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flapjabby 10-17-2007 11:46 PM

methotrexate contributed to my fathers recent death
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.

kellyswoman01 10-18-2007 06:59 AM

Re: methotrexate contributed to my fathers recent death
Thank you for posting such a tragedy. I am sorry for the loss of your father. I looked up the side affects of the medicine your father was on and they are indeed scarey. It's sad but we do rely on our doctors to know what is best for us, but I think the doctor should take more time to go over the side affects with their patients and then give the patient the chance to decide if they want the doctor to prescribe that medicine. It seems his doctor may have advised him of some of the side affects as he did instruct him to go to the er. Unless it was in the case that he called the doctor's office when this happened and was then instructed to go to the er. Regardless, it is sad that your father had to go through such pain trying to relieve his pain. Had your father only taken 2 doses or did they continue him on the medicine in the hospital? Sometimes unless we ask what the medicine is for that they give us when we are in the hospital, we have no idea what new medicines, if any, we are getting and the side affects of those. Again, I am sorry for the loss of your father.

Ronnied 10-18-2007 09:52 AM

Re: methotrexate contributed to my fathers recent death
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.

huckfinn 10-18-2007 12:49 PM

Re: methotrexate contributed to my fathers recent death
I am very sorry to hear of the loss of your father. G-d bless you.

I read the possible side effects about 2 years ago, and wondered how people could take the medicine, and more importantly how could a doctor prescribe it. I posted these possible side effects on a forum and was lamblasted.....

louie112 10-18-2007 04:55 PM

Re: methotrexate contributed to my fathers recent death
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.

Grana 10-18-2007 09:41 PM

Re: methotrexate contributed to my fathers recent death
I have reactive arthiritis due to bacterial infection in gut that doctors seem at loss as to how to cure. The rheumatologist started me out on various NAISD's and of course having stomach problems I could not tolerate any of them. Then the next course of action was to be methroxate which after I READ about it I totally refused to take. In a case study those taking that med is at high risk of bacterial infections (I HAVE ONE TOO MANY NOW!!!) So, I brought the study to the attention of my internist and he conferred with the rheumatologist and they quickly decided against it. Luckily my arthiritis seems to be in somewhat of remission right now and I am taking nothing but OTC aleve and taking probiotics.At one point I could not even wear shoes due to severe swelling and pain and I pray it does not get that bad again. If it does then I will be forced to proceed with one of the drugs with all the risk. But if pain and not being able to walk is all that I had to look forward to for the rest of my life------WHAT CHOICE IS THAT?

Ronnied 10-19-2007 01:27 AM

Re: methotrexate contributed to my fathers recent death
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.


louie112 10-20-2007 06:47 PM

Re: methotrexate contributed to my fathers recent death
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.

huckfinn 10-21-2007 08:18 AM

Re: methotrexate contributed to my fathers recent death

Please try this age old home remedy for your "bacterial infection", that could be a yeast infection in your gut, or candida. It is cream of tartar used in cooking. If a person has taken lots of antibiotics, it feeds the yeast that is naturally in the gut. This yeast can actually perforate the gut. At the same time, take plenty of probiotics.

The starting dose of COT is, say 1/4 teaspoon a day. It tastes great mixed with buttermilk, which also has live cultures. Increase this dose until you get a touch of diarrhea, then back off a bit and try it for a couple of months. If you feel better, continue to take it, maybe every couple of days, or still everyday. You can do a search on this.

It is expensive buying COT at the grocery store, but you can order 1 lb. bags online for $8...

NSAIDs caused ulcers in my stomach and small intestines years ago. The ulcers are gone, but I get tremendous ulcer pain if I dare take any NSAID. I think this is called Peptic Ulcer Disease.

Geeze I hope I didn't violate any rules :confused:

wen10 10-23-2007 01:27 PM

Re: methotrexate contributed to my fathers recent death
Dear Flapjabby,
i am so very sorry to hear of your fathers passing andhope you have family/friends around you who can support and comfort you.

RA sufferers',
All DMARDS do have possible side effects but sometimes when the pain is that bad what choice does one have, if there were safer drugs to take then i guess we would all be on them! I am 33 years old and am soon to start the DMARD Plaquinel, which has a side effect of damage to the retina, this of course scares but what choice do i have??? If i choose to do nothing i risk erosions/deformities and constant pain! In England MTX is usually the first DMARD you are offered which can work well for some people. I guess it just comes down to personal choice. For me not being able to sometimes walk, hold a cup, cut up food, get dressed, open jaw fully, move etc... the list goes on, is this much of a life? just a thought, i know taking DMARDS is a risk but at present there are'nt any other choices.
Takecare and best wishes everyone.

Venusrose 10-23-2007 06:59 PM

Re: methotrexate contributed to my fathers recent death
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

wen10 10-24-2007 01:46 AM

Re: methotrexate contributed to my fathers recent death
Morning Venusrose,
Im sorry to hear all that you have been through, it must have been very frightening for you. Please do keep us posted of your progress and takecare.

Grana 10-31-2007 10:07 PM

Re: methotrexate contributed to my fathers recent death
HuckFinn- Thanks for the suggestion. I have tried everything in the world and have taken every probiotic made without success. If I go off the vancocin the diarrhea (p.colitis) puts me in hospital within 5 days near death. It is horrible! I have never heard of this treatment but hey at this point I am willing to try anything!-------Thanks

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