Its been 4 days since I ingested my first 5 mg dose of Methotrexate --MTX.
Now I have bilateral edema with HOT TIGHT RED SKIN. HOT TO TOUCH. Skin that is so tight that the tops of my feet have overtaken the ankles.
Am going to call the doctor on Monday. Visiting nurse is coming this morning for the eval.
On the other side: my pain level is down, my joints hurt less, swelling in my right arm went down.
Have any of you had this side effect on methotrexate, or any other side effects while on methotrexate?
I could use some hope.
I don't even play a doctor on TV, but it sounds like you have celluitis on your legs. I hope you feel better soon, and get answers even faster.
Hugs, Sharon
It does sound like cellulitis. Get in touch with your doctor. Also, I recently started methotrexate too and was told to make sure to not go on Biaxin(sp?) or penicillin type antibiotics with methotrexate so be sure to check with the doctor prescribing the methotrexate about whatever med they use. Hope you get this under control soon. Feel better
Nancy
My face turned red and hot today. Temp is 99.1
That suspicious faint malar rash.....well, it is no longer faint.
I'm really concerned, but I want to wait until morning to call my doctor. I don't trust the ER, after what happened last time I was there, two weeks ago.
What did the visiting nurse think? Be sure to call doctor first thing in the morning and beg, plead or whatever you have to do to get in to be seen.
Nancy
He -- the visiting nurse -- wasn't worth much. Did a lot of history, confirmed meds.
Irony is the spice of my life. Went to bed at 3AM with the problem, woke up in pain at 6:30AM, the redness was gone. Still felt warm to hot. Visiting nurse came at 8AM. He didn't even want to admit to the edema, until I demanded that he look at the tops of my feet. Then he conceded a little bit....my right leg is only 4x the size of my left in width. The tops of my feet go over my ankles but yet he had a hard time admitting to seeing the edema.
Then, around 6 PM, it comes back again. This time red face too. And a 99.1 temp.
You do need to see your doctor.
susanep
Take photos and call the doctor!
SjoAmy I know what you mean about the ER but it sounds like you need to be seen ASAP.
Hope it has all subsided by the time you see this post.
Dee
I did not have that side effect with the methotrexate, but almost died (no exaggeration) from its effects on my lungs. I assume you stopped taking it right away, to prevent further issues from starting.
I agree with everyone here who has said see a doc right away, even if that means the ER.
Take care,
Genko
I would go to my doctor's office as soon as it opens and stay there until they see you.
But then, I am rather assertive. ;D
Hugs, Sharon
SEE DR IMMEDIATELY!! Do not pass go.
With any drug, if you have a big side effect, call your dr.
I'm sorry methotrexate didn't work for you. I've been on it a long time. I'm taking 25 mg a week and it's helped me alot.
Talked to my pharmacist, who is so good she ought to be a doctor! She said as long as it was phasing in and out, with more emphasis on out and being able to phase out, then I was okay and that this was expected. Talked to the OT, she agreed with the pharmacist, and that this being a difficult inflammation to bring down, to stick it out until it becomes unbearable, and to call her and show her changes if/when it happens again.
Am going to take pictures from this point on, and journal length, duration and symptoms from this point out.
Finally got a shower today! Felt SO VERY GOOD! Took a lot out of after tho. Had to take pain med.
I got a really great OT.
2nd dose of Methotrexate was last night. Slept like a baby last night. Tonight, stomach is a bit sour....had regurgitation that almost bordered on vomiting. Informed the neurologist of the addition of methotrexate. So far so good.
HEAVY nausea. ???
I let my rheumy know about the nausea and diarrhea and she switched me right over to injections. No GI issues at all with the injections. I'm happy to report. Call your doctor, don't suffer needlessly!
Nancy
Nancy,
Was there a difference in the effectiveness of the shots vs oral ?
The shots are utilized by the body better from what I've read. Also if you need a higher dosage they will switch you to shots because they can give you more than what they can give orally.
Are you taking folic acid with the Methotrexate?? I think that is the correct med!!!!Someone correct me if I am wrong. This drug helps to tame down the side effects of the methotrexate, i.e.:, nausea, etc. irish
Before beginning Mtx, I was on 3 MG of folic acid a day. I thought that was going to be plenty. I was taking that dose to keep the hyperhomocysteinemia in check. Just took 1 mg of folic acid just now.....because this has been the gift that keeps on giving. I am probably going to have to cancel out of my pulmnology appointment tomorrow. I just can't control my stomach. Can't get on a bus like this!
I hate canceling the day of the appointment but I am certain that they don't want me wretching and vomiting in the office.
I could be wrong though.
Yes Folic acid is given to help control the side effects of methotrexate. My doctor told me up to 3mg is the most they can give and has me taking it daily. I started out at 1mg. I'm still taking 2mg with the injections. The nausea for me got better as I got further out from the day I took my methotrexate I took it Friday, felt kind of crummy mon and Tuesday but managed to work, usually was feeling better by Wednesday.
Hope you start feeling better.
Nancy
Called the doc this morning. Nurse has to talk to doc, but I may be Rx-ed nausea med.
Nausea, vomiting & diareah from 7 PM To 2 AM. Took an extra mg of Folic acid at 1 AM, guess that helped settle down the stomach. Slept till 7:30 AM. Feel pretty good this morning. Bought extra folic acid.
Took Mtx. Tuesday night 11:30 PM. Wed my stomach was okay. Thursday @ 6 pm.....notice first sign....didn't think of it related to Mtx until 7....when I looked at the clock and realized, I'd had this problem for a hour......down hill from there.
Sometimes I wonder how I pick these doctors!
Got in touch with my PCP.....oh Nilly!
His nurse first tells me about how he wants me on NO MORE THAN 400 MCG A DAY.
I did end up talking to him on the phone.......his nurse & him say that FOLIC ACID CAUSES NAUSEA.
After reading your posts last night, I surrendered to your suggestion of taking Folic Acid. At 1 AM, after 6 hours of misery, having called the visiting nurse last night and was told by her "Well, what do you want me to do?" -- by the way my PCP said that same question to me as I talked to him, calling rite aid and getting no result in trying to get in touch with a pharmacist to talk to.
I surrendered to your suggestion and took 1 mg of folic acid. By 2 AM, stomach was in the process of settling down a little -- enough to fall asleep in my hospital bed after 6-7 hours of stomach pains that were piercing with nausea, vomiting and diarrhea.
Experience from fellow sufferers always goes farther than medical data of doctors.
He wanted to fire me for not taking his guidance on the folic acid.
My pharmacist supported your view, which is now my view too.
Alas, I think I pissed off the best doc I had in my pocket.
C'est la vie!
C'est la vie is right! Sometimes the "best doc" in your pocket just means your pocket doesn't smell as bad as it did when you had the "bad" docs in there as well. Still smells though. So sorry Amy!
I finally have some awesome docs and I still don't feel as though they're permanent. I keep thinking they'll one day take off their people mask and reveal a lizard... Or something like that. =)
I think I told you that I couldn't hang with MTX but one thing that I *thought* was common knowledge, was the anitnausea properties associated with the folic acid. Also, as someone or a couple of people mentioned, the side effects all the way around, are supposed to be much, much less pronounced with injections.
Still praying!
~Andrea
There are no rheumys in my area that are taking new pts until 2014.
So PCP stepped up.
I mentioned to PCP about the MTX injections bypassing the stomach. He said if I wanted THAT then I would need to get a rheumy. My PCP knows that rheumys are not accepting new pts until 2014. I said "You know that is not possible yet, and you know I need care, that it would be unethical to not treat me."
But he is willing to write an anti nausea med. Geez.
Can you call and get an appt with one of the rheumies for January 2014? Get the appt now so you don't have to wait any longer than necessary.
I guess the anti nausea meds are better than nothing. I read somewhere that splitting the dose between 2 consecutive days sometimes helps lessen the GI side effects. You might look into that.
Sorry you're having all these issues
Nancy
I have tried it on my own, and through referral. Honestly, I just think they don't want to take my case.
Mind you I am forthright, sometimes tactless, I don't mince words, or pretty up a dirty picture.
I'm gonna split the MTX to twice a week, continue Folic Acid supplementation btwn 3-5 mg per day.
I'll take the nausea meds before bed, so my stomach doesn't begin to sour in my sleep.
My gratitude to all of you. Because of you, my stomach recovered.
I feel like a new woman with supplementing with folic acid.
I'm going to print out at the library, my sources for this folic acid debate.
I'm going to get the opinion of my Endo & Neurologist on the folic acid debate.....My bet is that they agree with us that folic acid needs to be supplemented.
My pharmacist and I agree folic acid would be very difficult to "overdose" on. My PCP and his nurse thought I was overdosing on it. 3 mg is not an overdose. Especially with hyperhomocystinemia and seizure disorder and stroke in my history.
Folic Acid is also called B9. ALL B VITAMINS PEE OUT EXTRA.
He's a compassionate PCP, just not too smart. lol
This is bumped for a fellow Methotrexate user, new to the medicine.
Also, the PCP here, is the one who wanted to learn about Sjogren's Syndrome.....same one I gave the books to.