Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group New member looking for advice/share experience

Hi I am Jenn, diagnosed with AS, but HLB-27 negative (after 2 tests, 2 years apart). I would think that the percentage of people with AS who are "negative" is larger than 10%...I read and hear of more and more people who do not have the HLB-27 positive result, but have been diagnosed with AS. Unfortunately, my wonderful rheumatologist moved out of state and my new rheumy is one of those who is doubtful of my AS diagnosis just because I test negative. I have most all of the symptoms and Humira helps me quite a bit (Enbrel did not). Since I recently moved to a new town, I now also have a new primary doc who also doubts the AS diagnosis just because of the HLB-27 negative results. I am frustrated with these folks, and now have to undergo many more tests while the new primary doc tries to "re-diagnose" me. But one thing that did come up in all the blood work is that my liver enzymes are sky-high; the ALT "normal range" is 2-46, and mine was 207...the AST (normal range 10-41) is 67. I asked if all the meds I take would cause these numbers to be so high, and he said no..although I do know that most everything prescribed is metabolized through the liver. Thursday night I had horrible pain and the feeling of tightening or swelling in my right side, in the area at the bottom of my ribcage. It got so bad that my hubby took me to the ER and a sonogram on the area showed (no stones)problems with my gallbladder and the "biliary duct" not operating at full capacity. I have an appt to see a surgeon tomorrow, and if removing the gallbladder will stop the attacks, I am all for it. BUT (and it's a big one! )I am a little scared about surgery because of taking Humira and the resulting lowered immune system. I was prone to infections before the AS diagnosis and taking Humira, and had a horrible experience after having a hysterectomy. Within 2 months' time (of the original hysterectomy surgery) I was opened up 7 more times...and a year later 2 more in a weeks' time. I had more hemotomas than the dr. had ever seen and got infections right and left. That particular doc told me that she wouldn't touch me with a ten foot pole (surgery-wise) again. So now I don't know what to think...I would like to know if anyone else with AS has experienced having gallbladder problems, and if anyone has had surgery while taking Humira (or any of the other immuno suppressant meds). I am told by friends that gallbladder surgery is a day surgery, pretty much in and out in a day. But I wonder if I would need to be hospitalized, to be watched for infection??
I would appreciate any and all help with this...I am a little scared, but I do my best to try not to stess on things that I have no control over. THanks!!!

Hi Jenn.... sorry to read this, it sounds like you're dealing with an awful lot right now.

Even if the current stats are correct that only 10% of ASer's are B27 negative, there are still 10%, not zero! It must be very frustrating and upsetting to have the doctors now turn around and doubt your diagnosis, especially considering you are responding well to Humira! Imo, no-one should be prescribed TNF blockers unless there is a solid diagnosis. Perhaps they are just trying to 'refine' or double check your diagnosis? For example, it is not uncommon to be B27 negative in the sister SpA's, plus HLA B27 is not the only gene associated with AS, it's just the most widely recognised and longest association the docs are aware of. Sometimes it takes many years for the doctors to nail a diagnosis down to the specific SpA as the disease may manifest in new ways over time. If your symptoms haven't changed lately then I'd be puzzled about why they are reviewing your dx. I wouldn't expect being negative would be enough reason to rethink it.

Very sorry to read about your raised liver enzymes and possible need for gallbadder surgery. I hope there is time to stop the Humira for a bit beforehand, and if they feel you can be released the same day it may not be a bad idea, as long as you're aware of the signs of infection you'll need to watch out for. Hospitals by their very nature are home to many infections which may be easier to avoid entirely if you don't stay there and are safely back at home,... but that might just be my own paranoid perspective.

Please let us know how it goes with the surgeon tomorrow.
Hugs!
mig

Sounds like surgerry is risky for you. The Dr.s willl make smart choices for you. I was supposed to go on Humira and then needed surgery. The Dr. told me not to start till 2 weeks after surgery. It has been fine except that the pain was gone from the surgery pain meds and now it's all back. Waiting for the Humira to kick in. My 2nd shot will be this Friday.

I am also HLA-B27 negative but the MRI and CT scan shows AS. My rheumysaid it is from Crohns disease.

Good luck with surgery.
God Bless,
Vicky

Hi AZJenn,

Sorry you're having such trouble! I do not know if I have AS or undiff. spondy, but I did have to have my gallbladder out 10 years ago due to stones. I was way too young to have that problem, so I chalked it up to all my weird health issues, and assume it is related to the spondy. Sounds like you are having different issues, though.

Good luck!

i am HLAB27 negative and have not been diagnosed by a rhuematologist as having any kind of arthritis, though the orthopedists and physiatrists that i work with on a regular basis for my SI and multiple tendon injuries really think i must. undiff spondy is only about 25% HLAB27 positive, but i think a lot of those people eventually get put in another category after things have progressed far enough for "proof" to be evident, from what i've read. and if a drug works for you, i don't know why a doctor would want to rediagnose you and run the chance of your losing this drug....i can see the other way around, but to try to prevent you from a treatment that works, well, i hope that doesn't happen.

i have a polyp in my gallbladder, but its small, so they are only watching it. i think though for me that its related to my high cholesterol. diabetes and heart disease run on both sides of my family.

i don't know what those high numbers mean (specifically) but if they are high, you are right in being concerned and there has to be a reason. ask questions (of the doctors) until you get respectful answers, and do your homework on the internet too (as it sounds like you are doing). some of my numbers (for other things, not liver enzymes) are either borderline high or high and i don't let the doctors brush them off.

sue