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eyes are burning - could it be the Methotrexate?

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Posted 11/29/2018 4:54 PM (GMT -7)
After a recent flare my (new) GI dr put me on methotrexate to supplement my Humira so I don't develop antibodies to it - I've been on Humira for about 7 years now so am not really sure why the methotrexate but you can't argue when you're sick, lol. Anyway, I'm feeling a lot better now but am feeling some side effects, I'm assuming from the methotrexate - I've been getting headaches (which is the only ailment I never usually get, every pain my my body is usually neck down fro the Crohns haha), my hair is starting to fall out a bit but one especially concerning thing that's been happening is my eyes have been burning - like the same way if you're cutting onions or if there's something in the air that makes you scrunch up your eyes and rub them. Could this be from the methotrexate? Has this happened to anyone with Crohn's? My GI dr seems to not have a lot of experience with anything out of the "norm" and so any help here is much appreciated.
Posted 11/29/2018 5:14 PM (GMT -7)
I have no experience with Methotrexate, however, there is an excellent site called Drugs.com. I would go there & look up the potential side effects, its list SE's from common to rare.

Hopefully it's not the new medication, but I would read up on it.
Posted 11/29/2018 7:21 PM (GMT -7)
Thanks straydog, I've read everything I could about methotrexate, especially since it has so many side effects. I'm mainly just looking to see if anyone has had a similar experience since this is something that isn't often listed. :/ Doctors don't always know a lot but other Crohn's patients do. smile
Posted 11/30/2018 8:32 AM (GMT -7)
No, I've never had that with methotrexate.

But what you described sounded like dry eyes to me. Found this:

https://www.ncbi.nlm.nih.gov/pubmed/7296473

Dunno how high "high dose" methotrexate is, but it does seem plausible that methotrexate could be the cause of your eye issues. But to get a more definite diagnosis, I would see an optometrist.
Posted 11/30/2018 9:26 AM (GMT -7)
Possible causes:

1)MTX
2)Uveitis
3)Eye infection
4)Neuro-ophthalmological problems
5)Something(s) else

I would get an eye exam from an ophthalmologist, depending on the situation.

Post Edited (xy123) : 11/30/2018 9:30:00 AM (GMT-7)

Posted 11/30/2018 2:22 PM (GMT -7)
I am having a similar experience. I have been on methotrexate for 5 weeks now. After the first dose I had a major headache, the second dose was a little better and after that not much of any side effects until my last one (#5). Within a hour of taking the medicine my eyes started to burn, not real bad but enough to be uncomfortable and I find myself closing my eyes quite often. I am on day # 3 now since I had the last dose and the burning is getting better but still there. I am also on Folic Acid to help combat the side effects of the Methotrexate so who knows if the burning would be worse if I was not on that. I'll talk to my Doctor if my next dose of Methotrexate causes more burning.
Posted 11/30/2018 3:26 PM (GMT -7)
MTX can negatively affect CNS(1). It crosses BBB, unlike thiopurines. Not a fun drug. I have used all the available drugs with the exception of ustekinumab and I think MTX is the worst in terms of side effects.

Though, it has good effectiveness. It can calm the inflammation down (2).

(1): https://www.ncbi.nlm.nih.gov/pubmed/2735964
https://www.ncbi.nlm.nih.gov/pubmed/11019787

(2): Proposed mechanisms, if you are interested:
https://academic.oup.com/rheumatology/article-pdf/47/3/249/5025761/kem279.pdf
https://citeseerx.ist.psu.edu/viewdoc/download;jsessionid=e933d87ea8d51bac4430a347aa593799?doi=10.1.1.633.8921&rep=rep1&type=pdf

Post Edited (xy123) : 11/30/2018 3:29:02 PM (GMT-7)

Posted 11/30/2018 3:30 PM (GMT -7)
I think it is good to inform your doctor about the problems you are experiencing while you are on MTX. Make sure your doctor is attentive, and knows what he is doing.

Post Edited (xy123) : 11/30/2018 3:33:43 PM (GMT-7)

Posted 11/30/2018 5:11 PM (GMT -7)
Hi,
I am on Humira currently. I was on methotrexate for approx. 4 months. I walked around in a fog. My hair did fall out at an alarming rate. I was taking 1mg of folic acid every day. Humira has it's own litany of side effects. I hope things work out.
Zen
Posted 11/30/2018 8:43 PM (GMT -7)
Dale, that is so similar to what I am experiencing. I've been on it for about 4 weeks now (12.5 mg each week) Since I never get headaches I noticed that right away but the eyes burning is concerning. I called the eye dr but can't get in until next month. It's definitely not dry eye, I've experienced that before and know what it feels like, this is actual burning, like smoke in your eyes. One of my eyes was puffy and swollen last night but is back down today. I'll take my next dose since it's on Monday but will call my GI; I'm sure he won't know and recommend I go to the eye dr.
Zen, I'm taking 1mg folic acid everyday too and am hoping my hair is just shedding a little bit. It's fallen out a lot during 2 bad flares since I was dx'ed and that was such an added stress to am already tough situation. I know it shouldn't be something I care about if my flare is under control but I guess it's just harder especially being a girl. Did the hair loss stop or slow down at any point during the 4 months? Why did you stop taking it after 4 months, did your dr just decide that was enough of a short term treatment? My dr has said I'd be on it anywhere from 3-9 months so who knows. Thank you for replying, side effects can be tough to diagnose!
Posted 12/1/2018 12:08 PM (GMT -7)
Wednesday77 it's been four days since my last Methotrexate and the burning sensation has almost stopped. I'll let you know if it returns after my next dose on Wedneday.
Posted 12/6/2018 12:20 PM (GMT -7)
Dale, I tried to be more aware of the time myself and the burning in my eyes and watering seemed to slow/almost stop as the week went on - I took my Methotrexate dose on Tuesday and yesterday and today the burning and watering in my eyes has returned. Is this common with other people across the board?
Posted 12/7/2018 1:26 AM (GMT -7)
Yeah, it happens to me, but it's gone in less than a day so I just put up with it. My GI knows. He says as long as it's not longer than a day, I should be okay.
Posted 12/18/2018 3:42 PM (GMT -7)
Just to update, it seems the burning starts 24 hours after my dose of Methotrexate and lasts on and off for about 3 days. It's not just mild burning, it's like the kind where of you're chopping onions your eyes water and you can't keep them open. I was driving today and had to pull over because I literally couldn't see. I'm waiting to hear back from the dr; IDK if he'll care or not but in case this happens to someone else it seems it is from the methotrexate dose. sad
Posted 12/22/2018 6:33 PM (GMT -7)
Sorry for taking so long to get back to you but I have been paying more attention to my eyes burning. It starts just a few hours after taking Methotrexate and then gradually gets better but never disappears before I take the next dose. Luckily it does not bother me as much as it does you. I see my GI on 8 Jan so will mention it to him.
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