New here - anyone with seronegative spondyloarthropathy?

Welcome Diana.

Are you on a DMARD?

I have sero negative RA and it is frustrating because I feel worse than the blood tests reveal and it even fools my doctor.....

Have any of you gone on disability? I bought private insurance some 12 years ago after diagnosis. Have been on total disability since Jan 09. My son also has the Crohns. The iritis is horrible. I already have a cataract on one eye, and orkin gon the other one. In fact it came back this week, so I see the eye Dr today. SUCKS!! Hate having to keep my eyes dilated.... and hen the flare begins I have to use prednisone drops every hour!
I have not seen a rheumy since July either, insurance changed and he is not on the new insurance. Cannot find a ne one in this area, ill probably have to drive to Atlanta again to see a Dr. My gastro handles the cimzia for me. He is a great Dr... finally!

Diana

No disability, I love working but find it hard to work full days now. My rheumy said she'd write me a letter to say to give me half days but I'd be scared I wouldn't get any work. I only work part time as it is.
But with your eyes involved I'd definately be looking at a stronger med. You don't want permanent damage. Surely with crohns too you should be on humira?
What is your rheumy doing?
Why no mtx? Too hard on your bowel?
I'd be asking some serious questions, golitho

I was just diagnosed with this today. So far only mild symptoms, hand swelling and pain. I really don't want to go on Humira or evem Methotrexate. Can anyone offer any home remedies> I will take some Naproxen and Plaquenel.

Any insight-thanks

I have had major eye issues the last 2 years, so bad that I now have cataracts. You know, I have never used anything for dry eye, I will ask the eye Dr on Monday. The newest eye thing is schleritis (sp?). I have not been off steroid drops this year at all.
I see you also have degen disc... I have had c-2 to c-7 fused. I also have cervical dystonia.

I have looked at that before, and am seeing a new theumy in January and plan to ask him about it. I appreciate your response!

I'm not quite sure why "started getting it in the other hand" suggests that it's not ReA/Reiter's....my ReA affects pretty much every cell, structure, joint, bone, nerve and tissue in my body. It started from my pelvis, which was the site of my last round of major localized staph infections, attacked my sacrum/lower spine, and then spread out through all my limbs and into my head.

Just be warned....ReA is sort of an "orphan" in the rheumatological world, second only to Fibromyalgia. Many rheumies barely understand it, if at all, because they were taught in the 1970s (or even earlier) that ReA is the same as other arthritis in basically every way except that it is triggered by an infection. The few rheumatologists that do understand anything about ReA often have wild misconceptions about it, and think that it should be the purview of infectious disease specialists, not themselves because it is so different from what they expect out of other arthritic diseases.

I sincerely hope that your rheumatologist is different and can shed some real light on what's going on with you, whatever it is....but if it is in fact ReA, then be prepared for trouble. I went to see several rheumies with hopes that they could understand what other docs were baffled by, but if anything, they were the worst of the bunch! They seemed actively angry at me for having symptoms that didn't match up with what they expected that an arthritic condition had to be like.

Most rheumatologists and even neurologists continue to insist that neuropathy isn't part of Reiter's/ReA whereas I am *constantly* reading reports of sufferers having neurological symptoms, mostly peripheral/facial neuropathy and transient paralysis episodes (my right arm radial nerve was paralyzed for 10 weeks two years ago, which caused wrist drop and basically made that hand useless) but with many others having issues that are all over the map. ReA is a much more pervasive and insidious disease than it is commonly given credit for in the classical medical texts and very few doctors bother to get anywhere near up to date on the latest science about it -- no less exploring the vast ocean of anecdotal reports now available on the Internet.

Of course, medical professionals always point out that "the Internet is skewed because you only hear from the people with the most unusual problems and symptoms, the most complaints" -- even taking that into account, it's clear that ReA is immensely under-diagnosed, potentially much more serious (even life-threatening in some cases) than most doctors assume, and can affect practically every part of the body, every organ.

SI issues are indeed one of the most readily identifiable classic symptoms of ReA, but of course they can happen in many other conditions as well.

One place to look for Reiter's knowledge is the relatively quiet RISG-L mailing list. There are still lots of very experienced sufferers lurking there who will respond if you make a post to the list. I'm also working on creating a Reiter's support group of my own, but don't want to get self-promotional on HW so if you become interested in that, I'm sure I'll be posting about it on the RISG-L soon.

I am 37 years old with this diagnosis currently. Also psoriatic arthritus. I am currently on remicade which has made a huge difference for me. However the increase in amount has be in pain 3 days before my infusion is due. I am frustrated and angry. No support system. My husband cant fix me so its easier to ignore it. Or get angry the doctors arent doing more. I dont know if this pain is normal between infusions. Feel lost

It has been about 10 months since my last post and I feel I've made progress. I no longer suffer  from the chronic fatigue, swelling and pain has subsided greatly, maybe 80% gone.

At my peak of pain I had very tender joint pain in 6 metacarpals, both elbows, ankle and hip and neck.  My 5th digit on my R hand I could not make into a fist.  My Ankle was very painful

I had 2 diagnoses of PSA, not ruling out Reiters.

I was on Plaquenil for 6 Mos and then Sulfasalazine for 3mos. I did not feel I was getting a tremendous amount of relief. I think Plaquenil does help but it is hard to say how much.

So 3+ mos ago I cut out Dairy completely, Red meat completely, Most sweets(except for dark chocolate). I cut down tremedously on salad oils using only small amounts for cooking. I've been excercising 3+ days a week,  as far as supplements, I've been taking fish oild regularly and a good quality probiotic.

As well, I Added lots of Garlic, Tumeric and Curry to my diet along with 30% increase in  intake of green veggies and fruits.

Overall I feel a LOT better. I know I can still have a flare but for those who say diet doesn't influence this disease, I believe they are wrong.

I hope this is helpful to the group

Post Edited (ecel) : 10/4/2011 8:48:02 AM (GMT-6)