Just curious to know how many of us have a diagnosis of RA and whether people have both AS and RA.

I arrived on KickAS because of a tentative diagnosis of AS and then stayed, even though my diagnosis changed, because of the wonderful support and information available on KA.

So I'm also curious to know if others arrived here for the same reasons.

I have been diagnosed with seronegative rheumatoid arthritis. The early involvement of my shoulders and hips combined with the seronegative status (no elevated rheumatoid factor) were the reasons for the earlier suspicion of AS. I now have involvement of hands, wrists, elbows, knees and toes as well as the original shoulders and hips. The involved joints are perfectly symmetrical (which is quite different that AS). My sternoclavicular joints are also inflamed.

I don't have any spinal involvement or SI joints or heels, although my tailbone is inflamed which led to an early suspicion of SI joints because the pain was in my butt.

For DMARDS, I have so far tried plaquenil, minocycline and now methotrexate. I'm still waiting to determine if the methotrexate is effective - the other two were not.

In addition, I'm taking celebrex and prednisone to keep the inflammation under control until we determine whether the mtx is working.

Looking forward to hearing from other RAers.

Hi Wendy

I guess I should probably say something, I probably qualify for a few of those requirements

technically I have gotten a diagnosis of ReA (Reactive Arthritis, not Rheumatoid Arthritis)

whoever came up with those RA/ReA acronyms should be severely punished, just ASKING for confusion

and then I must add that I don't believe my DX is likely correct, I don't have any of the digestive problems associated with ReA, but do have chronic pelvic floor pain. So I think that is why my rheumy gave me that, he is pretty sure I have SOME form of auto-immune thing going on, he listened to my complaints of having chronic internal pain, and went in the direction of ReA. He was ready to put me on Remicade after a few months of sulfasalazine didn't help, but I just said, let's wait until we've really explored some of the other options, which is where I'm at now

I am HLAB27+, have SI joint/sacrum problems, history of iritis, achilles heel pain as a kid, and a few other things that I've noticed that are common with many people on this forum, including Twisted Sense Of Humor, (TSOH) and of course, Good-Looking & Modest (GL&M)

i arrived here because most of my doctors were becoming convinced that i had some sort of autoimmune inflammatory arthritis with spondy fitting my symptoms most closely of the known inflammatory arthritises. they still think that.....

but with only "mild" radiological evidence and "mildly" elevated ESR and CRP and no other blood markers, the rheumies have all been hesitant to give me a definitive dx, which i don't mind so much except it also means they've been hesitant to do very much to help me. so i'm still in the process of trying to get some proper help......

i stay here for several reasons:

1. so many of my symptoms are the same as others here so in symptom management, i find others help me and visa versa.

2. AS has not been ruled out yet....still in limbo as far as a dx goes.

3. everyone here understands what its like to live with chronic pain.

4. once you get to know people, make friends, how do you leave them?

5. i agree with Dow, some wicked senses of humor, its a fun place to hang out!

Aha - the unacknowledged symptoms of TSOH and GL&M. Rarely mentioned by the medical profession but well-known within the ASRA community.

Your symptoms certainly sound like one of the spondys don't they - the very symptoms that I don't have - SI joints, iritis (although I get episcleritis instead) and achilles heel pain, plus the all important HLAB27+ which I also don't have.

I think one reason this new RA forum may be helpful is through this kind of comparison. It's a site rheumys might want to be paying attention to.

Hi Sue - your reasons match mine, other than #2.

I do hope eventually you are able to put a name to your symptoms.

hi wendy!

well, i know it took some time for them to figure things out for you.
also know even with a dx, symptom management has been a challenge for you, even with the drugs.....

maybe a question for you....why haven't they tried you on the biologics yet? or maybe they did and i have forgotten or maybe you decided against that route and i forgot that. just seems to me with all the troubles you have had that they haven't treated it more aggressively with the biologics; its just that its about the only treatment where i've heard the phrase "it gave me my life back" on more than one occasion. narcotics and prednisone, celebrex and mtx just don't seem like the best way to handle it for someone who has suffered as much as you have, but maybe i'm wrong, or have missed something, and if i have, please forgive this bad memory of mine.

Hi Sue,

I think the idea is to try the cheaper, more obvious DMARDs first. I guess I agree with that idea because the biologics make me nervous. I'm willing to try them if the older DMARDs don't work. So far I've worked through plaquenil, minocycline and now methotrexate. If that doesn't work, probably the next step would be a biologic. My rheumy did agree that sulphasalazine is less effective for RA so he probably won't suggest that next.

it's always interesting what each of us is afraid of, maybe it depends on our past histories?

for me, since i had an experience of severe nausea (literally felt like i was going to hurl any moment for the few days i was on it) to a sulfa antibiotic and have ongoing gastritis to manage, i'm a little concerned i'd have stomach issues on the sulphasalazine. and due to my gastritis (and ulcers running in my family), i'm even more concerned about taking the MTX. on the other hand, there is no reason to believe i'd be any more likely to have issues with the biologics than the next person and i've heard so much good about them (unless someone develops an infection / sensitivity to them or they lose their effectiveness, so i'm less fearful of those. my rheumy would have let me try the sulphasalazine or MTX but he and i both believe i'd have gastro difficulties with them, and he won't consider the biologics based solely on symptoms. however with that said, he did let me try LDN (cheap and safe) and though its not the miracle that others swear the biologics are, i think it has helped me some and i have literally no side effects from it. another thing you might want to consider. though no proof yet for RA that i remember, its safety and price make it a low risk thing to try (so long as one is not taking narcotics or ultram). but i also know you are a careful, thoughtful person that researches and weighs all your decisions, one of the things i appreciate in talking with you.

I was diagnosed with RA as a child and had surgery on my right elbow joint at age 19. My first treatment was 4 aspirin 4 times daily. Yes, that is so many aspirin but remember how long ago it has been since I was a child. :o)

I took about every NSAID there was and developed asthma when I took them so no more NSAIDs. I have taken Placquenil 2 different times, MTX pills and injections, Azulfadine, Prednisone all through this with doses up to 60 mg. daily, hospitalized at different times, taken Imuran which took care of my Iritis for several years (tried again recently and my face swelled up like a watermelon),Remicade for a year which almost did me in (according to my dr. about every time I see him) :o(
Humira which made my blood pressure drop to 42/30 and took days to come up. I am down to 4 mg. of Pred trying to get off of it because of damage to my intestines from it. I am down to just pain treatment, going for quality of life. I do have spine involvement from the RA and the AS and wear a brace. I have a brace for left wrist and going to dr. Tuesday for a splint/brace (or surgery) for my right thumb and wrist. Hands stay swollen in general, along with my ankles and hardly being able to walk for most of the morning, both elbows hurt a lot and swell.

In my 20's the AS was added along with Fibro and then in a few years still in my 20's, I got extremely sick ending up in the hospital where they finally (with the help of UCLA) diagnosed Systemic Lupus Erythematosis. I do have skin involvement at times also.

I don't have much energy because of the autoimmune overlap but I manage to keep things done around here and stay involved with my family and best friends and church. Since my husband also has RA, we take it very slow and easy in the mornings until we can get to moving. Before it got so bad, I used to be in the pool about 5:30 a.m. to help get in to the day. Then started waiting until after work. I had to go on disabiity at age 43. From the Lupus.

Well, I wrote a novel and still didn't cover my life but more than most people are interested in reading any way because we each have our own story.

I am thankful for this forum. We have a great bunch of people helping us and caring for us. Thank you Wendy.

Blessings.
Possi

Possi - what a tough time you've had of it. Your early experience of aspirin matches my grandmother's lifelong experience. She had horrific, deforming RA but the only medication she had was aspirin because that's all there was.

Such a shame that, once better drugs became available, so many of them didn't work for you.

Until I met you, I had no idea that people could be diagnosed with several of these extremely serious autoimmune diseases. However, your example does demonstrate that people can live a long, productive life even with these illnesses.

Bless you, Possi.