Do You Take Methotrexate for Rheumatoid Arthritis?
What about methotrexate and RA?
I answer that question frequently. People who are not taking methotrexate want to know how it feels and how it works. People who are already taking methotrexate for Rheumatoid Arthritis ask me how I deal with side effects. I’ve spent countless hours writing replies to questions about methotrexate and RA – everything from side effects to benefits to dangers…
From what I have read, about 90% of Rheumatoid Arthritis patients take methotrexate at some point. Methotrexate is the most prescribed disease modifying drug. And people tend to take methotrexate for a longer term than other drugs.
I have now published my answers to “frequently asked questions about methotrexate.” I hope that you find it helpful. There are currently 7 articles in these new Methotrexate & RA pages, including “13 Things to Consider Before Flushing Methothrexate.”
As I wrote recently, you are the manager of your treatment. Although it is the physician who prescribes methotrexate for Rheumatoid Arthritis (or other autoimmune disease), you are the one who has to swallow the pills. My goal is to encourage you to learn as much you can and make the best decisions possible for you. And that is one reason why this website is dedicated to bringing inspiration and encouragement to fight Rheumatoid Arthritis.
Click on the Methotrexate tag or on Methotrexate and RA on the menu:
Frequently asked questions about Methotrexate and Rheumatoid Arthritis
Is Methotrexate a Villain or Vanquisher? Methotrexate is the most commonly prescribed disease-fighting drug for Rheumatoid Arthritis. I am asked so many questions about methotrexate. Here, I have provided a basic overview of issues…
I have been taking methotrexate for a little over a year, and I think I am doing really well on it. This surprises me because I don’t have a strong stomach. I take my big dose on Wednesday, but I find that Thursday is the day I need to plan for. I need to make sure I eat well so that nothing upsets my stomach. My much loved (and needed) coffee needs to be in the midday/afternoon not morning. No fruits, fried foods or acids – all steps to keep my stomach calm.
I try hard to schedule my life so that I can go to bed early on Thursdays. If I don’t do these things, then a lousy Thursday turns into a lousy Friday…
MTX was once in my medical regimine. The side effects for me were almost worse than RA and my doc switched me to biologics. Like many, I have mixed feelings about it. I know it provides relief for many (including a close friend with psoriatic arthritis). Some tolerate the side effects, others don’t. Like so many early RA medications, MTX’s effect on RA seems to be a mystery and it was not originally developed to treat RA. That’s why developing drugs specifically targeted at RA is so important. Thanks Kelly for writing this.
By the way, are you still taking Enbrel? I’ve been on it since March at which time it had a huge impact on me. But RA symptoms are returning and now I am now starting to think I’m back to looking at the next treatment.
Do you need to stop taking metho for a period of time prior to one’s weekly dose of metho and also for a period of time following the shot?
Mark, I am not sure what you are asking? Do you mean switching from oral to injectable? The doc can give you an exact schedule. I did not ever stop mtx except when I got an actual kidney infection. But many people are told to stop for any illness at all. What did the dr say?
I meant to say before getting a flu shot! Sorry about that!
:lashes: aha. There’s differing opinions on that. If it’s shot w/out a live virus, my understanding is that docs would let you take it without changes in meds. The important thing is that any doc or pharmacist who treats you knows about your mtx. Inform / remind them every time.
The biggest side effect for me has been hair loss. Since it is a chemotherapy drug for kids, I still have my hair – -but I have HUGE bald spot on the top of my head.This RA is making me realize how vain I am. I had no idea!!
I was on MTX for 7 months until the mouth sores got so numerous and large (despite 2 mgs of Folic Acid daily and leucovorin weekly)it made talking and eating very painful. My last dose was 8-30 and my mouth has just healed. I am amazed at how quickly my pain and stiffness has come back. We are trying leflunomide now.
I have been on injectable MTX for over a year now. I would go to the top of the Statue of Libery, the Sears Tower, The Eiffel tower, the Space Needle- you name it- to sing the praises of MTX in my life. Since starting the drug I was able to tie shoelaces (twice even) for the first time in four years! Now- I can’t all the time, but the rest of me feels a heck of a lot better too. I take 1mg of folic acid daily and inject my MTX on Sunday morning (around 6am) to give myself a full day to relax and sleep- exhaustion and VERY vivid dreams during my naps on Sunday are my biggest side effects. We do injectable because I had an allergic reaction to Arava and Meloxicam and my Rheumy didn’t want to add anything more, especially at that dose, to my digestive system. Though I am on Enbrel, tramadol and cyclobenzaprine (I have Fibro too) MTX has made the biggest difference of any of the many therapies we have tried. I will fight tooth and nail before they ever get me off of this drug. LOL
I’ve been taking mtx for approx 2.5 years now & its been an absolute godsend.
Thankfully i’ve never been troubled much by nasty side effects though sometimes i feel a bit rough the day after taking it – its a small price to pay for having an almost normal life 🙂
I was diagnosed in July 2009 and put on MTX 25 mg weekly.Its not helping yet. Rheumy Dr has now put me on injectable, which is fantastic since I am a needle phobe ;). Oh well, I will do just about anything to feel better. On my 6th course of high dose Prednisone to keep the inflammation at bay and it seems that that is no longer working. Waiting for eye doc to see if I can take Plaquenil too. Why do these medical professionals leave us in the dark?
I started giving myself the weekly methotrexate injections about a month ago…little did I know that the needle was going to play mind games with me….Aside from having to “get my nerve up”, the medicine itself has not been bad at all. I have noticed hair thinning (well more like pulling a small cat out of the drain after it starting clogging up!) but that may have already been happening due to thyroid issues. I stopped taking Plaquenil because of constant nausea and just feeling rotten. These injections have bypassed the stomach issues and I think that’s great. My most recent shot was given at bedtime and I think that was a good idea also as I need to lie down anyway right after the needle stick! I haven’t had any notable change in fatigue… no real improvement either, but I’m only a month into this regimen. My main complaint now is my feet… getting up after sitting for a while is not easy, but I know it could also be much, much worse. The rest of my body feels pretty good so I feel good about that!
Jenny,
Hope it gets easier. It will never be fun, but you wiil get more used to it, I think. Bedtime is a good idea too.
thank you Kelly, for what you do for us. I’ve taken metho for 14 years. I just learned a whole lot about it that wasn’t clear to me before reading your well written words
Methotrexate was the first RA med which my doctor put me on. When it began to take affect, I was thrilled to be out of pain. It continues to be fundamental to my treatment.
I had discussed the possibility of trying to get pregnant sometime in the future. In order to do that, I would have to stop taking MTX before hand. Just to see what my body would think about that, I stopped taking MTX for only a few weeks in the spring. The pain came back!! I started back on it immediately and thankfully it continues to work well.
Sometimes, I think we should call it a heartbreak drug. You can’t have a baby or even think of it. You can’t nurse your baby, if you have one already… For women of childbearing years ( the chief targets of RA), it is a heartbreaker.
Kelly…this is a FANTASTIC site…good work!!!
I started taking Kineret (an oldie goldie) in July after trying a host of other drugs…Mx, Embrel, Humira, Cyclosporine…I am much better in some areas. Not for the faint of heart tho…it requires a daily injection. EEK!
Can’t get off the pred which is causing huge problems with bone issues even though I also inject Forteo daily.
Thanks.
Kelly, et al …
I’ve been diagnosed with R.A. I was very very wary about MXT and the doctors at Mayo consented to letting me try minocycline instead, which seemed to work for a while. Then not. And thing are worsening.
I’ve been told that I now need to jump in the deep end and get on MXT. But I’m terrified.
I live overseas (Pakistan) where the medical profession can be laissez faire in the extreme (if that’s not mixed of a metaphor). I bought the MXT, but it’s from Korea United Pharma, and the Folic Acid is from Zara (Pak). I’m concerned too about prof’l level of the lab work.
I’m got bad asthma, and am concerned about the issue of immune suppression.
Has anyone had experience w/ taking this drug in the developing world?
I’m really on the horns of a dilemma, because if I shouldn’t be taking this here, I need to leave and which means unemployment.
Does anyone have any guidance re yr own experiences?
All the very best and thank you, Kelly.
Regards,
Dear jmccarthy,
Methotrexate has been a wonder drug for Rheumatoid arthritis & remains the anchor drug for RA despite all the advances we have made. If used properly, it is definitely a very safe drug. Methotrexate is started right at the onset & not at the fag/ deep end of the disease. Probably things would have been different if You had taken methotrexate at Mayo itself. Follow up regularly with your Rheumatologist. He would be the right person to monitor the effects of methotrexate.
Methotrexate does not worsen asthma. As a Rheumatologist from India, I can assure that immunosupression or the issues of tuberculosis are not very common with methotrexate.
So, go ahead, make the right decision, start with methotrexate. This is probably the turning point in your RA course you are looking for.
You may log onto http://arthritissupportboard.com/Methotrexate.aspx
http://arthritissupportboard.com/how_to_overcome_nausea_related_to_methotrexate.aspx for more information regarding methotrexate.
Dear Dr. Akerkar:
Are you aware of who’s who in world of rheumatology in Pakistan? I’m very concerned about the level of care here and the quality of the drug I’m having to procure.
I’m very wary about getting into this treatment here. I have an extremely high pressure job and if I can’t function or be able to rely on the medical profession with a high degree of confidence I truly wonder about the wisdom of getting treated here. If you have any guidance, I’d be very appreciative.
All very best,
Julie
Julie,
It seems that part of your concern the quality of the drug. Maybe you could talk to a pharmacist in the US about that. Do you have a relative here in USA who could help you get in touch with one. Methotrexate is a drug which has been around a long time, so it seems like it’s pretty straightforward. Otherwise, can you get the doctor to write that a specific brand is required and then you can know for sure. The only thing I can tell you for sure is that the brands can vary a little, so it’s best to try to stay with the same one each time.
For your labs, the liver profiles are also a pretty old and straightforward test. Maybe you could do them more frequently if you don’t trust the lab. Do you ever travel; can you schedule labs for when you travel to a better location?
Best of luck to you!
Take care of yourself,
Kelly
I dont know much about Rheumatology in pakistan.
U can try getting in touch with your mayo clinic Rheumie. He has seen your RA for quite some time & would know your RA charcteristics. Keep mailing him all your prescriptions. That, I’m sure would help you take decisions & add a lot on the confidence front as well.
For any queries/ guidance, feel free to get back to me.
You may also join me on twitter http://twitter.com/doctorakerkar
I would like to reiterate that starting methotrexate is not a bad idea at all & would probably the turning point you are looking for.
I have been taking methotrexate for six years.I take the drug on a wednesday,I take a drink of water followed by half a banana,then methotrexate,followed by half a banana,I then drink one litre of water over the next 30 minuts,I do this to flush the mtx through my kidneys.for me mtx as got me out of a wheelchair,my doctor told without this drug I would be back in a wheelchair.within weeks.dont give up on this drug it took 2 years to work for me by gradualy increasing the dose.
Good advice, Alan.
Hi Alan,
Was it really 2 years before the MTX started working for you?? i’ve been on it since mid dec and was told that at a full dose after 2 months i’ll be seein as good as it gets.. i;m still ettin a lot of pain daily so i hope there is still achance it’ll kick in more!
Hey Ed, just noticed this comment was not answered. How are you doing? From what I’ve read and docs have told me, 2 months is far too soon to know. I’ve read studies & known people who say they continued to improve for up to a year or more on mtx. Also, after a time, the dose may be changed. Even other meds work better with it, so even if it’s not enough, it’s usually continued. Hope this helps some.
I’m slowly working my way through some of the information on this blog. It has been recommended that I take Meth.. for the last year or so but I have been avoiding a decision. I’m still confused though. I’ve recently had a hole in my retina and as a result of that surgery a teeny cataract just grew by leaps and bounds and has now been removed. Fairly unsuccessfully since I still have blurry vision 4 weeks post op. Now I’m wondering if this is connected to RA somehow. I’ve managed thus far with just Ibuprofen, Diflunisal, Tylenol 3 when it gets really bad and occasionally 6 days of Prednisone. I think though the time has come for more serious medications since nothing really seems to work anymore. I’m pretty much at the end of my rope..ciao
Hi Rositta,
Hope your eye gets better. That sounds annoying. The meds you mention are for symptoms. If you have RA, it needs to be treated with a disease treatment first. One of the very first posts I wrote last year was about that. Click here to see. As for the methotrexate, did you see the Mtx pages up on the menu at the top?
Sorry to hear you are at the end of your rope. Hopefully if you can hang on it will get better. 🙂
Diagonosed in Nov of last year. RA got really bad in Feb. with hands, feet and knees constantly swollen and in pain. I just started on methotrexate February 16th. For a few days after my first dose my RA was much worse–could barely function. Now, within the past 4 or 5 days, the swelling is gone in my hands, only my right index finger hurts but it’s only a slight annoying pain and no where near what it use to be–for a while I couldn’t use it at all. Feet get slightly swollen and really only hurt if I am on them for long periods. When I wake up I have slight stiffness in my joints but it is now only lasting 30 minutes or less where it use to be up to 2 hours or more.
I’m not taking any other meds at this time except for folic acid and vitamin D.
I don’t seem my Dr. again until March 30th so what I’m looking for is to see if this means the methotrexate IS working for me? Or could this just be a remission of sorts. Anyone else care to share their experience? I would greatly appreciate it!! I’m so new to this I just don’t know what to expect. Thanks!
Sherron,
It does sound like the mtx is helping. For many people, the disease goes up and down. It makes it hard for them to know what is helping since it’s a moving target.
I would not try to distinguish between “mtx working” and a “remission of sorts.” When the medicine works, they call it a clinical remission. And even if there is a complete “remission,” it is recommended that some treatment continue to prevent a return that may even be worse. If RA gets controlled, it is important to keep it controlled.
Here is a 3 part post on remission if you haven’t seen it yet.
I’ve too been diagnosed with RA November 2009, after suffering since very badly June last year. I started off on Sulphasalzine back in Nov but didn’t make much difference. Saw the Rheumatologist last week who has prescribed Mtx but I’ve to keep taking the Sulphasalzine also, is this normal? Took the first dose of Mtx last Monday and was violently sick couple hrs later. Not sure if it was the Mtx or was a bug. Taken it again today, so far so good no sickness. I’m also on a 7.5mg maintenance dose of Prednisolone which will last for a further few weeks. But tbh I’m still in pain and I’ve just got an appointment in to go for a corticosteroid injection in my knee, which is causing me much pain sometimes impossible to walk. Just so many meds to take at the one time and get my head round, Rheumatologist not that great at explaining everything!
My grandma is 84 and she has many health problems in addition to RA. She has been on Prednisone for 5 years and her doctor is considering switching her to mtx (the prednisone has led to extreme weight gain and diabetes among many other side effects). Does anyone know if it is possible to be on both at one time? She is in so much pain when they drop the prednisone levels that I can’t imagine her being able to switch, especially for the year that it takes mtx to fully kick in.
Also, it sounds like the side effects are pretty manageable from most of the comments, but does anyone know anything about how the elderly deal with them?
Thanks for any answers you have. This is a fantastic site, and I really appreciate all the work you’ve put into it! Just hoping we can figure out something to make my grandma feel better!
Jackie, methotrexate & prednisone are used together very often. I wonder what are her “many health problems due to RA” are. If it is damage due to the RA, then the mtx will not just reverse damage – but it could still help her function better. When someone has used prednisone a long time, often the “health problems” that are blamed on RA are actually from prednisone. I know someone that age who cannot stop using prednisone either – this friend has tried very hard. Maybe dr can help your grandmother to at least reduce the pred – very gradually. She is lucky to make it to that age with RA & she is lucky to have you who care so much!
My 9 year old son has RA and he will be taking his 2nd dose of MTX tonight….He hasnt been feeling very good in the las week and he hasnt ate very much…is that normal the Dr told me this wouldnt happen because he is on a small dose.
Sheri, sorry to hear about your son & RA. The RA itself causes lack of appetite. The mtx should help improve symptoms, but it will take a couple of weeks to start working. The mtx can cause nausea & that will also affect how much one eats. Does he have a tummy ache? I have a suggestion, but run it by your dr, ok? Very often, it helps to take an acid reducer daily w/ breakfast to prevent stomach issues with these medicines. Also, chewing a piece of a pepto-bismol type tablet can make nausea go away quickly. There is a page of side effect ideas – click here.
Hi, Thanks for the great info. I was diagnosed with RA 9 months ago. Tried relafin to start with, didn’t help. Then put on lodine and had allergic reaction (hives), Went for about 3 months with no meds at all. Could barely move after staying in one position for any time, couldn’t stand or walk for more than a few minutes, blah, blah, blah..you know the drill. Finally was prescribed mtx and celebrex last week. Taken one dose of mtx, take 2 celebrex daily. My Dr. didn’t prescribe folic acid. Should I ask him about that or wait to see if I have side effects. Also, I’m concerned about being around sick people. I work in a very small room where there is often someone who has a cold or something. Do I need to be concerned about this?
Dear Angela, in the last several months I’ve only met a very few folks on methotrexate who were not on folic acid yet. In every case I know of, it was prescribed after that. Sometimes, I’ve heard it is a clerical oversight. I am not a doctor, but I have never heard of a circumstance in which folic acid is not needed. Methotrexate is an “antifolate” & it has been known for decades, I think, that folic acid supplementation can prevent or alleviate side effects of methotrexate without making the mtx ineffective. You should perhaps ask the doctor why it was not prescribed. If my folic acid prescription is late by the mail pharmacy, I use an OTC version (it is a B vitamin) until it arrives. I would not take mtx without folic acid. Yes, avoiding infection is a good idea, but most who take mtx are able to be in public with common sense precautions. Did you read the Preventative First Aid post? Here is the link.
Note to readers of this post: Please find the disclaimer of this website in the footer of this and every page.
My mother has RA and does bursts of methrotrexate on Mondays and it tends to make her a little moody and less energetic. However, as fas as the inflammation and pain it is definitely better. Before my mother started taking methrotrexate she couldnt even get out of bed somedays and now she is able to plant flowers in her garden with me as a hobby. I would say that methrotrexate’s side effects are worth the annoyance (hair loss and skin changes) because she doesnt need to be hospitalized for the pain anymore. She does say the nausea is fairly bad. She also is taking folic acid which we (myself and my mother) both take and its a great drug. She did start taking Humira injected which are tremendous but EXPENSIVE.
Hi Tayler, I’m glad that your mom is doing better. Some of the side effects you mention (moodiness, skin) sound like side effects for prednisone. Has she taken that too? I’m glad to hear she is taking her folic acid. Did you know it is actually a vitamin? If her methotrexate side effects are still bothersome, she can also talk to her doctor about increasing the folic acid dose. Often, that helps. Humira should help her a lot – you are right – it is expensive. What a good daughter you are to read articles like this for your mom.
It has been interesting to me to read these comments about methotrexate–I’ve been on and off it for 25-30 years at least, and on it steadily for the last 15-20, as part of a RA cocktail: embrel, metho, prednisone (5 mg), mobic and folic acid, of course. The 1st time it was prescribed I had to tell my rheumie that I needed to be taking folic acid! He was embarrassed, as well he should have been! I was reminded by these posts that I stopped because of the mouth sores and fatigue afterwards. Had completely forgotten, because I haven’t had either symptom for so many years now. I should probably clarify that I have several medical conditions & drugs for them as well that cause fatigue (Celiac, atrial fib, pacemaker for syncope, neuropathies, degenerative spine/stenosis) so that I just laugh now when a doc tells me “this is going to make you tired.” “How will I know?” I ask.
That’s funny. I say the same thing about the weather and RA. People ask if it gets worse w/ weather fronts & I say, “It’s always worse. How would I know?”
I started on MTX I think in August last year. I’m on 25mg a week, folic acid, vitamin D etc. I also take Sulfasalazine and have just been started on Arava as well because my symptoms haven’t really changed in all this time. I am losing my hair a bit but don’t really find I have any other side effects. Could be I’m just generally moody hey 🙂 I was nauseous when I first started the Sulfa and the Arava, but thank goodness that has disappeared.
Actually now I’m pondering it, I think it has wrecked my menstrual cycle… sorry if TMI. But I guess that could be because of the combination of drugs. Any thoughts on this anyone?
Hi Joye, someone else recently mentioned that me, too. But I have not read any scientific report on it. I’ll keep an eye out – some weird symtpoms are actually the RA and some turn out to be the medicines. As far as your hair goes, many find out that more folic acid helps that. There is a wide range of dosing with that, so maybe bring that up to your doc. How much do you take now?
Hi all…I have had R.A since 2005, I am 26.
My arthritis has been very aggresive over the years having flare ups in my hands,elbows,knees,ankles,feey that bad at times i could not use my hands or walk!! I have been on methotrexate 20mg since february 2008, and infusions of ritiximab(mabthera)every 6 months my arthritis is stable and the best it has ever been!! Although despite me being the best i have been in years, I would really like to get off both and try a natural alternative. I recently spoke to my Rheumatologist about having children and i have to be off methotrexatefor atleast 3 months as it causes birth defects. For the past 3 months i have had problems with my mouth, the skin on the roof of my mouth is constanlty raw and for the past year my skin has pigmented due to being out in the sun and on methotrexate, my stomache is always bloated too. It says on the bottle of my methotrexate tablets to wash my hands immediatly after taking so i would hate to know what it is doing to he inside of my body!! Has anybody tried chinese medicine?? I also was diagnosed with cushings syndrome last year due to being on prednisilone for 3 and a half years and cortisole injections which has been horrible causing me to gain weight and have really bad inssomnia, moon face and a irregular menstral cycle so be careful if you are on prednisilone!! I have also been on various others medicaions none lasting more than a months or two…
I hope they will find a cure for this disease!!
Hi Olymbia. 😀
I hope that you will be able to have a baby. Have you read the pregnancy post? I’ll get the link and put it here – click here.
As far as I’ve learned, there is not an alternative to methotrexate to help treat RA. This is the most effective & safest that we have – like you said, we REALLY need a cure. If you have RA that is moderate to severe, it will affect more than your joints and treatment may help to protect your health and joints. I know that’s not what you’d really wish to hear. I’m sorry. I’ll put a link here about natural treatments too in case it helps – click here. There are several other links on that page about natural cures for RA.
Good luck to you.
Thankyou Kelly,
I think the most disturbing thing about wanting children is that you dont know in 10 years time if you are going to be able to walk, play with your children ect.
I will have a look at the attatchment you sent with natural medicines hopefully i can find one that works!!
Such hard decisions. I hope it would never be this way for you, but it’s my older kids who actually do so much to take care of me now. It’s sometimes sad the things I can’t do w/ the youngest that I did w/ the others. But, we do find other joys. He is a joy.
can you have hair loss from methatrexate? i take 4 tablets a week?
yes, Sonia, it can be a side effect. Sometimes that’s improved by increasing folic acid. People take between 1 and 5 mg per day. Maybe you can ask your doctor if its a good idea if you take more of this B vitamin. You are taking some right? I hate it when I find patients who weren’t prescribed any. Also, I recommend the Methotrexate pages – link up on the red menu. There are whole pages about side effects. Also this link – click here.
Taking my first does of Methotrexate tonight.
wish me luck! hopefully will have no or limited side effects!
Good luck! I hope it helps! I had little or no side effects with it for a long time. (Still not enough to stop.)
I’ve been on Methotrexate for about 2 months.I tried it once before, but could not get past the first 2 weeks of therapy. I thought I was going to die.I was nauseated to the point that moving my head would make me toss my cookies.Knowing what the drug did to me the first time, I waited until my boyfriend was out of town and took it then(to spare him).For 4 days I could do nothing but lay in my bed motionless, well almost; but when I did move even to just change positions, I was vomiting. My doctor phoned in a RX for nausea med, I drove to the drive through pharmacy with a bucket in my car. The pharmacy tech said “we just got this, it will be about an hour”. I parked my car, got out, in my yoga pants, tank top, robe and slippers. I carried my bucket inside and sat by the pharmacy window. I had my prescription in about 5 minutes. My doctor also assured me that the 1 mg Folic acid he had prescribed would ward off those side effects. NOT!! I read as much as I could about the drug, what other RA patients had to say, and increased my folic acid to 5 mg per day, took it 6 hours before the dose of Mtx, and the side effects were much less. I can’t believe I forgot to mention, that after the first week, I had absolutely NO joint pain whatsoever. But I was also on Bridge therapy with prednisone. Prior to the mtx, everyday was a new set of joints that were inflamed,and it was debilitating. A week prior to this, during an especially bad flare, I was told that some of the nurses on the other shift were “concerned that I was not physically capable” of doing my job with this condition. I was devastated.This disease had already changed everything about my life, and I’m not ready to let it take my career. I took the next dose, and the side effects were even less. The following week, I didn’t even worry that it would affect me at all, and it didn’t. I would suggest learning all you can, being prepared for anything.Having RA, we are all pros at “preparing for a flare”. So if one decides to take Methotrexate, have everything arranged; days off from work, gatorade, juice, water, tea, crackers, nausea medicine.It would be nice to have someone to hold your hair too. But in weighing the benefits with the risks, I am so glad that I stuck with it. They always say “live for today” and that is what we have to do. I will do anything to not have the pain and the deformity that RA brings, and to not have to explain my varying symptoms to those who don’t care to understand. For me, so far, methotrexate has given me back some of my life.
I have been on mtx for about 10 years now for both RA and psoriasis. I just switched from pills to injections about 2 months ago and I have to say after reading all the posts I now realize just how lucky I am. I have never had any of the many reactions or side effects that others have..which surprises me since I normally get all the bad side effects that one can get! I think this is a great site and will check back often. Thanks to all of my fellow RA’ers for your honest comments and opinions!
I start MEXOTREXATE theraphy on the 20th of April for my RA. Not sure what to expect, just looking for some reassurance that this drug will work.
Tanya, I can’t say that it will work for you, but it did work for me. I was likewise afraid, worried, and anxious about the side-effects, and did experience some pretty rough patches as I got used to it, but I’m glad I got through it as my quality of life, and especially my mobility, was improved. Kelly’s kind words helped a lot before I took that first dose! Looking back at it now, I think in some ways it was what being prescribed MTX meant that was the worst part–that I’m sick, that it’s serious, that I need a powerful medication to help me.. I still feel that way, but am grateful that my rheummy recognized the necessity even if I was in that bizzaro state of denial mixed with desperation.
I was diagnosed with RA yesterday. I am to start taking 6 pills once a week of Methotrexate 2.5 mg. 1 tab of folic acid 1 mg. everyday and 2 naproxen 500 mg. a day. I am scared. I am scared of side effects or damage to other organs. I am also scared of this disease and what to expect.
I have had RA for 4 years. I started MTX orally. I felt nauseated and tired. I switched to the injectible and it has had a very beneficial impact on my life. Folic acid is a must, I can tell the moment I miss a dose. The other benefit according to my DR regarding the injectible is how your body processes the drug. It is more consistent than the tablets.
I was diagnosed with RA 6 weeks ago and my rheumatologist put me straighton MTX… at that time my fingers and hands were very swollen and stiff and my ankles were so swollen i felt like SHREK!…. i took 4 tablets once a week. the first 2 treatmens i actually felt worse the next day with joint pain and fatigue…. i would take a hot water bottle which is in a fluffy rabbit cover and just lay down holding that between my hands…. but besides those couple of rough days the imporovement is really drastic. all the swelling has gone down my fingers and hands are flexible and i don;t have any pain…. some of my fingers are a bit numb and tingly and it sort of comes and goes and they are sensitive, but compared to how it was a huge difference… i have just finished a 5 week treatment of MTX and have to go back to doctors…. will see what happens next!
Migraines & MTX: I just had to quit MTX one month ago. I struggled with it from the beginning (was on it for 4 months) w/nausea, diarrhea, and stomach cramps. Tried both oral and injection. But the worst problem turned out to be migraines. I began getting migraines the day after the dose – and after a couple of months of weekly 1-2 day migraines, my body just couldn’t take it and went into a 3-week migraine (I have migraine history but had not been having any prior to the MTX). Migraines are gone now since I stopped MTX. Lowering the dose of MTX from 15 mg to 7.5 mg and increasing folic acid didn’t help the migraine situation.
I think I stayed on the MTX longer than I should have because (a) it was helping my RA somewhat and (b) I read so much about how important it is to do combo therapy. My doctor enocouraged me to drop it prior to the 3-week migraine but I tried to tough it out.
I was also on Humira for 2 months at the time I dropped MTX. Over the last month, on Humira alone and no MTX, my RA has gotten rapidly worse — more pain in more joints, more exhaustion. We’ve decided Humira isn’t working, so I start Enbrel this weekend.
Unfortunately not everyone can tolerate MTX. I tried every suggestion I could find on this site and others for dealing with side effects (and conquered most of the side effects) but the 3-week migraine was a nightmare.
I had no liver side effects from MTX (and drank no alcohol), which was good because I’ve had liver problems with other medications.
This is not to discourage anyone from taking MTX. It’s obviously an important RA drug and I wish I could tolerate it. But I also wish I had listened to my body and my doctor a little sooner. Hopefully Enbrel will work for me!
I was diagnosed several years ago by an RA blood test but because I showed no real discomfort it wasn’t treated. Last September I began to have some isolated pain and by February is was unbearable. I began seeing a rheumy who prescribed MTX. I only took it for 2 weeks then had a positive PPD skin test and although I did not have an active case of TB, I had to start taking INH. Being on 2 meds that can cause liver problems I became worried and stopped the MTX for 2 weeks. I did resume the MTX but my rheumy decreased by dose to 4 pills per week along with sulfasalizine and plaquenil. I have been taking these 3 drugs for about 2 1/2 months consistently. I saw my rheumy today and he is ready to move me to Orencia. The cost along with the side effects has sent me into another whirlwind. I feel that I have not been on the MTX long enough and compared to most people, I am on a very low dose. My liver enzymes are well below normal so I feel as though I should have a little wiggle room to see if increasing my MTX dose would provide better results.
Any comments would be appreciated.
I think my rheumy is trying to over treat me. I do not even believe I have RA. My left knee hurt last fall and I was tired so my family dr. ran labs and he said he thought I had some type of arthritis.I see my rheumatologist and he runs more labs and says you definetly have Sjogrens and maybe some type of over lap syndrome. Possibly RA or lupus. I get a chest X-ray which is normal, feet and hands xray, it is good, no erosion. Then a few months later he talks about me starting methotrexate with Plaquenil. I said why. He syas you have RA, I said since when, he says “you have it”. I do not have symmetrical joint pain, I have no pain, I have no limp, I do everything I want. My last lab shows a high TSH so my family dr. has put me on levothyroid. I believe I only have the Sjogrens and a low thyroid, not RA. So 2 months ago I stopped my MTX and have noticed –nothing. Just because I had a high rheumatoid factor and barely elevated sed ate, he got all fired up to treat me aggressively. Said things like,your gonna get vasculitis, eyes will disenigrate, heart and lungs will get fibrotic,etc…be in a wheel chair. I think my Sjogrens which besides dry eye/mouthh also causes joint pain annd low thyroid can cause joint pain. That is what is going on.
My beilef is, don’t cram a pill down your throat just because someone uses scare tactics on you. Think for yourself first, no knee jerk decisions.
Hi Shelly, this is certainly unusual. I hear the opposite all day long. Have you seen your anti-ccp labs? This test is the most specific blood test for RA that we have – that may be what convinced him. You certainly should have treatment that is as aggressive as you agree is appropriate and not feel bullied.
Yes. He gives me copies of everything. My CCP was 3, anything less than 20 in negative. My anti dsDNA was 5, with anything under 25 negative. Any test for Lupus was also negative.
My Rf factor was 144, anything greater than 20 was high, my sedrate was 33, anything over 30 was high.
I had 12 vials of blood drawn my first visit. He gave me a definitive Sjogrens diagnosis with the first labs, and somewhere down the line he changed it to RA.
I work part time, my prefernce on that. I garden all by myself, moved my whole livingroom furniture around today, mow with a push mower,etc…
This all started because my right knee hurt. On your website I see stories of agonizing pain, disabilty and can’t see it in my case. I have a appt with my RA dr. in less than 2 weeks, not sure if I even need to go.
I see no one on your site that has a story like mine.
Shelly, I have seen a few people with RA and a story like yours, but that’s not the key thing. The key thing is getting the treatment that you need – to more or less than that. The Rf and the ESR to indicate that there’s something going on. Why are the ccp antibodies low? Maybe because it’s not RA, but Sjog. And maybe because it’s too early to tell. There are people who don’t ever show Rf or ccp after years of RA. Whichever it is, what matters is that you are monitored & get the care that you feel is appropriate. I hope it stays as benign as it seems to be now!
Agree with what Kelly said. However if your SED rate was pretty darn high. Of course that could be from other things, but does include cancer, vasculitis and infections. You should get that rechecked. Much depends on your age and other co-morbidities too. Perhaps you could get some second or third opinions. You can have your GP re-run the sed, rf and anti-ccp tests again.
I could probably guarantee it was your Sed rate he was most concerned about.
Oops, I see that was your rf factor.
I am 53, was diagnoised just 9 months ago with RA. My mothers sister is in her 60’s with RA and psoriasis. My dads sister died at 59 from Lupus complications (heart attack) and a cousin that died at 69 from lupus complications. My father died of head and neck cancer at 52.
I am upset with this RA diagnosis, I fear a heart attack will kill me at a young age of lymmphoma will. I can’t shake the doom I feel over my head. I think I will do a google and see what the average life span is with RA. I also have the added problems with Sjogrens and Hasimotos.
I was diagnosed several years ago by an RA blood test but because I showed no real discomfort it wasn’t treated. Last September I began to have some isolated pain and by February is was unbearable. I began seeing a rheumy who prescribed MTX. I only took it for 2 weeks then had a positive PPD skin test and although I did not have an active case of TB, I had to start taking INH. Being on 2 meds that can cause liver problems I became worried and stopped the MTX for 2 weeks. I did resume the MTX but my rheumy decreased by dose to 4 pills per week along with sulfasalizine and plaquenil. I have been taking these 3 drugs for about 2 1/2 months consistently. I saw my rheumy today and he is ready to move me to Orencia. The cost along with the side effects has sent me into another whirlwind. I feel that I have not been on the MTX long enough and compared to most people, I am on a very low dose. My liver enzymes are well below normal so I feel as though I should have a little wiggle room to see if increasing my MTX dose would provide better results.
Any comments would be appreciated.
Shannon. I worry too about medications. I thought maybe it was because I have never taken any medications before, never been really ill, never broke a bone, etc…and can’t wrap my mind around having a chonic illness. I came to this website and after having read several stories I am worried about dying, wheel chairs, kidney and liver failure from meds, and so on. I am not sure what to do.
My first visit he started me out on Plaquenil 200mg twice a day and prednisone and a injection in my knee. No side effects and no knee pain. Out of the blue 2 months ago he adds the MTX even though I felt good. I have no side effects from MTX ( I take 6 pills every friday night). A month ago he started talking about Rutuxican infusions. I think he is way too aggressive. When I hedge at it, he then tells me frightening things and I cave. The topper now is having a new diagnosis of hypothyroidism and taking a med for that. I have not taken a prednisone since the beginning of the year. My xrays show no erosion of joints in either my hands or feet.
Is all your aches and pains gone after being medicated with 3 drugs? I have seen commericials for Orencia.
My question is this, and maybe someone with more experience on RA can help me with this struggle I have:
How do you balance out the thought of not taking any drugs and risk being crippled by RA, but you get to keep your eye sight, keep your kidneys and liver functioning verses taking your meds for RA and staying out of a wheelchair but being blind, on kidney dialysis,etc…
What to do? Lets face it, MTX is a chemo drug and it is poison.
I feel I do seem depressed with my situation.
I met a lady with RA last month who has seen a rheumy for over 25 years and she only takes a daily low dose of prednisone. She is 78, has had 1 hip replacement, one knee replacement but she walked in my room with no cane, no walker and sat down crossed her legs, 20 minutes later got up and walked out. I got to thinking, maybe a joint replacement isn’t too bad a price in order to not take strong meds and ruin vital organs.
Thoughts anyone?
shelly.
I have been diagnosed with RA–only about 1 month ago. My MD started me on Arthrotec, which i was not able to tolerate. I have now been started on Predinsone 20mg daily, Folic Acid 5 mg daily, and Celebrex 200mg daily. I also took my 1st dose of Methotrexate 7.5 mg on this past Sunday. After about day 4 of the Predisone, Folic Acid, Celebrex cocktail, i noticed a HUGE improvement in my pain and mobility~~i feel physically great!! I have been extremely emotional since diagnosis, but am not sure if it is becasue of the diagnosis itself or becasue of the meds. I am scared to death of RA, the predisone, and the Methotrexate. I have my first appointment with my MD since diagnosis next week, and was wondering… what are the important questions that i MUST ask?
Shelley, you might read thru the methotrexate pages & comments to look for specific questions you may have about it so you can try to get them answered at your appointment – and hopefully feel better about it. There’s a link on the menu and some others in the Tags List dropdown list. The prednisone seems to be helping you a lot, but most doctors seem to say that it has more long term dangers than the methotrexate so this is probably a good step for you. https://www.rawarrior.com/the-1st-dose-of-methotrexate-for-rheumatoid-arthritis-15-questions/
Here are some links to general posts on preparing for the appointment:https://www.rawarrior.com/20-questions-ra-patients-should-ask-a-doctor/ & https://www.rawarrior.com/meeting-the-new-rheumatoid-arthritis-specialist/ You could find more pages by looking at the Tag for talking to doctors or Tips (that’s how I find them). Good luck.
I am on Methotrexate 7.5 mg / week for the last 7 Months. I Have been curing from My RA but there is swelling at my both ankles just like Odema. Pls suggest about it.
I was diagnoised last fall and was put on Plaquenil and prednisone, which I stopped the prednisone after a few months. I have been on methotrexate just since the spring , I did on my own stop it for a brief time just to see what would happen…nothing did. I resumed out of worry that my doctor would find out and discharge me from his practice. I was prescribed MTX 2.5mg 6 pills once a week. Two weeks ago my blood work showed a low platlet count and he has reduced me to just 4 pills a week. I don’t go back till september.I have not noticed any ankle swelling. It doesn’t make me sick, has not made my hair fall out, my problem is my neck and upper chest area gets red with any heating up, like exercise, warm shower, or sitting out in hot weather…even if I am in the shade. My skin gets red, burns, stings and feels like there are pieces of fiberglass insulation under my skin. When it gets like that, even applying a soothing skin lotion feels like I am putting on acid. Does anyone else have this sensation????
When I go out I wear SPF 55 sun lotion, big straw hat.
Shelly, you might want to check the comments on the post about some of the more strange side effects of mtx – click here.
I could not say for sure about you of course, but I have red inflamed skin from the RA itself. I had it before I was on the mtx so I know for me it’s not a side effect of meds but of the disease. Mtx can make you extremely sun-sensitive though. And RA can make your skin dry, which could also be a reason lotions sting. Hope that you figure it out.
My rheumy put me on MTX after the plaquenil wasn’t taking care of my symptoms well enough and I have to admit I was a little scared but after just 4 weeks – my fingers don’t hurt! For the first time in two years – my fingers don’t hurt! I am going to shout this from the roof tops – MY FINGERS DON’T HURT!!!! And they feel skinny again!
I am so glad I made this leap. The decrease in pain and swelling is truly significant – I can feel the difference in joints that I didn’t even realize were swollen. I am having some minor pain and discomfort in a few joints, but, wow, nothing like before, this is a miracle.
And I think I lucked out on side effects. I take it at night and feel VERY tired the next day – like I was out drinking the night before – but otherwise, okay, no nausea, etc. (fingers crossed!)
My rheumy wants me to discontinue the mobic and the plaquenil to see if we can drop those of if we need to keep them in the mix – so on we go with drug experimentation but I’m game, it seems to be working.
Thanks for sharing your good news, Leslie! May it continue a longggggggggggg time.
I still am fairly fortunate in the pain department but the fatigue is a problem. I find that the things I use to do that were enjoyable, now are a tiring burden with the joy gone, I just hurry it up without enjoying it. I would love to paint a room in one day, garden for hours, walk an hour, like I use to. But, the joy is gone because it is too tiring. My joints are willing but I don’t have any “steam”. I feel melancholy. Also, does anyone else suffer from heat intolerance? These 90 degree days I can’t bear. I use to, just 2 years ago, stay out in the sun all that I could. Now I break out in a sweat and pant even in the house with the air conditioner on.
Hello, I have just had my first dose of meth this week, I must say it was hard to swallow, have never had an illness before that just didn’t go away after a while. I fell ill in April and have only just got to a rheumy last week. The cortisone has taken the aches away but i still cannot straighten my knees and my shoulders are still frozen. I relate to the fears here but am also comforted that there are some good news stories as well. I have been studying a degree part time for eight years and am doing my final placement, next year was when my life would ‘start’ again without readings and assignments, this diagnosis was not in the plan. I am glad I have found this page as it is definitely more positive than some others i have found…they just left me feeling worse and worse.
Hi Cathy. Good luck with finishing classes this year – it is such a big achievement! You’re right that RA disrupts any good plan we have! I sure hope someone can do something with your shoulders or it lets up soon.
re: seropositive polyarticular RA. My daughter has RA, her disease may be caused by poor digestion. Taking digestive enzymes and eating pineapple or kiwi fruit with every meal and probiotics. Her symptoms seem to have disappeared. Still waiting to see what happens over a longer period of time – it seems too simple, doesn’t it that RA could be caused by ineffective digestion of proteins in the stomach/intestines, but her symptoms have disappeared. She is not on medication. Methothrexate did not agree with her.
I do not doubt you. But yes that is too simple of an answer to work on everyone. There are 3 easy explanations for why it’s working. 1- she is diagnosed w/the wrong illness/misdiagnosed which often happens. 2 – That her RA has slowed as part of its natural pattern as a majority of RA patients have, and that it coincides with the diet changes. 3 – That the food change is causing a known temporary lull in the immune system. Drastic diet changes cause these temporary immune system reductions – so I’ve read anyway. If it works, obvoiusly you’d continue. I wish you both well.
correction of the website address
Found your website in one of The Arthritis Magazines and so appreciate all your hard work and putting it all together in such a welcoming format. I’m 2 years into my diagnosis-still rather mystified by the disease, rather scared and am quite concerned about it’s impact.
Just wanted to say a heart felt thank you and I’m sure I’ll be visiting your site often to get information & encouragement. God Bless You Kelly & my new found fellow RA warriors.
Welcome, Norene. 🙂
Hi everyone, so interesting reading all your stories.
I was diagnosed with RA in 1994 when I was 2 years old. I’ve always suffered from it however, when I turned 16 it began to spread and after a few successful steroid injections, my consultant decided that Methotrexate was probably the best treatment for me at that time.
I think I’ve been on it for 2 or so years now, it worked really well at the beginning, other than the side effects it has changed my life dramatically. However, these past few months I’ve noticed an increased amount of pain and it’s worrying me as to what’s going to happen next. I’m a student nurse and it makes my time at placement annoying if I can’t work to the best of my potential.
I have been diagnosed with RA in the last year. I have been on Methotrexate for the last 8 months. I had to switch from the pills to the injections due to nausea and digestive side effects. I am now up to the maximum dose of MTX. I am also on 10 mg of prednisone daily. Now my doctor is suggesting adding Enbrel or Orencia. I’m so confused about what to do. I don’t really know what to expect. My pain varies daily but is always there. How do you know when to endure the pain vs the side effects of the medicine. I really need help in knowing what to expect and what to do. Kelly you are such an encouragement. It’s so helpful to have someone share what they are going through so we are not alone in this. So thank you.
I am 58 and was diagnosed with mild RA last month (minimal pain/stiffness in my hands/wrists). Reading this fantastic website (Kelly you are amazing!)has reassured me enough to try my first dose of MTX next week.
Since I’m very active on the weekends, and I work full time, I’m wondering if Wednesdays would be the best choice for date of dosage. I have a sensitive stomach so I trying to prepare in advance for the nausea-related side effects I might experience.
Hi Judy! Thanks for letting me know. Good luck with your treatment! Being diagnosed with mild RA over age 55, there is a good chance it will stay mild. Especially since you are starting aggressive treatment to get it controlled.
I hope you wont have any side effects on the low mtx starting dose. Many people don’t – you can eat a good supper something usually agrees with you and take it before bedtime. If you’re worried, you can also take some anti-nausea medicine (whatever usually works for you) just in case. You can also arm yourself with some peppermint or ginger tea or ginger ale. There are some other things on the list on the Mtx & RA pages on the menu.
I have been on MXT for about 2 months now with no side affects! 🙂 Last week my Dr. increased my dose from 6 tablets weekly to 8 tablets and boy oh boy! I have not been able to get out of bed for 2 days. Thank you so much Kelly for your advise. I am going to call my Dr to see if my folic acid can be increased or maybe I can split my dose.
The information on this site is what helped me to take the MTX after reading all of the side effects on the packaging and scaring the whits out of myself. I started at 7.5mg a week, first two weeks left me totally exhausted. Since then, as long as I eat a good dinner drink a couple glasses of milk and then pop the pills I have had no problems. I have also been on 1mg of prescription folic acid per day since the week before I took my first dose of MTX. After 7 months I am now up to 25mgs a week because the Enbrel still isn’t helping after almost 3 months and I continue to add new joints to the mix. I can feel the difference 2 days after my weekly dose of MTX with the effect wearing off as each day passes and thankfully I still have no real side effects.
Thanks Mr. C. Is your 25 mg still by pills then? My had put me on injections when I got to 25, saying it would be necessary. I’m glad you get some benefit from it. I’ve met just a few people who take 30 – but most drs wont.
Hi Kelly. I’m still taking pills, actually went to 22.5mgs this past week, will go to the full 25mg this week. Apparently I have an iron stomach, prilosec daily and enough folic acid. My RD would have stopped at 15mg’s (he said that is the max he usually perscribes) of MTX but I chose upping it to 20mg’s the first appointment I was offered biologics.
Conventional wisdom w/it is the more the better – up to what u can tolerate. But some are now backing off to 20 as a max saying that 25 is no better than 20. If you have it in every joint & flares just trade around how bad they are, it can be hard to tell. Good for you to try to hit as hard as you can.
I figure I will take as much of whatever works as I can tolerate and the doc will perscribe. At first I didn’t think my jump from 15mg to 20mg did anything but after a month I think it did help. I will feel like what I am doing is working when I stop adding joints to the count, actual remission would be wonderful but stopping the progression is my first goal.