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How Long after Mtx do you feel lousy?

Started by Sleepy In Seattle, May 29, 2012, 02:41:39 PM

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Sleepy In Seattle

Just wondering - I am new to it (5 weeks) and trying to plan when to take it. I have not had many side effects yet, thank goodness, but I am not up to full dose yet.

I am trying to plan when to take it...at night, in the morning, at lunch, etc....

I know everyone's different, but I'd love to hear some of your experiences.

My mouth tastes funny within about 20 minutes...but when do stomach issues tend to come up? Immediately, or an hour later? 6 hours later? What about fatigue/general ickiness? If I haven't run for the bathroom within 4 hours, am I probably okay to go run errands?

Right now I take it at lunch and then mostly stay home for the rest of the day, just in case, but maybe that's not necessary....just trying to figure things out and still live my life as best I can...

Thanks for any advice....
Sjogren's, Lupus, Raynaud's, APS
Fatigue, Brain Fog, Autoimmune Hearing Loss, joint/muscle pain, dry mouth, clots in retina, etc
GF, "semi-Paleo" diet, Supplements, Plaquenil 400mg/day, Aspirin 325mg/day (for APS), Methotrexate 7mg/2x per week, Prednisone 3.5mg/day

eyeamdry

Sleepy, I take my MTX at all times of day.  Sometimes it is at night because I have forgotten it during the day.  I would like to add since you are fairly new to MTX that I've been on it 5 years that when I started it I was very sick and had just been diagnosed.  All I could do was lie on the couch or bed face down.  I couldn't sit or lie on my back. 

I took my first dose and then on the day before my second dose, I had an "aha" moment.  I thought I am feeling some better than last week.  It was a small amount better, but I was so sick that I noticed any little bit.  I couldn't think what had made me "some" better.  Then I thought, it's the MTX.  I started out on a full dose of 6 tablets and I think this full dose getting into my system gave me a jolt or something to start reversing the pain.  I did not have such a noticeable effect every week for sure.
I can't still know how much it helps me, but I am not willing to mess with my dose right now.  Good luck. 

Lucy

irish

I took it for about 4 months about 7 years ago and had to quit because of other health issues.

However, I took it after noon meal with my folic acid. I never did feel very bad. I had a few stomach twinges, etc but just never expected to feel ill and for some reason I didn't. I took 10 mgm once a week, if I remember correctly. It was starting to help my autoimmune issues when I had to quit. Wish I could still be on it. Irish

harrigan

Hi Sleepy - I'm on 20mg injections which I have about 2hours before bed on my MTX day.  Within the hour I get the same odd heartburn and characteristic headache and I'm usually in bed before 9 that day.  I feel a bit like I did in early pregnancy till mid morning, then I'm ok again.

I think you just need to experiment a bit to see what suits you best then go with that is.  Good luck xx Ailsa
Female, 54
Diagnosed with Sjogrens March 09; Rheumatoid Arthritis February 2010
Meds: abatacept, Methotrexate injections , Folic Acid, Amitriptyline, Ozepramole, Tramacet, Glandosane & Viscotears.

sewandsew

I have had no side effects from MTX.  My dose is once a week and I take it after lunch.  Just remember to drink lots of water.

eye2dry

Hi there.

I work mon. tues. and wednesday. So i took mine on wednesday night in the beginning...just in case the next day I was sick.

Never happened...I had no side effects.

I hear or read somewhere if it makes you have GI issues tthat to take it before bed and "sleep through it" but I read elsewhere that it was a little hard on the kidneys if you didn't drink lots of water with it....so I never took it right before bed b/c I wanted to flush my kidneys of it.

Everyone has had either good or bad luck with how they took it and probably found the best "recipe" for themselves with experimenting.

I hope you do really well with it.

eye2dry

Sleepy In Seattle

THANK YOU, all!!!!!

I was so afraid of this medication, but it seems to have really minimal side effects for me so far....I hope that continues and my liver holds up. I am eating very carefully and drinking tons of water, resting, etc. I want this to be a sustainable treatment, because it does seem to make me feel a lot better. Maybe it's a good fit for my body chemistry - I don't know.

Right now I am at 20mg each Tuesday - I get a funny taste in my mouth and fart a lot (LOL...) but that's about it. I am maybe a bit low energy for half the day. But then I feel pretty dang good for the next 4-5 days...then on Sunday/Monday it's like I need another dose. So I guess it's doing what it should.

I will keep my fingers crossed....and thanks again for the info. So hard to know what to expect!!!!
Sjogren's, Lupus, Raynaud's, APS
Fatigue, Brain Fog, Autoimmune Hearing Loss, joint/muscle pain, dry mouth, clots in retina, etc
GF, "semi-Paleo" diet, Supplements, Plaquenil 400mg/day, Aspirin 325mg/day (for APS), Methotrexate 7mg/2x per week, Prednisone 3.5mg/day

eyeamdry

Sleepy, while MTX has bothered some people, I don't recall a whole lot of people on this board complaining about it having bad results.  I read more about people who are expecting bad effects and are surprised that MTX does not give them a hard time.  I've been on it for 5 years and my liver is probably older than yours and is still going strong.  I hope this works for you.  If you have to adjust your dose a bit, go with the dr and give it a chance to see if it will work.  Best to you, Lucy