I am in a similar situation, just with my hands and not my feet. Since this all started 3 years ago, I cannot remember my hands feeling completely pain/tightness/stiffness-free. I started MTX first but quickly added Humira due to continued and advancing (more joints getting involved) symptoms. I will say that after stopping meds for 8-9 months and then restarting, I have noticed more days with minimal symptoms. I cannot complain! My pain is really mild, and I am very thankful as well. Though there are a lot of things I cannot (or will not) do with my hands, I still work and have hobbies that use my hands a lot. I have pushed being on Humira and MTX to prevent damage, and I guess I personally have come to a point right now of being satisfied with minimal pain/swelling/stiffness. I suppose that may change if/when my issues worsen. It is so hard to know what is acceptable or expected.

Can I ask why you stopped all meds for 8-9 mo? We're you in remission (no pain)?

Well, at that time I had an astronomical amount of stress in my life, and I think that was making me have more symptoms, and symptoms that were not typical for RA. My rheum was not sure if that was the problem and I sort of gave him (and myself) an ultimatum and suggested I stop my meds and see what happens. He wasn't overly thrilled, but said with mild symptoms (and I am seronegative) he allowed me to do it. I was so frustrated at that point. I had a hand MRI that was supposedly normal (though I have considered having another radiologist read it). So despite textbook classic start to my symptoms I thought maybe I don't have RA at all. I had basically no change in my symptoms for a few months -- further making me doubt my diagnosis. Symptoms gradually increased (though still mild) and I also developed dry eyes and mouth. So I reluctantly went back hoping to restart meds. I expected my rheum to doubt my diagnosis but he basically listened to my symptoms and examined a few joints and right away ordered my meds that I restarted the next day. My ESR and CRP were mildly elevated but he did not wait for those results to order meds.

Crazy as this sounds to many people here who have severe symptoms - mild symptoms can be very frustrating. You may not notice dramatic changes with meds, making it difficult to tell if they are working, all the while worrying damage may still occur. I still have symptoms, but I can function and I have some peace of mind that I am doing all I can at this point.

That's funny because I was just asking myself the same question? I recently just got back on MTX, first 5mg & now 7.5mg & feeling much better. No more toe, ankle, elbow issues even though when I had them they were mild to moderate at worst. So now I feel back to around 95% & what I was asking myself was, "Did I ever feel better than what I feel now even during my 1st wave of MTX treatment"?

I stopped for a a little over a year & the symptoms came back very, very gradually. I started back about 4 weeks ago & I finally feel that weight of "Am I, am I not, is it coming back or are these symptoms something else"?? Well, it's obvious it was now. I was still never that back even at my worst 2 months ago. I'd say I was at worst 80-85%.

However, I'm not digging the nausea, even on as little as 7.5mg I'm mildly nauseas from Monday - Wednesday?? And I'm taking my folic acid too?

AND fighting my fourth cold in 2 months. I think I'm gonna lose this one. I feel like crap and ran fevwr all night. And with me on "liver watch", no cold meds? This blows. Any ideas fie relief out there?

cold: i like saline and flonase.

i like this thread because it deals with alternative discussions (not facts kidding! kidding!) about folks having mild to moderate and finding your own way.

my rheum just increased the mtx pills every so slowly the first year or two til i was up to max then i switched to the injectable mtx.

over the course of a couple years i tried many dmards before the addition of bio.

addtionally, there are plenty of folks who can not take a biologic, period, due to co-illnesses. RA sally comes to mind, a blast from the group's past. i think she is on sulfasazaline, and plaquenil and ivig therapy just to ruminate on how different everyone's path is.

i think the chronic nature of this disease has shown me that pain level ebbs and flows but for myself, I have managed not cured the inflammation and pain. my brain has however progressed in acceptance. better than nothing :). I have a stupid lung co-illness though that argues a LOT with the RA meds. they do not play nicely. for folks that do not have a lot of infections, I wonder if they get better pain management from uninterrupted treatment?

depot

And hey, let's address the issue of feeling guilty because other people have worse symptoms. By that logic, there's only one person in the entire world who can ask about things or complain. You do you, because nobody else can do a better job of advocating for you, or knows how you feel!

I learned early on that I have some friends - they're good people, this is just their quirk - who feel compelled to tell me that they feel worse than I do, if I ever bring up the RA. I think, in their minds, they're 'giving me perspective' and reminding me that it could be worse. Bah. We're all trying to get through the day.

Seeing my typos now - so much for checking in on my phone @ 5AM with a fever and not putting my glasses on! :) Glad you all got the gist of it though. Depot - you crack me up. Shall we also discuss how our microwaves are cameras? Bwahahahaha!

Anyway, I'm thankful y'all are here and sharing your personal journeys. Thank you.

hey depot,

I've always wanted to know about the MTX injectibles (just in case). Is that daily or once a week? Or some other time table?

If you can convince your rheumatologist to go injectable, that would help a lot. My rheumatologists both said pills are 80% less efficient than injectable. To say nothing of what pills did to my stomach.

Watch the antihistamines if you have a cold. They make my liver enzymes go up every time. Arava also does it, although cutting back to 2 days out of 3 seems to have solved the issue. I was traveling yesterday, couldn't get at my weekly pill sorter. So I just took the Arava, thinking that even if it was my off day, it wouldn't hurt. WRONG! I could feel the liver swelling this morning. So, next time, the option will be if in doubt, don't take it!

If you get on the injectable, and you are still wondering, then time to ask for a biologic. My former rheumatologist left me on just mthx, and I was in constant pain, and got bad deformities during that time. I didn't complain for 4 years, and then when Celebrex was taken off the market, I went in and begged for something, and suddenly, mthx with a biologic, I was 100% for 4 happy years.

So yes, I was maybe 40% on mthx. But, that was still better than being bed ridden. Not to brag, because any RA pain is too much! So, some good periods and some lousy periods and some horrific med failures. So for me, the meds make a huge difference.

I tend to think if people think the meds are not doing enough, it means you are being undermedicated. I had to go off mthx, for a week, and then lower my dose from 17.5 mg to 12.5 mg. The difference was unbelievable. I went from exercising daily, being active, doing all the things I wanted to do, to almost nothing. And mthx was not the culprit it was antihistamines that made my enzymes go up. Except my rheumatologist didn't appear to believe me on this, even though I explained they were raised before mthx, and they only went down, when I stopped the daily dose of Reactine. Well, tough, I know what affects me. Not saying mthx isn't part of the problem, but it was not the trigger.

As for people feeling worse than me, my mom is the worst. She had a knee replacement last Oct. and is still icing it, and says it feels terrible. And I acknowledge it probably does. I told her not to have a TKR at 87, but my sister pushed her into it. So yesterday, I told her my thumbs need to be reconstructed, and my knees both need replacing soon, according to my rheumatologist. We won't even talk about the left foot. Been there, done that on the right! So, no surgery, I am pretty much sure. My mom actually stopped her whining for a while when she absorbed how much damage this disease has done to me. Probably a first. But, since I worked as a chaplain with dementia and Alzheimer's patients, I just take her with a grain of salt.

As for others, and their apple cider vinegar/tumeric and "eat better" cures, I have stopped arguing, other than to tell them that I did the diet with no sugar, gluten or processed foods, and it did nothing. Probably because it wasn't much of a change from my normal vegetarian diet.

Sadly, the general public is woefully ignorant about RA, unless they have encountered a family member with it. I guess we do need to work on educating the public, but arguing that OA in their little finger doesn't even touch the pain of total systemic body RA, I have found to be rather fruitless. Sigh!

You felt your liver swelling??????

oceans.

My rheum has me on once a week injectable - but I have heard of some folks that have a rheumatologist that advises them to split the injectable dose. Has your doctor brought up injectable with you? or you don't have any GI stuff which is good maybe. Or you seem to go off and on and maybe you can't be bothered. the pills are probably easier for you I am going to guess you are going to say :)

Susie

I hope your fever hits the road. have that useful spouse bring you a ginger ale. :)

depot

Marlene, I had a toe with RA that brought me to my knees. Worse than all the RA pain I've felt In years. Not a little finger, but OA and no laughing matter. Gluten can be a real problem with people who have celiac, another ai disease, or with gluten intolerance. Think about people with nut allergies or sensitivities.

It has hit me once again how long this road is. Doc said stop the MTX for two weeks and go ahead and take cold meds. Whenever I'm taken off, I picture the RA monster (I think I've described him before as the evil little knife wielding troll that lives in the wall in Stephen King's Cat's Eye story) starting to party in my joints. I don't think this is the last time I'll be playing this game. :(