Hi all,
Saw the RA Dr. Wednesday and when I told him the MTX was making me foggy and messed up my memory, he switched me to leucovorin calcium instead of folic acid. I have ten pills, refillable 12 times and the directions say "Take by mouth 2 tablets daily after MTX." Daily sounds like every day but I'm thinking I'm supposed to take the two pills on the MTX day only, correct? If so, do I take one in the morning and one in the evening? Any other info about this drug you can offer? Oh yeah, another question. Does the calcium part mean there's the same calcium as I already take? Does that mean I need to adjust my calcium citrate I take every day?
Also, the Dr. is only doing liver function blood work every two months. Isn't it supposed to be every month? How often do you other MTX people have tests done? Thank you for your continued help. This newbie REALLY appreciates it.
blood work every 2 months is fine.
When I took leucvorin I did it 12 hours after I took the MTX. NO other day. The amount of pills indicates only 1 day a week
I just looked it up:
Leucovorin is a form of folic acid. Folic acid helps your body produce and maintain new cells, and also helps prevent changes to DNA that may lead to cancer. Folic acid is present in many foods such as dried beans, peas, oranges, spinach, and others. Leucovorin is used to reduce the side effects of large doses or accidental overdose of medications that can reduce the effects of folic acid in the body. This includes methotrexate (Rheumatrex), pyrimethamine (Daraprim), trimethoprim (Trimpex, Proloprim), and others. Leucovorin may also be used to treat anemia (lack of red blood cells) caused by chemotherapy. Leucovorin may also be used for purposes other than those listed in this medication guide.
It really helped me tolerate MTX. I was ready to quit it 2 months after starting it. Eventually I did trade in MTX for Arava. I sure hope it helps you too.
I took mine on MTX day too
I take Leucvorin same as Buckeye. I take the folic acid everyday. I would check with the drs to clear up your confusion. I would call and ask the nurse. My bloodwork was done once a month at first--then it was every 6-8 weeks. Now I do it maybe every 2 months. I th.ink your case is a bit different, I think I would follow their suggestions until things get stablizedEvening vs. morning--probably doesn't matter-just be consistent--always AM or always PMI take 2 pills, 10 mg. total, 8-12 hours after my MTX. It's supposed to help keep my hair. I'm still waiting for it to workPJ
Thanks, all. You really helped to clear things up. I had Googled Leucovorin but it still wasn't clear to me exactly when to take it and how. I thought it was a one day thing, based on the number of pills and refills, but being the nervous Nellie that I am about any new pills, I wanted to be sure. I notice you all seem to wait several hrs. after your MTX, but I divide up my 20 mg. dose: 2 a.m, 2 lunch, 2 dinner, 2 bedtime. I was thinking I'd take the Leu. at bedtime. The RD was very vague about the pills so I guess he doesn't think it matters much but it seems timing may be important. Did your RD tell you to delay by several hours? The RD told also me to stop the folic acid completely when I start the Leucovorin. Do any others (beside Catnip) still take both?
I feel so much better about the blood work. Thanks for that too. If I call with all these questions I think the doctor will "lose" me as a patient. He's doing me a favor as it is, working with my insurance company even though he's not a participant, so it's really important that I can get feedback and info from all of you. Whatever did people do before message boards? How lucky are we??
I was told to take it the day after MTX. Just curious, why do you spread out your MTX? Why not just get it over with? LOL I HATE MTX also.
PJ
I spread it out because of some posts I read here, that it helps to avoid some of the side effects. Except for the foggy brain, I had no stomach problems or anything else and I think spreading it out may be the reason. Maybe I should try taking them all at once one time and see what happens. I like to live dangerously (not).The doctor still has me take 1 mg. folic acid daily, including my MTX day, and 10 mg. leucovorin 8-12 hours after i take MTX. It has to be a timed issue because if you take it too soon, it blocks out what MTX is doing for you. If you take it too late, the MTX already is throughout your system. Leucovorin is supposed to minimize some of the side effects like hair loss.
Debrakay, what were your symptoms? How did you know you needed to go the hospital? Those of us only being tested every 2 months would really benefit by knowing what to watch for. Now I'm a bit nervous and also concerned about the timing of the Leucovorin since I spread out the MTX dose. I've really got to start taking it all at once I guess. The RD doctor just said take the Leu. the same day as the MTX, rather vague directions. The information I got here seems much more detailed and makes sense...timing-wise.Jesse, I am very concerned with your apprehension to call your RD office. Of all of the Docs you go to that one should be the one you call first.
Case in point, I had a sinus infection earlier this week. I have a great ENT doctor, but because of all of the DMARDS I called the Rheumy to have him Rx antibiotics. Some antibiotics react with MTX. (mostly the ones based in yeast).
I am just worried that if you are affraid to call him with questions that something will be missed. This disease is complicated all in its own. You need to have someone that you can work with. Is there another that is in your network?? Check that out. I drive 90 minutes to go to my RD, because he is better than what we have in our town.
Hi Shelly41
Thanks for your concern, I appreciate it. Unfortunately, there is no RD in my network within 70 miles and the one I go to has agreed to work with my insurance co. even though he's not participating. He comes very highly recommended and is well known in his field, but I hesitate to call with too many questions for fear he'll "drop" me as a patient. Then I really do have a problem. If I have to stay within my network, the distance is only part of the problem. I live in the mountains and the drive to the other doctor is a twisting, scary mountain road that will be a nightmare in the winter. If I still feel worried after asking my questions here, I certainly will call the RD and take my chances, but the information here seems to be quite good, and when several people say the same thing, I feel comfortable that I'm getting good advice overall. Thank you for taking the time to advise me.
I take Leucovorin 8-10 hrs. after the MTX. Also 2 mg. Folic Acid daily. The Leucovorin really slowed the hair falling out, and prevented mouth sores. I was also getting headaches the day after some weeks--they also stopped.