Hi mccourtjs. I am on mtx too and am sick the day after taking my injection. I was sick for two days afterwards until my dose was lowered to 15 mg. How much are you taking? It's an awful sickly feeling, I know and hard to explain to people. I describe it like a bad hangover without the party I was considering trying another DMARD and asked my rheumatologist what would happen if I stopped it. He said that he couldn't tell me if I would regress or not (which wasn't much help). I am carrying on with the mtx basicly because I am afraid to regress..I don't want to go back to the state I was in when first diagnosed. As far as I know, it slows the disease progress and allows us to function better. I am tapering prednisone and am on 7.5 mg too..soon to try 7 mg. It would be wonderful to not have to take the mtx though, and if I get the courage I might try the next DMARD in line. Maybe you could ask your doctor about a different med to try which would serve the same purpose and might not make you so sick. If your doctor has any more answers regarding the outcome of stopping mtx I'd love to know. Take care.

Hi Sammy. Are you taking folic acid. Lexis here is great with MTX. Am sure when she reads this will come on to help. Best wishes. Autumm

Hi Mccourtjs, When I took MTX, I had bad feelings in my head from the injections. I totally preferred the pills. I took 4 pills in the morning with breakfast then 4 pills in the evening with dinner. By breaking up the dosage, I was able to handle the bad feelings. MTX stays in the body for around six weeks after you stop taking the medication too. My MTX was followed by folic acid twelve hours after taking MTX. I took Leucovorin which is a high dose folic acid the day after I took the MTX. Some people will do a 1mg daily folic acid pill for the rest of the week after taking MTX. The folic acid protects the brain from the MTX effects. I would take MTX on Friday's so I could have the weekend to rest in case I felt bad.

If you are not feeling well, then maybe a dosage adjustment to a lower dosage could be the answer. Look into the proper amount of folic acid too. Adjusting DMARDs and checking blood work always helps me with DM management.

I hope this helps. Best Wishes.

Hi Mccourtjs
I am taking 7 pill a week of MTX. I split the dose by taking 4 in the morning and 3 in the afternoon.
In the first months of taking the pills I felt a certain discomfort. Now its O.K..
I am taking the pills on Friday. On Sunday, Tuesday and Thursday I am taking 5mg of folic acid.
Best wishes Michaelvi

Hi Autumn,
I'm taking 2 mg of folic acid a day which has helped with the hair loss but not the other side effects.

I've been taking MTX since 2009. I switched to injections (I believe) in 2010. I switched to injections to be able to increase my dosage to equal to 25 mg. I take folic acid (1 mg) daily except the day I take my injection.

When I first started the pills and upped my dose to 17 mg, I could no longer tolerate the side effects and moved to the injection. One thing I found that helped was to have a large plate of hashbrowns before I took my dose. I found hashbrowns were the best and worked great in cutting down the nausea the next day. So I have a healthy dinner with protein, then before bed, I have some hashbrowns. Do my shot and go to bed. I allow myself to sleep in as long as I want (sometimes 10-12 hours) and take it easy the next day. I catch up on my TV watching and even take a nap if needed. I do find I have a problem with food tasting rancid. Usually meat so I just eat what feels and tastes good. Usually by the next day, I'm feeling better and can pick up my normal routine.

I tried stopping MTX at the advice of my Johns Hopkins doctor in January. After about 4 weeks, I started feeling weak again and having trouble with mobility and swallowing. My CK went from 98 to 530. I went back on. It took about 6-8 weeks to feel okay again. I'm glad I tried going off. It is clear it isn't going to be ideal to go off.

I think you can talk to your doctor about a plan. Explain your concerns. MTX and Cellcept are often a "one or another" thing. Maybe you can try stopping the MTX and see if the Cellcept will keep you okay. Another option is to take a lower dose and see if you are able to maintain your current level. Although 25 mg is the standard dose for us Myositis people, you may be okay with a lower dose..especially with the Cellcept and Prednisone.

Keep us posted on how you are doing and what works for you. We all learn from each other.

Hi Lexisgirl,
If I didn't tell you already (my memory is bad sometimes) thanks for the hash brown tip. It definitely helps to have something like that just after the injection and before bed. I usually have some potato chips (still potatoes right? Haha) and that helps prevent too much nausea the next day. I still feel yucky but it helps

You are so welcome Sammy. It is something I discovered quite on accident but it really did help me. I'm glad it is helping you too! I love a good potato chip!

I inject .6ml once a week and follow with Leucovorin the next day. I feel sick, fatigued, and have severe diarrhea for the next few days.

Thanks Lexi for sharing your experience trying to quit taking the MTX. I had a feeling that it would take weeks before I would feel bad effects so I have decided to keep taking it until I talk with the doctor.