STOPPING methotrexate, no MD input
This may be windy, but please read, and see if you can help me:
OK, so have any of you ever just STOPPED taking your meds, because you wanted to? I would love to just stop the mtx, obviously would have to taper off of the pred, and see what happens. I can't remember if I feel better or worse because the side effects of the drugs clouds everything up. It's like a horse being led to water that doesn't look around to it's surroundings. I'd like to just stop, and then clean out my system (granted, I"m sure there will be PAIN), and then start again and pay attention...take notes, be aware of myself. We go into these appointments so disillusioned with life, ourselves, etc, that we are not necessarily owning the moment and living in it.
So, I think, since the Humira just arrived 20 min. ago, that this is what I am going to do before I start it. Can anyone give me a concrete reason not to try this? I feel like if I stick one more thing in my body I'm going to become a chemical warehouse and there will be no turning back. I don't disagree with Pip and other's choice of therapy, but I want to acknowledge mine working or not before I go on to their preferred method of treatment.
Thanks for the heads up!
How much mtx are u currently on? What else have u tried? Are u considering this because you feel afraid of these meds? Have you added something else to the mtx before going on to humira?
Hi Lisa. This makes me nervous. You may be able to just stop MTX cold turkey with no ill effects, but please try to contact your doctor first, or at the very least, your pharmacist. There may be a reason why you should cut back gradually. I truly understand why you don't want to take any more medicine than you have to, but there may be a better way of accomplishing what you want.
Forgot to add....sometimes you need to be in a fair amount of pain in order to understand that you may actually need these meds in order to have a better quality of life.I would talk to my doctor before doing anything like that. I myself don't have the eductation previous and continuing or the years experience treating this disease that he does. You might really screw yourself up.
I take 25mg. injections of the mtx weekly, 25mg of pred. and folic acid. I just got the Humira today. I have started with a dry cough, but that could be due to the weather (I'm in suburban Chicago ) because I have been singing alot (I'm in a musical right now) and worn down with the production ( I am assistant producer) and fighting a cold. Oh, and I have 3 elementary aged kids.
Yes, who wouldn't be intimidated by the meds, but of course, you can't let side effects rule your life, if the quality of said life can be improved by the drugs. I just want to see what will happen and then start again and realize what changes are happening and pay attention to them.Maybe by talking with your doctor about this, you can come up with a plan to decrease and just see what happens and go from there?
Also...maybe if you feel you do need these drugs, maybe add plaquenil or sulfasalazine to the mtx before going on to humira.[QUOTE=RDHcRA]
I just want to see what will happen and then start again and realize what changes are happening and pay attention to them.[/QUOTE]
Lisa, what I'm worried about is what WILL happen. Maybe nothing, or maybe just nothing you notice right away, but suddenly stopping a high dose of MTX like that might cause other problems you don't want. Why take the chance of something bad happening, when you can stop it under the direction of your doctor and then start again for your journal? Tell your doctor everything you told us, make it clear this is what you want to do and ask him the safest way to go about it. It's always better to err on the side of caution when it comes to your health and these drugs. They're serious stuff, not to be taken (or stopped) lightly. Please reconsider the cold turkey route.I don't think much will happen when stopping mtx....except of course you may experience more pain.
I know when I had to stop mtx due to a low white blood cell count, I didn't notice anything. I had to stay off until the wbc count when back up. I was and still am taking 25mgs and have been on it for years. I was off of mtx for about 3 weeks. But then started up again once I got the go ahead.
But I still think it's a good idea to talk with your doctor about this.
Thanks so much all!
Lisa, as I was reading through the first of your post I was thinking "Yeah, go ahead and stop them. I think everyone needs to go throught that stage" I did it many years ago just to see what would happen. I've heard of numerous folks doing that.
BUT; considering you are just about to begin the Humira I wouldn't. The MTX and Predisone are getting your by right now, but you're not doing that great, right? Is that why the RD is adding Humira? If you stop everything now you are going to back slide and you'll have to start back over and it's going to take a while to get back to the point you are right now.
Sometimes when you go off your meds and try to start them back they will not work nearly as good. Obviously if you are on 25mg of predisone daily you aren't doing well at all. Maybe if you start the Humira you will soon be able to reduce that predisone....then work on the MTX and then who know. I think stopping the predisone alone may be a HUGE eye opener for you. Maybe start reducing that and see how it works.
For the record; there is no danger in stopping the MTX. Yes, you'll likely flare but it's not like predisone. You won't have to taper it.
If you've got a serious cough you might need to be off of MTX anyway until it clears up. Continuing on MTX may cause it to get worse.
I wish you luck with what ever you decide to do.I suggest discussing this with your doctor. I do know that sometimes after stopping meds, when people start them again they aren't as effective the second time around.
I certainly understand you wanting to do this though! Recently, I was off of my Enbrel and MTX for two weeks due to a cold. I was really tempted to stay off for a while longer just to see what would happen. I didn't though. I was just starting to feel all my aches and pains coming back, so I started back as soon as I could!
Your post is exactly my RD's ideas, reasonings, whatever. First, get on the Humira, then, start tapering down the pred, and then the MTX and see where we land. Obviously, he will only taper when I start feeling better. He's very aggressive in his treatment. Has me in every four weeks, and keeps bumping me and changing me around. He is available via email at any time, so when I would beging to have a new flair, I had immediate direction from him. He really is great.
Now that I think about it, I have heard that once people stop and restart the MTX they don't have the same benefits. OK, Ok, I'll go shoot up my hip with Humira. But that said, are any of you getting the tired/fatigue side effects with it? And Lovie, what do you take the B12 for? Does it help with your energy?My RD says stopping and starting mtx doesn't affect it's efficacy, but I have heard many anecdotal stories where it did.
Many people stop mtx cold turkey (perfectly safe) only to find the mtx was working a lot better than they thought.
Your doctor is the expert except in one area, you are the expert of living in your own body. I would say stop it, too, except for the humira thing. It sounds like your doctor has a plan to get you off mtx eventually, so why not stick with that?
I'll tell you what my RD told me. He said like someone already told you, that if you stop your meds, sometimes they won't work as well when you try to go back on. If you go into a flare in that posistion, it could be back to square one trying to figure out what and how much you should take. [QUOTE=Lovie]
Sometimes when you go off your meds and try to start them back they will not work nearly as good. [/QUOTE]
Lovie is right. That happened to me.
I'd suggest you wait to see how the Humira works for you. If you respond really well to it, maybe then you can drop the MTX.
That's what I'm doing with my MTX and Enbrel. If Enbrel works well enough, my RD says I can try stopping the MTX.Lisa- I would advise you not to stop taking your meds. This comes from experience of doing the same myself. I took myself off of everything ten years ago because I thought I knew better than my doctor. I managed really well for a while then disaster struck and I was virtually bedridden and housebound for 6 months. By then the damge had been done and its irreversible now. I cant go back but now I listen to my doctor... Speak to your doc and tell him how you feel.PLEASE wait until the Humira kicks in before cutting back on any of your other medications. Humira works GREAT for me. However, I've found that I still need a little Methotrexate booster to get the maximum benefit from the Humira. I was on 15mg of MTX before starting Humira (and hated the way it made me feel). I quit taking it cold turkey as soon as the Humira started working it's wonders. However, when I did that, I found that the injection only worked for about 10 days before I started to feel my symptoms returning. I'm now taking 7.5mg of MTX a week, and that seems to do the trick for me without any of the nasty side effects that 15mg produced. Most studies show that Humira works best in combination with MTX. That's certainly the case for me.
I have been able to almost wean myself from Prednisone (down to 2mg) with absolutely no flares at all!! Hopefully, you'll have as easy a time getting off Pred as I have.
Snow, your post made me think of when my Rd and I were discussing this. He said....ya know, some peole just stop their meds without even telling me.......that's all he said about it, but I had the stong impression that he would have liked to be "kept in the loop".How long before the Humira began to work?I started feeling better after the first shot (especially in my wrists and hands), but it wasn't until after the sixth shot that I started to feel almost symptom free. I could barely walk before I started my shots. After three months, I was walking normally again. I don't have words to adequately express how wonderful that felt.