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This topic contains 14 replies, has 0 voices, and was last updated by  Julie 5 years, 7 months ago.

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  • #7128

    Julie
    Member

    I’m putting this out there because I’ve been on the edge of being terrified for the last three weeks. Now that we finally know what is going on I want to let you all know in case any of you are going through this – or take this horrible drug.

    My husband, love of my life, my strength and source of humor throughout my whole CIDP journey collapsed nearly three weeks ago with a host of symptoms that on the outside looked somewhat similar to what we go through. Extreme weakness, tingling and numbness in extremeties, exhaustion (as in sleep doesn’t help), insomnia, confusion, dark urine and kidney pain – and likely more symptoms he never told me about. To make a long story short – he was put on an extremely high dose of Simvastatin for high cholesterol, which isn’t really all that high – and accumulated a toxic build-up thus leading to his collapse.

    I have since found out that Simvastatin is well known for serious side effects and yet is still the first drug prescribed because it is generic and thus cheaper for insurance companies. This drug almost killed my husband. He has lost 15 lbs in muscle mass in the last two weeks, thought he was losing his mind, may have lost some function in his kidneys, and still may lose his job if he can’t overcome the weakness.

    Because Simvastatin can cause peripheral neuropathy and because the side effects are not well advertised I thought it worth telling you all about on the off chance somebody has been taking this drug. I understand that non-generic statins have much fewer side effects and only Simvastatin seems to have the most horrible side effects. In any case, if you are taking Simvastatin I highly recommend you switch off of it even if you think you have no symptoms – sometimes it can take years to do the damage if you are on a low dose. Or that’s what the doc said to my husband – I guess it’s somewhat fortunate he was put on a mega-dose and the symptoms came roaring in instead of sneaking in.

    Just don’t want anyone to have to go through what we just went through – take it with a grain of salt, I’m not a doctor, but I do a lot of research and we’ve now seen and/or spoken to five doctors who all say it can have truly nasty side effects.

    Julie

    #70442

    LindaH
    Member

    I am on Lovastatin and plan on looking that drug up also. Think it can cause problems with Drug Induced Lupus and I don’t need that already having Lupus. A friend of mine on the phone told me about this too being that I have been sick. But I started that drug in June. Late June! Watching it too! There are a few other Statins as well that can cause this problem too. So it might pay to look up the Statins just to see if we are a culprit of the FDA monster!
    Very scary to not know what is happening and find out it was the drug were taking causing the damage.

    #70458

    Anonymous

    Julie, How frightening for you. Thank you for sharing and alerting us to the potential dangers involved with this drug. Valuable info for all of us. Hope your hubby is able to fully recover!

    Wishing you both the best.

    #70474

    L Cala
    Member

    Thanks Julie,
    I am a bit scared now because I have been on a low dose of Simvastatin for years now. What are your husbands doctors recommending as an alternative? I do get liver function tests on a regular basis so hopefully they would be alerted to any possible complications. How long was your hus. on this drug? You definitely got my attention. Sorry about your scare with all this. I do hope he is doing better.
    xo
    Linda

    #70475

    Stormy
    Member

    Wow..I know what you were going thru. My mom was going thru the exact same thing during May – June – and July and finally found out that it was the drug Regalin (sp?) she was put on this after a bypass surgery on her leg. She had all of the same symptoms that we do and I was going nuts trying to get them to do testing or anything. Finally they realized the symptoms started right after she started the medication. Took her off the medicine and she is much better now..Hard to believe drugs can cause so many problems.

    #70486

    flower
    Member

    That’s a frightening situation. Big Parma scares the hell out of me!!
    I can’t go wrong with my bong! This Nov. Michigan will be voting on medicinal marijuana laws; this will make state No. 13 allowing COMPASSION.
    Peace,
    Flower

    #70521

    Smiley
    Member

    Hey Julie, hugs and prayers are being sent your way for you and your hub. Thanks for sharing this info.
    Take care,
    Denise

    #70552

    Julie
    Member

    [QUOTE=L Cala]Thanks Julie,
    I am a bit scared now because I have been on a low dose of Simvastatin for years now. What are your husbands doctors recommending as an alternative? I do get liver function tests on a regular basis so hopefully they would be alerted to any possible complications. How long was your hus. on this drug? You definitely got my attention. Sorry about your scare with all this. I do hope he is doing better.
    xo
    Linda[/QUOTE]

    Hey ya’ll,
    Thanks for your kind words, you all always make me feel better. My husband was put on 80mg of Simvastatin and was on it for nearly 5 months. Symptoms started showing up 2-3 months ago but weren’t really obvious until 3 weeks ago. So far the doctors are just recommending that he get off of it and flush it out of his system. It’s been a total of four days and so far he is no better. He will likely be off of cholesterol drugs for at least a month and then we will revisit which one he should take and at what dosage. His doctor of 20+ years suddenly retired the week before my husband’s symptoms got to crisis level so we can’t ask him why he took my husband off of Lipitor, which had no side effects, and put him on Simvastatin at such a high dose. I don’t even want to speculate on the sudden early retirement, just don’t want to go there right now. I’m taking this one day at a time, this weekend my entire family is visiting – I’m not sure what part of my brain thought it was a good idea not to cancel the reunion – so both myself and my husband are stretched to our limits. As difficult as it is to get my husband to rest, it’s even more difficult to get my family to leave him alone – they love him, and typically he is the “straw that stirs the drink” around here, the life of the party, always plays with the kids etc. It’s been hard to see him so beat down. I want to drive down there and find that doctor and slap him a few times for doing this to my husband – but of course I can’t drive so I’ll have to just let it go.

    Thanks again for being there for me ya’ll. I sincerely hope that someone can learn from our mistakes and not have to go through this. Have a happy weekend and if I survive I’ll check in with you all next week.

    Julie

    #70604

    WithHope
    Member

    Julie, I am so sorry that you and your husbaand have gone through such a tough and scarey time. I hope that you just focus on love this weekend and not on trying to make everything like it “usually is”. Love is the important part of being with family, not what you do or what you say really, just that you can be together in love.

    I am not taking up doctor defending, but I wonder if you really meant to imply that your husband’s doctor did this on purpose to him when you said you want to slap him for what he did to your husband? All medicines have side effects. I am on simvastin also and my doctor told me how safe it is for almost all. Because it is generic, it has been around quite a while and the safety profile is pretty well known. Since I work at a hospital, I see lots of doctors that have been practicing for decades retiring early because there is so much pressure from insurance companies to use only certain medications and only admit for so many days and in general second guessing everything. We had to hire someone this year just to call and try to get “preauthorization” from insurance companies for drugs that the children need to make it through chemotherapy without being miserable from side effects or not getting what is accepted standard of care. Sometimes no matter how hard it is argued, the “preferred” approach is not approved. Also if everything is not written down perfectly, insurance/medicaid may not pay anything. The number of stupid pages has probably doubled in the last two years for each patient encounter/admission to the hospital. It is enough to drive us all batty. We joke about it when we don’t feel so much like screaming. For example, you cannot register a patient for admission without answering questions like what words does he/she use for going to the bathroom. The teens really hate that one. I tell them to make up something really creative.
    I know you are upset and frustrated that your “rock” got ill, but I am also sure that his doctor of 20 years would never have put him on this medicine if he would/could have predicted that he would have a reaction to it.
    Just my two cents at the end of a long day.
    WithHope for a cure of these diseases.

    #70634

    Jamie
    Member

    julie,

    thank you so much for the info, and i am so sorry you had to go through this. if it helps to know that you are not alone, then i should tell you that i just went through the same thing, but with another med. my son, age 13, went through it too, when he was 11. the name of that drug is Lamictal. it is usually prescribed by neuroogists and sometimes psychiatrists. i would seriously encourage anyone who may be put on that drug to reconsider. it is a good med but has absolutely horrific side effects that are life threatening. stopping the drug does not stop the reaction. since we’re talking about this stuff, i just thought id give everyone a heads-up. dont want anyone to see anyone else go through that.

    good luck to you and your husband. i am grateful you found the source of your hubby’s illness and will pray for his recovery. hopefully that stuff works its way out of his system quickly;)

    #70662

    codystanley
    Member

    Hi,
    I got scared by statins too when I heard what a dangerous drug it can be and I did a research on them. I take vytorin for cholestoral and I told, not asked, my doctor that I was going to go off them for three months to see if it made any difference. Apparently it didn’t so I felt okay about going back on them.

    #70716

    Rhonda
    Member

    Julie,

    That is an awful experience that you and your hubby went through!

    Hopefully he is starting to feel much better.

    I just went to my specialist last week for a diabetes checkup.

    Doctor looked at my blood test results. I have been taking 80mg of Lipitor.

    Liver tests slightly elevated. Had more blood work done to double check things. If liver tests still up he wants me to switch to 20mg Crestor.

    You need to take way less Crestor and usually get better results.

    Not sure about other statins.

    I will let you know Tuesday what the results are.

    Rhonda from Canada

    #70725

    Julie
    Member

    [QUOTE=WithHope]
    I am not taking up doctor defending, but I wonder if you really meant to imply that your husband’s doctor did this on purpose to him when you said you want to slap him for what he did to your husband? [/QUOTE]

    No, not at all – just tired and frustrated – I am certain his doctor would have taken him OFF the drug too if my husband had ever told him about the side effects he was having. My sense of humor tends towards the cynical and sarcastic when I’m exhausted… just ignore the exaggerated response if you don’t mind. He is doing a little better, we survived the weekend. :)

    #70730

    Matteyrae
    Member

    Julie
    So glad hubby is doing better.
    Shirley

    #70748

    norb
    Member

    what a scary experience you and your husband had, Julie. to hear about what simvastatin can do is rather troubling. Like Liz, I have been taking Vytorin for some time. it is a combination of ezetimibe and simvastatin. actually, I’ve been taking simvastatin (Zocor) for almost 10 years. A few years ago before I was diagnosed with CIDP and what I had was just labeled peripheral neuropathy, I read that simvastatin might cause neuropathy. I stopped taking it for awhile but nothing happened. So I went back on it again. In the meantime, from what I know is causing my variant of CIDP, it is hard for me to imagine that a chemical might be involved.

    I suspect the generic simvastatin is being manufactured by a company other than the one producing Zocor. could it be that there is some slight chemical difference between the two that caused your husband’s symptoms? I never heard of Zocor having such severe side effects.

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