My remicade by itself is not working anymore, and I'm pretty sure my rd is going to say I need mtx or arava. Since arava made my hair fall out and elevated my liver enzymes, maybe I would do better on methotrexate.
So can anyone tell me how it's administered? I gather it is taken weekly not daily? and what about injections? Are those taken less often? Do you always start with pills? what is a starting dose?
Jodi - I was started a little over a year ago with MTX and folic acid. It was first 5 tabs in one day, once a week. Then my labs turned bad after a few months, and I went sero-positive for the first time and was upped to 6 once a week. I have since stabilized and my lab work is perfect, but I also was finally placed on Plaquenil after a big fight with the rheumatologist, and I think that this is what stablized me, not the MTX. It took 9 months for me to feel any change from being on MTX. I take it on Saturday so I have Sunday to recover instead of during the work week days and add having the slight reaction I have to MTX hit at work. I also don't take my Folic Acid the day I take my MTX. That's my story, and I am sticking to it - good luck. CathyJodi: The Mtx can make hair fall out too. That is my experience and I had to add Leucovorin Calcium to the mix to counteract the side effects along with the folic acid. Now my hair has filled in but still is not as thick as it was before the RA meds. I have had bad reactions from Planquenil and have stopped taking it. I take 7 of the Mthx same manor as Cathy. You will work up to the larger amount--you start off with a smaller dosage. You can also inject the Mthx. Good luck--everyone is different.I have been on MTX since diagnosed. I take oraly on Sun. I also take Folic Acid to prevent side effects. I had a few mouth soars (not fun) and RD doubled the folic. No soars since. I have been thinking about the shots myself. From what I've read here they are easier on your stomach and about the same cost.
How long have you been on remicade?
My RD prescibed 20mg mtx weekly and 400mg Plaquenil daily the day I wasI take 8 MTX tabs every friday afternoon.
When I first started 2 years ago I noticed a little shedding, but nothing serious.. and I have very thin fine hair to begin with.
I also had some nausea and mouth sores.. but since I take folic acid with it now I almost never have any side effects. The worst is maybe I cant eat a real heavy meal on friday evening.
I started on Plaquenil in 2004. I take 200 mg twice a day. Did pretty good until recently. I just started taking MTX - had my 6th dose Friday night. I take 3 pills (7.5 mg) once a week. My insurance won't pay for the injectable MTX unless I can't tolerate the pills.
I've been on MTX since early 2001...started out on 5 mg...2 tabs weekly but over the years it was increased to 20 mg (8 tabs weekly). I started Remicade a year ago when the MTX wasn't holding off the pain,etc. I have noticed a bit of hair loss on top, but I keep telling myself it's not noticeable yet to anyone else.
Why can't folic acid be taken the same day as the MTX? No one ever mentioned that to me. I do get occasional mouth sores even though I take the folic acid. I hope he'll let me start to taper the MTX. I was "bad" yesterday with joint pain and stiffness but it seems better today...2 days after I took my MTX. Due for Remicade in 2 more days.
would love to taper off more meds....Plaquenil has been great for me so I don't mind taking 400 mg daily. MTX does kind of make me a more tired and a little queasy on the following day...but I think its efficacy makes me want to continue.
Molly Bee, my RD told me to take my folic acid EVERY day. I think doctors have differing opinions on this.I also take the folic acid every day, even MTX day. I take 8 on Friday (20 mg) but I break it down to two at each meal and one before bed. I make sure to eat something with it and the 200 mg. of Plaquenil I take every day and at the 3 month mark I have no side effect problems. I also started on a lower dose and worked my way up. I was terrified of starting MTX and resisted it but have found it's not so bad at all for me. I just hope it starts doing more to help. It was good to read just's post about it taking 9 months, so maybe I just need to give it more time. Good luck.
Thank you all for the wealth of information!
RAJay I have been taking remicade for about 20 months. It was like a miracle after my first infusion. When I stopped arava 14 months ago, it still worked great until this past May.
I take Methotrexate injectable, 20 mg. IM weekly. My RD told me NOT to take Folic Acid, as at this point I am not having any side effects from the Methotrexate. He says the Folic Acid decreases the efficacy of the Methotrexate by 5 mg. for every mg. of Folic Acid, so unless I start having problems, not to take it. Has anyone else heard of this?
Not me but it is something I will ask about next visit. Thanks GaleI have heard of it, but my RD said the decrease in efficacy is negligible. I took 20mgs once a week and 2mgs of folic acid every day for almost 4 years. The folic acid did help, but after a while the mouth sores and other side effects got worse so I had to discontinue the MTX.
Would be nice if they could all get together on this protocol, but since we all react differently they try to adjust accordingly.