Methotrexate Side Effects
My relationship with methotrexate
Side effects are the reason for the fight I describe in one of the about pages. There’s this fight I have every week; it’s a fight with myself. It’s the struggle to give myself shots. So far I always win – I mean lose. I’m not sure.
No one with Rheumatoid Arthritis loves methotrexate. It’s like a difficult marriage that you can’t leave. In either case, there are good reasons to stay on course, but it can get ugly.
There is no love, but maybe I respect methotrexate. I know it is “medicine” and that’s a good thing. I know that Biologic medicines are supposed to be taken with methotrexate. I know I need to take the methotrexate to fight my RA, so I do it, grateful that I have medicine.
Sometimes I wish I did not “know” so much. There is no way that I would tolerate these methotrexate side effects for five minutes if I did not believe I absolutely had to. Some weeks, the fight is harder than others. If I felt ill all day from the previous week’s shot, another shot seems inconceivable. But eventually, I always do it.
Can methotrexate side effects get worse?
There are some longer term benefits with methotrexate for Rheumatoid Arthritis. Some patients continue to improve over time with treatment. But, side effects can wax and wane. At times, they worsen, but usually improve eventually. I’ve ignored this cycle more times than I’ve dumped email spam.
Lately waves of nausea are more like rip currents pulling me under. I feel like I’ve been kicked in the gut by an elephant – and I know how that feels since I really was once! It’s nasty.
If taking methotrexate lasts forever, then it is like being married to it. But methotrexate is like a femme fatale or fatal attraction. It doesn’t care about my feelings.
Fighting hard against methotrexate side effects
If I have to be married to methotrexate, then I’ll do my best to get along. I can…
- Be proactive with my acid blocker every morning – it really does help.
- Chew little pieces of pink bismuth tablets even though I’m so tired of them – they do work on intestinal issues. That’s why people buy them by the box.
- Eat foods that help fight nausea such as hard peppermint candy, peppermint tea, ginger ale, bananas…
- Eat whatever I notice makes me feel better when I’m sick: For years, it’s been Fritos; maybe it’s the salt. Recently, I tried green olives since it was recommended by a Facebook friend who said they are given used by oncology nurses; they worked!
- Force myself to eat simple healthy food that includes protein even when I don’t want to eat.
Does anything help you with methotrexate side effects?
Related posts:
- More thorough list of ways to manage methotrexate side effects
- Methotrexate Injections for Rheumatoid Arthritis
- Methotrexate Side Effects in Rheumatoid Arthritis Patients
- How well do Biologic medications help Rheumatoid Arthritis?
Note: Prescription folic acid is recommended at the time methotrexate is prescribed. Folic acid is assumed, so I did not mention it in the blog. However, I’ve met a couple of people who were not taking any folic acid due to clerical oversight. If methotrexate side effects are extreme or they do not improve, it may be a good idea to inquire of the doctor about increasing folic acid doses. Also assumed are regular blood tests. Please see Methotrexate and RA articles for a more thorough discussion.
I am interested to know if others have swollen glands after taking methotrexate? I take 25 mg weekly and find my glands go crazy.
Regards
Nicole
Hi Nicole,
I don’t know about this. I do know it’s hard to tell whether the RA or the medicine causes something because the days around the day you take the medicine, the symptoms can be worse since the medicine has “run out.” Maybe someone else will know why. Which glands do you notice?
when I read the article I wonder about the dosing. I was taking the highest allowed to treat RA. The thing that really helped was to split the dose,in half, but to take all the pills within 24 hours so it is not as hard on your liver. My hair was really thining also, the rheaumy recommeded to take a Super B complex vitamin which helped. Also check vitamin D….found my was low so I get a script vit D every 2 months..i think that also depends on what part of the country you live in.
Hi Linda,
Yes, good idea to have various levels checked for deficiencies. That’s been discussed on other posts. Especially important if fatigue is an issue. Thanks.
What’s your dosing question? Seems there’s a wide range of doses between 7.5 and 30. My docs tell me it is partly based upon body mass and of course on disease severity.
I used to take Mtx… also the highest allowable oral dose for RA. NEVER again will I let anyone talk me into taking it, no matter what. I suffered with horrible nausea, fatigue, hair thinning, general malaise for quite awhile since my Dr promised me I needed to take it and that it would help… (I tried everything to counteract the nausea, folic acid, B vitamins incld.)Eventually I just refused to take it any more. For me, the side effects were much worse than any ‘help’ I got from it. I’ve found a MUCH better combo that I’ve been on for the last 1 1/2 yrs! 🙂 I will never again assume there aren’t other options.
Ambra – What drug cocktail are you imbibing?
Ambra,
Just wondering what combo has worked better for you.
It took me a long time to get used to having to take this every week. Now that I self inject, which I can’t believe I am doing, my Thursday nights are not something I look forward too. I sleep in on Fridays and go to work at 10:00 to give my body a rest from the shot. It helps just sleeping in those extra hours. Loss of appetite and weight loss have been an issue for me, which doc said could be from MTX. So I too eat things like bananas, protein drinks to try and get some nutrients absorbed. What can we do? Darned if we do and Darned if we don’t take it.
Greens olives!! Weird how they work isn’t it!! A staple in my fridge now. I was thinking of going to Sam’s Club or Costco and getting one of those GIANT jars they work so well for me. LOL
Hi Taffy,
Haha. I do buy the large jar at Sam’s already. By the way, if you ever stop taking it, you may be able to see the difference and tell the difference between the mtx side effects and the RA symptoms such as the lack of appetite. One of the first things that RA did to me before treatment: I did not want to eat. Even good food, I did not want to swallow. Unfortunately, I’ve had some chances to find out exactly how mtx really helps by not using it during infections. I learned a lot. Here’s one place I mentioned it.
I had read the appetite loss was from RA as well. I did have that happen before the MTX. MTX just doesn’t help either.
Hi Kelly,
Wow..couldn’t have said it better myself. One thing I used as an excuse why I shouldn’t do my shot until today. I keep getting free needles from the hospital with my Rx. But, they keep giving me the BD ones that have a serated tip so its hard to pierce the skin. I “didn’t feel like” going to the store for regular insulin needles so I am a day late now. The needles make such a big difference! I am soooooo good at making one excuse or another. Anyway, so nice to know there’s so many people out there like me. Look forward to talking more now that winter’s kinda ending? superstitious, lol. Have a great day!
Hi Vicki,
I agree about needles. I’ve been doing research on needles for Mtx. & plan a post soon. But believe me, I’m familiar with that stall tactic. 😉
For the nausea from my MTX injections, I have had great success with Zofran or its generic ondanestron 4 mg tabs. This drug is an anti-nausea drug also given to chemo patients for their nausea. I also take leukovorin as a rescue drug 24hr after injection that is also supposed to help with nausea. And of course, I take folic acid, multivitamin, amd B12 also as ordered by my doc. I’ve also had success with phenergan but found it too sedating for daytime.
Thanks Julie! I’ll try to take note.
Due to genetic variations that affect metabolism of methotrexate, some folks experience more side effects from methotrexate than others. From what everyone says, there are lots of things to try from various foods to various dosing regimines and supplements that might counteract some of the side effects.
If one is also taking a biologic, other dmards besides methotrexate can be tried, such as Immuran or Arava etc.
Kelly, I hope you are able to figure something out with your regimine since the mtx does seem to help you otherwise.
You are right, but there are also various doses especially in relation to body mass. We hardly compare either of those. 🙂
PS- also I’m on Nexium twice daily. Forgot to add that one. 🙂
OK I’ll be the brave one…..legalized medical marijuana helps RA patients just as much as cancer patients. It comes in pill form and edible forms so u do not have to smoke. It works wonders!
Hi all,
I started on MTX about 5 months ago, and couldn’t believe how much mausea and vomiting I had. I’ve always been one to enjoy my food, and for two or three days after dosing I lost my appetite and battled to keep anything down. The combination of folic acid and the anti-nausea drug Maxolon (Metoclopramide)has changed my life. I take the Maxolon half an hour before the MTX then go straight to bed…Maxolon makes you drowsy, which is a welcome side effect, and there is no ‘hangover’ the next morning.
I think no matter what you take, the most important thing is to have an action plan to tackle the nausea, rather than accepting it as par for the course.
Good advice, Michelle. Thanks.
I didn’t get to take mtx for very long due to its effect on my kidneys, so after my labs came back my Rheumy told me not to take the MTX any more. But, I do know of one thing that my mom said they used to do at the oncologist’s office when she was getting chemo. The nurses would give the patient’s lemon drops. My mom was a firm believer in this. And, I tried it and it definitely did help. Hope you have good luck with your meds. I wish I could take them, but I cant
Thank you, Laurett. What do you take now? I hope you found something that works.
Kelly, and others who have trouble with mtx, I am so sorry to hear it! I am on an oral dose of 20 mg weekly. I’ve occasionally had mouth sores (sadly, in my case, mouth sores make me want ice cream and nothing else, so no weight loss there…), but now that I take a good stiff dose of Folic Acid daily, they have not recurred since last summer.
I would say that one week out of four I have a bad day in terms of mtx-related fatigue. My hair is fine, and I can’t say I have nausea related to mtx. Clearly, I was made to ingest toxic chemicals!
I just hope it keeps working for me. At my last appointment, I had swelling (in the toe joints) for the first time in a very long time. It’s not worrisome to the doctor in terms of potential damage, just something to note at this point, but it worries me because I am morbidly afraid of having to inject drugs. I admire those of you who do it so bravely and completely understand avoidance.
What helps me with the methotrexate is taking it at night. When I forgot it recently and remembered the next morning, I had a much rougher time with it. So I think I’m sleeping through some of the side effects.
I’ve had a lot of changes in my forefeet and some toes, but really without any swelling per se.
Good advice about bedtime, Song.
Btw: I also had almost no side effects at that dose either. I think it’s so bad now because of the dose compared to my weight. Also, injected is higher absorption. You know what helps? Distract myself. Not good to be reading these. Haha. :chic:
Hi Songbird – MTX was not ever offered to me in the injectable form – when I was so sick from the pills the doc changed me to a MTX LIKE med (his description) which so far is not making me sick. I do the weekly injection of Enbrel – but I confess that I CANNOT inject myself. My hubby has to do it for me. I was okay using the injector pen but when I changed to a syringe I just COULD NOT do it!
So we are not ALL brave – I am a needle wimp!!! LOL (kelly I constantly and joking as well – it keeps me going so I do NOT ever meant to offend anyone when I joke)
wow I should proof read before posting huh – guess that is why there is a “preview” button!!
When I was on Enbrel (which didn’t seem to help) I still had to take the MTX which was oral at the time. Didn’t know they would give it without the MTX.
I have to say that almost all of my digestive side effects went away when I started injecting. I guess I’m on a relatively low dose – .7mg but it was horrible when I took it in pill form and almost magically ok in the injectable form. I do take it at night so I sleep through it and have my tiredness 2 days later. My hair loss is the single biggest thing I am pissed off about.
Making marijuana legal for medical use would make so much sense. I’m sure it would really help for the RA symptoms. In the meantime, I do drink lots of ginger tea and eat oatmeal every day.
Believe it or not, my latest addition to my injection kit is a bottle of perfume!! Smelling something nice is the first thing I try to do to shove off that feeling of nausea….Its always like a work in progress for me…I try something new every week- right from tender coconut water to chocolate mousse cake….sometimes they work and sometimes I end up throwing up by the midnight 😥
More importantly, other thing that I have started focusing on is the time I take my injection…I try to take it a little after I have my lunch, so that I already have some substance to handle the content of injection…then I keep having bites and sips in regular intervals, allowing myself rest of the day to not let nausea get to me….I have had many sleepless uncomfortable nights because of that disgusting feeling….Now I try to plan my regime for “the day” in advance….and I am really looking forward to seeing it work 🙂
Shweta, Great ideas. And I will admit I’ve used perfume more than once. I have a bottle of orange oil that someone told me to sniff to make it less stressful. But perfume is better. Anything to make it more pleasant. Also, I’ll often have a peppermint candy in my mouth. It really helps with the alcohol smell that about knocks me over from association with the mtx. 😛
hi kelly…..
wat is stem cell therapy?
does it have cure fr RA?
Rachael, no there’s no cure for RA yet. I’ll definitely let you know if there is. :hugright:
I have been taking methotrexate for over 3 weeks now and my appetite has pick up. I have also had to quite smoking. It has been almost 3 weeks since I stopped. The only side effect that get me are the pain sometimes in my calfs. But the doc had me up my folic acid and it helps. I will have to get some olives! Thanks for all the help on the site. I have learned alot!
Thanks, Terri.
Good luck with the smoking. High five. :highfive:
I had to quit smoking as well- I was diagnosed with JRA when I was 12, so my transition has been interesting. I did not realize smoking was such a trigger, and while I did not personally care to quit, the benefits on my ability to do normal tasks far outweighs the “stress relief” i felt from the cigarettes. good luck and keep it up! it only takes smoking one for me to trigger, and thats what makes me just say no.
RE: Methotrexate – when I was first diagnosed MTX worked wonders – was off for 3 weeks for a surgery – went back on didn’t work, increased dosage – didn’t work but did make me violently ill every week. Finally after one particularly bad episode of vomiting from it – that was it – I could NOT force myself to swallow those 6 little yellow pills again. Now taking LaFlunomide and Enbrel – Is anyone else taking Laflunomide? Rarely have a major flare anymore but the fatigue and full body pain that feels like a toothache is ever present now.
Today is a good day.
Today I went out to lunch with my husband.
Today I am allowed to enjoy a beautiful Arizona spring day.
Today is a rarity – but I WILL enjoy it while it is here. RA will NOT take away THIS day.
Today I have decided to resume my journal about living with RA –
Today I am hopeful.
Today is how I want to feel EVERY day.
But at least I have Today.
And after all isn’t TODAY all that any of us are promised?
So happy for your good day! 😎 Thanks for sharing your fighting spirit here!
I’m sorry about the mtx. It can be bad to go back to it unless we work our way up slowly. I’m learning the hard way. I’ve been thru the same thing a couple of times. Ugh. :sick:
Hi, I have been on Methotrexate for 4 1/2 years now 20mg weekly. The first two years the nausea and relux were horrible but took anti nausea meds to help settle it down as well as a lot of ginger. Today I only get occassionaly nausea but only use ginger for relief, no longer require the extra drugs. About 18 mths ago hydroxychloroquine was added because the Methotrexate was doing enough but ended up having an allergic reaction to the hydroxy. Specialist decided to take me off it and “see how it goes” just on the Meth but the pain has come back and last week I was prescribed Leflunomide 10mg daily. I have been told it can take up to 3-6 mths for it to start working so will play the wait and see game for now.
Wendy, what type of allergic reaction, and how long after you started it did you get the reaction?
Congrats Terry on ditching smoking. Something you had to do because you take methotrexate?
Terry – Congrats on quitting – I am still fighting that battle. Now that I am on the Laflunomide one of the side effects is a deep “bronchitis like” cough. It just started 2 days ago. The doc told me smoking makes RA worse (and he said he knows I have heard all the lectures) and I did quit last year for 4 months but started again stupidly. I will be giving it another try next week……….set my date to do it on April Fools day –
It may just be a “benign” side effect, but also could be a sign of a rare but potentially related problem of interstitial lung disease which can be caused by RA itself, can be caused by medications used to treat RA, or can be caused by smoking. So if you haven’t had them, I hope you will push to get at least a chest xray and a full pulmonary function test, with lung volumes and duffusing capacity included, to make sure something like this isn’t happening. If the problem persists even if initial tests look o.k., do not be afraid to keep pushing for a chest CT and a referral to a pulmonologist. In extremely rare cases, it can be swiftly lethal, so if you develop fever and shortness of breath along with the cough, get thee to an ER and notify your doctors.
Is anyone taking TREXALL? I couldn’t stand methotrexate, either…but this oral drug is coated…much less GI problems. For my insurance, the copay is more expensive, but it was well worth it for me…
Did he tell you that it is methotrexate with added coating to help your stomach? Yeah, that’s a shame since regular mtx is so cheap. :pill:
Nausea is not much of a problem with me and methotrexate. I nibble on saltines(must be the salt) and keep something in my tummy. I take 15 mg orally. My problem is Urinary tract infection’s and methotrexate. I have had 5 since starting MTX at the end of August. Also had several yeast infections, but have figured out how to prevent them. Anybody else have this problem?
I have been giving myself shots for 6 years (1 year off in there while I was pregnant with my son). Every Friday night, I start to feel sick before even doing it. Then I sit there for what feel like forever with the needle against my skin, coaching myself to take it.
But I do, and then I almost immediately feel nausea. This lasts usually til the next day…
I find a good (big) meal before helps. I do drink mint tea, and eat bananas and chew gum, all of those help.
I have started in the last year to get migraines more. I have had 2 mouthsores/cankers that were HUGE, it hurt to even speak. I have had rashes on my arms that come and go. I feel like I have had one big sinus infection for the last 6 years. I also get incredibly moody and emotional for approximately 24 hours once a week.
BUT, would I divorce metho? No. It works for me when I am on the right dose (we are increasing it to get back there right now). Without metho, I can’t type, I can’t walk, I can’t play with or hold my kids, I can’t lift my head off the pillow.
So for all those reasons, I love my metho.
Very well said, Jill. Makes me want to wish you a “Happily ever after.” :-))
I take the oral MTX and my dosage keeps going up… and the side effects are more noticeable. Oh well. For me it feels kind of like I got kicked in the stomach and haven’t slept at all for a few days even though I actaully slept my normal amount and have had tons of caffeine. Most foods don’t sound very good for a day or two…so pretty standard stuff. Fun times. I may try the lemon drops. I have tried bismuth and mint to no avail. I miss my Mom’s mint tincture in ginger ale! That stuff could cure nausea like none other. Sleep seems to help the most but since I have to work I can’t just sleep in unfortunately.
I guess we will all just have to keep hoping and praying for a cure so hopefully someday we can get off this stuff 🙂
Valeska,
I do know the “kicked” feeling…
Can you still get your mom’s recipe? That would be so wonderful for you. You could share it with us too.
I don’t know if it is something I could make…it was one of those old herbal remmedies she would mix in dark colored glass bottles 🙂 I will certainly see if I can get it though. I know it requires a lot of fresh mint leaves but aside from that I don’t remember….
my doctor is superb…..
though sometimes i just “HATE” him…..lol
he is superb bcoz he gives me mtx tablets ….no injection…bcoz i dnt like to hv.
moreover, when i complaint of nausea n vomiting,he gave me an anti emetic n little dose of methylprednisolone ….which made me feel better bcoz of side effects…..
i n he both know, that i wont get rid of meds soon…..but still he motivates me n say that ” just a little time more”
which makes me happy fr that moment even i know… :heh:
during examination,if joints are hurting…he never touches those joints….n promise to not to hurt me….
keeps my meds as much less as possible to make me happy…. 🙂
at the last….even i dnt know kelly y i m praising him so much today..lol
his magic or black magic????? lol
Thanks Chelsea –
This is excellent advice. I actually backed in to getting this done over this past week. Over the past 6-8 months I have had episodes of violent vomiting and severe stomach pains. It is usually over in 24 hours. This time it continued. To make a LONG story shot I went to the ER had a CT Scan of the lungs, stomach and intestines. What was at first thought to be a blockage or rupture in my small intestine was scar tissue/adhesions from quite a few abdominal surgeries throughout my life. The adhesions end up causing ‘kinks’ in my intestine which does the same as a blockage until it straightens out. I had an infection because of it as well. Was on IV Vancomiacin and fluids for dehydration for 3 days. I am not on a liquid diet for another week to ‘rest my digestive system” – as always I am wondering how much RA could have come into play with this. I have had the adhesions for years but never had these issues until after the onset of RA………………the docs at the hospital were VERY uneducated on the disease. Very disheartening. I am trying to keep my positive attitude through this but I am just getting SO frustrated at feeling bad. Just when I have a good day or two – something else seems to ruin it!
I will get the smile back on my face and I will face the world with my behind kicking attitude – it just may take another day or two! 😕
and in regards to the other post that RA doesn’t affect typing – wow read my reply to Chelsea – a long time typist would NEVER have posted that………………….NOOOOO RA doesn’t affect typing AT ALL…………
I HAVE ATTEMPTED TO TAKE METHOTRXATE 2 TIMES BOTH FOR AROUND 6 MONTHS EACH TIME IT TOOK THAT LONG FOR IT TO WORK.BUT THE FATIGUE WAS SO BAD BOTH TIMES I HAD TO DISCONTINUE IT NOW IM ONLY ON PLAQUENIL SEEMS TO BE HELPING BUT I CAN SLOWLY FEEL THE ENERGY COMING BACK BUT THE PAIN ALSO, ANY SUGGESTIONS TO HELP LESSON THE FATIGUE I DID TAKE FOLIC ACID.WOULD APPRIECIATE ANY HELP WITH THIS.THANKS
Hi Marie, first be sure to ask your doc about the folic acid dose. It is dosed in several different ways – from 1 mg per day to 5mg. Some take it on the mtx day & some don’t. Some take it all at once & others every single day. It is obviously unclear how it is best used, but worth trying a change if you are having trouble. Second, severe fatigue may actually be the RA. Mtx does not treat that as well as Biologics do. Of course I can’t say for sure – it’s just something to consider. One last thought, if you go back on the mtx, it might help to build up to the full dose slowly since your body can get accustomed to it & that can lessen side effects. Good luck 🙂
I have been having symptoms for a little over a year now. I began seeing a rheumatologist in November, 2009. I have had x-rays, MRI and a full-body bone scan. I have been on naproxyn and relefex, and ended up with blood in my urine on both of those. In March I tried sulfasalazine, but it caused horrible reflux and vomiting, and suppressed my bone marrow production of something.
Now my rheumatologist wants me to start MTX. I got the prescription filled today. (And it’s funny, because he will not say that I have RA; only that he is convinced I have some kind of inflammatory, autoimmune, disorder. *shrug* perhaps in time he will figure it out.)
But anyway, thanks everyone for your comments and suggestions. I work full time, so my MTX “day” will be Friday nights. I am so weary of the pain, etc. and, although I am pretty guarded about starting MTX, am ready to try it. I am blessed with a very supportive husband who wants to make certain he is available “the day after.”
Thank you Kelly. Your site has helped tremendously in educating me – even if I don’t end up having RA – and encouraging me through all of this.
Lisa, I hope it helps. I’m sure your rheum doc thinks it’s important. They don’t prescribe it lightly. Good luck Lisa! Let me know how you are.
Hi Kelly. I’ve taken the MTX twice now (7.5 mg each time). Tomorrow I begin 15 mg. I’ve noticed much of what others have said with respect to side effects, but to no real extreme at this time. I’ve not yet noticed any difference in pain.
I have a couple of questions for you and the other wonderful folks on this site:
1. How do you handle it when you get a higher fever? (I say higher because I generally have a lowgrade fever) I was feeling pretty badly at work earlier this week, and when I came home my temp was 101.8. I called the local gp and he said it could be a touch of the flu or a side effect of the MTX. He didn’t seem to want to deal with it when he realized I’m seeing a rheumdoc. I was able to get the fever down and it went away the next day. no other real symptoms. very strange. so I’m wondering if anyone else has fevers from MTX, and if so, do they get that high? I just don’t want to freak out if higher fevers are normal…
2. I would like to know what precautions, if any, you take to keep from getting ill due to a suppressed immune system from taking MTX. any advice would be welcome. The pharmacist suggested lots of handwashing, antibacterial wipes for doorknobs, counters, etc., and antibacterial handstuff. Anything else???
Thanks bunches!
Oh, and Kelly, btw, I did what you suggested and took a list of questions (and pics on my cell phone of swollen feet) to my rheumdoc. Took him by surprise. He asked me when I had the time to come up with all of them! However, he took the time to answer almost all of them, and drew a boundary saying he would like to only deal with the ones involving his expertise. Again, thank you! That suggestion really helped!
Lisa
I have had RA symptoms for almost 2 years. My primary care doctor sent me to first rheumatologist who initially felt I had RA and then decided I had fibromyalgia. My joint pain was in both hands, wrists, feet, and knees. I didn’t think I fit the criteria for fibromyalgia. Neither did my pcp as he sent me to another rheumatologist who started me on Plaquanil and Prednisone. No diagnosis yet, except to tell me that I have “an autoimmune inflammatory polyarthritis.” After 6 weeks I was feeling somewhat better and he has just started me on Methotrexate. I took my first dose last Friday evening 12.5 mg, also on Folic Acid 1 mg daily. I felt horrible all day Saturday – like my stomach was on fire and nauseated. Not sure that I can do this weekly, I work full time and don’t want to spend my weekends sick. I appreciate the suggestions on this blog and will try some this weekend. My rheumatologist also decreased the dose to 7.5 mg this week, then 10 mg next week and then back up to 12.5 mg. Hoping this helps.
Kim, I’m on my way out the door for an mri. I’ll reply again when I get in tonight. ~Kelly
edit: Hi Kim, I agree – that doesn’t fit the criteria for FMS. It sounds like your new rheum doc has a good strategy. That is a low dose of mtx and with all the precautions, you should be able to work up to a dose that is helpful / therapeutic for you. Be sure to go over the 13 side effect tips on page 6? of the methotrexate pages. Good luck.
Hi Kelly and All
I noticed my liver was enlarged about Nov 09 whilst already taking Sulphasalazine (SS), Prednisone and Naprosyn. My GP sent me to a Gastro who did an upper GI endoscopy and then a Diagnostic Laparascopy and Liver Biopsy. Diagnosed with an enlarged liver and spleen my Gastro wrote to my GP and Rheum saying it would be dangerous for me to take MTX. My Rheum was not amused and wrote to my GP saying “I” had decided not to take it!! 😯 However he started me on Leflunomide or Arava. When I first started taking Sulphasalazine (SS)I experienced a really full feeling around my liver and was nervous about the Arava. I don’t notice many side effects from Leflunomide and now I’m used to the SS, the bloating is less noticeable the next day. My Rheum suggested Folic Acid 3/7 when he wanted the MTX. I had been taking it regularly before anyway. A couple of weeks ago ‘in my wisdom’ I thought ‘I’ll try without Folic Acid’ – not a good move!!! Without it my mouth was unbearable. :-(( So even with SS and Leflunomide I need my Folic Acid. For nausea I can have either Metoclopramide (Maxolon) or Motilium (Domperidone) – another med that used to be prescribed with chemo in the UK and this has really helped. Both of these are available in suppository form – I know the thought isn’t great but I know that anti nausea meds can be difficult to swallow if you’re feeling really nauseous. I suffered with loss of apetite just with SS and it still happens but less so.
My ESR is just in the ‘normal’ category for the first time in years, but my other ‘bloods’ remain high and my knees are driving me insane together with stiff fingers. I am on slow acting Morphine (Oxycontin) for my back but amazingly my RA pain is not good. I’m just thankful because I don’t want to know how much worse it would be without it
Hi Kathryn, Why did you want to try it w/out the folic acid? Did you just feel sick of swallowing pills? I hope your liver has recovered? Thankful you found pain relief.
i love hating MTX.. it provides the following for me… first two days complete brain fog/nausea, third day nausea and exhaustion, fourth day some recovery and some nausea, fifth day feeling some energy and some pain, sixth day lots of pain and stiffness and exhaustion, seventh day shortness of breath and pain pain and… did i say abdominal bloat and …er…excuse me… gasssssssssss
so i love hating it cause i can predict which day from the injection that i can eat.. or walk or think or stay away from people.. there is a clear routine for me
by the way i switched my day last week so i dont have to pass gas in churchSee More
Too funny Dianne. 😛
This is my third dose of 4 methotrexate pills and after reading your note I realized those days you described in order are pretty much my kind of days too. It’s been rough..especially putting on a happy face and working with preschool kids full-time but “I CAN DO THIS”…others have it worse than me. Blessings to you.
Kim, I hope you feel better after you’re “adjusted” to it. If not, I’d keep the doc informed – there are things they can do. You’re strong for hangin in there!!
These are old posts so you probably won’t see this one but thank you Diane for shedding light. I take mtx on Thursday. Fri is relatively ok, Saturday i feel like a bus has hit me, much the same for Sunday. On Monday and tuesday I am so crabby that I feel positively pre menstrual or menopausal (depending on what side of 40 you are) on Wednesday n Thursday i start to feel human, the brain fog and fatigue lift. Just in time for my next dose… So yes, I think being prepared for what’s coming is helpful…my poor, poor colleagues, friends and loved ones, please send the thoughts and loves to them, I hope their forbearance continues;)
Thank you Kelly and the others who have posted here. I start my first dose Friday night and can honestly say that the apprehension level I had has greatly diminished after reading the comments here….. I can’t tell you, in words fitting, the blessing you have been to me in the walk with RA. It has been 4 months since my diagnosis and I am not in the dark with this because of your time and effort. Blessings to you and your family.
Good luck Diana with the new treatment. :heart:
If your not injecting IM then you should be. Less side effects and I was shocked to hear people doing it subq which I would never want to do.
1. Don’t eat for the first 4 hours prior to injection and at least 6 after. What I am getting at? Do it early evening and go to bed!
2. Have a light meal for dinner and start hydrating yourself with 2/3 Gatorade or Powerade and 1/3 water prior to injection.
3. If you are hungry in the morning keep hydrating – I mean like 2 giant bottles of gatorade/powerade and have something that you know won’t make you queasy. My favorite was grilled cheese or egg whites with toast.
4. Keep you meals light and things that won’t make you queasy for the next 24 hours and most of all stay hydrated!
This comes from my nurses and my experience of being on MTX for 15+ years. Also – another reason to inject – you more than likely will be able to lower your dose over time so that should be an incentive.
Hi, I inject my methotrexate subq and it does seem to make a difference; I also increased daily folic acid to 5 from 1. I don’t understand your fires on subs vs IM injections. Can you say more? Thanks, joAnn
Oh another thing – the dreaded folic acid. MTX is a folate inhibitor so taking large amounts of folic acid kind of defeats the purpose of MTX. You should be on no more than 1000mg a day and like a I said above hydrate – hydrate – hydrate which is good for your liver because MTX passes thru it twice before leaving your body. Yes your ALT is going to go up on MTX but like I said before inject it, hydrate and save yourself from liver damage. The damage that MTX and most drugs can do to your liver cannot be fixed so again – hydrate yourself for the drug to pass thru painlessly while doing its job of wiping your immune system.
Kimberly, “Dreaded folic acid”? That is a surprising way to put it. I hope readers will check out this new post on folic acid and methotrexate – click here.
We do welcome polite debate. The content of your comment leads me to recommend that readers look over the comment terms here on the disclaimer page.
Wow. This is scary. When I was at my rheumy in June, I casually mentioned that I’d been having some sharp pains in my left lung – reminded me of pleurisy. He almost brushed it off, but decided to take a chest x-ray. Next thing I know, he was calling a week later to say there was “fibrotic changes in the base of my lung” and he referred me to a lung specialist. Been pretty scared about this one because of course, I’ve been reading stuff on-line and scaring myself to death that I have pulmonary fibrosis. My first appointment with him is next week.
Hi Jackie, hopefully you’re not too scared but mostly just informed 😉 I’m glad you are getting your lung checked out – there are several things that can happen with the lungs related to RA. I hope it’s not something serious.
Hi Kelly,
I took Mtx for just over a week but my Rheumy told me to quit immediately as my gums would not stop bleeding. (I haven’t noticed anyone else listing this as a side affect. Is it not a common one ??? )
I wasn’t taking folic acid but don’t think it would have helped.
Now on Sulfasalazine (and Arthrotec) but don’t think it is really helping. I am gradually declining whatever I take.
I was diagnosed 4 yrs ago(aged 43) and have recently noticed that I get less annoyed and frustrated than I used to so I must be finally accepting it…………..it’s a bit like growing up – it’s got to happen one day !!!
Definitely not a common side effect. Haven’t heard others say anything about bleeding either. I’m sorry the doc didn’t give you folic acid – it directly counter acts the action of the methotrexate so that most side effects are gone or milder.
I agree this acceptance thing comes in stages & cycles. :rainbow:
I just found out that I have RA three weeks ago and just had my second dose of MTX on tuesday. I was just wondering if anyone has started coughing after. For the last two days I have had this awful cough. It is like a barking cough.
Carrie, No, I didn’t. It could be only a cold, but definitely call your doctor if it doesn’t go away or if it scares you. There are some cases that RA affects the lungs also. I hope you feel better soon & it turns out to be nothing serious.
Hi Kelly,
My neighbor is a pediatric nurse who frequently works with children being treated for cancer. She just went to a seminar where she was told to use Dextromethorphan to alleviate MTX neurotoxicity. She gave me this quote:
“Anecdotal reports suggest that DM can alleviate mild subacute neurotoxicity in patients with RA receiving MTX (Cush, Kamen, Proc Am Coll Rheum 1999)”
Have you heard of this? It sounded interesting. If we just have to swig cough syrup, that would be kindof cool. I feel like I’m always swigging it anyway.
Hoping you are having a painfree day,
Kate
Thanks, Kate. I have not heard about this. Would love to hear more. I will say I was on DM for over six months almost daily due to the hard coughing I got from Orencia. My mtx nausea was unchanged. Just personal experience. But I was not having the DM dose directly after the shot timewise, so doesn’t disprove it I guess.
The concept sounded interesting. The only other info I could get from my friend was that it was a “non-competative NMDA-receptor antagonist” and that was why it could help protect against long term damage from MTX. Her paper also said “Symptomatic patients were treated with oral DM, 1 to 2 mg per kg per dose.” This dose was given prior to the administration of the MTX. The lecture was being given to ped. chemo nurses and recommended that they just give over the counter DM to the kids before they got their chemo. Maybe we weren’t taking enough of it? I have no idea how to translate the dose into what we would take.
With the shot, I don’t get the bad side effects so I wouldn’t be a good subject. Maybe some of the others in our blogosphere who are having such a hard time should give it a try and report back.
I’m goin to try it next week. I was looking for info and found this warning not to mix it with some other drugs.
well now, that’s scary. I like to limit my “tripping” – with drugs or over the cat!
I have taken methotrexate for about 8 years, I can not tolerate folic acid becasue of intersitital cystitis it flares it up. I am not on the injectabel at 6mg (15mg) but just recently went down to 5 (12.5) along with enbrel. My joints are kiling me and i need more but the side effects I get are terrible, my stomach hurts, my head hurts and I just feel terrible. THe mtx works good and if I could tolerate 17.5 I would not need anything more excpet the enbrel gives me energy.
Anyone else out there wtih IC and can tolerate the folic acid and if so how do you take it? I eat a lot of spinach and other stuff but really do not want the headhaces or the stomach pain i tis terrible.
thanks
Becky
I will ask a friend, Becky. I haven’t heard this problem before. Can they even use the folic for you in a one day blast the way some do? Taking 5 mg or so only the day after – I think that’s what I’ve heard. I wonder if substituting folinic acid would be any different too – link to post on that.
I have been told that all B vitamins are bad for the bladder I take the 400 over the coutner and afetr about 2 days it flares it up badly, but thanks for checking.
Becky, you are in a difficult situation for sure. Interesting contrasts here: MTX is sometimes prescribed for IC,and has proven very helpful for some. Yet one possible side effect of MTX is cystitis according to the side effects list. I have had trouble with chronic UTI’s since starting MTX. I take folic acid 1mg a day along with the 15 mg of MTX a week. I have questioned at times if what I really have is IC. Many times my urine tests come back negative for infection, but I am treated anyway. I’ve had 11 rounds of cipro in 15 months.
The injectable mtx may reduce the tummy side effects. Look into the drug Leucovorin to take with MTX. It protects healthy cells from being damaged by methotrexate. It is not a folic acid supplement. It’s called a folic acid analog. Good luck to you.
Rhonda, It is not the mtx that bothers the interstitial cysitis it is the folic acid and the other B vitamins and since I don’t take the folic acid I am getting a lot of side effects such as nausea, headhace, and stomach pain form the mtx.
Becky, I did understand exactly what you were saying. Just thought the mtx info I gave you was interesting, the fact that it can cause cysitis, yet is prescribed sometimes for cystitis. Have you tried the injectable mtx to see if it bothers you as much? Your post above says “I’m not on the injectabel at 6 mg”. Nausea, stomach pain are usually not as bad with injection as opposed to pills. Have you tried Leucovorin? Anyway, I’m hoping the best for you and that you find some answers.
Rhonda,
I must have written it wrong I do take the injectable, 6mg it is which equals 15 mg in pills, it did help with the stomach pain at first but now I get that and a bad headahce when i take the injectable, I just lowered it to 5 mg or 12.5 pills form and it has helped the side effects some but has made the RA flare more even with the enbrel. They had watned me to swtich to remicade, but htat scraes me more than the enbrel so I had deicded to wati it out. I have taken folic acid this week two of teh over counter 400mcg pills and will see if that helps at all. I eat tons of spinach and foods with folic acid which is acutally a better way to get folic acid so we will see. Thanks for the help.
Becky
Good luck Becky, I wish I could have been of more help.I took Enbrel for 6 months and it puttered out, now I’m on Humira. I know someone who has been on Remicade for 13 yrs with great response. She can run! She does easily get infections, so she is careful and gets them treated quickly. Then there are others who do not respond at all. It’s all a gamble.
Do you take methotrexate with the Humira? I just found out today that the perservative free injectable mtx has been recalled because of small glass flakes in it, my pharmcy said htey are not sure they will get any more, I have never taken the one with the preservative in it, I wonder if it has more side effects? Any use it?
Becky, if your mtx was in the recall, I hope they can replace it. I’ve used the preservative added ones w/ no problems so hopefully this can be substituted. I think it would only be a problem if you had a “sensitivity” or allergy to preservatives.
I’ve used both the preservative free and with the preservative. No difference. Supposedly the one with the preservative can sting more. I just inject it slower!!!
I was diagnosed 11/10 and DR figures I’ve probably had RA for about 4-5 yrs. I had swelling and pain in my arms & wrists but it came and went so fast that I never said anything to the Dr about it. In general, I felt great at times and there were other times that I just felt like crap. At 45, I really thought it was because I was getting older and little aches and pains were to be expected.
Have been on oral MTX since late November & it is a very rough drug to take. I sleep nearly the entire following day and the 2nd and 3rd day, I feel like I’ve been on a drinking binge for a month. Head pounding, nausea, vomiting & the newest addition; diarrhea. My SIL is a nurse and says to give it time… I admit, the RA symptoms have lessened; havent’ had any red, painful flare ups since 12/27. Just morning stiffness and stiff after any extended period of sitting, non-movement.
How long do the side effects for MTX go on? Will they ever stop or lessen? Worse than the RA, the MTX has changed my life.
Hi Sherry. Side effects can either increase or lessen. For most, they lessen after a few weeks, but you still have to watch out that suddenly they can create an issue in the liver years later for example. If I had the typical side effects like you describe, I’d ask my doctor if I had enough folic acid. you might want to read this page about that and the comments page
Hi Kelly, I stumbled onto your website, through looking up MTX. I have Crohn’s disease and was diagnoised with Lupus a few months ago. Which, from reading your website is no different in symptoms than RA. Not to mention the ditto drugs used to treat. I am not sure why doctor’s suggest and prescribe Humira/remicade, since the side effect of these Bio drugs can cause drug induced Lupus over time, as remicade did to me. It would be logical to think if you already have RA and are treated with these drugs you may up your chances for Lupus. I am on MTX injections at 25mg. I am aware not everyone is going to get all the side effects of each drug they are on. But know for sure you are most likely to develop more autoimmune diseases once you have one. I do not mean to intrude on a site for RA, but we all have the same painful, on going symptoms and are treated with the same drugs. My hope was to provoke thought and get thoughts on our world of drugs. Your wonderful site has helped me understand MTX and how MTX side effects can be helped along…Thank you very much! 🙂
Hi Karen, you are not intruding. We have cousins – RA and Lupus. 😉 Good luck to you.
i am apatient of rhumotiod artharities it is helpfull for me
I haven’t started methotrexate yet. I start it next week. But reading about that mint gingerale reminded me of a recipe I came up with to fight the nausea of pregnancy. Id slice fresh ginger and put it in a small pan with sugar and a little water an boil until it was syrup, id put in a little jar with just a squeeze of fresh lemon. Id take a teaspoon early in the am. Id vomit if I drank a glass of fluid but could keep down tgat small teaspoon and it would within. 20 minutes or so allow me to hold down a small breakfast and once I dd that id be ok for the rest of the day.
I guess I may be making that recipee again.
Hi Laura, I replied to your other comment earlier so I hope you saw it. That sounds like a good recipe. Thanks! If you make it , you could take a picture and email it to me & we could add it to the RA Kitchen! Mtx does not always make one sick. The RA dose is small & it was a long time until I got sick from it. So don’t let it psych you out – hope for the best – and drink your awesome recipe. 🙂
Hi,
Apologies in advance for using this to unload my RA “story”. I woke up on Nov 29 last year with a strange pain in my shoulder. 2 weeks later, the pain in various joints was bad enough to go to the doc. I finally got tested for RF in late Dec, came back positive – by now moving was very painful. There is a big medical shortage where I live, so for “emergency” diagnosis I travelled several hours each way to a neighbouring city while the local rheumies tried to get me in. Rheumy diagnosed RA, put me on sulfasalazine. The following month was a nightmare, my RA got so bad I couldn’t: walk (knees, ankles, feet); eat (my jaw!); drive (my neck) without huge pain (bone scans subsequently confirmed that all my joints are now affected). Lots of things I couldn’t do at all, including write or even sign my name or turn a lock. I also lost my appetite, and developed a constant low-grade temperature; exhaustion and flu-like headaches etc. By early february my glands were swollen and I had mouth ulcers. I finally got a local rheumy appt in mid-Feb. He was awesome. Put me straight onto 20mg mtx, took me off the SS. which he blamed for the flu/infection stuff, and gave me 15 mg prednisolone a day (i’m also taking 200mg ketaprofen). Two weeks later – I’m almost back to full functionality (I assume this is the pred.) and I have my life back. Saw hm yesterday, and he wants to start weaning off the pred. in six weeks.
BUT – even on a fairly low (?) dose of mtx, I’m struggling with the nausea/fog. I take folic acid the day before, and the mtx pills on Mon evening. I’m ok overnight, but Tues am is awful. I can’t think straight, I’m lightheaded and really nauseous. Wednesdays, the fog lifts, but the nausea is bad enough in the mornings/evenings to vomit on occasion. The only days I feel ok are Friday-Sunday. My work has been awesome, up to now they’ve let me work from home on Tuesdays, but that can’t be a permanent thing.
Not taking mtx isn’t an option. Without treatment I turn into the tin (wo)man and am no good to anyone. I’m also not really clear what is caused by RA, what by the various medications, and what may just be unrelated, since it all happened so fast. I take Omeprozole daily. I’ve also been using valium two or three times a week, to counter the sleeplessness induced by the pred. I’ve always been someone that drugs/alcohol work fiercely on, which can be good and bad. Also, I’ve lost a lot of weight in the last few months, which I suspect isn’t helping.
Sorry for the rant, any advice would be really appreciated. I’m surrounded by supportive people, but no-one who really understands what it’s like at all. This is probably the wrong place for this request, but in particular, I’m wondering what I’m for when the pred. decreases? Is the mtx likely to have “taken over”? My doc thinks that because the pred. worked “amazingly well” (his words) the mtx will too.
Hi Cassie! I am so sorry you’ve had RA attack you so fiercely. I have a few suggestions, but you may have already read about some of them. These are all prescibed by my doctor, so maybe you’d want to discuss the sideeffects with him and about the suggestions. I am on 25 mg, the highest dose, but in shot form. This helps to bypass some of the GI sideffects like nausea. Daily folic acid (currently 3 mg) is also prescribed for me, as is a specialized form of folic acid called Leucovorin, a rescue drug given 24 hours after the MTX shot. I also have a wonderful antinausea med called Zofran, generic name is ondanestron. I have been on MTX since 1996, and went directly to injections, due to preexisting stomach and GI problems. Its easier than it sounds , and uses only a very tiny needle , most often given directly under the skin.
If all else fails and you cannot tolerate the MTX, then there are several disease modifying meds and biologics to also go to. Often times, there can be used in combination with the MTX, but can be given without, as well.
Don’t give up on hope of finding the right medicine. I’d suggest talking yet further with your doc, about the ideas I;ve discussed, and any other concerns. Good luck!!
Thanks Julie, lots of good suggestions I’ll follow up on.
Hi Cassie. I am so sorry you have been through all of that in such a short time. The doctors try to get you off of Prednisone as early as possible due to some of the nasty side effects that come from long term use. I am sure your doctor will cut the dose slowly for you. If the Methotrexate is working for you it should not be too bad coming off of Pred. If the Methotrexate isn’t doing all it could then you will start to feel the return of the symptoms you had before going on Pred. Talking with your doctor would be a good move related to your nausea. There are several different meds. that are given for it that are prescription only. I have also heard that anything with ginger in it helps the tummy like ginger tea, ginger snap cookies, etc. The doctor may choose to increase the amount or frequency of your folic acid to cut down the side effects from Methotrexate also. You are doing a great job by continuing to try and fight RA and reaching out for help when you need to.
Thanks Jamie. It’s really good to get responses – I LOVE gingerbread so maybe this is an excuse to indulge a little.
LOL! My new rheumy put me on plaquenil in Jan. and I was feeling better than I have felt in a year by the first of March but then I had another (damn!) flare and now he would like to add methotrexate – he doesn’t think the plaquenil is enough. So, of course, I google it. And what comes up? Inquiry after inquiry? RAWarrior of course! I should have guessed! As always, you have some of the best, most thorough and reliable info. Easy to understand, not designed to scare me, but not leaving out anything important that I ought to know about and not dumbed down either. I’m a little afraid of this drug – and guess maybe that I ought to be – but at least I can feel like I can make an informed decision. Thanks Kelly!
Thanks Leslie! Make sure you see the one where the rheumatologist rants that most methotrexate info online or in pharmacies is suited to cancer doses (much higher obviously) and not really appropriate for rheum patients. Here’s the link.
Note to readers: Anyone can find all the posts on methotrexate with the Tags list – that’s how I do it. Lol.