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First dose of methotrexate and questions??

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Posted 5/7/2007 2:24 PM (GMT 0)
Hi everybody,

I took my first dose of mtx on Saturday (4pills) and it has made me sick and by sick I mean lots of lower back pain,fever and today I just hurt all over, and I am really tired, I just feel plain crummy! Is this normal, does anyone know???

I didn't expect it to start working on the arthritis overnight, but sheesh!! this is ridiculous!

For those who have taken this, what was your experience? is this normal? not normal?

Thanks in advance
Posted 5/7/2007 3:25 PM (GMT 0)

I don't remember aches and pains like that (doesn't mean it didn't happen, I just don't remember) - but I do remember feeling awful on it! My lungs were the worst. I couldn't walk by smoke, smokers, or anything within 20 feet w/o severe chest pain, asthma like symptoms, and painful coughing.

Docs tested me and insisted I wasn't allergic to it or having  a reaction to it, yet, the problem didn't exist beforhand and it stopped after I stopped the meds (I'm not sure how long it took to stop because I had pneumonia and bronchitis for a few months when I stopped the med.)

****

Posted 5/7/2007 3:39 PM (GMT 0)
Mom,
That sounds terrible! Make sure to let us know what happens. You should call your Doc. Did you get an DX? I assume you did because you are starting the MET. I am still waiting for a DX. I am to go back 5/22 after weaning off the pred. I posted under "update doc appt." I hope you feel better soon. Maybe your having a bad flare? My Co worker is on MET and it took several months to work. She did have some naseau initially.
NanMac
Posted 5/7/2007 3:59 PM (GMT 0)
Thanks ladies,

Today is not as bad as it was yesterday. I felt like I had been run over by a truck! Right now just a bit warm and sick to the tummy. I guess I will stick it out...

Camama...I am guessing you didn't take it for long? Its not very pleasant is it? I was really fearful of this one...even the name sounds scary!

Nan...I was in a flare, before I started it on Saturday..maybe it is just making it worse, and taking it with the plaquenil, what a combo. No, not a formal diagnosis, but he says you can have it without a positive test. He is just treating my symptoms. Although, he didn't give me anymore pred:(
Posted 5/7/2007 4:10 PM (GMT 0)
I actually took it for a year. I was in such bad shape, the docs kept saying, "well, without it, you may be worse....none of these symptoms are making you bed-ridden.....why not stick it out."  I did, but with my 2 little ones (1 and 2 at the time) it was really tough. I had severe fatigue and just never felt great. Near the end, my PCP said, 'you need to take a LOT of folic acid' - so I added a 4-5 folic acid in the morning and a B complex vitamin at night. I was supposed to try it for a month or 2 for the fatigue - if it didn't help, she was going to give me B vitamin shots every month. I'm doing the same vitamin ritual now that I started Arava as it's similar to methotrexate (and I'm worried about it too!) It's only been 2 weeks.

*****

Posted 5/7/2007 4:23 PM (GMT 0)
Camama...I see, I have not heard of Arava? the fatigue is bad isn't it? I am also taking the folic acid....Now I am thinking, well maybe my joint pain wasn't so bad, factoring in the other symptoms that I now have.

I didn't realize we were in a similar boat...hugs to you! I feel like I am always complaining about something, and I had hoped that the methotrexate would be okay, I didn't think it would make me feel like this! My doctor said we can try other things if this doesn't work...I can only imagine..probably Arava..ha!
Posted 5/7/2007 10:35 PM (GMT 0)
hey mom i have been on it for over a year now and it is hard to recall the beginning .... i know i was sick a few hours post and very tired so i learned to take it at bedtime and sleep off the symptoms for me that really really helped! i have no nausea or icky feeling and my fatigue is way lower.... i so tend to sleep in more the first day but generally i so fine. back pain i dont think ever? if you didnt take it at bedtime take it next time at bedtime and sleep off the side effects good luck i hope it works for you.
Posted 5/8/2007 1:45 AM (GMT 0)
Hi Yalinda,

No I didn't take it at bedtime, I took it around 5pm along with my plaq and by the next day just felt crummy. My daughter felt yucky today, so maybe I just have a bug to go along with it. But yesterday, the day after I could hardly stay awake, so I will take your advice and take it at bedtime next week.
Posted 5/8/2007 2:19 AM (GMT 0)
I was on methotrexate (but not now)any way i never took the pill form one reason is because my dad was on the pill form and it made him sick and he said that really tired after taking it.So when my Doctor wanted to put me on methotrexate I told him that i would give the shot a try if he could teach me how to give my self injection.I did fine I did get tired after the shot but the trade off was woth it.
Posted 5/8/2007 2:39 AM (GMT 0)
I take 25mg of MTX (for a year now) and found I would get a headache the next day - I guess we all react differently. I agree with Yalinda - take it before bedtime and sleep off some of the side affects. Good luck with taking it and give it time to settle and hopefully work for you.
Take care
Jo
Posted 5/8/2007 2:48 AM (GMT 0)
Hey everyone! Well it's nice to finally hear about peoples reaction to the MTX. I have been on it for 3 weeks now, and the fatigue is awful! Depressed too. I even cry at some commercials! Oh and i seem to not be as easy going as i used to be. Kinda edgy. I'm still very achy and sore,and still get swollen hands when i've done too much working. How bout leg and feet cramps at nite, and night sweats? I have been sweating like a dog at night. SOAKED!! Is that a side effect too? Or is it the pred? Right now i'm on 15mg pred. daily, MTX and folic acid,along with my regular vitamins. I see the Rheumy again on the 18th. Any idea what the next step may be for me? More meds? Kibbles smurf
Posted 5/8/2007 11:02 AM (GMT 0)
i think the pred is giving u the night sweats joy. for me as i tolerated i increased the mtx and then began after 3mos to decrease the pred. it takes a bit for the mtx to build up. good luck to evryone - i know we r all differrent but i dont really feel i have much fatigue anymore either. of vourse i am gonna jinx myself and feel exhausted today lol lol
Posted 5/8/2007 1:50 PM (GMT 0)
I don't ever recall feeling bad from taking MTX, I've taken up to 25mg pills and even the max injection for over a year. But I'm beginning to wonder how good I could really feel if I was healthy?

Although I get a lot of exercise and am in pretty good shape, I find I sweat considerably more than I did years ago before the drugs (and RA). More than anyone I know, even the guys around me riding up the same 4 mile climb.

I have had the nitetime sweats on prednisone, but my doc does not believe MTX or Enbrel contribute to my increased sweating ... but I do.

it's just water weight ... Craig
Posted 5/8/2007 2:18 PM (GMT 0)
So today is a better day...I have to admit my hips don't hurt nearly as bad as they did before I started the mtx. I still feel not quite right, and a bit achy and my husband said it IS a cancer drug after all, so of course its going to have side affects...I find that my hands hurt the most right now, which is really strange?

Kibbles..are you taking plaquenil as well? I know for me that does help with the fatique but the mtx seems to have crossed that out for now! Yes, the mtx for the moment seems to make me tired and I can't seem to get passed it. I am hoping that as I get used to it, that will pass. I can tell you that when I was taking the pred, as crazy as this sounds THAT made me tired!! I could actually go to bed at night, after taking 20mg at 1 in the afternoon. Is it possible the pred is having the opposite affect on you? Oh and the pred, made me CRANKY, or so my husband says! and yes I was teary as well. This is one of the reason why I didn't get any more pred:( But it was the ONLY med that worked and took away all of my pain. My doctor says the mtx if given enough time, works like the prednisone...

cbrossman...I haven't heard that night sweats are a symptom, but I guess you never can tell with these crazy meds! It sounds as if your RA is pretty well controlled right now? I would love to be able to work out and get back into shape, without something swelling up (knees etc)! maybe after the mtx starts to work :)
Posted 5/8/2007 9:37 PM (GMT 0)

Hey Mom.  Don't give up on the MTX yet.  I didn't exactly have the same symptoms as you but I did get sick.  No fever but I was told with the high dose of pred I can't run a fever, but with bronchitis, or ear infection, then cough... every week I was sick with something then all of a sudden all this stopped.  I am now on Arava, MTX 25mg, Enbrel, Pred, plus all the other stuff and I don't get any side effects whatsoever.... this is what could happen to you if you stick with it.  I don't have the good news of feeling like I am improved yet, but keeping my fingers crossed for that one.  They say it takes most people up to a year to start getting true improvements and getting the right combo of drugs.... My year is almost up so maybe I will be a new person here in a few months... Maybe we both can be.

Theresa

Posted 5/9/2007 12:46 AM (GMT 0)
Hi bloo,

Thanks! I am going to stick with it...I am pretty much pain free in my hips, only my elbow and knees today , and yeah I feel kinda crumy but as you said, it may take some time. It sounds like you are on quite a combo yourself! When I really think about it, I haven't even given the plaquenil an honest chance to work, the pain just gets so bad, I just want something to work:)

I will keep plugging along:)
Posted 5/9/2007 3:58 PM (GMT 0)

Well, I know a lot of people suggest taking mtx when you can rest. My PCP is on it and I'm not sure if she takes the pills Tuesday or Wed., but she says they make her so fatigued that she started taking Wed. off....she doesn't see paitients, just comes in for 1/2 a day and catches up w/paper work and takes it easy.  It is considered a chemo drug.

Give it a little more time and see how your body adjusts to it, but yeah, if your doc decides to switch you to something else, it could be Arava! tongue

I hadn't noticed considerable fatigue with the plaquenil, but I know prednisone does make me jittery and I can't sleep (among other issues.)

****

Posted 5/9/2007 6:10 PM (GMT 0)
CaMama,

Well that is nice to hear about your PCP (well you know what I mean) that she takes a day off...I was really starting to think I was some kind of hypochondriac! I noticed that when I went off of the plaquenil for a short time, my fatigue came back something awful, but when I went back on it, I really had so much more energy, I think it helps a lot. My doctor eventually wants to take me off of it and just do the mtx. I have always been so afraid of the mtx, but at this point desperation has set in..

My doctor says there are many more options, so yeah I can only imagine what they are!

I have a friend who is going through breast cancer treatment and she told me that some of the drugs used for lupus etc are the same, if she feels like this all of the time (only magnified 10 fold) I guess I can live with it!
Posted 5/29/2007 1:47 PM (GMT 0)
Hi Missie.

Good luck and I hope the MTX works well with you. I'm glad to hear your doctor gets a baseline blood test to begin with...mine didn't. I will admit the first three doses knocked me for a loop, however I just took my 4th dose this past Saturday and I still feel run down, I don't feel as sick as I did with the first two.
Posted 5/30/2007 2:04 PM (GMT 0)
Hi again (I posted to you on another thread)

For me, it takes about 12 hours for the mtx to kick in..and took a few days for it to wear off.. Please know that not everyone is as puney as I am, and you may feel just fine. However, yes if you take it on Friday evening, by the time Monday rolls around you should be over the worst of any side affects that may happen. My best advice to you is be prepared to just rest throughout the weekend, and if you need to take a nap, do just that. My first dose made is so I could hardly stay awake the next day. I do want to say I have now had my 4th dose and it does get better.

Let me know how you are doing ok?

Good luck!
Posted 6/3/2007 5:53 PM (GMT 0)
Hello everyone. Just found your site/forum today. I'm so afraid of taking that mtx stuff, I took it once & will not continue until I get a second opinion. [12.5mg] The list of side affects are staggering! I'm taking an antiinflamation/pain pill that seems to keep the pain & swelling at bay, so maybe I'm not as bad you all, but Dr. insists I will be crippled without it! I have psoriatic arthritis [am I in the right forum?] I will continue to read all posts though. I'm glad all of you are doing ok on this drug, but it scares me to death! Any thoughts will be appreciated. Thank you
Posted 6/3/2007 6:44 PM (GMT 0)
njcats...I hope you find a medication that you can feel comfortable with.


Missy...how are you? it sounds like the mtx wasn't too bad? I think I am getting used to mine as I'm just tired today but then Friday night we were up until 1am visiting friends, and up late again last night so it could just be lack of sleep!
Posted 6/3/2007 11:23 PM (GMT 0)
Ok, so I'm a little anxious...weren't you all? Did you just take your Drs word or did you question another form of meds? There's plenty other things out there, no? I guess what I'm asking is, did your Drs have you try other meds before this one but it/they didn't work? Or did he/she say "this is what you need". Has anyone tried Celebrex? Or is that one not strong enough for our symtoms? I had severe pain, redness & swelling in both hands, severe pain in shoulders then after working on a ladder my feet swelled up overnight with really bad pain so bad I couldn't walk the next morning for a half hour. That was the last straw for me...I'm 53 & can't believe how fast this came on. It started in March. It just seems to me this mtx is for people already severely crippled that this is their last hope. Am I reading too much into this...or are you all worse than I am? Thank you again for your thoughts on this matter.
Posted 6/4/2007 12:21 AM (GMT 0)
Missie, thank you for your reply but I just noticed you're on methotoxide, not methotrexate. There's a difference, no? Probably is as I have psoriatic arthritis.
Posted 6/4/2007 12:25 AM (GMT 0)
njcats...yes I have been going for over 18 months to my doctor and I tried four different NSAIDs, plaquenil, Prednisone, as well as the Medrol dose packs, and finally now the MTX, it is not something that is prescribed at a whim at least not by my doctor... and neither is the prednisone. MTX is prescribed when the other medications just are not working as they should be. I take plaquenil as well as the MTX because I was on prednisone at 25mg and it is NOT a safe medication to be taking for long periods of time!! I did not get another prescription for prednisone.

Yes, these are serious medications but they are given out when the typical NSAIDs do not work, or something else is needed. For me, I ended up in urgent care and finally needed something more and could not continue taking the prednisone at such a high dose, the same for the Medrol dose packs. I did not want to take the MTX either but you reach a point where your quality of life is impacted at least for me that was the case and I finally said yes to the MTX.

HTH,

I wish you the best.
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