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methotrexate toxicity fatality

Posted , 23 users are following.

kristy7
kristy7

Dear Methotrexate Gang,

Hi - I'm writing this post because my father has passed away from methotrexate toxicity in February. This cause of death has been officially confirmed. I'm in a state of shock and I really don't believe that the general public understand the severity or danger of this drug.

As I've read here many MTX patients have been on this drug for months if not years. My Dad was on this drug for only five days.

Here is some advice for everyone on this drug:

> Please everyone always ask for a consumer information pamphlet and be aware of the side effects.

> Even if you feel fine don't ignore any side effects

> Hospitals don't check for MTX levels in the blood - if you find yourself in Hospital ask them to test the levels.

> Be aware of leucovorin therapy ; known as 'rescue therapy' (this is administered if you have suspected MXT poisoning)

> Always follow the directions from a rhumatoid arthritist specialist or dermatologist or oncologist - not a general practitioner

 

3 likes, 65 replies

65 Replies

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  • cathyfizz
    cathyfizz kristy7

    Posted

    This all scares me terribly. I was just diagnosed with Polymyalgia Rheumatica in December. I was started on prednisone which has given relief. I had my first appointment with my Rheumatologist last week and right away he wants me off of the prednisone and onto Methotrexate. I don't understand all of my doctors say how bad prednisone is and that Methotrexate has less side effects. Well, not from what I read! Why do they insist on Methotrexate over prednisone? I am so scared and just starting my journey with this disease.
    • Dinah54
      Dinah54 cathyfizz

      Posted

      There are thousands of people - like myself - who have no ill effects whatsoever from methotrexate, only benefits. You are carefully monitored with blood tests every two weeks for the first few months.

      I was on prednisolone for nearly three years as I was misdiagnosed with polymyalgia and now have osteoporosis. The trouble is it does make you feel so much better and I think in a strange way I became psychologically dependent on it as well even though at first I was horrified when told I would be on it for a year. There are obviously good reasons why doctors don't like us being on it long term if at all possible.

      Maybe your rheumatologist is not 100% convinced you have PMR? Rheumatological diseases are often hard to differentiate and diagnose - as I know to my cost.

      You need to have a good talk to him about why he wants you on mtx and whether there is any evidence about the benefits of using it in PMR.

    • cathyfizz
      cathyfizz Dinah54

      Posted

      Thank you for your encouragement Dinah54. I do have another appointment tomorrow with my Rheumatologist to discuss my concerns. It was just very difficult to inject that first dose, knowing what I am putting in my body. I am in the medical field, so I am aware of the evils of predinisone and methotrexate. I am also aware of the relief they bring. That being said, I eat organic and used to exercise. So for someone who pays an extra $2 for her organic blueberries, you can bet it was traumatic to inject a toxin into myself! 
  • janet08828
    janet08828 kristy7

    Posted

    Hello Kristy.

    Sorry for your loss.

    I have been taking a weekly injection of 20mg. MTX for the past year+

    As far as I have understood this is nearing a maximum dose, I think the weekly maximum dose is 25mg.

    I am also having regular blood tests to monitor any problems that might be lurking in the background, my liver count isn't so hot at the moment.

    Thanks for the warning.

  • lithuania
    lithuania kristy7

    Posted

    I am seventeen years old and I am prescribed with 20 mg injection weekly.
  • carolbrady1
    carolbrady1 kristy7

    Posted

    Hi Kristy, my sympathies go out to you - exactly the same thing happened to my dad back in April!  I have posted about it on here but no-one seems to have taken any notice- let's hope they do now.

    • judith99848
      judith99848 carolbrady1

      Posted

      This is so terrible - that you are the second person I have read about in here who lost a loved one to Methotrexate. I am so sorry you lost your dad this way. Did the drug company or his doctor give you any information you could share with us? I am sorry for your loss and sadness.
    • carolbrady1
      carolbrady1 judith99848

      Posted

      Thank you Judith, yes it was a big shock and the trouble was that my mom couldn't remember receiving the warning leaflet that was supposed to be given them by the hospital - which warned to stop the medication if breathing problems occurred - my dad had seen a  private consultant first  and the 2 institutions didn't speak to one another, apparently, so that's why we think we didn't receive all the information.  The inquest concluded that practice must be changed for the future to ensure this breakdown in communication won't happen again.

  • judith99848
    judith99848 kristy7

    Posted

    I am so sorry you lost your father in such an unexpected way. Losing our loved ones is so very hard, but losing them to a medication that is supposed to be helpful is especially sad.

    Did your dad have all of the necessary tests done before he started on the meds? I am about to start Methotrexate and I have had blood work done to be sure I can take it.

    Thank you for your warning and your advice.

    Again, I am so sorry for the loss of your dad.

  • krishnaji41
    krishnaji41 kristy7

    Posted

    Dear kristy7 

    extremely sorry to hear about the sad demise of your f anther. MXT is to be prescribed only on Once In A Week. I am on MXT for more than 10 years for my psoriatic arthritis now. I have had no side effects so far. The mistake is of being prescribed Daily basis a drug which can be highly toxic when dosage is wrong. My condolences to you and family

  • Tammyshernia
    Tammyshernia kristy7

    Posted

    Hey Kristy I'm so sorry to hear about your family member I als take methotrexate 6 tablets 1 time a week my pharmacy told me he couldn't tell me not to take it but he did say to me if it was his mom or wife he wouldn't let them take it and for me to be very careful not to take it daily it's to be make to take 1 time weekly and on the same day of the week I also take plaquenil and that is to be taken everyday and that is 2 tablets

  • Sandy1205
    Sandy1205 kristy7

    Posted

    So very sorry for your loss. I want to share the nightmare we are going through with methotrexate. My stepdad has been on it for approximately 10 years for his RA. He has started experiencing Alzheimer like symptoms. After tests and MRIs the neurologist told us it is the side effects of the Methotrexate. He was told to stop taking Methotrexate immediately. He has become virtually disabled because of this medication. He now suffers from memory loss, vision loss, hearing loss, balance and coordination loss, and tremors. Over 70%of the white matter in his brain is now grey matter and dead brain cells. I am so angry right now. My stepdad has no quality of life now and the doctors say it is caused from extended use of Methotrexate.
    • Tammyshernia
      Tammyshernia Sandy1205

      Posted

      My god I'm on that med I'm now going to stop it's not worth it to me thanks for all the info

    • kristy7
      kristy7 Tammyshernia

      Posted

      Dear Tammy,

      Don't take the risk as this drug methotrexate it is far too dangerous and toxic.

    • kristy7
      kristy7 Sandy1205

      Posted

      Sandy - so sorry for all your troubles with this horrific drug!! Our thoughts are with you and your family. The Doctors must really believe that methotrexate is the cause; because in our experience, it is quite rare for a doctor to provide adverse comments on a medication that another Doctor has prescribed. What dosage was your stepdad on? Did he have regular bloodwork/urine done?

      I know our Dad was very confused and disorientated and I would like to know more about the effects on the brain.

      Take care and let us know how you get on...

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