Hi there, I just joined the group a couple of days ago too. I had a positive Waaler Rose test and the xray already shows fluid in my right knee. The pain is also worse in the morning, but I am just starting this illness. I also sometimes doubt if i have it, but my mother had it and I tested positive for that test. So I guess I am a bit in denial. Maybe go to another Rheumatologist to get a second opinion. I hope you feel better soon.

Patri

I have seronegative RA. WAs diagnosed in 1992. I was started immediately on Methotrexate, which worked well for a number of years. Ultimately I had to add Humira.

Diet does nothing. You need to be on a DMARD. To be honest, I think Plaquenil is the lowest level DMARD around. It rarely helps anyone but some Rheumatologists seem to either believe in conservative treatment....or the insurance company may require failure of this level drug before moving on to something more potent.

The present day treatment is for aggressive early treatment to halt the disease progression. That usually means MTX and perhaps a biolgic such as Humira.

FWIW - many of us find that we fire our doctors in favor or a better rheumatologist. It's a lifelong relationship, so very important to get one who really listens to you and provided appropriate treatment.

Might you get a second opinion?

Also, what was the criteria they used to give you a sero negative diagnosis?

This was sort of a second opinion. The first rheumatologist I went to never called me back with results of tests after I left 3 messages so I will not go back to him. The latest rheumatologist said that my blood work was negative and my X-rays which show numerous areas of degenerative joint disease is “normal wear and tear”however since my joint pains and stiffness got a little better with prednisone and I have classic symptoms of RA that she would categorize me as seronegative RA. Keeping me on low dose prednisone and added Plaquenil.

Has anybody ever heard of the Waaler Rose test. She assured me I am positive RA due to that test and xrays. Se said it was just staring and that may be the rheumatoid factor was 13.9. What do you think?

Thank you,

Patri

I believe - may be mistaken - that the Waaler Rose test is what the RF test was referred to about 60 years ago.

https://en.wikipedia.org/wiki/Rheumatoid_factor

About the low dose of Pred......is this indefinite? Or is it just for a short period of time?

Waaler-Rose... thanks for the link, Lynn. I may be mistake, bu I believe an RF value of 13.9 is normal. Doesn't it need to be 20+? I don't mean to discount your diagnosus, your disease, your symptoms. We all present and develop differently, AND respond differently to meds. Fluid in one knee doesn't sound like RA.

Lynn, you say low dose of prednisone. Generally, a singular first test for RA is how one responds to a higher dose of prednisone, say 60-80 mg, tapered.

Hi Dancersluvhockey. Being overwhelmed is sort of the normal first step for all of us, because this is an overwhelming thing to process, it's all so confusing at first, and everyone seems to know what you should do, but of course no one agrees.

You'll move quickly to anger, denial, possibly pass through periods of self pity, dark humor, or unrealistic optimism, and eventually settle into your new reality.

Give yourself time to work through the stages. You'll get there.

Thanks Katie! Right now I am overwhelmed and upset but I’m sure my emotions will run through the ringer for sure. I appreciate forums like this as I don’t think my husband knows what to do or say :(

Just joined and so thankful to be here. My RA diagnosis came last Sept and the typical stages followed. I am now learning to live for each good day and work for better tomorrow’s. Revamped my entire life priority list and contracted my to-do list. The journey/battle continues .....

The drugs scare me too and I was hesitant to take anything. But, at a certain point I could barely move without screaming so I relented and started on the plaquenil. I am a wheatgrass drinkin granola eater from way back, but I have to admit the plaquenil really improved the quality of my life (though it took about 4 months before I saw significant improvement). I also stopped eating animal products but that was later, and it also helped reduce my inflammation and the severity of flare-ups. I hope you find the combo of things that works for you. Wishing you all the best!

Diet doesn't do a thing for RA. This is an autoimmune disease.

Also, you might want to put a limit on how long you'll try plaquenil. Frankly, I think it's a starter drug that has been useless for most people. But if it's working for you, hey, great. If not, demand the good DMARDS like Methotrexate....and perhaps a biologic like Humira or Enbrel.

Sadly, most insurance companies make you jump through hoops....making you start with the lowest tier drug, like plaquenil....and then if that doesn't work, move you up a notch.

Seriously, I get so sick of people saying diet makes them better. If diet makes you better, it probably is for one of two reasons. One, is Placebo Effect, meaning you convince yourself you feel better, so you do. Except in the case of RA, the damage continues.

The second reason might be because either you don’t have RA, or you have RA and something else. A few years ago I started getting tendon flares, and meds, not even prednisone helped. I have some bad deformities in my fingers, now. My rheumatologist never addressed my concerns.

So, my stomach has been bothering me, and I don’t absorb minerals or vitamins well. We ended up in a gluten free restaurant, and I felt so much better, after eating. No bloating or pain. So, I stopped eating gluten for a few weeks, and all the tendon flares just stopped. I usually had at least one or two every day. So, I decided to get tested for Celiac’s disease. Unfortunately I have to be back on gluten for 6 weeks. And the tendon flares returned. Regardless of what the test reveals, I am going to go gluten free, if only because of my stomach issues. BUT, those flares have nothing to do with RA. My RA is well controlled with 2 DMARDs and a biologic. I will never go off my meds if possible. I need knee replacements, and that is going to be the hardest part of the surgery, going off meds.

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I'll take a different approach: if you can relieve some of your symptoms with a change in diet or exercise, you'd be silly not to do so. No, it won't 'cure' your RA. But good grief, this damn disease is awfully hard to pinpoint or quantify. Bottom line is when I see my rheumatologist, she's relying on my interpretation of my symptoms and health to make assessments.

If I'm fatigued because I'm eating crappy food, how am I going to know if my RA is responding to the meds I'm taking? Some of the symptoms of a food intolerance can seem a lot like RA symptoms.

I get really frustrated when someone is belittled for just trying to improve their overall health. Let's please stop telling people they might not have RA, or it's just a placebo effect. I mean, come on, the same people are telling posters to trust their own instincts about their bodies when they're asking their doctors about needing pain meds, or about changing their protocol in some way.

I agree that diet does not cure RA, but for heaven's sake, have we no responsibility to take good care of our general health as part of dealing with this disease? I agree that delaying recommended meds (recommended by the treating rheumatologist, that is) in order to experiment with dietary changes can be dangerous, but must this be an either-or issue?

Why on earth is anyone objecting to the idea that dietary / lifestyle changes could impact overall health, and one's overall health is a factor in dealing with RA?

No one is saying that a diet isn't a good thing. Of course it is. But to think it's the way to manage cure RA is crazy.

When people start talking about how a diet really helped their RA....it sends the wrong message.

Your diet absolutely does help manage your RA. We all know there is no cure. This falls under the "lifestyle changes" we may have to make to help us be in our best state of health. It also gives us some measure of controlling some triggers that may cause inflammation throughout the body, including our tummies!

There are some things we can do to help ourselves feel our best. The medicines help us but there are other things we have to do in addition to the meds help keep us in a better place.

For me - Staying as active as possible, Keep moving, good diet, taking rest periods when I need them, destressing our lives as much as we can, fresh air - not worrying all the time about things I can't control - and working on a project or hobby - these things we can do for ourselves in concert with our medicines and lots of patience too.

The good part is that each day is different so you won't be able to do the same things every day, so you can have lots of variety on how you make it through each day. RA will help you develop adaptability skills.