I was recently diagnosed with an elevated sed rat. My doctor skipped prednisone for my joint treatment and went directly to methotrexate. This is a very potent drug. Taken only once a week, it is also used to treat some types of cancer. I was wondering if anyone out there is or has taken methotrexate? I would like to find out more from someone who has actually expereinced it.
I took methotrexate for a few years. It was a god-send in the beginning. Helped me tremendously. But I also continued to take prednisone and ibuprofen. I never had any side effects from it. But 2-3 years ago I started losing a lot of my hair and told my rheumy about it. Seeing that methotrexate is a chemo drug I could understand why I would think it would do this. So he took me off it and I started Imuran shortly after. I didn't find it to be as effective. Then I started having female problems and then wondered if maybe it was my hormones that caused my hair to fall out. Maybe a combo of both. I just don't know. I am now doing the Enbrel injections. Which have been working well.
Thanks for your reply. How long did it take for the methotrexate to take effect? Did you have any problems with mouth sores? My doc says thats a common side affect. I'm not being treated by a rheumatologist, at least not yet. I'm gonna ask about it next time I go in.
It was quite awhile when I first started it so I don't really remember how long it took for me to start feeling better. I know it was a few weeks though. No, I didn't have any problems with mouth sores. In fact, I didn't have any problems while taking it. Your doctor will probably have you take folic acid also because methotrexate can deplete the supply in your body. You will also need regular blood work done to keep a check on your liver. Good luck. I hope it helps you. Keep us informed.
Methotrexate may or may not help RA. It is given when NSAID's or other aids do not help. I put off taking it for a long time. You can drink no alcohol. It can affect the liver. You will be given blood tests. If you develop a dry cough, have problem breathing, you should call doctor, could affect lungs. Read up on metho on the net. Just type in methotrexate and enough material will pop up to fill a book. You will be given a prescription for 1 mg a day for folic acid. this will counter any problems you have with mouth sores. you will not take it the day you take your once a week metho. I also take MODUCARE to balance my T cell immune system. does it work? don't know. but read about that also. I have compromising and depressing my immune system in this way but have no choice. the pain is too great and will get worse. However, I have taken metho for six weeks now and do not feel much more relief. Dr. says it can take anywhere from 2 weeks to 3-4 months. That is quite a gap. THEY START WITH 7MG ((3 TABLETS OF 2.5 MG) and you can go as high as 20 mg once a week. Take all your vitamins and minerals and anti oxidants and bioflavenoids to keep your resistance up
My rheumatologist tells me mouth ulcers are a side effect of methatrexate but is also a symtom of arthritis itself so who knows which evil????????
Just be careful if the mouth ulcers get severe because that was my first sign of having a major allergic reaction to the drug i was on and i didn't recognise it till things got pretty scary.
I'm also about to start on methatrexate. I was under the impression that you could drink alcohol but time it carefully...like do it Saturday and take your weekly meds on Sunday. RA sufferers give up enough...i don't want to give up champagne too...yeh i want to be pain free but i want to enjoy life as well. Guess i'll soon find out if a balance can be reached.What do you think????
I took methotrexate for about 18 months - 12.5 per week and it was great. It took about 3 months to start working. My 1st rhematologist said take folic acid daily which I did, the 2nd said only take in 3 times a week as it can "hinder" the methotrexate. I was told not to drink but made the decision to - in moderation, I had monthly liver function tests and decided for me that I was willing to risk it - it needs to be an informed, personal decision. I have now been off meth. for 8 months as I am trying to start a family and you cannot do this on meth. as it causes birth defects. As a warning - my mother in law was put on meth. and had a fit after her first dose and so was told to take it over a period of 3 consecutive days?!
Thanks for the reply, you were encouraging. Aside from taking the folic acid, did you experience any other difficulties with meth? Also, would you recommend being treated by a rheumatologist as opposed to a general practitioner? I've only been on the meth for a couple of weeks and I don't go back for 10 days or so but I was wondering if I should ask to be referred to a rheumy? Do you think it makes a difference?
Hi Debbie-Do
I am still on Prednisoline and Vioxx anti inflamms until this new drug comes to the rescue. Tomorrow is my first dose of MTX at 7.5mg. I think i'll try to take it at night incase i feel sick...some have suggested to break spread the dose out through the day. I'm terrified but trying to gain as much knowledge as i can...sometimes wonder if it causes anxiety levels to rise or fall though. Liver function, Lymphoma, bone marrow etc doesn't stress me too much surprisingly as i feel like the docs are keeping that in check with reg blood tests. I've had some bad allergic reactions to the drugs they've put me on so far so i'm cautious but optimistic about mtx and i have few options left in AUS. My cousin is having inspiring results. I am worried about those less serious side effects that effect sense of well being and quality of life. It sounds vain i know but i would find losing my hair very distressing and i'm a real sun lover so with Summer fast approaching hope i don't develop sun over-sensitivity. I believe when used for chemo, doses are 100 X what we will be taking. Are you finding it's effecting your moods or appetite at all so far? Apparently certain mouth washes help minimise the sores and folic acid supps can alleviate other probs as mtx blocks the action of this vitamin. Another major concern is that because with RA the immune system attacks healthy tissue, mtx has to work by retarding the immune system, are we going to end up catching every other germ in the air? I'm a teacher so need high resistance to all those bugs that float around a classroom. I'm a healthy 35 year old apart from this recently diagnosed RA, which is effecting mostly my wrists and I'm desperate to get this thing under control cause i will not allow it to become the focus of my life for long. Please keep me informed on your progress. It's comforting to know someone is just a step ahead of you and hopefully making progress.
By the way i do see a Rheumatologist. It's so specific, GP's just don't have that sort of specialist expertise. But mine communicate well if a prob arises and my GP oversees my treatment in between Rheumy visits.
Hi A.C.! I'm up to 7.5 mg. mxt now and have yet to notice any changes except that there may be a decrease in my appetite. That could just be related to the pain that I'm having though. And that is one of my big problems right now. How to handle the pain. I tried Vioxx and bextra with no relief. At the moment I'm using extra strength tylenol for arthritis, it's lasts for about 8 hours. The biggest problem with that is that on a pain scale of 1 - 10 without the tylenol I'm at 10 and with it I'm only down to about 7. Plus since I can only take it twice a day,I save my second dose for bedtime so I can sleep better. It's better than nothing but I'm hoping to get something on Monday. Here's another thing. I have been having trouble with pain in my lungs since last weekend. My husband sort of made me go to the doc. They decided I have pleurisy which is an inflammation of the lining of the lung. So here's a question, is this just more of the arthtitis finding a new place to attack or is it because my immune system is so stressed? I probably won't ever know for sure. I do think the RA has found just about every joint on my body it can attack though. I woke up the other day and discovered my jaw now seems to be affected. Works great if you're trying to lose weight, especially in combination with the decreased appetite!! LOL I have to admit this is an incredibly frustrating disease though. I used to play softball, volleyball, I did alot of outdoor gardening and putzing in the yard. My husband and I would go on long hikes in the woods and now within a few months I can hardly hold a toothbrush to brush my teeth!! Getting dressed is a real treat too! Heck, just trying to get out of bed in the morning is real fun! I guess one comfort is in knowing I'm not the only one around with this problem.
[This message has been edited by Debbie-Do (edited 09-27-2003).]
D.D. Sounds like you are in a lot of pain. I remember it all too clearly before i went on prednisoline but being that cortisone is not so good for you, it can only be taken short term...but sure is an instant wonder drug that got me through the worst flare up. I couldn't wash my hair, let alone style it, writing my name was difficult, driving was dangerous, opening a can impossible. However prior to developing allergies to the drugs they tried me on so far, i was at times almost pain free and able to function normally - cook, do the gardening and even return to gym workouts SO be optimistic that you too will find the discovery that suits you. My cousin took 6 weeks for mtx to kick in but is cruising along smoothly now. I think we all believed that RA only affected joints initially, so i knew what it was when my wrists, fingers, elbows and ankles ceased up. It surprised me to learn that my sore eye (which felt like a sty) was infact RA and then tenderness in my breast was actually RA of the rib cartilege. So nothing will surprise me now. But i plan for this to be temporary, unfortunately it's not virul like they first thought but treatable so fingers crossed for us all. Thanks for responding. I know typing can cause the burn. I find the best thing for pain is exercise...(where possible) Yoga and walking... Those natural endorphines are released and you just feel better in yourself and sleep better too.
P.S Sounds bad i'm sure but i decided to put off starting mtx till next weekend. One of the benefits of being off drugs in between meant that i could get a small tattoo that i'd always wanted...maybe it's a rebellion thing against the disease...but i think i need a week to heal before the mtx enters my body...and a few last glasses of some sparkling...or is my husband right in that i'm just procrastinating?
I hope your tattoo turns out beautiful!!! I'm supposed to be going to Colorado in three weeks on an elk hunting trip with my husband so I'm really hoping to find something to take for the pain. I will probably ask to be put on prednisone for a month or so so that I can enjoy the trip. Good luck with your tattoo!!
Yeh i probably would too...my rheumy plans to keep me on prednisoline and anti inflamms (Vioxx) until the mtx has full effects (a couple of months). Pred works within days but i keep to a low dose (5-10mg) because it's something you have to wean off very very gradually again so your own natural immune system sort of reactivates or you can apparently can be susceptible to becoming very ill. It can also effect moods but when you're dealing with rollercoaster pain, it's hard to know which one to blame the crankiness on. Yep the tattoo is great, and healing perfectly. They say arthritis sufferers develop a high pain threshold and i think i must have. i guess when i'm in remission, (soon!!) i'll look back at it as a sign of fighting power. Give your body the rest it's screaming out for and pray for dry weather and i'm sure your trip will go well!
It's great to have something to strive for. All the best Debbie Do. Will keep an eye out on the board to see how you get on.
If you have been diagnosed with RA and are taking methotrexate, I definitely would NOT STAY WITH A GEN. PRACTIONER. See a recommended rheumatologist. They know the latest, although they do not deal with homeopathy methods, such as I am doing. I took myself off metho, because ONCE I DEPRESS MY IMMUNE SYSTEM, or put it to sleep, I cannot try the other methods such as CMO. But a GP, does not have the answers, they do not keep up on the studies of RA and should really, if they have any conscience, recommend you to a rheumatologist.
DD - def. see a rhemy, a real must. Also research etc as its good to see your rhemy with an idea of what you discuss / ask. Some thoughts about meds - I have been told that a combination of methotrexate & steriod work (I have a thing about not going on steroids but each to their own). Also has anyone mentioned remicade? I've read about it both very good & very bad and I think its available in the states (I'm from the UK and I don't think my local health service is using it yet - expense among other things). I read that this was designed to work alongside methotrexate for those where metho. alone didn't work???? All of these are stong meds though so pls make sure that you know what you're taking and what it can do to your body.
Have you thought about acupunture for the pain? Again I've heard that it can be really helpful.
Aussie - congrats on the tattoo - I too am a fan - and have a couple of discreet ones.
Hi all, Just wanted to put my 2 cents in. Had RA for 6 yrs. now. I have come to understand its not going away and my life has changed. But its not that bad. I dont go to work anymore (fortunately husband works.) I actually get to cook decent meals now. Lost 15 lbs. since I stopped working cause I dont sit all day. If I'm feeling decent I work in the garden. We still go out every weekend. Yes, there is some pain but I have the meds to treat that. Anyone with RA should definitelty be seeing a rheumatologist. I too was scared when I started mtx. Terrified actually. But I didnt have one side effect. I only stopped it because I like to have a few drinks. I hear people talking about tylenol, prednisone, vioxx, etc. It is important to understand these are only pain relievers and do not alter the disease. You need to be on a dmard or a biologic therapy also. I take enbrel now which is pretty good. I know it is not available to everyone. I am concerned about long term side effects. But that is why everyone should be under the care of a rheum. if possible, so you can be monitored properly. Its a horrible disease but I suppose it could be worse. Well, we are having lovely weather in NY so I am going out to walk the dog. Best wishes to all.
Thanks again DD, NY, DR and Sammy for your positive outlook. I agree, things could be so much worse. I just was reading through another arthritis board and commented to my husband about how obsessed some sufferers become as it becomes the focus of their life. At every change, i guess we all go through this. Yes, RA makes everything harder but like you guys, i'm not prepared to let it stop me from doing anything completely. I accept modifications are necessary and that i don't bounce back as well from a big day (or night) anymore...infact often need a day to recuperate in bed...but that's ok. I look forward to mtx having it's effect and also the day Australia gets drugs like embrel and remecade...and i look forward to Summer!! It's all about attitude and i think we share a good one. Keep things in perspective, keep moving and keep smiling! All the best!
Aussie Chick
Hey Debbie: Yes I've been on Mex for about 20 years, I think it's helped me the most. I've had RA since I was 4 and I'm 40 now. So I have experienced a lot of
drugs... I can tell you, if you have a chance to GET OFF predisone do it. It will save you in the long run.
I wish they had Mex back when I was little instead of prednisone...feel free to email anytime.
methotrexate 
