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Thread: Marfan's Syndrome (And other connective tissue conditions) and Drugs.

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    Marfan's Syndrome (And other connective tissue conditions) and Drugs. 
    #1
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    I am a diagnosed Marfan's patient, which means that my connective tissue is genetically predisposed to be looser than your average person's. Pros: Height, reasonably quick metabolism, and double jointedness. Cons: cardiac symptoms/risk, unusual thinness, and poor circulation.

    I'm wondering what drugs/drug classes/methods/RoAs/activities are absolutely contraindicated for someone with this (or other circulatory) condition(s). I exercise pretty often and think I'm healthy as a whole for someone with Marfan's and (based on looking at the Marfan's website) I believe my symptoms are relatively mild...

    Also, based on the number and variety of drugs I've consumed and lived through over the last four years I'm either very lucky, not as seriously afflicted as others, or Marfan's doesn't limit your drug-use options very much at all.

    I've used a host of opiates, psychedelics (including dob, which is supposed to be terrible for circulation), stimulants, benzos, alcohol, weed, and recently kratom. While my blood pressure fluctuates sometimes and I'm prone to head rushes, I haven't seen any evidence of serious damage done by drug use and every year when I have an echocardiogram and EKG done they always tell me that things look normal and, more often than not, that everything looks very good and very stable.

    I'd greatly appreciate anyone's opinion, but really obvious stuff like "stimulants are bad for your heart" or "depressants lower your BP" I can pretty much figure out for myself. If anyone has professional or anecdotal advise specific to cardiovascular conditions that'd be awesome.

    Thanks! There seems to be very little info about this on Bluelight thus-far. Lets break some ground!!!
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    #2
    Bluelighter Mugz's Avatar
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    going to move this to Other Drugs for now, think you might get more responses there, although not sure if it might be better in ADD as they will have a broader knowledge of specific conditions too.
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    #3
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    I would not expect a connective tissue disorder to affect the use of psychedelic drugs.

    The only thing I can think of that you should be worried about is overuse of 5-HT2B agonists like 2C-E, because those are known to cause overgrowth of the heart valves which you seem to be predisposed to. (Or at least fenfluramine, a known 5-HT2B agonist, was.)
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    #4
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    Not being a dr my info is in no way to be taken as advice or truth, but I believe one weakness for marfan patients is the connective tissue to the artery of the heart could be weakened. Extra stress caused by stimulants seems like a contraindication some being worse then others. You should check with a specialist to see if this is true in your case. Maybe some more knowledged could shed some light on this, but I would be particularly wary for substances like Cocaine, Efedrine, 4-methyl-methcathinone and the like.

    But from my own observations and background, I am fairly sure I have undiagnosed HMS (Hyper Mobility Syndrom) or EDS Ehler-Danlos Syndrom, which are directly related to Marfan. I noticed daily usage of Kratom led to morning stiffness and pains unrelated to w/ds. I believe my daily dosing Kratom lead to numbing me while I slept. As a result I unnoticeable caused my limbs to displace during the night and as a result the stiffness and pain in the morning. Later on I discovered this effect was not w/ds as the first morning after i ceased Kratom the pains were gone. Other trials with Kratom like stopping after first dose in the morning showed me i suffered no physical w/ds from kratom. Which led me to this theory of mine.
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    #5
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    Quote Originally Posted by TheLeftIsRight View Post
    I'd greatly appreciate anyone's opinion, but really obvious stuff like "stimulants are bad for your heart" or "depressants lower your BP" I can pretty much figure out for myself. If anyone has professional or anecdotal advise specific to cardiovascular conditions that'd be awesome.

    did I mention I am a excellent reader
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    #6
    Lol thanks for the info sekio, emkee. Emkee, that's strange- I don't know much about Ehler-Danlos, except that it's similar to Marfan's, but I use kratom fairly frequently and it doesn't seem to cause any seriously bad reaction. It just can make me feel over-stimulated if I have it with any caffeine whatsoever... But I haven't noticed what I'd consider dangerous physical symptoms associated with that feeling. And yeah, I've decided to lay off the stimulants. I used to use amphetamines (dextro and mixed salts) regularly for school, but I hopefully have dropped that habit before it caused any lasting damage. My only fear would be a stretching of the valves of my heart, since they're looser and more flexible than average, which would then (upon return to regular pressure) make an incomplete seal and backwards leaking possible... I'll know more after my next cardio appointment, but as of my last everything was copacetic.
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    #7
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    Quote Originally Posted by TheLeftIsRight View Post
    but I use kratom fairly frequently and it doesn't seem to cause any seriously bad reaction. It just can make me feel over-stimulated if I have it with any caffeine whatsoever... But I haven't noticed what I'd consider dangerous physical symptoms associated with that feeling. ... I used to use amphetamines (dextro and mixed salts) regularly for school, but I hopefully have dropped that habit before it caused any lasting damage.
    The effects described by me regarding Kratom never felt as dangerous symptoms. Which I realize you asked in your first post I hope I didn t cause any false alarms or anxiety. It was annoying but resolved by my first dose and I still wonder what caused them. It could have been an w/d symptom, theorizing a little further, that could only be witnessed in the morning. There is plenty room for theory now I think it over again. This would occur when dosing 24/7 for a while on my ceiling dose.

    Dextro-amphetamine, which i am prescribed for ADD, seems so free of any heartrate/ bloodpressure effects like the other stimulants, even caffein imo seems worse. I wonder if it, at therapeutic doses, it is contradicted for Marfan. Although I leave that to be answered by a specialist.

    The relationship Marfan Ehler-Danlos (EDS) or hypermobility syndrom lies in the connective tissues. EDS has faulty collagen, the most well none feature being the extremely stretchable skin and limbs. While the features of Marfan syndrome are due to faulty fibrillin-1 and an over-expression of TGFβ. Collagens and fibrillin-1 are proteins that add strength and elasticity to connective tissue. from http://www.marfan.org/marfan/2348/Other
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    #8
    i was dianosed With marfans when i was about 12 im 17 now. If i was to stop smoking at 25, would i have to or put myself at risk for open heart sergery
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    #9
    Bluelight Crew tricomb's Avatar
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    Quote Originally Posted by cameale1 View Post
    i was dianosed With marfans when i was about 12 im 17 now. If i was to stop smoking at 25, would i have to or put myself at risk for open heart sergery
    YES, if you have marfans the LAST thing you want to do is smoke cancer sticks.
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    #10
    I am not a cardiologist, nor do I specialize in cardiology or congenital diseases.

    However, I do know that with Marfan's syndrome any unnecessary stress on the body should be avoided at all costs. The lungs, heart, skeletal and CNS are all weakened by Marfan's. The biggest risk is an aortic rupture (which I am sure you are aware of) Pregnancy is a huge stressor on the body of a patient with Marfan's. I can only imagine that recreational drug use of almost any type is just as risky and damaging, if not more so.

    Are you on any prescriptions to manage your disease? I would imagine you must be on some type of medication like a beta blocker to keep your blood pressure at a low level. Do you see a doctor regularly? It is very important to have your medications monitored and regulated by a doctor.

    Out of curiosity, are you wanting to try drugs for recreational value or are you looking to alleviate pain caused by Marfan's?
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    #11
    i was taking about weed. and do you think smoking twice a week is alot but i smoke papers
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    #12
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    I would not recommend any drug use that would put stress on your heart. It seems that heart conditions are very common with this disease. I would def stay away from anything that constructs blood vessels like cocain. I would avoid all stims. I don't even think I would smoke pot. It can cause anxiety which puts stress on your heart. You have to be careful with opiates and Tylenol, they decrease your WBC and this can lead to infection in your body. I would stay away from everything.

    This is my opinion.
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    #13
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    Smoking marijuana is probably a lot less harmful than smoking tobacco. You want to avoid severe coughing as it can damage the lungs, but moderate use of THC is probably fine.
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    #14
    Quote Originally Posted by cameale1 View Post
    i was taking about weed. and do you think smoking twice a week is alot but i smoke papers
    Weed is a very bad idea, it is damaging to the lungs, since you have Marfans you already have weak lungs.
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