Good/Bad Experience with non-MTX DMARDs | Arthritis Information

MTX alone is just not cutting it. It's been since March and more joints are getting involved.

Anyway, I am going to discuss with my doc trying different or additional DMARDs before trying biologics.

I don't think Plaq. is going to create a huge difference, and my mom is allergic to Sulfa, so I would rather not figure out whether or not I am too.

What about the others? Please share your experiences good/bad/otherwise. Thanks!

By the way I am on my pred pack and my jaw still hurts. Swelling is mostly gone, a have a different pain now, but I still can't chew or open my mouth correctly. I am on the third day of pills. Maybe there is still some hope, but I almost feel like going ahead and scheduling with the oral surgeon next week to get a base line of what is going on. I had an x-ray when I was 19, which didn't paint a pretty picture, and haven't had one since, that I can remember. Figure that might be an intelligent first step in all of this. For the time being, going to stock up on soup, yogurt, applesauce and ICE CREAM! :)

why are you so quick to dismiss plaquenil. It works quite well as a MTX booster. I also wouldn't reject a medication because of an allergic reaction someone else had even if they were related. But basically your main choices are plaquenil, arava, imuran, or minocycline

oops I forgot sulfasalazine

buckeye2008-09-11 09:40:54Plaquenil is not a sulfa drug. It's worked great for me.

BTW - my father is allergic to penicillin as well as aspirin (and he has a cross reaction with most NSAIDs) and I've never had any problems with penicillin, aspirin, or any other NSAIDs.
Jas, I was just going to say that. Well, almost that. My mom is allergic to penicillan, along with a myriad of other things. I'm not allergic to anything that I know of. Not even poison ivy.

RD just doesn't think that plaq. is going to add anything to MTX, if MTX is doing nothing. I guess he sees it as a pretty weak alternative. Dunno. I could ask to add that but if I'm going to bother waiting months rather than trying biologics straightaway, I want to add more than that to the arsenal. I had read about triple therapy, with three DMARDs, but I wasn't sure if that was ever done with anything other than combo of MTX/plaq/sulfa.

Sadly, I think that's what my body needs. I have had 2-3 times where the MTX just knocked me over but mostly I would never know that I was taking such a powerful drug. I have no effects, good or bad.

KatieG2008-09-11 12:24:38Katie how the heck do you practice law feeling as you do?I am sort of kicking myself. The guy at Vandy said back in Feb to go with MTX and plaq ASAP b/c damage was being done. But my RD has said several times that he hasn't seen/doesn't think that plaq would add anything for me, I guess because I haven't seen any improvement at all on MTX. Thinking back, he wanted to go one drug at a time, so if I had a side effect, we'd know what caused it. I guess he planned to add if MTX alone wasn't enough. I haven't really pushed him on that issue. I guess I'd be willing to try sulfa, but I am in a situation where ppl at work don't know about my RA and don't want to miss any b/c of a bad reaction. But I do think I'll risk that before trying biologics, with having young, germy kids. KatieG2008-09-11 12:23:41As to how I can practice...well the key is that I get to sit at my desk all day long. :) I am cuddled up to a space heater as we speak. I am not a trial lawyer and I don't travel. I just sit at my desk and read, write, type. And read some more. And I LOVE MOBIC. And I drink a lot of caffeine, and make sure to get 8 hours of sleep at night. It's hard some days, especially when my wrist is acting up. The main thing is that I have it bad, but only in a few joints. My elbow/shoulder/feet are pretty mild, annoyances. My wrist is awful but the NSAIDs take away a lot of the pain. But they aren't taking away the swelling. That's why the x-rays in Oct. will be such a huge deal. Am I okay if I can just tolerate how I am, or am I going to be in trouble in 5 years if I don't do something aggressive now.

Some days it hurts some to write, but not so much that I can't do it. There was a while that I couldn't type or write, but I have dictation software.

So I was doing okay about pain until this jaw issue came up, which has me worried, because that is a lot harder to ignore. It is easy for me to do tons of things with my left hand (hold kids, pick things up, etc.) but it is impossible to not use your jaw, as my dentist said. So that may make me step things up here.

The biggest issue is FATIGUE. And let me be honest, the ritalin does help. I do have ADD of course. But I also drink caffeine on top of the rit. And I'm not shaky or an insomniac.

I love what I do, that's part of it. Also--my husband stays at home with the kids, works part time from home. So it's a necessity. But I hope to be able to do this the rest of my life.

I do worry about it quite a bit.

KatieG2008-09-11 12:33:27My mom is allergic to sulfa, and I found out the hard way I am allergic to sulfa. Yep, when I got put on sulfasalazine. And then again when I was put on celebrex, it has sulfa in it. But I kept taking it anyways. It just made something in my right side hurt. Probably my liver. Do not know was not getting bloodwork done because it was a GP who gave it to me. Thanks for posting joonie--I feel a lot better now, because i was on celebrex for almost a year--so that may mean I'm not allergic to sulfa??????? That was back when I was 20 or so. Actually I did stop taking it because I had blood in my stool (didn't see a doctor, just stopped taking it...smart, huh?) But I wasn't on PPIs. I am now. I don't know how the "allergy" manifests

I'm sorry you can't take it!!

I can't take Mobic either. I done good on it for a month or so, then... when I took the mobic it was making my stomach feel like I swallowed fire. I mean it was like fire was actually burning in my stomach. I even took it with milk, food, a meal, and all the above, and still it made my stomach feel like I ate a ball of fire. I told GP about it, he told me to stop taking it immediatly and not to take it again.

Sooo.... that is 2 anti-inflammatories down I cannot take. I'm glad you are able to get through your days at work.

I can understand your reluctance with the biologics. My doctor was pushing me in the beginning to add one with the MTX and my gut just said no. I was not so concerned with infection as my kids are grown and I seem to be very resistent to illness despite MTX & prednisone but I have an extensive family history with cancer.

Now I'm not saying you shouldn't add something else to your mix- we are all different . I did respond favorably with the MTX even as I tapered from a high dose to a low dose of prednisone. My doctor did not expect that to be the case at all. Now he says there would be no way for him to justify putting me on a biologic so I am so glad I did not just forge ahead. I might have been taking something and exposing myself to extra risks I did not need. Meanwhile thinking well that did the trick- oh well I'll take this for life.

I totally understand. At the beginning of this year RD thought this would just go away. I wasn't as sure only b/c I've had unexplained issues with pain in my feet and fatigue for years. I am also hesitant with biologics b/c my throat is always sore. I don't know why. I dont' have a fever, or a cold, and it may just be allergies. It's not enough to make me go to the doctor (though I should). It's not super painfully sore, it just always feels like I'm getting over a cold. So I worry about low-level infection issues.

Joonie, I am so sorry you can't take those nsaids...they are my life-savers...I did have a horrible, horrible, horrible reaction to indocin once (before I went on celebrex). I had been on naproxen, and they switched me to that, and oh my lord. That is the only time in my life I have had to RUN to the bathroom like that. It was like it liquified everything in me instantly. I didn't even realize it was an nsaid until this year. If I had known it was the same class (sort of) as mobic, vioxx, I may never have risked that again. But I guess they are all different

Katie- you also resistant to taking prednisone correct?

I really think the high dose of it flipped the switch with me. I'm sure everyone is so tired of hearing about my horrific onset but my recovery is "miraculous" even to my RD. I started that early January and now it is September and I have tapered to just 3 mgs a day.

Well my RD has never really offered pred as an option, except in a dose pack form. He seems to have a different strategy than a lot of RDs, but he's a younger doc in a big group and so I trust him b/c I think he's working from collective knowledge. I haven't discussed this with him extensively. But if my jaw flares up after this dose pack is over, I may consider that, out of pure necessity. My dad is on pred for addison's, and his doctor had his dose messed up, and he had some serious side effects, physical and otherwise. It took him a while to get back to normal. So I understand how bad it can be. But until I can get a dmard or biologic to work for me, I may have no choice if things keep progressing. We'll see.

It does irritate me that when all of this started, and I had ridiculous levels of swelling in my wrist, they gave me a dose pack and nothing more. I was breastfeeding at the time so I couldn't take nsaids but I do think pred would have been compatible. Oh well...

Wait. What's a dose pack? I always thought that when people said that, they meant a burst and taper pack of pred.I guess so. I don't know. My family always called it that. They have me on 6, 5, 4, 3, 2, 1 of 4 mg each. The sad part is that on the day of 6 pills I still can't bend my wrist and jaw couldn't open any wider. Although some swelling is down so I think there are mechanical issues and swelling issues. But this is not a big enough pack for me anymore, I'm afraid. My wrist is acting up today. But I am on day 3, of 4 pills. Maybe things can get better? I am a hopeless optimist. My doctor is old- he accepts limited patients and he does more teaching of rhuematology than practicing it now. However that means he is keeping current with treatment practices. When he put me on 40 mgs he told me it is common practice in Europe to start with 60 mgs to trigger a recovery.I think I would need that much to make the swelling in my wrist go away. After having many of the biologics and dmards fail for me...including mtx....built up a very bad toxicity to it that landed me in the hospital a very ill person...I am back to doing plaquenil only with possibly adding arava to the mix. There was a study done for people that have had multiple medication failures that low dose mtx and 400mgs of plaquenil a day give relief (NOT remissions just relief) to people like me with multiple medication failures. 200mgs of plaquenil and 7.5 mgs of mobic per day have put my 13 year old daughter who is a polyarticular JRA kid (meaning more than 4 joints involved) into a very nice remission. Plaquenil is just one of those drugs that is very slow to act and when it does..whammo...you really know it. Given the info that I just gave you, you might want to push your RD into trying the plaq. It is your body and basically you are the boss of your physician so he should be doing what you want to do. Katie- actually I had such swelling especially of my ankles and feet I could barely get my feet in very large slippers. This went on for 3 weeks. I can't say the swelling went away over night when he jacked up my prednisone but it was when it went away.I agree with ra momma. Plaq. and MTX worked well for me relief-wise. I only stopped the MTX recently because of side-effects. Plaq. and MTX are a very common combination and I'd ask your RD to consider it, or at least some other DMARD along with the MTX. You sure do want to avoid the biologics for as long as possible. Having said all that, I do believe that I was getting relief ONLY and that my disease is progressing. You need to really keep on top of that as well.

And BTW, Wantobe, I will never get tired of reading about the successes of you or anyone else here, I don't care how many times you post it. It's like a breath of fresh air.

Regarding plaquenil - I was on it for damn near three months before it started to do anything. Then one day I noticed my feet barely hurt when I jumped out of bed and ran down the stairs to get my morning coffee!!! The change was amazing. Once it kicked in, it made me realize how much pain I had been having. As a result, I no longer needed to take naproxen. I had been taking 5 Aleve's per day, and Prevacid to protect my stomach. Katie, you talk about problems with your jaw, what kind of problems have you been having? I ask because I know that I was told I had RA in my jaw but never really had problems with it. Then these past few months I noticed a lot of activity in my jaw. It was only on my right side, but some days it hurt to move it and I couldn't open it up very far. And recently I had a bought that at night it just hurt and moving hurt too but had less pain while moving it. I brought it up to my RD but he said that he thinks it could be something else. So I just wanted to know what your experience with all this is.

After reading some of your posts I feel like we have had similar experiences. A general question for anyone who can answer, what is anyone's hesitation with biologics? Why wouldn't you want to go on them? I am not on them now, but I feel like I am getting to the end of my rope w/MTX and either need to add another DMARD to it or possibly switch entirely to something stronger (aka biologics).A lot of my hesitation with biologics is from my RD. Until my jaw started flaring, I only had it really bad in one joint. Others have flared for a couple of weeks then been okay. But these past few months my elbow/sholder have been continuously (though mildly) involved and my jaw looks like trouble.

All along he was hoping maybe this was reactive arthritis, a type of RA that could be knocked out quickly, etc., esp. because my left wrist is totally fine (MAYBE minimal swelling at times but no pain) and I am RF negative (although ESD and CRP were elevated). So he has been hesitant. But my jaw adds a new angle, and at the last visit he indicated we might look at biologics if injectible MTX didn't work.

So I would definitely consider them. I will freely admit that being a big baby about self-administering painful shots (MTX ones don't hurt at all) comes into play, and I'd like to see if another DMARD would help. If he says biologics, I will go with him prob. I just have a tendency to get a cold for 2 weeks when everyone else is fine in 3 days. That said, I rarely get any lower resp. infections or fevers. It's just low level bothersome stuff.

As to my jaw:

I have been dx with TMJ disorders since 14-15. Wore night guards, etc. Saw an oral surgeon when I was 19 but he wanted me to have super drastic surgery to bring my jaw out (I think everyone agrees that my lower jaw didn't grow in properly, it doesn't jut out very much...I have a double chin even when I'm skinny, which is annoying! :) ) But my teeth were straight, never needed braces. Never investigated possibility of cause being inflammatory rather than mechanical, and never had visible swelling like this before. So no real idea of what was in the past.

I chew gum on occasion (I LOVE it) then make myself stop. I know I have done that since my RA dx. But for some reason last month, it started getting my jaw slightly painful, just slightly, so I was good and didn't chew gum. Then last week, a week after no gum chewing, it's like the RA discovered my weak jaw (or maybe it was RA all along, dunno). From one day to the next I went from "ow that hurts a bit sometimes" to "I can't chew solid food and my ear canal feels like it's going to explode." That was Friday night. By Saturday the swelling was visible in my face. I had trouble sleeping Sunday night, so much pain. I think something happened in my jaw where it realigned itself b/c of the swelling.

So I called RD monday, he said dose pack, see dentist. Dentist said that he could see the swelling, def. RA, take steroids, come back, may need oral surgeon referral. Well the steroids helped the swelling some but not enough. I still can't chew very well (no sandwiches, although I can now do cereal that has been soaking, soft veggies, etc.)

And what I've realized is that this pain I've had on the place where my ear meets my face that I'd attributed to piercing issues or just ignored was probably ear pain because of low level swelling that wasn't visible to the eye. I think it's been going on since at least last Dec. Can't remember before that. Last night my right jaw was really painful but my left ear hurt when I woke up, so it's just like my RA, really bad on the right, really mild on the left. How is that possible, that is just crazy. Anyway, I am going to try to schedule with an oral surgeon next week. I think this has been going on a while and it just went crazy recently for some reason. At my last cleaning in June my jaw didn't hurt at all. Who knows!

I did really great on Plaquenil during the "early" years. Then as I progressed, I tried adding others. My dad was very allergic to sulfasalazine. I wasn't allergic to it, but couldn't handle the intestinal problems from it. After that, I tried MTX but it failed too. I started Enbrel and it was awesome. I'm still on the Plaquenil. My RD said now that Enbrel is controlling my RA, Plaquenil can help "keep" me there. [QUOTE=KatieG] with the MTX that makes it beneficial. I am pretty near 100%, after a hideous start and a bad prognosis because of my numbers.

You would have to give it time though. I'm not hideously afraid of the biologics, but I want to leave as many things in "reserve" as possible. Good-luck.
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