The wife of a professor I had in seminary had RA. He was home on sabbatical for a year, from being a missionary. They were in a country with malaria, and they had to take prophalyctic Plaquenil the entire time they were there. (ie tonic!)

Her husband said she was basically normal the whole time she was in this country, but the flares returned when she came back to Canada. He also added that they had 5 servants, (this employed local people, I guess!) and they did everything, so no stress on his wife! That is the part of the puzzle we all need! LOL

If you are sero-negative, you still could have RA. I was on the very severe part of that scale, 18 years ago, and in those days, no high blood tests meant no RA and no treatment. So maybe your doctor isn't aware that 30% of all RA cases have no blood markers? Look up sero-negative and see what you find.

I am glad you have been vindicated with your pain. There is nothing worse than being in pain, seeing deformities, and being told nothing is wrong with you, or maybe something mild. Be strong with your doctor in pushing for meds that do help. If adding mthx is not enough, ask for a biologic.

By the way, if your hands and/or feet are deforming rapidly, that is another sign of sero-negative RA. I got it first in my hands and feet, then it spread to other joints. When I go on meds, the last thing to be helped are my hands and feet. It takes some unusual drugs to stop those hand/feet flares. Oh, and good to hear your liver is fine.. That is so important with many of these drugs.

I think my doctor knows her stuff. My ANA titer numbers put me squarely in the RA diagnosis, but my SED rate is lower than she would expect. But she explained that very few of her patients actually fit the classic profile, and that finding the right treatment is the priority, and that the initial treatments for various forms of connective tissue diseases are similar anyway. I was just surprised that after all that bloodwork there wasn't a definitive answer, and her point was that sometimes this is the way it is. But I definitely have some form of it. The Plaquenil is (I think) starting to help a little, and hopefully the MTX will work well for me. As eager as I am to find the right meds, I see the value in adding one at a time so that any positive effects or side effects can be attributed to the right thing.

I'll have to put getting servants on my to-do list! Seriously, though, I run a small, very diverse, intensely hands-on farm, and I have some seasonal part time help. But I'm looking at doing some expansion which would allow me to have more help so i can do less physical work. I know that 'expanding' doesn't sound like it would lead to more time to rest, but I have to generate more income to pay for the helpers, and I think it's going to be possible. I'm 57 and I wasn't going to be able to maintain this pace indefinitely anyway. Ironically, I give motivational talks to people who want to start farming as a later-in-life career, and I talk about maintaining the most important piece of equipment on the farm - the farmer. Time to take my own advice!

Meanwhile, I'm adding a gin and tonic weekly for purely medicinal value. Heh.

I'm curious when you all say you can "see joint deterioration" in a matter of months?? I look at my hands every day several times a day & I'm wondering what are you guys finding? What's noticeable? Is it a feeling or can you VISUALLY see a difference in your hands?

Oceans11, since my very first symptom was swelling in a joint on each pointer finger, I've been tuned in to changes in my hands from the beginning. I started photographing my hands against the same background every Sunday morning - when I sit down to my computer journal, I just snap a shot of each hand from the same angle and put it in a file. I wanted to do two things with these pictures. First, I wanted evidence, however unscientific, and second, I wanted to stop obsessing about it - until I started the photographs, I'd find myself at odd times staring at my hands wondering if I was going to lose mobility. The worry itself was starting to affect me. That worry isn't entirely going to go away of course, but now I remind myself that I'm documenting it on a weekly basis and I will be able to see changes and show them to my doctor quickly.

For me, it's manifesting as swelling in the joints nearest the nail bed. I also get 'trigger finger', when the joints lock momentarily and then sort of snap. My 'morning hands' sound like a bowl of Rice Crispies when you pour milk on them. In addition, one middle finger now leans to starboard a bit and seems slightly twisted. (Or maybe it leans to port. I've always confused the two.) My hand strength is still excellent, I can open jars and so on, but I'm not sure I could thread a needle anymore because fine-motor movements are getting more and more awkward. All of these lovely things have happened in an eight month period. My understanding of this is that the presentation can be totally different for everyone, so this may not be your experience at all.

@katie,

Thanks Katie for the reply. I appreciate it! Okay that's an awesome idea to take a pic every week, same day as to map the progress or regress. Like you said the worrying is bad enough already but maybe with a years worth of pics I find some sort of peace? I have 100% strength & mobility & dexterity (as of now). I have experienced a little "tightness" on my right hand. I can only describe it as if you washed your hands a few times but didn't put any lotion on afterwards? That type of tightness.

I think we're on to something really important here, oceans11. We can't control the disease itself, but we can control the worry part of it. And the worry may in many ways be more harmful to us in the long term. The fact that I can no longer thread a needle has absolutely no impact on my marriage, or my relationship with my adult children, for instance. But if I obsess over this, and become depressed or angry about it, if I would only talk about myself and my illness all the time.......well, those things would definitely have an impact, wouldn't they? And stress can cause issues with blood pressure and a myriad of other physical things. So we work on the part we can control.

I'm sure people with a longer track record with RA have better coping habits that they can add to this, but what has worked for me is to keep a private journal, I allow myself a few minutes in the morning to write about how I'm feeling, noting any aches and pains. I don't try to be noble about it and I don't try to complain - I just try to recount it honestly. I add a few lines at night, documenting exercise for the day, or any unusual occurrences with my body. I take the journal to the doctor's office and write down what she says. I put questions for her in the margin so i can find them at my next visit.

And then, I try my best to forget about it for the remainder of the day. This is my new reality. There is just no point getting angry or grieving over the loss of the ability to thread that needle, or whatever. (Not that I haven't experiences both anger and grief, and will continue to do so. But I can't allow it to become my norm.) If you surveyed 100 random adults, I'm pretty sure 99 of them would have a story: illness, loss, addiction, abuse, infertility - the list is endless. We have challenges to face with RA, but we aren't special snowflakes int he sense that we're the only ones on the planet with challenges. So, I figure my plan is to be well educated, to document this carefully, communicate with my doctor and follow her recommendations, document how I feel on the regimen and speak up if there's an issue........and get on with my life. Still lots of great things out there.

I agree katie,

Plus it really seems like RA or immune system diseases are getting a lot of attention lately? I have a feeling that in another 10 years there's going to be another batch of "super" drug for RA sufferers. I think the next step of drugs will get more people into long forms of remission. Or....at least I hope!

[Well, well, well.......looks like I'm back. No thanks to DS, but I just figured out that DS "Unjoined" me somewhere along the way. I re-joined and now the Send button APPEARS to work. Hold your breath.]

The question was: "Is there visible deformity?" In my case there was [and still is]. Many of my fingers have the "swan" shape from the last joint to the tip of the finger. The 4 smaller toes on my left foot look like they're wrapped around a stick [i.e., they're hunched over....not to be confused with "claw" toes.]

mama mia Katie great attitude. when we switched to this new site from the old daily strength, the rheumatoid board here well to my observation, we lost about 90 percent of the prior soothsayers who were patient, educative, funny, smart, witty and realistic. your last post reminds me of them, collectively. i loved in particular the i am not a special snowflake...i can hear blue dogs howling or RA sally high fiving you. thanks for this post.

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