Starting methotexate, experiences?

[FrozenGirl]

(This is cross posted please delete is that isn't allowed)

So today I saw my GI again. 4 weeks ago I had a cope that showed since stopping Imuran I was flaring (had to stop due to chronically low WBC count even on very low doses) I was put on pred (20mg) which helped but no remission.

He agreed we needed to change something. He gave me 4 options.
1. Add methotrexate to Remicade
2. Stelera
3. Entivyo
4. Surgery

I chose Remicade with methotrexate 12.5mg. I wasn't ready to switch biologics yet since it was working well with Imuran and he has never had a patient on Entivyo (it is only going to be approved here starting next week). We both agreed I wasn't at the surgery point yet.

I did my first injection about an hour ago and it went really well. Here's hoping.

Anyone have experiences on when it will start to help? Side effects? If you got side effects how long did it take for then to start?

 

[Robrich]

I think you made the best choice. Took a little over a month for it to work for me. Started at 12.5 mg but went up to 25 mg for about 8 weeks. Then the fatigue got to me. Reminded me of the liver disease I had from m 6 mp.
Side effects can come on right away, next day, 3days later. Nausea was the main SE. Fatigue is ongoing for me. Less so now that I'm back to 15 mg. injecting in the thigh was better than the abdomen.

 

[FrozenGirl]

Thanks, I am hoping tomorrow wont be too terrible, working at 9AM. I injected in my thigh. For some reason I felt like it would hurt less there, though in reality it was almost no pain. Remicade IV's are way more painful comparatively. I am a little sad it could be that long to work though, I want to be off prednisone asap.

 

[pdx]

Sorry to hear that you're flaring. My daughter started oral methotrexate a couple of months ago, both to give her Remicade a boost, and to hopefully help to delay antibody formation. The MTX seemed to help her symptoms right from the first dose, and she's had very few side effects. She gets just a little nausea the night she takes it, and the nausea is controlled pretty well if she takes a zofran 2 hours before the MTX. She also takes 1 mg of folic acid every morning (and gets another 0.6 mg of folic acid daily in her multivitamin), which is also supposed to help with nausea caused by MTX.

My daughter actually looks forward to MTX night, because she feels better for 4 or 5 days afterwards, and then gets more diarrhea for a few days until the next dose.

Hope it helps you soon, and that your side effects are minimal.

 

[FrozenGirl]

So first dose last night , didn't see much change in symptoms but I do go up to 12.5 (vs 10 this week) next week. No nausea but I did have dizziness today. Not horrible but very present particularly when moving my head quickly. Seems to have gone away now. Hopefully it wont happen next week but if it help get me into remission I can deal with a day of mild dizziness.

 

[pdx]

Oh, interesting about the dizziness. My daughter has complained a little about dizziness lately, and I just looked it up and saw that it's a common side effect of MTX.

 

[FrozenGirl]

Yeah I wasn't sure if it was common or not but when I mentioned it to my pharmacist he didn't seem surprised. So are you (and your daughter) satisfied with how she is doing on the combo Remi/Methotrexate symptom wise?

 

[pdx]

So are you (and your daughter) satisfied with how she is doing on the combo Remi/Methotrexate symptom wise?

Not yet. If you look in the Parents of Kids with IBD section, you'll see that we're still trying to find the right dose of Remicade. In the meantime, she's been using budesonide and EN too. That, combined with the Remicade and MTX, and eating a very limited diet, has lowered her inflammation markers and reduced her symptoms. Hopefully soon the Remicade and MTX will be all she needs.

 

[Maya142]

My younger daughter had a huge problem with nausea and dizziness but her reaction was kind of extreme. She was so nauseous and dizzy that she'd be stuck in bed for two days. Her side effects didn't start immediately - probably once she got up to 10mg or so. They also just got worse and worse every week. Her reaction really was extreme though - most people are just fine with it.

Zofran helped and so did switching from pills to injections. Daily folic acid also made a big difference.

My older daughter, on the other hand, had mild nausea and no other side effects.

Remicade + MTX worked like magic for both my girls - hope it works for you!