Might need to start MTX, what should I expect?

[Kancer]

Hello guys,

Looks like Prednisolone 10mg and Pentasa 2g/Day and antibiotics (flagyl & something else) isn't really helping me get into remission and since I have been on steroids for 4months from high dose to 10mg now, the doc thinks its time to move to chemotherapy drugs.

I don't feel anything despite an ESR of 49 and CRP of 29. No D or Pain. But I did taper the steroids myself to 0mg and ended up with a fever 5 days after at around 102F (On and Off). Restarted my steroids and fever went away.

I am just f***ing exhausted and just losing hope on life. I am 19 and I take nearly 20 tablets a day. I don't know what to expect if I were to take methotrexate and would love personal experiences of people who have taken it before. Both experience initially as you start and maintaining dosage.

And what should I be expecting if I were to just taper off the steroids and treating fevers with panadol and avoiding any drugs? I would love to control my disease from diet.

 

[Thaymez]

Your in the right place with a lot of company when you say you're feeling exhausted and losing hope on life, because we've all felt that way.
I just wanna say I was diagnosed almost 2 years ago and I was also taking 20 pills a day and was on 35 miligrams of pred for about 3 months straight before beginning a taper. Any way one of the first drugs they put me on was a chemo drug -6mp-. I had no side effects. In fact my entire life I was so against pills and medicine and when I was diagnosed and put on all this stuff it really depressed me. Long story short now that I'm in remission and am on only humira, 6mp, and apriso, if there are any side effects I don't notice them at all and I am so thankful to be able to live life to its potentials again.
The biggest issue for me was realizing I had no control, letting the dr.s take the wheel, and give in to the drugs they gave me. That being said if I continued to fight them and try to control this demon with diet, I'd be up a creek without a paddle.

Good luck to you!

 

[FrozenGirl]

Initially I had fatigue and dizziness. It was pretty sucky the day after ( I inject it) but now i only get fatigue no dizziness. When I increased my dose to 15mg I got nausea shortly after injecting. I am now trying to remember to take Gravol half an hour before to help that however it too seems to be fading as time goes on.

Effectiness wise it is helping me. My GI said can be up to 12 weeks to see full effectiveness. It is not 100 percent for me but it's an improvement and right now I don't have too many choices left so I wil take it.

 

[Kancer]

What you would guys consider a high dose of MTX and what dose for maintenance. I am just afraid as my doc said I might need to be on it for life.

 

[KayleighMeek]

I was on methotrexate a while ago and the main side effect I had was nausea but my doctor increased the folic acid and that really helped. I think the max dose they give is 25mg which is what I was on and comparing that to what they give to people for chemotherapy it is tiny.
Also with methotrexate you can have tablets or injections many do better with the injections as it doesn't seem to be as bad for nausea, although it still does happen for some.

I have come to accept that I will be on some kind of medication for the rest of my life and it's not something I was happy about but I need it so I can have a relativily normal exisitance. Whilst I was pregnant I was off all medication for the first time in nearly 7 years and I loved it but I have had to start back up as I was becoming ill again. I think diet should be used as well as medication but for many it isn't enough alone.

 

[lgpcarter]

I just took my first dose this week, so only have limited experience to offer and also looking for any tips, etc. I am on 12.5mg/week and doing the tablets. 5mg of folic acid on the the non-methotrexate days.

I took it on Monday morning and by noon I was so tired and off feeling I came home from work. Was pretty crampy, too, but not sure if that was the popcorn I chowed down on the night before. Also had some diarrhea. Felt better but still a bit off on Tuesday and "normal" again on Wednesday.

Think I am going to try to take it on Sunday night for the next dose and hope that I sleep through the worst of the side effects.

 

[Mr chicken]

Ds is 11 and is 12.5 mg of mtx a week plus humira .
He takes folic acid 2 mg a day. Everyday including mtx day .
No side effects from the mtx
When he was on 1 mg a day skipping the mtx day he had fatigue flu like symptoms mouth ulcers etc....
So for him folate ( not folic acid ) was the key .


Getting the right meds is critical and having ones that work