Discussions that mention methotrexate

Arthritis board


I've heard this is very, very rare but just wanted to post to maybe benefit someone else.

My father was put on methotrexate in Aug this year for *suspected* rheumatoid arthritis (2.5mg, 4 tablets/week). After only his second dose, he started having nose bleeds so he immediately went to the ER per his Doctor's instructions. He was in the hospital for 2 weeks, receiving transfusions for low plateletts and low white blood count (WBC). His WBC continued to drop. He was put in isolation. The doctors tested for leukemia, lymphoma, and other blood disorders (parvovirus B16) ... all which came back negative. In addition to nose bleeds, he had some small amounts of blood on toilet paper but his Drs thought it was likely from hemorroids and said they'd focus on that after figuring out what was wrong with his bone marrow. His Drs talked about bone marrow replacement in the future and sent him home. 2-3 days after being home he was back at the ER with severe stomach pain and was put in ICU. He had developed an infection in his bowels that progressed to the point where gangrene had set in and part of his bowels had perforated, letting air into his body cavity. Sepsis rapidly set in. Drs did a highly risky (due to low platelette and WBC) emergency surgery to remove the gangrene portions of his bowels. His body was in such bad shape from the sepsis, and his WBC and platelette count never recovered sufficient to allow his body to heal, that eventually, after a little more than a week from the re-admittance to ICU, he passed away.

All of this happened over about a 3.5 week period from first admittance to the hospital for nose bleeds after taking methotrexate, going from a healthy man in his mid-60s, to a tragic, unexpected end.

Posting this here as a start, hoping it may lead to better pre-screening for methotrexate prescriptions to avoid issues for at-risk patients. Something else may have been going on in my father that was missed by his Doctors, but the methotrexate seemed to be, and suspected by his Doctors, to be the unfortunate catalyst to this tragic end.
I felt very sad reading your post about your father. I am very sorry for your loss. I was diagnosed with arthritis 4 years ago and the first medication I got was methotrexate. The first thing that happened to me was my hair fell out which was devastating. Then over a period of 6 months my liver count went from 24 to a whopping 150 and I was hospitalised for 4 days I also had a blood clot in my lung which meant medication to thin my blood. I was released from hospital and all methotrexate was stopped. Luckily for me, after a few weeks my liver went back to normal, but I can assure you I felt very poorly all the time I was on it. My hair came back, only to fall out again with the next dmard they gave me (but thats another story). Some people seem to tolerate methotrexate others dont. I hope you feel stronger soon, and once again sorry about your father.
just so everyone knows a liver count is not serious until it is well beyond 500. Hospitilization before that is usually for some other reason.

Methotrexate does have serious side effects. the decision to take it is not an easy one. For me to sit in a chair at 54 every day was as good as dying. My hair did fall out. I switched to enbrel which is far worse than methotrexate in terms of side effects. if I have 1 day without pain I will be happy when i die. for someone else this may not be their decision. My children know I am on these m eds and I have told them they need to spend time with me now because there may not be a tomorrow. It is my decision. I can move, dance take walks even type now, prior to the meds I could do nothing. Methotrexate shouyld never be the first drug someone is given. a good dr will start with nasaids at high doses only if they fail should a dr. try methotrexate and enbrel.
I just want to say that methotrexate really helped my arthritis, and if I could go back on it I would. Its just that I reacted to it. Out of all the dmards I have taken, methotrexate was the best for my swelling and pain. Obviously, all drugs have different side effects on different people.

Ronnie
i miss the pain releif so much that I had from methotrexate that I am considering going back on it . My hair loss was my biggest problem. I have always had long beautiful thick hair until methotrexate. 4 weeks off of it and my hair is coming back hhoweover the enbrell is not working yet. My friend and I joked about getting a avariety of wigs all of different colors. I will give the enbrell till december and then i dont knw what I will do. I had to miss a day of work this week becaus eevery major joing hurt so much that I could not even get out of bed. Today I was much better. My boss is going to start to not beleive me. If I need to I guess I will just have to leave work. I can not be around little children and not be able to move in an emerency.
I am so sorry 4 ur loss, & so sorry your dad went through all he did

I can understand some of what he went through, after nsai didnt help & then prednisone, then plaquenil, they added methotrexate to me... Oh god it was the worst thing ever.. its was the 2.5 4 tab 1x a week
I didnt care if I lost hair, I told friends & family id by a load of diffrent scarves & make a fashion statement, i tolerated the vomiting, diahrea & stomach pains but when i started bleeding everytime i went bathroom & actually bleeding when i wasnt going 2 bathroom, id wake up & find blood in the bed... Took 3 weeks after my last dose b4 the bleeding stopped

my platelet iron ect still hasnt recouped from what went on & my gp said if it doesnt get better soon might need transfusions... only good thing was the RA pain was less

so now im on the prednisone, plaquenil, gabitril, enbrel, & lidoderm patches & percocet & still in pain will see what happens next week when i go pain clinic