take it, but if your illness is so bad, you might want to take it anyway'. I don't doubt it has clinical efficacy in many illnesses, but not in restless leg syndrome. As I said, I wasn't given the choice. I wasn't told and did not know what this drug could do to me.

Like a street trader selling cheap, fake imports, this company sacrificed my health for their profit. Yes, I intend to hit back in the only way that will hurt them; financial loss. If this makes other companies wary of not being honest and truthful about the potential for damage their product can do, then that's a good thing. I'm not seeking a utopian world where every drug is 100% safe. I realise side-effects can crop up post-marketing. These side-effects were known pre-marketing. What I am seeking is the right to be informed of the potential of dangerous side-effects so that I can make an informed decision. This was denied me in this case and I want to do everything in my power to see it doesn't happen to anyone else.

Lynn

 

[PairoDocs]

Lynn,
I had some of those problems before using phen-fen. Second echo done many years after phen-fen. Improvement after weight loss, definitely.
Thanks for your insights, though. I wish I could respond more fully, but the kids beckon.

A Bit Chilly in Idaho,
-Laura

 

[lynnconnolly]

No worries Laura My kids are all grown up now but they still take up most of my time! Thanks for letting me know.

All the best
Lynn

 

[MikeHeim]

Lynn-
If things are as you describe with the particular drug you took (and I have absolutely no reason to believe they are not), I support your fight whole-heartedly and wish you nothing but the best going forward. I was more speaking to the original premise of the thread in that if A equals B, then C will happen. Basically the assertion that if I can't find any other reason for my heart disease, I'm going to blame a drug I took - regardless as to whether there is any scientific evidence to back me up. I feel that just throwing out allegations such as that EXTREMELY dangerous and is the first step down the road to explaining why we live in such a litigious society.

 

[MikeHeim]

Oaktree and all-
If I read more into people's posts than I should have, I do apologize. One of the great deficincies of e-mails or message boards such as this one is that written words often leave room for interpretation, and therefore the potential for a wrong interpretation. Looking back at the first couple posts on this subject, I do feel like I jumped to the next possible conclusion without anyone actually saying it - something I should not have done.

 

[lynnconnolly]

Hi Mike and Oaktree... and everyone I see where you're coming from Mike, but I think Oak is right. It's really not that I'm stumbling blindly around looking for someone/something to blame per se, as I'm sure nobody is, but the fact is, if someone called Tom ran me down in a car, I wouldn't stand around and ask whoduunit. I'd know it was Tom.

I feel the same about this drug and others such as phen-fen. Shortly before phen-fen got pulled from the market, lots of unscrupulous business people bought it in huge quantities - because of its effect of rapid weight loss - knowing they could 'shift' it rapidly before it was taken off the market. This fact is well documented if you'd like to check. They did this despite knowing how dangerous it was and the companies who sold it to them knew likewise. Lots of people made a lot of money just before phen-fen got pulled.

My feeling remains that nobody has the right to play Russian roulette with my life - and especially when I dont even know I'm playing. If they do, then they must pay for it. In this case, that paying is literal as it's the only way to hit back. My asking others if drugs could have damaged them is because we all know how devastating these illnesses are and for those who are sitting wondering what could have done this to them - otherwise fit and healthy people - the fact is, it could be a drug they've taken which was on the market despite some people knowing it was dangerous.

I'm not the sort of person who sues for nothing. I was working in a shop here a few years ago and was held up by two guys with knives who proceeded to rob the till. Almost everyone I met said I should sue my employer because I was on my own in the shop at the time and there was no security camera even. I didn't sue, and that's because that was just crap luck. I was in the wrong place at the wrong time. My employer hadn't had a letter forewarning it and decided to leave me in there anyway. See what I mean? This isn't bad luck. This is negligence on the part of the drug company. They must pay for the fact that they did not inform consumers and doctors of the potential for harm when they knew it all along.

I don't think people should be sacrificed to the advancement of drug research without being given all the facts. I certainly don't hold with your statement that 'I feel that just throwing out allegations such as that EXTREMELY dangerous and is the first step down the road to explaining why we live in such a litigious society.'

I assure you that this was by no means 'throwing out' anything. I have done extensive research into this issue and would not say anything which I didn't know to be fact. The reason we live in a litigious society is greed. Sadly, those who have genuine cause to seek financial compensation get lost amongst the crowd of others who jumped on what began as a justifiable bandwagon. They are just looking to make a fast buck with claims about falsified or exaggerated issues. Those claimants cannot be compared with people like us who have had our lives destroyed by another form of greed - corporate greed.

All the best, Lynn