Methotrexate toxicity
Posted , 8 users are following.
My sister-in-law was a member of this group. She passed away with what we believe were complications from her recently increased dose of methotrexate. We're removing her account from this group but would like to caution you all that methotrexate toxicity is real, although somewhat rare. Check your dosage and your filled prescriptions as well, it is typically taken day per week.
I've read that there are definitive tests for methotrexate toxicity and that there are antidotes. Wish we had known this earlier. Her initial symptom was extreme fatigue which doctors indicated were manifestations of depression. Eventual symptoms were respiratory issues including sore throat and shortness of breath.
Developed pneumonia and became septic with irregular heartbeat and very rapid pulse. 7 weeks from noticeable increased onset of extreme fatigue, 6 weeks total in hospital including 3 in ICU with eventual death due to recurrent pneumonia. The underlying fatigue prevented her from almost any physical activity which allowed the pneumonia to take hold after a 3.5 week mutli-antibiotic regimen.
Take heed and DO NOT dismiss symptoms or delay treatment if you are taking this toxin and become ill. DEMAND a methotrexate toxicity test and do as much research as you can on your own.
0 likes, 16 replies
AlexandriaGizmo triciapjh
Posted
I am so sorry to hear of your sister in laws passing, my sympathy goes out to all of her family.
Did they not do the toxicity test when she first went in and found that she was taking methotrexate.
We all know that this drug can be quite potent and can carry some severe side effects but their are many people who rely on it to be able to manage their daily lives and couldn't function with out it, thanking God that I'm not one of them but your statement is possibly a little frightening for many especially if it's not been confirmed as the cause of death or that it was a contributery factor
RA is an autoimmune disorder that makes the body stop itself fighting infections that others would brush of without too much trouble making pneumonia a bad option for us, please double check that it did cause her death and come back and let us know because I would hate to think that members might stop there use due to fear
Again my deepest condolences
AlexandriaGizmo triciapjh
Posted
I am so sorry to hear of your sister in laws passing, my sympathy goes out to all of her family.
Did they not do the toxicity test when she first went in and found that she was taking methotrexate.
We all know that this drug can be quite potent and can carry some severe side effects but their are many people who rely on it to be able to manage their daily lives and couldn't function with out it, thanking God that I'm not one of them but your statement is possibly a little frightening for many especially if it's not been confirmed as the cause of death or that it was a contributery factor
RA is an autoimmune disorder that makes the body stop itself fighting infections that others would brush of without too much trouble making pneumonia a bad option for us, please double check that it did cause her death and come back and let us know because I would hate to think that members might stop there use due to fear
Again my deepest condolences
AlexandriaGizmo
Posted
Interesting reading for anyone taking methotrexate as it is probably more informative than the enclosed leaflet.
Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.
Gloria814 triciapjh
Posted
I am so sorry to hear about the death of your sister in law. Thank you for giving us this word of caution about the drug and her passing. Can I ask what her name was or what she used as her 'nickname' on this site. Will say a prayer for her and your family at this difficult time.
lyy13133 triciapjh
Posted
I am so sorry. You must have cared very much. I refused methotrexate. I was never asked about my history of bronchitis or anything. They wanted to do tests but not for the reasons of care just it was part of the procedure. I am now using meloxicam and CBD, fish oil tablets and iron. I am much improved. I cannot believe CBD isn't being suggested because ti is wonderful and natural. It is hard to lose a sibling. They witness our life. Thank you for caring.
Jayjay1959 triciapjh
Posted
I was so very sorry to hear you tragically sad news but you're right to warn us to take any side effect or new symptoms seriously as things can go bad very quickly on this very toxic drug
I myself do take MTX and have done for 17 years I'm very fortunate but I also have flu jabs yearly pneumonia every 6 years and am vigilant around my health
You are very nice to warn us in what must be a very difficult time for you bless you
Mollyjr triciapjh
Edited
So terrible. Im sorry about your SIL. I have a high RF with no symptoms but the doctors eyes lit up and she wanted me to take it. I refused. Doctors are so quick to put us on drugs. Beware. A friend of mine got pancreaitis with this drug. The doctors are keeping him on it. As long as I feel good I will not take these toxic drugs. Thank you for telling us your story.
shirlee86000 triciapjh
Posted
so sorry to hear your sad news, i too am on methotrexate for the past two years, your post has worried me i am going to come off it as from today, i guess i will just have to out up with the pain my RA causes me
Gloria814 shirlee86000
Posted
I am not positive but I think you have to come off methotrexate gradually. Perhaps someone else knows for sure. I know with prednisone/ cortisone you can't stop it abruptly
We have to weigh the side effects against the terrible joint damage RA can do. That being said I stopped my meds last yr since they were making me very sick.But those I could stop abruptly
AlexandriaGizmo shirlee86000
Posted
Hi you must not just stop your meds you have to wean off of them and even that you should do with the cooperation of your rheumatologist or your GP
Yes these drugs are pretty potent but some people do use them quite safely and have done for years without any mishap
One of the main causes of problems with methotrexate is drug interactions which is something to be aware of
All drugs have side some extremely minor and others that can be quite bad but all can have their uses and sadly some can be responsible for causing death but I'd like more information on each individual case before I pass judgement
See your health care professional first
shirlee86000 AlexandriaGizmo
Posted
thankyou for your reply i am due to go on the 27th and will ask then, i talked to my husband about this and actually ended up taking my 8 this morning
AlexandriaGizmo shirlee86000
Posted
I think that that's definitely the way to go and it's not too long before you see someone who knows your circumstances and can give you their informed advice.
I would say that if you are not happy taking it for whatever reason you need to make the consultant aware of this and explain your reasons, you cannot be forced to take any meds you don't want to take and ask what's the alternative that don't carry so many health warnings
You do obviously have regular blood tests and know the other medications that you cannot take with this drug.
I wish you well and hope you will keep us informed
danny16391 triciapjh
Edited
More and more people are dying because of toxic drugs , and not by their illness , the doctors should know by now that one cure doesn't fit all , but the damage they do affects everyone.
AlexandriaGizmo danny16391
Edited
I totally agree, it's great to have medication that rids us of some symptoms so long as it doesn't make you physically worse than you were before you started it.
I am making an informed decision to not take things like methotrexate
because the more I read about it the more toxic it appears to me
lyy13133 AlexandriaGizmo
Edited
I find that most people don't realise the many different types of rheumatoid that we may have. Doctors treat us all e th same. We aren't. methotrexate may work for some and not others - and of course, because rheumatoid moves around the body and flares are personal then all this goes under their radar because they simply don't have the time we need. I can't tell you how ill I was in the beginning. The RA was ruthless. Gradually I am getting back to normal. It's taken a while but at least I know my body is strong again and all signs show it's healthy. I think CBD has been absolutely fantastic. But again it doesn't work for some. I just don't want anyone to be afraid of RA because it can be managed very well.
AlexandriaGizmo lyy13133
Posted
I totally agree with you we are all different and need one 2 one treatment not blanket medication
I'm glad that you have now got a brighter future and can control your RA better