frustrated, want to quit meds! | Arthritis Information

So, I was diagnosed with RA around last October. I was seronegative, but had a positive ANA and elevated SED and swollen, painful wrists and fingers. Since then I've been on Prednisone, Naproxen, and Plaquenil. I was started on Methotrexate about two months ago and I'm up to 20mg every Sunday.

My problem is, I'm not getting any better and I'm so frustrated. The side effects of the meds (mainly fatigue and diarrhea) are enough to make me just want to quit. My wrists and hands still hurt - I can barely type and can't even write anymore. My ankles and knees and hips have started hurting at times. It even hurts to chew sometimes. My mouth sores still come and go like before. And to top it all off, now I have strange itchy rashes that I didn't have before. I was tired all the time before - and now the meds have made that worse. I'm tempted to just quit all the meds because I don't think I'm any better - and may be worse!

I think my doctor is good, he's nice and has a great rep, but I've only seen him twice now, and he schedules my appointments so far apart.

The other issue which is really plagueing me is terrible tremors in my hands. My hands have always shook a little - even as a child, but now its bad. I have trouble even eating. Putting on makeup is a real chore, lol! Is this a symptom of RA? I'm starting to wonder if my diagnosis isn't wrong??

Please help! I'm at my wits end!! Yes, it sucks, doesn't it?

You are on folic acid, aren't you?

I would also be concerned about the mouth sores, which is typically indicative that the MTX dose may be too high. Have you considered the injectable version? It often takes a while for the MTX to kick in....I think it was about 2 months for me. But every one is different.

As far as the fatigue: I take my MTX [pills] on Monday night before bed. About 36 hours later I am fatigued for about 12-24 hours. I've since learned how to pace myself and to make sure that what I do on Mondays is not taxing. The key here is learning how to pace yourself.

I know you won't appreciate this news, but quite a number of us find the first year is a trial - it's all about learning what works and what doesn't and trying to adjust our daily activities so that we can manage things without much upheaval.

This is a rheumatologist who is treating you, right? If not, now's the time to run to a good rheumatologist.

Yes, it is a rheumy, and supposedly a very good one. And yes, I take daily folic acid. The mouth sores I have had for years, so I don't think its from the MTX. I can't say they've gotten any worse with the meds. My GP wonders if I don't have lupus rather than RA because of this. I don't know. Lol, if the docs can't figure it out, I surely can't!! Hi RN....Welcome :) Hang in there. I think they say it can take 3 months before you get the full effect from MTX. If it ends up not doing the trick there are other meds your doc can add too. I hope you get the right combo soon and start feeling like your old self again. Whatever you do, you don't want to take yourself off meds! I was diagnosed about 5 - 6 years ago and am on the max dose of MTX, have been on Humira, Embrel, Arava and a host of other meds. I'm currently on Remicade; my Rheumy is in the process of getting approval from my insurance company to switch me to Orencia because the Remicade is no longer effective. You may still be in pain, but the meds DO help to retard the disease. Now that the Remicade has lost it's potency with me, I truly know what the full body pain is like. It hurts to even dry my hands; my body "freezes" into position if I sit for more than 15 minutes and it hurts like H---- to "unfold" myself. It sounds like you're in the early stages of the meds. It does take a while. I speak from experience as one who knows how good you feel when the meds start working and how completely useless and pathetic you feel when they are not.

Hi RNMomlnLa-

Just wanted to send you my support. I hope you start feeling better quickly. Like others have said it does take time for the methotrexate to start working. I know it sucks waiting and I do understand just wanting to throw your hands up and say forget it! I started on Methotrexate last August, it took many many months and the dose to be increased before I noticed, "Hey, I'm actually feeling better"... I can look back now at my journal and see how much more pain I was in when I first started.

Call your Rheumy's office and ask if you can be squeezed in to see your Rheumy sooner, sometimes the front office people will just say sorry, he's booked up, then ask to be transferred to his medical assistant/nurse. Usually when you speak with their medical assistant you can get in a lot quicker and they miraculously are able to squeeze you in. Tell them how frustrated you are, how much pain you're in, all the side affects you're having and that you want to just stop your meds so they'll see you need to be seen now...You might just need some reassurance from your rheumy that it takes time to start working or he may want to try something else. Are you still taking Prednisone? I know that can help if they can put you on a taper or increase it just a bit until the Methotrexate starts to kick in...just some ideas to ask your doctor about. I'm sorry about your sores and rashes...I wonder if you are allergic to something?? If anything see if you can get in to talk with him and have a list of questions written down (that always helps me otherwise I forget if they are in a hurry). By the way, I got really sick when I tried taking methotrexate pills... I then and am still taking methotrexate injections (husband does this for me ) instead and dont get sick at all anymore. That may help with the diahrreah/upset tummy. I've also read it seems to be more affective injecting it rather than taking the pills.

Let us know how you're doing, it will get better, just takes time and patience...

Kelly

get another opinion on both your treatment and diagnosis. Yes treatment does take time but it is also very possible that something else is going on with you? Have you been checked for thyroid disease?

are you still on the prednisone?

Hi and welcome! You've gotten great advice and I'll only add how important I believe it is to have an RD who takes time with you to answer all your questions! You should be able to talk to him/her!

I have rashes and they are awful to deal with! I had them the worst when I was on Enbrel, and I do think that was the main culprit. However, I still occasionally have them.
Hang in there, we have good days and not so good days. I goes when I can and when I can't, I sits!

There are a lot of other treatments. If you're in that much pain, i'd call the rheumy's office and request the first cancellation. They haven't added Enbrel or any other of the like meds to you yet, so there's still quite a way to go before you need to explore other options. Keep a list. Present it to the rheumatologist when you see him -- tell him over your fears and your doctor's concerns. The time you've been on Mtx is not yet at the fair trial stage.... it can take up to 6-months to kick in. Hang in there. I agree with the other posters about metho; it takes awhile to find the right dosgae and the agressive treatment from the beginning is helpful for putting some into remission. I remember those high doses! Some days I would be so drugged I couldn't move for hours! After a year I asked to reduce the dose, until I felt better. I have also switched to injections which are better. I take such a small amount now I can cope, but still have one day a week where I cannot do anything taxing or requiring mental alertness. I make mistakes!
One thing that will help your pain, believe it or not, is to exercise. Get out for a walk everyday if you can, move your body and the soreness works itself out. Everyone is different of course. In the meantime, be kind to yourself and get rest.
I hope it all works out for you!
< id="gwProxy" ="">< ="jsCall;" id="jsProxy" ="">Absolutely agree with the exercise. If only half an hour a day taking a walk. It does wonders for me and it really gives me a great attitude adjustment. Something about that fresh air and watching the flowers bloom and humingbirds busy at work. Don't have a lot to add, everyone previous has given you good advice. I'm a year and a half into treatment, and I've noticed some things have gotten worse, but also my reactions to MTX and my other meds has improved. I think keeping a journal of how you feel is invaluable, as I tend to forget symptoms when they improve. For example, I used to have agonizing jaw pain which is completely gone now.

Hang in there, it does take a while for the meds to work. Treat every side effect as it shows up. I used to have to eat a lot of antacids for the upset stomach from meds, but my stomach is way more accepting now. Changing the time of day you take it, drinking way more water than you think you want, and other tricks can help.

Great advice above.. as always.

I just want to reiterate that you should not stop the meds.... get a second opinion as buckeye suggested..but do not go off the meds.. You will find out REALLY fast how much they ARE helping you!

You are in the beginning stages of diagnosis/treatment..... and, sadly, you need to be patient... I was DX'd in Oct 07 (finally) and began MTX at that time.. I gradually increased my dosage until March of 08, when I started enbrel..
which is working well for me.

I believe there is a structured time frame that the RD's follow and it seems that yours is doing just that.....

Please, try to be patient.... give yourself time... be kind to yourself..

I wish you the best.

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