This week will be my 4th (Wed.) week taking my dose of Methotrexate (orally). It was prescribed to me in early July but I waited to start it because of beach vacation and just some uncertainty. Doctor was quite vague during appointment.
Anyway, first 2 weeks were no problem. I took it at night as I read that helps in case you get upset stomach.
Last week I started to get horrible headaches and nausea - one night I vomited and truly feel like I will do so tonight.
I've been on couch all day today and about 2 of the last 5 days.
Anyone else experience this? Will it pass or do I need to go off.
Sweaty, nauseous, pounding headache- in forehead. I feel awful.
Are you drinking enough liquid? The more the better. That is likely the single biggest thing you can do to help the headache and nausea. And has your doctor put you on folic acid as that helps mitigate the mtx side-effects too ... my experience is the docs usually start you off on one dose a week (not on mtx day) but this can be increased.
It sounds crazy but I used to find eating actually helped a bit, something easy on the stomach. I chose stem ginger biscuits because ginger is a stomach soother/anti-emetic.
The best thing, though, is to let your doc know you're feeling awful and it's wiping you out days at a time so s/he can get the ball rolling to swap you to injectable mtx which, obviously, bypasses the stomach. This can help significantly and although doesn't remove the possibility of feeling a bit icky most people are able to manage much better.
Hope this helps a bit, if only to reassure you that how you're feeling isn't unique.
Hi Claire - I had chronic headaches with methotrexate despite drinking lots of water. I increased my folic acid to 5mg x 6 days per week which helped a bit. The good news though is that after about 3 months I seemed to get used to it and no more headaches so try to persevere if you can
Good to know I'm not alone and not crazy! Thank you all very much for the responses! My dose is 2.5 methotrexate 1x per week and 1 mg folic daily. Perhaps I could be taking a lot more Folic. Are there effects of that? Or is 5 mg per day safe? I am a huge water drinker but the two days in the last week I actually vomited, I may not have been well hydrated. I wasn't eating/drinking much because I was so nauseous.
I'm assuming the headache is causing the nausea or both are effects. The headache gets worse and worse as day goes on and they're debilitating. I teach and start back work days on Monday, the 22nd. If I had to work yesterday and today, I would've had to call in sick. I can't read. I pretty much can't do anything but lie on couch.
3 questions - 1) if mtx is taken via shot, does that ease headaches or just stomach upset? 2) For Golfnut - you said to stick with it and after about 3 months, your headaches went away. Do you all know if it's common for the side effects of headache to diminish a few months into treatment? 3) What can I take to help the headaches? I've been hesitant to take Advil because I don't want to tear up my stomach more.
Side note - my rheum. was awful - he told me nothing, didn't mention sun sensitivity, side effects, etc. He was incredibly vague and seemed quite dismissive. My GP told me to call and ask to get in with the rheumy I was supposed to see. I did today and they said I was stuck with the dolt. So, I'll call my dr. back and see if she can pull strings - if not, I may be going to a totally different practice and rheumy. Your doctor should talk to you about all these possible effects.
Ugh. I have so much to do this week, and I'm lying here ill. I'm worried about going back to work.
Thanks again for sharing your experiences and encouragement.
Wow, Claire, that is a really low dose of mtx. Only one 2.5mg tablet? And you feel this unwell! That is a worry if the dose is correct. You need to speak to your rheumy.
Often side effects do settle with time and it's easier to ride the wave when you're getting some benefit but this is way early yet for anything to be happening for you.
Tylenol can be taken with Advil or in between Advil doses. You could give this a try. Or again ask your doc whether you could have a stomach protector. I also hear that meloxicam is easier on the stomach than ibuprofen. But dehydration headaches are simply the worst, right up there for me with migraines. Your pharmacist is also a really good resource for advice.
Thinking of you. I know I felt so alone when I rode the mtx horse as it was before I joined here.
Yup Jules is right. The headaches are almost always dehydration. Even on a minimal amount of MTX, your fluid consumption should be 1.5 times the normal amount whicc for an average lady is 3.3 liter/day..... I fyou drink coffeee, tea, soda it needs to be more yet...............
The folic acid is pretty much an american thing (although the brits are into it as well.) What the folic acid does is counteract the MTX. MTX is both antimetabolite and antifolate. Folic acid does make you feel better, but it makes the MTX less effective. Sort of a trade off. The docs start playing wack a mole between the MTX and Folic acid. I just had my folic acid reduced rather than increase the MTX........... So yeah you can increase the folic acid, but it comes at a cost..... FWIW for both myself and Grandaughter we started at a higher MTX and Folic acid and cut back the Folic acid as our bodies got used to the MTX.
I will be calling my GP tomorrow to see what she wants me to do about rheumy - I have appt with the vague one the 1st of Sept but I don't want to see him. He was awful and discussed exactly zero w/ me regarding the mtx.
I will up the water, and I wonder if ok to up my folic on my own.
"Often side effects do settle with time and it's easier to ride the wave when you're getting some benefit but this is way early yet for anything to be happening for you."
So regarding the above, I'm 4 weeks in (5th dose should be tomorrow - scared!!) and this is too early to be having side effects?
Thank you again for all the info - I did not know that about the folic acid lowering the effectiveness of the mtx. I don't care right now- I just need to not have stabbing headache and vomiting. Thank you all.
So Advil won't make me more queasy? Also, it's ok to take with mtx? I guess I was concerned about liver issues as well as not upsetting stomach more. But I need relief from the headache. Awful. Drinking water now.
A rotten personality does not a rotten Rheumy make. Some intelligent questions can really get them talking (more than you may want) Rheumys are the detectives of the Medical world and without a doubt the most intellectual of all physicians (geneticists are a close second and neurologists just plain weird) So grant them some grace. I was around medical schools a lot in my career and those folks have a warped sense of humor, but it was generally accepted that a a rheumy with a great personality used that personality to get through school rather than skills and was usually a failed surgeon (who are the salesman of the medical world) who found an open fellowship. There are more fellowship openings for Rheumie than actual rheumies. The main reason is because they have few "procedures" to produce income and intellectual time is poorly compensated, they can't have much medical school debt, as its hard to service.
Bottom line is don't write your rheumie off too quickly because he has a rotten personality. You want him "thinking" not talking any way. Give him lots to think about, take a list of questions and work him. IF he doesn't love you then can him.
Advil is still my favorite but use the name brand or motrin, The generics ARE different and not as good. I also take a cheap acid reducer. works for me. Tylenol is the one hard on liver. The other stuff, your kidneys are the concern. One more reason to drink lots and keep them flushed. In the US federal law requires at least quarterly blood work with MTX. IF you look at your coding axis, you will see "Toxic Medication Management listed. Don't let it freak you. Their toxic and our Toxic are two different things.
Hi Claire, just to support what has been said by others here:
I found these side effects did subside after about three months. However at 6 weeks my rheumy and I decided to split my dose as the side effects were problematic. This meant I injected 10mg twice within 24hrs. Helped heaps.
I injected from the outset as I have had terrible gut reactions to other DMARDS. This helped a lot. Folic acid made abig difference to side effects. I took 5mg 6 days/week.
While the headaches got less they did continue. I managed this by always carrying a water bottle and drinking about 500ml of water as soon as I felt the headpain.I also drank alot of water on injecting days.
This med was the most successful so far for me as I have reacted to other meds. It reduced peripheral joint problems by about 40% and spinal joint problems by about 20%. So hopefully it will help you too. I am on a break from it at the moment becuase unfortunately I kept getting infections....shame really becuase I was pretty happy with it over all.
Thank you, Tntlamb. I do appreciate all the information, and I'm drinking away. When I say he's a dolt, I just didn't feel he had it going on detective wise (he was personable), which the main practitioner there is supposed to be excellent at - she has a rep for being very good diagnostically. He recently joined her practice as she is overloaded and though I was referred to her, I've now been told I must see the doc I saw first.
The guy I saw is new - 1.5 years practicing - very the experienced and very highly regarded dr. I was supposed to see. My GP agreed with me and said she'd heard the same from several of her patients. She is going to attempt to get me in with the main rheumy there or a different doc altogether. The guy I saw barely asked me any questions and tried to dismiss me with "Everything looks normal" - after getting back my X-rays and labs. I then asked, What about the swollen joints on my toes? He said, well, that's a common place to get osteo and started to stand up. So I launched into my family history of autoimmune (including sister and dad w/ psoriasis), my years of issues, etc. I am quite sure he didn't even read the 6 page medical history I filled out for them.
Then he said, Ready to try meds? And prescribed the mtx with his only comment being you can't drink. He may be a very smart guy but he was very cursory and seemed like he could care less. He appeared to be done with me. I just didn't get a good vibe.
I took 2 extra folic acid pills yesterday and am drinking lots today. Feeling better headache/stomach wise but feeling very weak. Thank you all for the info and support!
Thank you! Great information, and I'm sorry it's not working for you now by bringing on infections. :(( It gives me hope that we can play with it and perhaps the injectable will help. I'm calling today to leave a message about side effects and meanwhile I'm upping folic on my own a bit and drinking lots.
MacMac said:
Hi Claire, just to support what has been said by others here:
I found these side effects did subside after about three months. However at 6 weeks my rheumy and I decided to split my dose as the side effects were problematic. This meant I injected 10mg twice within 24hrs. Helped heaps.
I injected from the outset as I have had terrible gut reactions to other DMARDS. This helped a lot. Folic acid made abig difference to side effects. I took 5mg 6 days/week.
While the headaches got less they did continue. I managed this by always carrying a water bottle and drinking about 500ml of water as soon as I felt the headpain.I also drank alot of water on injecting days.
This med was the most successful so far for me as I have reacted to other meds. It reduced peripheral joint problems by about 40% and spinal joint problems by about 20%. So hopefully it will help you too. I am on a break from it at the moment becuase unfortunately I kept getting infections....shame really becuase I was pretty happy with it over all.
Hi, Claire Thankyou for your post I got a few answers from it . we are about the same boat. I am in the third week of the same treatment,, yes ready for the sick ill feeling to get better. Have slight headaches all the time , but keyword slight , so i suppose that is fortunate ;) Best wishes for us all. Thankyou
So sorry to hear you are also feeling ill also. :-( I hope it passes soon as your body adjusts. I'm feeling much better after lots of hydration, more folic, and skipping last week's dose.
I was on the phone a few times last week with rheum office. My doc's nurse returned my call about symptoms and simply said the vomiting, yes, could be a side effect of the mtx and to stop taking it. I skipped my last week dose. When I asked about seeing the other doctor instead, the receptionist immediately sighed, and said, I'm so sorry, I just can't ... I've already had to do this once this week and we have a new policy that no one can switch. I'm very sorry.
The office manager called me back and again apologized and shared that it wasn't the first time she'd heard complaints and the doc's 1 year evaluation was coming up (he's only 1 yr in practice) and they are working with him on bedside manner. I told her bedside manner wasn't the issue for me - he was pleasant (and I wouldn't care if he had no bedside), but I just felt like he didn't care and he was dismissive of my issues. I generally told her how my appt had gone - lots of smiling and shoulder shrugging, zero mention of side effects, what to expect, hardly asked me any questions, did not seem to have read my 6 page history, very short/cursory. She was very apologetic and said again that Dr. ___, the main doc in the practice who is quite renowned, does want to know these things so she can work with him. I hung up feeling like at least I said my piece (I knew it was anonymous) and hoped since I was stuck with him that at least he would improve.
Low and behold, the office manager called the next day and said after speaking with main rheum, the doc said she wants to make an exception and see me. So, I am now a patient of a more thorough and experienced doc! And, I have an appointment on August 31!
I need to call today to find out if I should resume mtx this week -- I want too, as I want to get through the next couple months and have my body acclimate. This will be week 6 coming up. My plan is to continue to drink tons and take extra folic and take dose on Wed.
It's back to work for me today (teacher). Again, thanks to all of her for the explanations and support! I feel I have so much to learn. Have a great Monday, everyone!
I'm going to echo talking to the rheumy about switching to injectable MTX--it's a subq injection. The only real problem I had was sometimes the med would leave a little lump. When it happened the first time, I called a nurse friend in a panic. She said it was totally normal--I forget why now. The next time it happened, I got jiggy again and my husband said remember what Marguerite said, go take your shower. I took my shower, "lump" of meds had been absorbed when I got out. My husband smirked at me. :-)
It helped with my nausea. Unfortunately, although it helped, I never totally got rid of the GI side effects in the nearly eleven months I took it.
Poo -- Sounds like anyone prescribed mtx should be told to drink tons of water!
My appt is tomorrow - I haven't taken the mtx since I got sick. I'm hoping for more info tomorrow and will certainly see what she thinks about injectable.
Thanks again to all for the replies and advice. I plan to tell her what I learned here (zero of which the new doc told me).