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Crohn's Disease Forum » Treatment » Methotrexate » Word to the wise(:


11-04-2012, 04:01 PM   #1
Ckt
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Word to the wise(:

Hi all.. I just wanted to post some experiences I have had on methotrexate as I started on it along with humira recently..
I have had many side effects. The first ones were flu like at toons with low grade fevers, severe muscle aches, night sweats and chills, nausea and vomiting. Then came the ever lovely side effect of horrible deep ulcerations in my mouth and down my throat, huge sores on my lips. I've had a few aphthous ulcers when I have flares with crohns but these took it to another level..or 6! They have been very painful especially when they skin sloughs off,bleeds a ton,then remain raw until the next day when a new scab has grown.
I'm posting this because if you do experience these ulcers or similar side effects as above, let your docktr know right away. My methotrexate was held for a week and then we are retrying it at half the dose. Even knowing these side effects may return, I think the trial is worthy. I had begun to feel my crohns symptoms were lessening and I'm willing to chance it again if there's that chance of me going into full remission. I don't have a lot more options honestly!
11-04-2012, 05:57 PM   #2
KWalker
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Wow! These are the same symptoms I had! I always thought it was my crohns flaring and could never figure out why I would get terrible night sweats in the middle of winter in a cold room. I have a doctors appointment on Thursday and I was going to mention methotrexate again but after you said this, I think I'll skip that.

How did you take it? At first I took it orally but then switched to the intramuscular. Like you, I feel like I'm at a dead end with medicine. I've been on the heavy ones, the little ones don't work and because I don't feel a lot of symptoms currently I have a hard time going on any of the big drugs again. I hope you can find answers soon.
11-04-2012, 09:42 PM   #3
Ckt
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Hey KWalker..I took methotrexate subcutaneously usually in my abdomen. It was a scary thing for me to consider going on it but I do think it has some merit. It is a sad thing that I'm willing to go through the chance of getting this ill again but with the dose cut in half I'm hoping I can tolerate it.
The ulcers have been the worst. I felt like I was swallowing razor blades and if one looked into the back of my throat, these huge white patches and ulcerations that bled were seen..
What did you want to say about methotrexate with your md?going off of it ? It's all such a crap shoot!
11-05-2012, 04:50 AM   #4
KWalker
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I was going to consider going back on it. I'm currently not on any meds but dealing with abscesses that I don't want to progress. When I weighed out my options I felt like methotrexate might be my best option. When I got the mouth ulcers they were so bad that I literally couldn't eat. I had to get this numbing stuff that you gurgle around in your mouth and it froze the whole mouth for a little while. It helped me eat, but it also meant I couldn't taste anything.
11-05-2012, 09:34 AM   #5
Ckt
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I know right?! Those mouth ulcers are brutal. I have had a few shallow one during flares and the corners of my mouth crack. But this was on a whole different level...deep oozing ulcers all thruout my mouth and throat, on my lips. I couldn't eat either..just drink really cold fluids!the skin in my lips would slough off, bleed and form new scabs which would do the same thing over and over.my gi doctor says its definetely a side effect of methotrexate but after being off it this week ill start back on both humira and half the dose of methotrexate .im willing to take a chance on it because I do think its worth it. If this doesn't work , I would say the stem cell transplant will be more of a reality to me but I hope not. Killing off all my white blood cells doesn't sound like a great party to me!
Have you ever done combo therapy?if so how did it go?it sounds like a biologic would really be helpful for you. I understand they may not want to because you have abscesses.i dokie they help with fistulas although I have never had a fistula thank goodness!
Take care and hope to hear from you soon..cindy
11-05-2012, 07:39 PM   #6
KWalker
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At my worst, the doctor counted over 20 mouth ulcers! It was much worse than anything I've dealt with because of crohns. I've been on Remicade and Humira in the past (not together) but had little to no success and really the abscesses are my only concern for wanting to get meds to take care of them because without those crohns doesn't bother me at all right now and I HATE the thoughts of going on biologics with the few symptoms I have.

How much methotrexate do you take? I believe I took 6.5-8mg but I could be wrong. Let me look at the syringes I have and I'll know
11-05-2012, 07:57 PM   #7
Ckt
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I was on 25 mg each week which is the standard dose for crohns but clearly I couldn't handle it. So this Friday I restart it at 12.5 mg along with 40 mg of humira.
I understand not wanting to take the high powered biologics. The potential side effects are very scary. I wrestle with my decision every day about being on them. The truth is I just don't know what else to do. I have tried all the oral crohns meds and so many alternative therapies and none sustained a renission. Only you can make the choice that is right for you. I would just suggest you do tons of research and be informed then do the best you can and let it go!thats what I'm trying to do!
11-05-2012, 08:15 PM   #8
KWalker
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Okay I was definitely on more than the dose I guessed because my doctor said I was on a higher than average dosage for crohns treatment. I'd like to think I'm fairly educated with medicine and have high expectations for my appointment and hope it goes as I plan.

It's one of those things where you're damned if you do and damned if you don't lol
11-06-2012, 03:48 AM   #9
Jessasha
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Hi CKt, I have had these ulcers also, currently going through one now at the back of my throat, I was on Humira up until 3 weeks ago but still suffering from the allergic reaction I had on it.
I have had ulcers on Methorexate but not as bad as on the Humira..
Wonder if its worth taking the Humira on its own for a while to see how you go? It's difficult to pinpoint side effects when your taking a combo of meds... Just a thought. Wishing you well.
11-07-2012, 05:55 AM   #10
Ckt
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Hi jessasha! Thanks for the suggestion.i have been on humira alone for about 3-4 years and it began losing its effectiveness so I was having symptoms. I also take it once a week. So that's why they thought to add methotrexate because its supposed to increase humiras potency by 30%.i had also barely tried cimzia but was told to stop if and go back on humira and add methotrexate.
Yes..those ulcers were brutal: my whole throat was covered wit them and my lips looked like chopped meat!theyre healing up nicely now tho!
11-25-2012, 04:55 PM   #11
ron50
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Hi all,
I have been in the same position with cancer chemo,methotrexate is also used as chemotherapy. I had chemo every tuesday for a year. At first my mouth was raw and bleeding. The oncologist suggested a number of over the counter mouth washes. I could never use them as they made me gag. One of the oncology nurses suggested I make my own. A teaspoon of bi carb soda and a teaspoon of salt in a glass of warm water . Mix thoroughly and let it cool . it can be used as many times a day as you like ,just gargle and rinse. It really worked. Cheap ,effective and readily available. Ron.
11-27-2012, 06:31 AM   #12
Scaryman
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I'm recently increased to 25 mg of subconscious methotrexate injections. I'm also taking Humira and I do not have any of these ulcers. Thank goodness! But I do read these threads to make sure that I'm aware of the symptoms before they get bad. So ulcers with methotrexate are common?
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Diagnosed 2003
5-ASA- failed
Imuran-failed with a strange reaction-paralysis
Remicade- failed with infusion reaction.
Mesalamine-another failure
Entecourt - fail- no help.
currently on Methotrexate 25mg and Humira combo.
Folic Acid Supplement
Hyclosomine,Ultram,vicoden for pain as needed
Extended right Hemocolectomy 5/24/13 Univ.Of Chicago
11/7/13- small crohns ulcer at surgical site (active).
11-27-2012, 08:18 AM   #13
KWalker
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I got my mouth ulcers early on with methotrexate. And like I said above (I think) there were over 20 at a time. It was literally to the point where I couldn't put anything in my mouth. Solids were too sharp, soup was too hot/made it sting, and it really hurt with the cold temps from the ice cream. I had to swish this numbing stuff around so it would freeze my mouth long enough to eat. You will definitely know if you start to get anywhere near that. Even know that I'm not on methotrexate I get the occasional mouth ulcer and I'm not sure if it will be a lasting side effect or if its unrelated.
11-30-2012, 09:54 PM   #14
Scaryman
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At least I know what to look for as far as ulcers. The only side effects that I have with methotrexate currently is when they increased it to 25 mg subconsciously. Hour later at work I passed out and then was woken uplike drunken feeling was kind of out of it and I slept it off another three hours and returned to work.
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