I've been on Plaquenil for 1 1/2 years, and it seems that the disease is continuing to progress, as well as the persistent pain and stiffness. My rheumatologist gave me an RX for methotrexate yesterday. After reading all of the possible side effects, I'm scared to death to take it. I have a lot of faith in my doctor, but I'm not crazy about the hair loss and nausea, not to mention the liver and lung damage!
I would love advice from some "veterans" that have taken methotrexate. BTW, he is also putting me on folic acid, and I'm continuing the Plaquenil, at least for a while.
Thanks in advance!
LAZ
LAZ, some people are not even that much affected by the mtx. I did have some hair loss at first, and there was a lot of nausea. It kind of felt like I was newly pregnant. I did lose it a few times when my dosage was raised, but now that I have been on the same dosage for about six weeks the only thing I feel is tired the day after. I did drink a lot of Diet Root beer and eat a lot of yogurt. This seemed to help me.
YOur RD will be monitoring your liver functions and the rest. You will be getting a blood test once a month. Folic acid will help, so stay faithful with that.
Hi Michelle,I've been on MTX for about 3 months now and I was terrified to start it. I've been lucky, the only real issue I had is memory problems and being in a fog. My RD Dr. has changed my folic acid to something else (can't remember the name, the pharmacist has the script) that is supposed to be even better than folic acid for MTX side effects, so if you have any problems, ask for something else. Also, drink lots of water the day before, day of and day after your MTX dose.
Don't be afraid. I understand many, many people do very well on MTX with no problems at all. You could be one of them.
Hey Shelly, I get liver function tests every two months. That has me a bit worried. How often do the rest of you get blood tests on MTX?
I have been on MTX about 1.5 yrs (20mg) along with folic acid. being a guy over 40 I can not say my hair loss is from the meds. I recently found out that MTX is availiable in a shot form for about the same co-pay for those whos stomach can not handle it. I am going to talk to rehumy next visit. (As you read on the boards you will see there is no normal with any med.)
Mine are 2 months also.
Right now because I am not *Under control* we are still tweaking a bit. I do get them every month, but I suspect when things settle down and my body finally responds it will probably be every two months.
Take care of yourselves. I have been losing a lot of hair lately, but there has been more stress and I am cutting carbs down to a minimum. I am just trying to find out what my body needs to respond really well.
I am glad that you have not had any side effects, just take the folic acid and have a day to relax if you can.
I have been taking methotrexate for almost two years now followed by Leucovorin the morning after.
I noticed my hair thinning at first but none lately. Nausea and fatigue the following day has been the worst part but increasing the Leucovorin to two pills has helped with that.
I have been off the meds for two weeks now due to having bronchitis and I am getting really stiff again. I go back on the metho tomorrow night. Hope it kicks in quick.
Stinker
I've been on MTX for almost a year now. I'm actually just stopping it too in hopes that my condition has improved. It was the only med that really helped. I also didn't have any major side effects. Some fatigue the day after taking it (Mondays, in my case) but only for the first two months or so. Good luck! LAZ - I have been on MTX for over a year now, and it was 9 months before I could feel any improvement, but I am sure it started before that, just couldn't feel it within my body. Good luck, we are all pulling for you here.
Hello - I have also posted in the AS forum. I think i might be the only Brit on here...
my diagnosis of AS was confirmed today and they want me to start on methotrexate in a couple of weeks but i am terrified! i don't think my symptoms are all that bad (sacroiliac pain, iritis, bowel disorder, genital and mouth ulcers) and everything i read seems to say that this is a last ditch medicine used only when nothing else works. what do others think? should i resist it until (if) things get worse? i don't want to lose all my hair and get liver/lung damage/cancer etc
thanks for any advice
zoester
HI.. been taking MTX (first 10mg then 20 in Feb) since November 07. Initially I saw improvement but that seems to have leveled off. I still have discomfort/pain/swelling/fatigue.