Rheumatoid Arthritis and Remicade

[Floydian]

To make a long story short, after quite a while, and some rather crippling effects, I was finally diagnosed with severe Rheumatoid Arthritis and began treatments about 2.5 weeks ago. So far, things are like night and day, but with a recent reduction in medication (30mg/day down to 20mg/day of Prednisone), I'm seeing effects starting to resurface.

But now, I'm moving to another phase, starting weekly dosages of Methotrexate, which is going to be paired with the aforementioned Remicade treatments. So my question is, does anyone here have experience with this?

I'm really not afraid of taking pills, as I did plenty of drugs and alcohol as a young man...hehe. But for some reason, the idea of going in every month or two for two hours of IV treatments kind of freaks me out. Apparently though I have good insurance, because I'm told that these treatments are very expensive.

Anyway, thanks for the time.

 

[toocherie]

I personally haven't taken these, but my Mom has done both.

She's been on methotrexate for 20+ years or so--the biggest issue for her is that you are not supposed to drink alcohol--she would have a glass of wine at Christmas and that would be it. Recently--because of appetite issues--they have told her to have a glass of wine or a drink before dinner (wish someone would prescribe that for ME--LOL) to increase her appetite- she asked about the methotrexate issue, and the doctors said it was ok--but I think it's because she's had a pretty significant weight loss in the past few months and they're more worried about that then the possible liver damage you can get with methotrexate/alcohol.

she was on Remicade for a couple of years and it really helped her. She didn't mind the treatments once a month--her doctor had DVD's and food and beverages and she would just go in and watch a movie and munch while she got her treatment. Unfortunately, she had a bowel obstruction and resulting surgeries which interrupted the treatment and now her veins are so bad that she can't take it anymore. It was really expensive if I recall, but her insurance covered it too--thank God!

Best wishes to you--RA is not a fun disease (not that any of them are).

 

[Momelie]

I'm on Remicade, and have been for nearly 3 years. Not for RA, but for another auto-immune arthritis. Don't let it freak you out - the stuff REALLY works! You start out with more frequent doses, called loading doses, and then get on a regular schedule. I always take a Starbucks hot chocolate, newspaper, book and/or computer, and it never seems like I've been there the whole two hours.

The Remicade is much, much, much easier to handle than the methotrexate. With the Remicade, when I'm done with the infusion, about 4-5 hours later I get a little tired and I lay on the sofa and watch TV, maybe nap. My infusions are always on Fridays, so many times I do a long day at Epcot or MK the very next day! Methotrexate had much more, um, graphic side effects.

Yep, the treatments are super expensive, something like 4-6K per infusion. Thank goodness for good insurance! (Although I just became approved for SSDI and Medicare due to this dratted disease, so we'll see if I'm still happy for good insurance, LOL)

Anyway, let me know if you have any other questions or specifics I can help you with - I'd be happy to share whatever little bits I know!

 

[Mrsjvb]

I dropped the methotrexate just becuase of those graphic side effects. hehehe.

currently on Humira, thinking about upgrading the current companion( Motrin) to something better.

 

[TeresaNJ]

I dropped the methotrexate just becuase of those graphic side effects. hehehe.

currently on Humira, thinking about upgrading the current companion( Motrin) to something better.

Can you explain what those "graphic side effects" are from methotrexate please? I have some type of auto-immune connective tissue myopathy that hasn't been fully diagnosed yet, and my rheumatologist wants me to start out on prednisone for two weeks, and if that helps, then switch over to methotrexate. I'm scared to death to take any meds since I don't have a definitive diagnosis yet, and now I'm more leery after reading the above.

 

[Mrsjvb]

bathroom issues.. to the point where the side effects were not worth the relief from the meds( which did work for me).

Plus the whole No alcohol thing just made it that much easier to try something else.

 

[Momelie]

My issues with MTX were extreme fatigue and nausea. Couldn't hold my head up for a few days after a dose, and those were weekly doses, so I was losing 2-3 days out of 7. That was definitely bad enough to have a huge impact on my life. Then I started having really elevated liver bloodwork (you have to have quarterly bloodwork on this drug, FYI), and it was decided to take me off.

I've felt much better on just the remicade, and it seems to work fine. One thing you must remember, though, is that it can't do anything for damage already done - just prevents future damage and helps with current symptoms.

 

[nwhitehead1214]

I have RA. I started out on Metrotrexate and now I am on Arava. It seems to be keeping the RA in check. They pulled me off the methotraxate last Fall when I went into the hospital with a very strange pneumonia. Anyhow, no one knew why and how it happened so they moved me to Arava. Seems fine. I have not had to go the IV treatments, yet, but I have heard good things about them. I never, ever had "issues" with methotrexate. Funny.

 

[2littleprincesses]

Hi! I have been on Methotrexate for years and it has not been bad. I have to have monthly blood draws to make sure everything is ok. I am also on Enbrel (have you tried that?) It is a weekly injection that you give yourself. My neighbor has Crohn's disease and she has been on remicade which works well for her when she has flares. Now she also takes weekly injections.

I hope that you find something that works for you soon. I know those flares can be nasty.

 

[bevgray]

I have been on weekly doses of Methotrexate for nearly a year due to moderate RA. Main issues I have are the deep fatigue and hair loss. Folic acid and Biotin seem to help with the hair loss but nothing helps the fatigue. I work full time and can't do much else. Not fun.