I've been on the mtx for five weeks still having lots of pain and it seems to be getting worse. For some reason say my shoulders bothering I have pain down my arm. Or if my ankles and feet are bothering me then leg hurts too. Any one experience this too. Maybe Im just crazy. My husband thinks I am. How long do I have to be in pain before this stuff starts to work for me? MTX takes at least 3 months to start working, at least that is what I was told. I have been on it since mid Feb. and still nothing. It gets frustrating. I have been steadily getting worse since I got off of the Prednisone. I just started Plaquenil 3 weeks ago and that takes 6 months to work!I've been on the MTX for a month, and I haven't noticed any change at all. My RD says it can be a full year before you really feel any positive effects. And if you don't (feel any better), you've lost the year. I think that's one reason why she really doesn't like it.
I can't tell you too much about mtx because the longest I was on it was a couple months but I can tell you - You're not crazy. I am 18 months into this, I have hardly worked at all for good reason and I still ask myself "How long is it going to take???" I know I have gotten better because it used to be "Can I cope" - do I want to live like this. I spent 100% of my time in my recliner. I rarely slept. Back then the pain was so bad, if I had not had this board - it was agony. When this whole thing started I worked two jobs and hiked everyday. Now 65% of my time is in my recliner.
RA monster effects your muscles too. I can attest to to that. I think it is the joint inflammation making the muscles tight. Be patient. It does get better or you get better meds. I wish I could tell you you get your old life back, some people on here have - but I am still waiting.
Educate your husband. Asking my husband to read some of the threads on this board made a huge difference in his attitude.
Rox
I started MTX in October and continued to have horrible flare-ups. I was taking prednisone daily as well. I had a stuttered start with my meds due to insurance refusing to cover Humira. They finally approved Enbril and I stared in January. I had complete relief for about a month. Then.....I did the unspeakable...forgot to take my MTX one week and then forgot again week 2. I had a flare up like you can not believe. I could barely walk throught the airport ...we had booked a ski weekend in Denver over Prez weekend. I stayed in the condo for 4 days and looked out the window.
Came back home started back on MTX and Prednisone and Enbril and take religously. I am back to 90 percent pain free.
I didn't know how much the MTX was working until I stopped taking it. Hang in there!
I still ask myself that questions and it's been 3 months for me. Tell Hubby you are not crazy...he can come on here and read about all of us and see you are not alone. My doctor has just started me on Enbrel, but kept me on MTX in the hopes that something will start to work.
Are you on anything else along with the MTX?
I take voltaren, amitriptyline, I stopped taking the predinsone because of my blood sugars and the fact that my face was super puffy.Also does any one know why there is pain in other places like that. Is it my muscles.???I cant answer to why theres pain your muscles, but I have pain in my muscles in my arms also, it was so bad that I thought maybe I had something else! I just started taking MTX as of 5-6-06, I hope it works, whenIve posted questions about it, i got alot of positive feedback from other members that responded well to it, but it always comes back to the same reply, you gotta wait and see... and nothing feels more like forever than when your in pain!!!!! Good Luck and Good Vibes!!!!
DC
Wait 4 months. I know that sounds like a long time, but you will be very thankful you waited if it works for you then. If it still doesn't work, ask your Rheumy about adding Enbrel and then once you are good for about a year, start weaning from the Mtx. That was my secret formula!I've been on MTX for 7 years. Used to take the pills, now I inject it. Easier on the stomach.. and the shots dont hurt at all.
It took 6 months to really start to feel it working.. but it DOES work. It's worth the wait - and believe me, I KNOW how hard the wait is.
I went off it ONE time in 7 years, and I will NEVER do that again. You dont realize how much it's working until you dont have it. I am lucky, and dont have the side effects. I tolerate it very well.. but not all people do.
Wait it out - if you can tolerate it - it's sooooooooo worth it.
good luck!! Medications for RA are complicated and you may have to add more meds if what you are on doesn't stop the inflamation.That's what the doctors do. I'm currently on 4 immune suppresant meds and things are still not under control although they're better than they were. FM does cause muscle pain and you can have both. I do. They treat it differently, and it is easy for a RD to diagnose. If you can manage to do swimming or some other mild exercise, even walking, it will help with the muscle pain. You need to check with your doctor about what level activity you can do. But don't just suffer and wait this out. If the medicines aren't working, your joints may be damaged. I learned this the hard way. [QUOTE=crunchy]Woobie---dont lie to the good people now...that MTX burns like hell! But I still would rather that then pills.
REALLY!!! It doesn't burn ME! I really dont feel it at all. Maybe it's cuz I got a fat tummy - i dont know........but the enbrel and the humira burned really bad.....but never the MTX. There's 2 kinds........ one has no preservatives in it - and one does. I have always had the one with NO preservatives in it. I have to throw away whatever's left in the vile ..... almost half the vile... because there's no preservatives, and it's no good. I get it mail order - three months at a time, and I noticed that the stuff I got from walgreens was different, and I compared... then called the mail order place. That was the difference. Maybe that is why it doesnt burn?? Hell, I dont know - all i know is that it's never burned and the other stuff does. woobieI already have bone erosion in my hands and feet. The pain has increased the past couple of months sometimes its bareable sometimes I have to end my day the problem is I have two children I have to take care of we can't afford a babysitter when i'm already home. My doctor said to take tylenol arthritis if I was still having pain. Like that works. Thank you for all your advice I'm going to call my doctor today to see what can be done.Yes- I have heard that the preservatives make it sting the most. That is the difference between the 2 different ways that enbrel comes. The 50 once a week stings and the 25 twice a week stings a lot less (so I have heard) because there are preservatives in the 50. The 25's don't need preservatives because they are mixed up right before injection. The 50's have a different shelf life and are pre-mixed.
So i called my doctor she is calling in ultracet. don't know what that is. Today was my breaking point called the doc at 1030 or so they called me back by one oclock. They have never called back so fast I think they could hear it in my voice. I was crying in pain. I was trying so hard to take care of my children. Its hard when you can't walk. She said try this for now. I see her on tuesday to discuss how bad its gotten and the next step. The lady on the phone said hang in there I know it takes a while to find the right meds to work for each person. I think ultracet is probably a painkiller. Ultracet is a pain killer. I think it is also a muscle relaxant. They give it to people with severe back pain. I hope this helps. Good for you for calling. Baby yourself as much as possible. How old are your kids? I've experienced everything you are feeling and worse. Pain so bad in my arms at night I couldn't stand it; developed carpel tunnel in both hands because of the swelling that my hands were totally numb except for my little fingers. Had surgery on my right hand. The saving grace for me was the pred which my rheumy put me on immediately before the official dx of RA. Then when dx'd he put on mtx. It took about 2 to 3 months to feel better. Between the pred and mtx and improved significantly. Am now off pred, thank god, and feel pretty good. So hang in there. You are not crazy. And if you husband can't feel sympathetic towards you or even TRY to understand what you going through, get him to a counselor. You shouldn't have to put up with his crap while you are going through this. The best of luck to you! Susan I don't know how you do it with two small ones. I understand that a lot of women develop RA during pregnancy. But I cannot even imagine how you cope and take care of their needs. Quality of life is extremely hard to obtain. I struggle with the same frustration all the time. I get angry and sometimes I just cry. Then, I don't want anyone around me. When I'm really sick, it scares my kids. But they have both told me (of course, they are technically grown) that it would really hurt their feelings if I wasn't honest with them. Quality of life comes from what you give soul to soul. It has nothing to do with the number of activities you do. As your children grow, you will learn how be there for them in other ways. And, they will learn so much for you. My kids think I'm the strongest person they know. In reality, I'm not even 5 foot and a big whimp. But to them, I can solve the problems of the world. You go from the good thing to the next good thing. You find spots of no pain and celebrate them. It isn't fair to have this disease and believe me I have yelled at God about it. My original inspiration was Christopher Reeves. He had done a tape about how he adjusted to his disability. Then, I watch him being interviewed about being a parent. His own son did this wonderful documentary on him and you could see how much he worked to gaining the best out of life. People do it and they are amazing. As discouraging as it gets, keep this mind. You are never defeated as long as you keep getting back up and trying. Today may not be good, but tomorrow might be better.
woobie
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