I've got the methotrexate blues

By amy's compassion Sunday, March 01, 2009

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Of all the burdens RA sufferers bear, playing the "medication roulette" is at the top. Many of you are generous enough to share the good, bad and ugly experiences you've had taking various meds. Thanks because I've learned more from you than from my doctor.

So now I'm on my third week of methotrexate. It's also my third weekend in bed. I eat and within 20 minutes it's diarhea time. I had to stop at a Krispy Kreme doughnut place to run into the bathroom yesterday after trying to grocery shop! Lovely!!! Wouldn't you like to date me now?? ha

I know there's more to existing in this life than merely existing. Do these side effects of wanting to sleep around the clock and not being able to function gastrointestinally subside with time? In the meantime, I hope your week ahead is a good one both physically as well as emotionally.

My numbness is leading to madness!

Comments (21) | Add comment

norma

3/ 2/09 9:56am

Hi, it is also my third week on the same medication. Although I have only had one experience of the stomach issue, I am experiencing the blues and sleepyness. This is all so new to me. And I also wonder if the pain will ever go away. I'm not sure were to start or what to do next... Most of the time I wish there was a long term treatment center I can admit myself to (just want to disappear). Presently, I am looking for a new doctor. My doctors way of informing me I had RA was "Life as you know it is over"... Nice.... He never spends more than 5 min with me during my visits. He walks in the room read the survey he has me fill out and says... "OK, thak these and see you in 8 weeks"....How wonderful.......

amy's compassion

3/ 2/09 12:07pm

Hi Norma, that doctor needs some bedside manners! You need someone who will listen to and explain things to you, not make negative statements like that. Good for you to look for someone else to treat you. In the meantime, I'm sorry that you've got the blues/sleepiness from the methatrexate. I guess we'll all have different side effects but those are really tough to overcome. But time should lessen them. I really understand about the pain not going away. How long before we should see some relief? I'm just as new at this as you. Keep in touch with me because we're really in the same boat. Hope your week goes better!

Lene Andersen, Health Guide

3/ 3/09 1:03pm

Oh my god! What a... well, I'm not going to call your doctor what I think he is, because it would involve decidedly unladylike language, - just imagine a little blue cloud hanging over my head. I can't believe he said that! Your life as you know it is over? That's insane. Good for you for finding another doctor - recently, I wrote a post called 5 Things to Look for in a Rheumatologist and that might help you when you interview candidates. Good luck!

bucko27

3/ 2/09 1:31pm

Amy- I am sorry to hear you are having such a difficult time with your methotrexate. You don't say how many mg. you are currently taking. One thought I had is that maybe you are ramping up the medication too quickly and your body has not had time to adjust. I have been using metho. since 2001 and I take 12.5 mg. per week. I used to take more until I went on Enbrel. That combination has really worked for me.

I always take my methotrexate right before bedtime so I can sleep away any side effects. It works really well for me.

As for your fatigue, this will sound dumb, but I have found that exercise helps increase your energy level. Start slow on this also but any exercise you can do will help with feeling better.

Don't let RA get you down. Better days lie ahead for you! Just hang in there until you get the meds balanced. It takes time to get control of this nasty disease.

Steve

no name please

3/ 2/09 2:34pm

amy I'm so sorry to hear your having all that trouble w/it to. I also take mine at bedtime, I take 6pills week, and also enbrel. I will also say the excercise is key if you can manage and start out slow, I think excercise is what keeps me going and the reason why I do as well as I do. Its hard to find a dr who will listen to you and take you serious is what i'm finding since I lost my dr. of 7yrs. I"ve had ra for 8, also drink lots of water 1/2 your body weight in oz. I'm sure the dr would think its nuts but I swear by it I can tell when my water level is down. I get alot of nutty looks about my water obsession but it works for me. I hope we both find a doc that will listen. Good luck linda

amy's compassion

3/ 2/09 8:50pm

Hi Steve, thanks for your response. I'll try taking the methotrexate at bedtime this week, as you suggested - that may really help with the nausea and stuff. I want soooo much to exersize but every single attempt leaves me sick the next day. It's doubly bad because that's what I've always turned to in order to lift my spirits and stay in good health (I was a personal trainer/group fitness instructor for 15-plus years and LOVE working out!) My last attempt was mall walking at a very easy pace for 30 minutes. I guess it was several days before I felt well after that one. I'll give the meds a chance and see if my body will allow me to move again without getting sick. Thanks again so very much for your advice.

bucko27

3/ 2/09 8:59pm

Amy- Sounds like exercising is out of the question for now. I know that sick feeling from overdoing and I hate it. I do have one more idea. Try doing some simple stretching. This will be a gentle form of exercise that you can do lying down if necessary. I know that on those mornings when I can't get out of bed (every morning:-), I stretch under the covers for a few minutes to get me going. It really works! Pamper yourself whenever you can...hot baths, a nap...you know the drill:-)

Steve

amy's compassion

3/ 2/09 9:05pm

Wow you responded so fast that it startled me! The stretching is an excellent idea. Before I get out of bed early tomorrow morning I will concentrate on gently stretching. I'm so glad that you suggested that because it never dawned on me to do that. Thanks so much for your help. I sooo appreciate it.

Go_rilla

3/ 2/09 3:17pm

In my experience the side effects have gotten better. It I take it with food and my Dr. told me I could split my dose over two days. As for the blues some is the MTX some is the RA. But the nice thing is once you realize "I have them" then you can start working on making things better. Hang in there......God loves you.

jackiedrury

3/ 2/09 9:07pm

Ok, I'm so glad to know I'm not the only one constantly running to the bathroom after getting methotrexate.(ction) Only I'm still on the shot. I just got "officially" diagnosed 2 weeks ago. I had lots of blood work, tons of x-rays and my first metho. shot. Got another one last week and another tomorrow. They say I will get4 of these then be put on the pill. On the 12th is my next appt. to find all results of all blood work and x-rays. My regular dr. had already given me Lortab 7.5 for pain and Mobic 15 mg. to help until I got to rheumy. They also put me on the shot of course also, omega 3-fish oil 2,2xs a day, calcium w/vit.D and Foltx plus an over the counter good multi-vitamin. I don't even need breakfast, I just eat a hand full of pills. I know some of these supplements are better not to take together and some at better times than others. Any advice. Seems like everytime I eat I get sick. I don't work outside my home but have almost a farm and 3 teen-agers!! I feel like a lazy idiot when I can't even do my main job, laundry, open cans of veggies, load the dishwasher. Some days I have to get my hubby to help me roll from my back to my side so I can sit up and get out of bed. But I HAVE to have a pair of slippers right there because the hard wood floors just hurt my feet too bad. SO BAD. I'm 37, I get up from my computer chair like I'm 97. There are days it hurts so bad I just want to stay in bed and not move but it hurts so much to stay in bed too long. Hurts my back to lay on my back and my hips to lay on my sides more than about 20 mins. Sleep?? HAHAHA!!!!! Could some one give me that definition?? The Lortab helps slightly but not a whole lot. Anyway if anyoneas any advice or info about taking the supplements at different times to make it easier on my stomach I'd appreciate it. Thanks, Jackie.

Lene Andersen, Health Guide

3/ 3/09 1:04pm

That does sound like a pretty severe reaction to methotrexate. As somebody else suggested, you may be on too high a dose - everybody reacts differently to medications and some people need to start really low and gradually increase the dose as their body gets used to the medication. We all decide what's reasonable side effect and what isn't and how long it's reasonable to wait for your body to adjust and simmer down on the side effects (this often happens), but I would definitely suggest that you involve your rheumatologist in the discussion. Although methotrexate does make you tired and have some G.I. issues following the dose, what you're experiencing sounds extreme and as methotrexate takes about 6-8 weeks to kick in, it's a long time to wait while feeling this awful. Call your doctor - they're there to help you, but will do a much better job if you have ongoing communication with them.

jackiedrury

3/ 3/09 3:38pm

Thank you very much, I will do that. You're right, that is what they're there for and what I am paying them for right?? You've been so helpful to me, I appreciate it so much!!

Lene Andersen, Health Guide

3/ 4/09 11:46am

You're very welcome. And you're right - you're paying your expert (the doctor) for a service (medical care). Just think of 'em as really expensive mechanics!

jackiedrury

3/ 4/09 12:50pm

Just got my shot yesterday, upped dose, and no matter how crappy I feel you can always make me laugh!!

jackiedrury

3/ 4/09 12:50pm

Just got my shot yesterday, upped dose, and no matter how crappy I feel you can always make me laugh!!

Sarah

3/ 4/09 11:43pm

Hi, I am Sarah. Was diagnosed mid last year and have been on several drugs and drug combinations since then. I have been on Metho. for about six months and it does become easier! The tiredness and gastro symptoms do subside and although I am still searching for the right drug combo right for me, I know the metho is doing something. Flare ups still happen and some days are better than others but taking day by day is my advise. I think you are still very much in the early days of the metho treatment, my Dr said it takes approx 3 months for it to have affect / benefit and so therefore about the same for your body to become acustomed to it. It sounds like forever but hang in there! I am on Methotrexate 25mgs per week and have been on several other drugs trying to find the right combo. Last one sent my liver functions haywirer but better luck next time hopefully!

amy's compassion

3/ 5/09 4:43am

Hi Sarah, thanks for the reassurance about the metho. So there must be a light at the end of the tunnel somewhere! Hey and I have enjoyed your posts and talents on here. I will keep it in mind that these side effects may very well subside with time. Again, thanks for your words.

happymomma

3/20/09 9:27am

Hi There! I'm on Methotrexate as well & we share the same side effects. I found that certain foods trigger the diarhea & as far as wanting to sleep that will subside but I have been buying Cranergy juice & I love it. It gives me a little pep in my step to get through the day. The most important thing is to make sure you get at least 8 hours of sleep each night. I do ok w/ 7 hours of sleep, I'm sluggish but I manage, but if I get 8 or 9 hours of sleep & then drink some juice I'm pretty functional most of the day. The side effects do get old & you feel if as if you'll never have a normal life again but hang in there because you will have some "really good" days but don't over do things on those days because the next thing you know you're down & out again for about 3 or 4 days. Hang in there (I know that's easier said than done). Blessings to you.

Anonymous

3/26/09 11:52am

Hi there,

I don't know if any of this will help, but I'm also trying to figure out this mtx stuff and figured I'd share things I've tried. I don't have the digestion problems, but I certainly can relate to the tiredness and the frustration of not being able to be active! I was sleeping at least 11 hours a day on the weekends in the beginning and most of the week I was really out of it. I'm not sure how much you're taking, but my doctor started me off slow and it seemed to really help (my mom's on mtx too so we've compared notes). I took 4 pills/week for a month and then he increased it to 6 pills/week. I also take 1MG of folic acid every day and from what I hear this can really help with the side effects. Are you taking folic acid? I also take half the dose in the morning and half at night, so that might help too. I've been on it for about 11 weeks now and I *finally* can stay awake for most of the weekend. Two weekends ago I didn't nap at all and last weekend I just laid down for an hour.

Oh, my friend uses the injectections becuase the pills made gave her an upset stomach. Maybe that would help with your digestion issues?

Good luck, I hope you start feeling better soon!

maremac

4/ 7/09 12:11pm

I am in month 3 of mtx, and enduring the cramping and racing (well, as fast as I can) to the bathroom. My doctor has said I can try taking 1/2 my dose on the usual day and 1/2 three days later. I am going to do that this week and see if it makes a difference. On the up side, I was able to take a planned week's vacation with old friends. It helped that we were all drooping by 10 p.m. and happy to take things slow when we were awake, but doing something normal was a morale booster. And, don't be hesitant to ask for a wheelchair in airports. It is best to do it when buying your ticket and don't let anyone talk you out of it when you get there.

RAsince2003

4/21/09 1:53pm

It may sound ridiculous, but for me atleast the change in diet and homeopathy has brought my RA under control. I have been diagnosed with RA since 2003. I started taking homeopathy, doing yoga and my flare-ups reduced a lot. last year my rheumatologist wanted me to be on Methotrexate. But I declined it due to the side-effects. then I searched online and came accross a doctor's website in which he suggessted gluten-free diet. I wanted to experiment so began last Oct. I also went to a dietician who asked me to be gluten-free, dairy-free, no animal fats/protein( seafood okay), calcium supplement.

Within a week or so I began to feel the difference. My morning stiffness has reduced tremendously, my joints which used to be stiff before have loosened up. Its 6 months now that I am on this diet and will definitely continue. I am due for medical checkup in June and looking forward to it very much. I no longer have any flare-ups, just minor aches/stiffness sometimes.

I hope this helps anybody.

I've got the methotrexate blues

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