Methotrexate, anything good about this drug?

4/ 1/09 10:33pm

I was glad to see your post, I too, have just started the methotrexate and am curious to see what comments that you receive. I was told to continue to take the Celebrex twice daily along with the folic acid 1 mg. I am starting out with 3 tablets of methotrexate 2.5mg each one day a week. Are you taking celebrex or anything else for the RA? Thanks!

Laura

4/ 3/09 2:33pm

Hi Marji,

I hope you had a chance to read the comments already posted. I love this site. I think I learn more here than from any of the doctors. :>) I am starting on the 2.5 x 6 tablets once a week plus the folic acid. Seems as though I've heard more bad than good about the drug, but after reading the other posts today I feel much better. Hope it is helpful to you. Good luck!

Drumcorpmom

4/ 1/09 11:06pm

Hi,

I am new to this site and was reading your post. I have been on methotrexate since Nov. 08, and am presently on Remicade infusions. The only problem I have with methotrexate is slight blistering in my mouth, and this overall feeling of fatigue for about 24 hours after I take it. I take 6 tablets one day a week. I have been told that I have to continue taking methotrexate while I am on Remicade. I also have to say that methotrexate did nothing for me for the 3 1/2 months I was on it prior to starting the infusions. I am also on 10mg of prednisone a day and meloxicam for pain. I have not had much relief yet.

From reading other sites, this med affects different people different ways. I guess it depends on how sensitive your system is. I understand that it doesn't work overnight and that it has to build up in your system. I hope is works for you.

Keep us posted.

Paula

Laura

4/ 3/09 2:37pm

Thank you Paula,

I think you are absolutely right. That's the one thing Ihave learned is that each person is affected differently with the meds. My fear is losing my hair or weight gain. I really don't want to have blisters in my mouth either, but I have to stop the damage to my joints. I think I am going to make Friday my regular "med" day so that Saturday will be my down day, but that is also my cleaning day, so not sure, I guess I will play it by ear.

So after all this time, you aren't really getting alot of relief? Even with all the meds you are on?

Drumcorpmom

4/ 3/09 3:16pm

Hi,

The weight gain I had was from the Prednisone. I have found that I have lost hair, but not like a chemo patient would lose hair, my hairdresser says this is normal and to be expected.

As for relief, this week hasn't been a really good week. Stress comes into play quite a bit with this disease. It seems the more stress you are under, the worse you feel. The overall "heat" that I have felt in my hands and feet has subsided a bit with Remicade (my next infusion is in 2 weeks), but the pain in my hands have been really bad this week.

I take my methotrexate on Mondays, because I work too hard to be in bed all weekend and then go back to work on Monday. I have an understanding boss that I have worked for for 23 years. He is quite understanding (after I directed him to the RA website and he read what I was going through). I have not had to go to bed for a day after taking methotrexate, but you learn to listen to the signs your body is giving you and give in, otherwise the pain is worse.

I would HIGHLY recommend spending a few extra dollars a month for a cleaning lady. I have a big house and it is impossible to clean by myself so I have a cleaning lady that comes every 2 weeks and it is a godsend to me. I told my husband that it wouldn't be any other way.

Let me know how you feel after you take your first dose.

Paula

Lene Andersen, Health Guide

4/ 2/09 12:21pm

You bet! Remember that often, people don't share when things are good and it's only when there are problems that you seek out help. I was on methotrexate for two or three years, first pills, then injections and aside from feeling a bit tired and having some stomach issues (mostly nausea and heartburn) for a few days following my dose, I was fine. And best of all, it suppressed my arthritis, so my pain levels were manageable. I have a very sensitive stomach, so once the side effects started to become a real problem, we switched to injections and I took meth for another year after that. You may want to check out a post I wrote last year about managing side effects for tips on how to make yourself feel better.

Congratulations on having found a good rheumatologist!

Laura

4/ 3/09 2:41pm

Lene,

Thank you so much. It's so nice to hear positive things. I usually hear that it worked, but....

Yeah, Ijust want this disease suppressed so that I don't lose anymore joints. Right now my daily activities of life are limited (not by a great amount), but if I can keep it from getting worse, then that's what I need to do.

Ihave been so blessed in finding this site and I am grateful to all who post here and answer questions etc.

Thank you again!

Debra

4/ 2/09 10:13pm

I've been on Methotrexate for three years now, first pills, now a weekly injection. I had to keep increasing doses every six months to keep my RA under control and am now taking Enbrel too, but I've never had any side effects.

Laura

4/ 3/09 2:43pm

Thank you Debra for that information. It's so nice to hear good things.

I'm glad you are having success with it.

God Bless!

tessie

4/ 2/09 11:03pm

Laura, I'm so glad your appt went so well!

Did she give you folic acid to go along with the mtx?? It is supposed to help your liver and to help control side effects. If not, why not call her office and see if she will add some.

I am now on 10 pills a week (25mg), along with Plaquenil, Sulfasalazine, and Humira. Each time the dose was bumped up I felt a little better.

From my experience: I take mine at night before bed, after having a full meal. I drink more water than usual (or try to!) the day of taking it and the next day as well. It helps with headaches.

I now have my regularly scheduled "MTX MONDAYS" that my whole familyknows about! Because for me, I feel very drained on Monday after taking MTX on Sunday night. I give myself the 'day off' and take it easy, nap if I wanna, just chill. This side effect was much worse during the early months (I say months, because once it would subside a little, we ended up bumping the dosage up again).

I had trouble at the very beginning with my hair. It seemed to be falling out (this passed) ---not handfuls or anything, just noticeable. Then, because I color my hair, I noticed that my hair seemed to be courser and kinda bleached out. It was a mess (plus, I couldn't manage it being past my shoulders anymore)...I got it cut, hated it, and in a fit of RA-Psychosis (!!) I shaved it off! Not recommended, by the way !

But, like I said, I'm at max dose right now and it is very manageable and I think effective.

tess

Laura

4/ 3/09 2:50pm

Hi Tessie,

Thank you. Yes, she did also give me Folic Acid. Does everybody have the "drained" day? Why are you on so many different things? Sure seems like a lot! :<(

I didn't realize that Folic Acid was to help control the side effects. That is nice.

I will just be glad when all this gets into my system and I start to feel some relief. I want to be able to have a somewhat normal life. My new doc even says I may not have to have the surgery on my finger (joint replacement or fusion) right away. I hope not!

Have a great day!

LK

4/ 4/09 9:32pm

I have been taking Meth for 7 years with little or no problems, except for the stomach distress in the beginning. I also take Plaquenil every night. I am on a fairly low dose of both at this time. After initially gaining a lot of weight, I have been sticking pretty close to a wheat free/gluten free diet and have not only lost weight, but actually feel a lot better. I try to walk about 30 minutes a day and am very active with friends socially. It is also important that your friends are positive and fun to be around!

I also live at a high altitude, which is sometimes limiting, but I do as much outside activities as possible. Yes, I have some really painful days...my husband can attest to that, but most important, you have to maintain a positive attitude yourself. Good luck with your new treatment...stay healthy...take care, LK

Laura

4/ 7/09 4:30pm

What was your weight gain from? Most people don't say they have weight gain from Meth or Plaquenil. Were you also on Prednisone?

I was on Plaquenil for a time, but never felt any relief at all.

Thank you for your comments.

Veronica

4/ 5/09 5:08pm

Hi,

I have been on Metho for almost a year now. I was so scared when I was diagnosed and told I would be put on "chemo". I didnt go back to my DR for six months because I didn't want the meds..what a mistake. Now the x-rays show damage and the pain was so bad I didn't have a choice!

I am so glad I was put on the meds. I take 6 2.5mg once per week. At first I was nausated and Very tired the next day, but After about 6 weeks it didn't bother me anymore. Sometimes I get tired but no more so than working a hard day or something like that. I am also on embrel, folic acid, naproxen and vicodin. Feel so much better now. Occasionally get a flare up (around my period time, i wonder why?) but have prednisone in the medicine cabinet to control those. I am three weeks free of daily predisone. I am so glad because the facial hair was competing with my hubbies! lol.

Finally after a year of prednisone shots and oral I feel by finally not taking prednisone I am finally making progress of RA control. Good Luck, I guess were all different. I never had hair loss. No side effects from Enbrel either.

Laura

4/ 7/09 4:31pm

Thank you for your comments and congratulations on your progress with RA. Hopefully a year from now I will be in the same place.

Annette

4/ 9/09 11:03pm

I have been taking methotrexate for 15+ years. I felt quite unwell when I was taking it orally. So now I inject it myself. It is very easy and makes a difference when it does not go through the gastrointestinal system.

I take a gravol and inject it around 4:00 pm. Eventually I feel tired and a little queasy but when I wake up in the morning I am just a little out of sorts. I also do take folic acid. It is my basic drug and I have used quite an assortment of other Dmards over the years with it. Now I take Humira as well.

After 25 years of RA I can still work full time and rarely get sick. So it can be a good tool

Annette

Laura

4/10/09 11:31pm

Thank you. It's so nice to hear positive things. I'm a little worried about the hair loss. So far, haven't had a problem yet. This whole drug thing is so scarry. It's like I'm excited to finally get relief from all the pain, and hopefully get my life back, but on the other hand, it's scarry. Side effects are really scarry!

Thanks for your input.

Marjie

4/ 9/09 11:11pm

How is it going for you, Laura? I have only been on the methotrexate for 2 weeks and already find that I can't handle it. My doctor told me to go off it and see if I felt any better or not. I have felt so very weak and tired, just as tired and weak as I felt when I was going through cancer treatments etc. So we shall see if it was the medication or perhaps something else. I am curious to know if you have felt any side effects or not. Thanks!

Laura

4/10/09 11:34pm

I'm sorry it's not working. What is it that you can't handle? The nausia? This is my first week and so far I'm ok. I am mostly very tired. Doesn't help that I am working 10 hour days. I wish you luck with whatever you decide to do. Please keep me posted. Good Luck

Marjie

4/10/09 11:49pm

Good to hear back from you so soon, Laura! My first week, I took the meth, just 2.5 mg, 3x and was exhausted until Friday. This week same thing, today (Friday) I am so much better! I just don't have it in me right now to continue this drug, I have been sick for so long with fighting the RA, lung cancer, lung fungal infections blah, blah, blah. So I am going to see my RA doc May 8th. I have heard that the humira etc. shots are much better but docs are concerned about my prior fungal infections in the lung cavity (from radiation after resection) esp since the fungal infection went to my brain. Oh well, I am getting off the subject. Please keep us informed as to how you are handling this drug, I am more than curious. I have been reading some other posts about it and see that some say how it gets better with time so I am keeping that in mind.

Annette

4/11/09 8:36am

Really it is much easier to tolerate methotrexate by injection. It is like night and day for me. The pills made me feel so sick I could not barely tolerate taking the drug.

With the injections it is a minor inconvenience.

I think of it as my basic drug: others have been added or taken away as the years have gone by. I take the equivalent of 6-7 pills

Annette

Laura

4/12/09 8:08pm

Marjie,

I'm sorry it'snot working for you. It's too soon for me to say if it's going to work or not. So far, I have have a little nausia and am pretty tired, but not enough to keep me down. I still manage to do my usual work and house chores, just a little more tired than normal. I just wonder how long before it stops my pain. Today is worse than usual.

Wishing you lots of luck. Keep me posted as to what works for you.

Happy Easter!

Laura

4/12/09 8:11pm

Annette,

Do you inject yourself? I love the idea of bypassing the gastro area, but I feel very nervous about self injection.

Also, you may have already said this, but I was wondering what side effects you have had?

Anonymous

4/12/09 8:01pm

I have been on methotrexate for a little more than two months for RA diagnosed at age 60! I think I've had it for 3 or 4 years and I was misdiagnosed. I also am on prednisone which I am in the process of reducing (down to 8mg a day). I also started Enbrel 2 weeks ago (one injection a week). The Enbrel stings a little when I inject it but it seemed to make a huge difference in my energy level and pain reduction. Getting back to methotrexate, I would suggest that you can avoid mouth blisters, stomach problems and gastro by injecting methotrexate instead of taking pills. It took one teaching visit by the nurse practitioner at my clinic to show me the correct way to inject 3ml once a week into the skin in my stomach. No side effects other than a little hair thinning and a small amount of facial hair growth. I don't plan to take methotrexate forever but I do think injecting it is the the way to go to avoid some nasty side effects. The Enbrel seems to really work well so far. I know the risks but I feel a lot better. Hope this helps.

Laura

4/12/09 8:18pm

Hello and thank you for your story. It's funny, but these drugs really do differ in side effects from person to person. I want so badly to get rid of the pain and stop further joint damage, but I'm so afraid of the side effects. Some people have hardly any, but then other have it all. It's too early for me to tell what side effects I'm going to have. I'm praying that I don't have any.

So you were just diagnosed at 60? Did you have any other form of Arthritis before this?

Anonymous

4/13/09 3:41pm

Yes, and I also had lyme disease 3 years ago. I was treated for that and then, most of the symptoms subsided but then they slowly came back. No lyme disease anymore but also had a negative RA test 2 years ago and 3 months ago. After a few trips to the emergency room and near paralysis ( even after being on prednisone) I was given an MRI of my arm and everyone agreed it looks like classic RA. Apparently, in 20% of RA it doesn't show up in the serum test. It's called late onset non serum positive or something like that. I went to many doctors for the last 5 years or so who told me it was osteo arthritis, wear and tear, fibromyalgia, PMR and a host of other stuff. I was in physical therapy and scheduled for toe joint replacements. My hands were always swollen and achy. They took me off statin drugs suspecting it was that. It was RA all along. My point in writing for this site is to let people know that it is easy to inject once a week and has helped me greatly to manage pain and be productive. I never could have typed this much two months ago.

Laura

4/13/09 10:50pm

Well, I am so glad that you have found what works for you. I think I'm in the beginnng stages of what works for me. I do think that I will request the injectible type at my next meeting, but that isn't until the end of May.

God bless!

Anne

4/17/09 1:31pm

Hi Laura, I am just like you. I just took my second dose of methotrexate yesterday and I, too, am scared about the side effects. I am really learning alot from all the responses to your questions. I have been in denial about my RA. I am still reluctant because basically I am not in pain. I have a swollen wrist, and two swollen joints on my right hand. My hands are stiff in the am but only mildly. My blood work came back with way, elevated inflammation but my RA factor was neg. This is the second Doc who has given me the RA diagnosis and I want to prevent joint damage. I have had relatives with this disease and I know what it can do. I will be watching your progress and I'll post mine. Still nervous, but going ahead with it for now.

Laura

4/17/09 1:57pm

Hi Anne,

I'm really glad this was helpful to you as well. I also learn so much just from reading the questions and answers of others. Like yourself, I am not in great pain. I do have pain in certain areas that actually never goes away, but compared to others that I have read, I am doing pretty good. My main reason for the meds is fear of further joint damage also. How is the Methotrexate working for you so far?

swannie

5/31/09 9:55am

hi laura i am new to this site and i love it already its great to read other peoples stories it makes me feel better about my own problems with meds and RA etc,i have been on mtx now for 9 years with little side affects but ones i do have is not sleeping and feeling cranky and sick but after reading many stories i think i may ask my rhummie if i can inject it instead.i wish you all the best and hope mtx works for you i complain about taking the drug but hey if i didnt i would be far worse .....

Monica

6/17/09 9:07pm

Today was 3rd dose of MTX. I feel tired and like one of the pills got stuck in my throat and dissolved (which I don't think it did, maybe a little reflux or something). First time I've noticed something on the day I've taken the med. No relief yet for my inflammatory arthritis, but also no nausea either. Hair loss is starting but nothing that is totally alamring. I also think the hair loss is from the Plaquenil I was on before MTX, so who knows what it's really from. I hope to stick this out for 6-8 weeks to see if any relief comes my way. I am lucky in that I ditched my old Rheum, who was pretty much all about the steroids and that's it and was able to refer myself to the Johns Hopkins Arthritis Center. I figured they were so close to me, might as well take advantage of Hopkins! It was like night and day. The docs are great, and very thorough. I don't test pos. for RA, but have many markers for Lupus and Sclerodrema. However, given the inflammation that showed up in my hand MRI, they think I have some kind of inflammatory connective tissue disease. Here's hoping something works!!!

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