Goodbye Cytoxan! First dose of methotrexate is tonight. Any tips?

[SpaceflightAddict]

Hello everyone!

It has been far too long since I posted here... I started feeling better, and life resumed a somewhat normal pattern.

Anyways, the decision to switch to methotrexate came at my rhuemy appointment earlier this week. I have done plenty of reading about it here and elsewhere, so I pretty much know what to expect, but I am still a little nervous about the first time :blushing:

The doc put me on 15mg of methotrexate once a week, and 1mg of Folic Acid every day.

I picked Wednesday night as my night to take it since I always have Thursday off of work. I am expecting to get some nausea, and maybe being a bit more tired than usual.

Is there anything else I should expect or worry about?

I would also love to hear any tips or tricks y'all have for dealing with the side effects of methotrexate.

Thanks so much!

-Andy

[Dirty Don]

Hey Andy, I've been on mtx for 2+ years now. I use the same dose you are starting on, hasn't changed. The folic is to counteract the mtx in the kidneys...but, as I found out, I lost hair at first, so doc tripled my dose of folic and it worked. I also experienced the nausea and ill feelings for a couple of days after, so doc split my dose in half, 12 hours apart...it worked, nausea went away...still feel a bit lethargic after my Saturday dose, but much better than at first. Best to you.

[renidrag]

Glad things are working out for You Andy, hope it continues.
Dale

[annekat]

Andy, I'm on the same dose as you and Don. Splitting the dose is definitely recommended. You can split it in half, or do as I do, take 4 pills at night, sleep through them, get up and take 2 more pills. I tried 3 and 3 for less nausea at night, and have gone back to 4 and 2 for less nausea the next day. I was recently complaining about the nausea after getting it from a new pharmacy that uses a different maker of the generic. But that seems to have worked itself out, and the last couple weeks, I really haven't noticed anything. 15mg. is a smaller dose than many take, and you will likely get used to it, or even be a lucky one who doesn't get the nausea at all. In retrospect, the side effects of the CTX were worse, for me, until I got used to it; of course I was a lot sicker then, so everything was awful! Congrats on getting off the CTX and moving to the next phase of recovery.

[SpaceflightAddict]

Thanks Don, Dale, and Anne!

I took the full dose at around 9pm last night.

So far I am not feeling any side effects at all!

I might get lucky on this one.

-Andy

[annekat]

Andy, I think you were smart, if you were going to take the full dose, to take it at night. I've also heard to take it with food, so maybe hve a little snack before bed.

[Pete]

Andy, I have a question for you: How long have you been off ctx? When I made the transition, I was off all immunosuppressants for about two weeks to allow the ctx to clear my system. Things went smoothly.

I take 25 mg/wk mtx and split into half doses on Wednesday morning and evening. I am a little tired on Thursdays, but nothing debilitating. I also take 1 mg/day of folic acid.

[SpaceflightAddict]

Andy, I have a question for you: How long have you been off ctx? When I made the transition, I was off all immunosuppressants for about two weeks to allow the ctx to clear my system. Things went smoothly.

I take 25 mg/wk mtx and split into half doses on Wednesday morning and evening. I am a little tired on Thursdays, but nothing debilitating. I also take 1 mg/day of folic acid.

Pete,

I specifically asked my doctor when I should start the MTX, she told me to start the MTX the day after I stopped the CTX, so there was no delay at all.

[annekat]

Pete, my doc lowered my CTX from 100mg. to 50mg. for a couple of weeks, I guess, while starting me on the MTX. That was his idea of making the transition while waiting for the MTX to begin to work. He is not a WG specialist, but in any case, it worked out OK for me. Some months later, the MTX dose was found to be too low, as I flared, so it was increased, and has remained the same since.

[NikkiNicole]

I started my MTX doses in pill form and was very nauseous. It would have been OK if I was off work, but I work in a high stress environment that requires my full attention and ... the nausea was making that difficult. So, I switched to injections.
I'm not real happy with those either. I do it once a week and for two and a half days, I feel awful, I can't even describe it. I'm lethargic and just feel "fuzzy" but ... I am better able to function than with the nausea.

Good luck. We are all different even with our similar disease!

[Deborah T]

Hi Andy - I work M-F so I take my MTX Friday nights to deal with any s/e over the w/e. I have waste-long hair and did NOT want to lose it and am on one megadose Folic Acid qwk. I used to get GI upset with the MTX and that tired feeling, but it mostly clears by Monday. It got better to the point of minimal s/e after I was on it a few months.

Best of luck to you -
Blessings -
Deborah T

[woz]

Well done Andy,
I can remember when I kicked the Cytoxan, felt sooooo much better, especially in the stomach.
Keep up the good work.

Regards Woz......

[Alysia]

Hi Andy,
I am the only one around who took mtx differently: 2.5mgX6 days a week. this way I didnt have any nauseas.
but I had hair loss. so I took multi vitamin "strong hair" and folic acid and avacinc.
since 10 March I am no longer on mtx :thumbup: only rtx.
anyway, it seems to me that after ctx (I was never on it, just heard stories here) mtx is an "easy walk in the park"....
congrat for the progress :thumbup:

[Wegetarian]

I've never been on CTX, started straight up with MTX. My dose was slowly upped to 25mg/week. I take it all at once on Mon evening and the folic acid on Tue morning (or Mon Night). When I started back in August or so, I used to get nauseous for a few days - but that passed. Now I don't feel anything after taking it. Last Monday I went to the gym after taking my dose.

How long have people used MTX and do you know if there are plans to discontinue it or lower the dose? My doc said last fall that we might lower my dose this spring, but dunno.

[Dirty Don]

How long have people used MTX and do you know if there are plans to discontinue it or lower the dose? My doc said last fall that we might lower my dose this spring, but dunno.

I've been on 15mg weekly for 2+ years. The doc talk is that when my numbers are steadily good (normal?), they will consider taking me off mtx, but not until then. I have gotten close a couple of times, but seem to edge back up just around a year each time. THAT may be normal now for me, who knows. If I don't get off mtx, so be it. I'm 'threatened' with rtx next anyway if my numbers show drastic changes...sheesh.

[KimH]

I was on MTX 25mg weekly by injection. I tolerated it well but hated the idea of shooting it into my body so I had my husband give me the shot. My doctor gave me folic acid to prevent hair loss. I took methotrexate for a year but had to change to CTX and then RTX. I am one of the lucky ones that didn't have any overt bad reactions to the meds. Are there others out there that took the MTX by injection? My doctor told me that would help avoid nausea. It seemed to have worked for me.

[Wegetarian]

The doc talk is that when my numbers are steadily good (normal?), they will consider taking me off mtx, but not until then.

What are these evil numbers that you talk about? Pr3?

[Dirty Don]

What are these evil numbers that you talk about? Pr3?

All pertinent numbers, Pr3/ANCA..., must be at upper 'normal' or lower for at least a year AFTER I'm off pred before they will consider taking me off mtx.

[SpaceflightAddict]

All pertinent numbers, Pr3/ANCA..., must be at upper 'normal' or lower for at least a year AFTER I'm off pred before they will consider taking me off mtx.

My doctor goes off of white blood cell count, sedimentation rate, c-reactive protein, and how I feel. When I was getting diagnosed, they ran Pr3/ANCA tests once, and I was completely negative (0, none, nada, zilch) so they don't even test me for those now.

[drz]

Hello everyone!

It has been far too long since I posted here... I started feeling better, and life resumed a somewhat normal pattern.


Is there anything else I should expect or worry about?

I would also love to hear any tips or tricks y'all have for dealing with the side effects of methotrexate.

Thanks so much!

-Andy

Buy non alcohol beer cause alcohol and MTX don't mix well. Get regular labs to monitor for any bad side effects and expect it will work for you like it should. Good luck!