I have ankylosing spondylitis | Arthritis Information

 

I was diagnosed with AS about 10 years ago.  My doctors had a heck of a time figuring out what was wrong with me.  I was told that AS usually affects the back first, but mine all started in my feet (figures I wouldn't be typical!)

Is there anyone else out there with ankylosing spondylitis?

Thanks
Mel

I have AS. I was diagnosed 3 years ago thru my Opthamologist originally (frequency of Iritis), and confirmed thru my PCP with the HLA-B27 gene blood test. I have been seeing a Rheumatologist for almost 3 years.

I have had hip and back pain for 10 years, but chalked it up to the aging process.  I am now 39 yrs. old. The AS started in my hips and in my eyes (Iritis). However, if i went to the chiropractor at onset of hip pain for hip adjustment, my Iritis would immediately go away. However, I was having Iritis every month and my eye Doctor became concerned.

I have been on methotrexate (1.5 years) and that did not help. Then I went on Enbrel self injections for 1.5 years and that did not help, either. Just this past Wednesday I received my first infusion of Remicade. Hope this one works!

Last August, I had to have spinal surgery on C-7 and T-1 with a donor disc inserted and a titanium plate installed to hold it in place. Surgery did not help.

My father also has the HLA B27 gene as well as Iritis, but his AS has luckily remained in his hips.

What is your story?

At first I didn't realize I had a problem.  After years of laziness (and IBS/hyperthyroid disease), I decided to start walking every day.  So, when I first started experiencing foot pain, I chalked it up to being out of shape, bad walking shoes, etc.  Then one night after going bowling, I woke up with excruciating pain in my left foot.  I could not move it at all.  By the time I got to the doctor 2 days later, my foot was fine.  I repeated this pattern for 2 years, with the doctors scratching their heads and diagnosis this and that.  It wasn't until an orthopedic surgeon noticed that my feet were really hot that I learned I had arthritis.  I also had swelling in one or two fingers, but didn't really associate the two things (I had started a new job with alot of writing involved and I assumed the soreness/swelling was due to writing).

I was first on Lodine, the sulfasalazine was added.  After 6 months on sulfa I began having peculiar experiences.  I would have outbreaks of what seemed to be 24 hour flu.  Then nausea plagued me.  I'd have hot sweats and other side affects.  After a year of that, my doctor took me off Lodine and sulfa and put me on Vioxx.  I was on that about 3-4 years.  I had some side affects but it seemed to work ok.  With last years Vioxx scare, my doctor had a heck of time finding a new med because of my problems with sulfasalazine.  He decided on Mobic and I've been doing pretty good on that ever since.  I actually have less stomach upset than I did on Vioxx.

I'm about 10 years into diagnosis now.  My left foot has very little cartilage.  My right foot is a little better.  My hands have some activity but nowhere as bad as when I was first diagnosed.  I have a little in my neck and shoulders.  I have some in my back.  I've always had problems sitting on the floor, in comfortable chairs, etc.  My back doesn't give me too much trouble but I find some days I can not sit without soreness--like I just can't get comfortable.

I counter it by walking (slowly but surely ) and stretching everyday, which seems to keep my mobility up) The exercise can cause soreness, but without it I am 10 times worse.  I'd rather have movement and pain, than no movement, stiffness, and pain.

I haven't had any surgery.  There was a suggestion to fuse joints in my feet, but after much consideration, I decided to hold off.  All my doctors felt it should be a last resort because it could cause more problems than it solved. 

I think I've learned to adapt and improvise as I've gone along.  I think the most frustrating part is accepting the limitations.  I can only stand for 5-10 minutes maximum, so everything must be worked out to where I can sit, which days to do what chores, etc. 
Well, that's the rest of my AS story. 

What is Iritis?

Interesting. I had thought that AS was almost always back related. Do you have the HLA- b27 gene? Anyoune else in your family suffer, too?

 

Iritis, simply put, as my opthamologist explained to me is arthritis of the eye, causing a full blown redding of the eye and severe pain and light sensitivity. it is a horrible experience when it happens. i could not work properly (i am in sales) as cold calling was out of the question. I would scare anyone away!

My AS is primarily spine. However, AS has also fused my ribcage and my chest expansion is 1/4 " which has limited my respiratory intake to 34% of what a normal male at my age takes in for air. Basically, i get 66% less air due to decreased lung functionality. They have not painted a pretty picture for the 2nd half of my life. I feel fortunate to be in this modern era of medicine/drugs that may actually help slow the disease from progressing, as opposed to 20 years ago when OTC meds or harsh narcotics were probably all they had.

The biggest adjustment I have, too is accepting my limited mobility and lack of stamina. Having AS and a 3 year old son breaks my heart, as I always wanted to be the Dad to teach him how to throw a football in a perfect spiral or a curve ball in baseball or how to hit a 9 iron safely on the green.

 

Yes, I do have the gene.  My rheumatologist said that although it's primarily the back that is affect, not everyone is affected in the same way. I was also told that males more than femals are affected by AS, so go figure.

No one else in my family has been diagnosed with AS.  My Dad was diagnosed with arthritis in his back when he was in his 20s but back then they didn't have a name for it.  He has never really needed treatment because it only affects him maybe once a year.

Iritis sounds painful.  It's bad enough to have arthritis in your joints.

I get frustrated because of the lack of mobility and fatigue.  There is so much I'd like to do, but can't either because it involves standing and walking OR I'm just too darned tired for it.  I love spending time with my nieces and nephew and it's disappointing for all of us when I have to back out of things. 

Hi

Im new to the group and to the AS, Im a 28 years old Mexican semiprofessional atlete and business owner, I practice on regular basis Mountain bike, wakeboarding, slalom sking, rock climbing, running, and adventure racing, all those on a compettitive level on the national circuit, I even was part of the BMX national team and 6th place on the continental circuit when I was 14 years old, so you can get the idea of  my everyday activity level. Imagine what AS can do to some one like me whose life is practicing sports. I started having pain on my upper back on january of this year, I guess I have this illnes about a year ago, but I confused it with overtraining or some old crashes injuries because it was not constant, so I not even  but from this year on, it become so hard I could not sleep, even not lay down on a bed, so I started to rest on a kind of hamaca chair that was the only place I could be for more that one hour straigt, I was treated with several medicines that destroy my stomach, get allergic to most of them and even get a depresion that had to be treated with prozac, but I was walking and the pain was  reduced.  It took from 2 to 3 months and a lot of blood tests a gamagram and many others I dont remember to get the diagnosis, now im reciving a shot of Enbrel every two weeks and the result is that im training again, and living a normal life except for some details. I guess Im very lucky for what I read, my condition was bad, but todsy I have no pain at all and im back at work and life. I hope my history can help any one, becuase im doing great considering tha I have AS, if some one like to have some more specific info on the treatment I recive or the team that treated me I will be happy to help because I know how  this condition can change your life.

Rodrigo  

Hi
I'm new to group. I was first diagnosed with RA and I got uveitis and then fibro. Wasn't responding to remicaid and my rheumey didn't seem to figure out why I complained of my hips, back, shoulders, etc. Said I was in more pain than he would "expect given my diagnosis of RA". I finally went to another Rheumey and when finished describing my painful areas he said it sounded like Ankylosing Spondalitis. He tested me for the HLA-B27 gene and I was positive he increased my Remicaid and put me on some anti-seizure meds and also diagnosed me with Crohns. I'd heard that people with AS rarely test positive for the rheumatoid factor. I occasionally have terrible outbreaks of weepy clusters of sores on my rear end and herpes outbreaks on my upper lip that leave scars. The worst thing is the fatigure and pain. I fight the depression when I'm real bad. I've been turned down twice for ss disability and will be going to a hearing soon. Doc supports me for disability and says he doubts I'll ever be able to work. I'm 53 and just wish SS would read my medical diagnosis and stop denying the people who really need it and worked nearly all their lives putting in the money only to be denied when they need it. What a joke the system is.
It's comforting to read how other's with the same problems cope and sometimes thrive despite the diseases. - Thanks kwendt

HELLO ALL....INTERESTED IN THOSE SPEAKING OF IRITIS.  THIS SOUNDS LIKE WHAT I HAVE.  SAW AN EYE DR AND HE SAID DRY EYE AND PRESCRIBED RESTASIS BUT IT'S GETTING WORSE.  PAIN, REDNESS AND LIGHT SENSITIVITY IS GETTING MUCH WORSE.   BY THE END OF THE DAY I CAN BARELY SEE AND HAVE TO CLOSE MY EYES TO GET RELIEF.  I GO AROUND NOW KEEPING MY EYES HALD CLOSED DUE TO EYE PAIN.   ANY SUFGFESTIONS??  HOW WERE YOU DIAGNOSED.  RHEUMY DID SOME TYPE OF TEST FOR SJOLDREN'S SYNDROM BUT CAME BACK NEG. 

UPDATE 1/'06 ; JUST DIAGNOSED SJOGRENS BY INTERNIST AND OPTHAMOLOGIST.  RA DR' JUST KEPT BLOWING ME OFF SAYING THE ANA DIDN'T SUPPORT SJOGREN'S EVEN THOUGH MY EYES WERE BLOOD RED, LIGHT SENSITIVE, GRITTY AND IN CONSTANT PAIN.  I WAS HAVING A PROBLEM DRIVING!!   THE EYE DR SAYS I HAVE MODERATE CORNEA ULCERATION DUE TO DELAY IN GETTING DIAGNOSIS.  ANOTHER REASON TO FIRE MY RHEUMY.   ANYONE ELSE HAVE MIXED SIGNALS BETWEEN BLOOD WORK AND WHAT THEY ARE FEELING ??

KarenNTx38731.9688425926

Iritis plagues me 2 or 3 times a year. My Opthamologist helps me get through it. He gives me Cyclogel (sp?) to dilate my eyes to help with the pain, and then every hour on the hour for 3 weeks I have to use Pred Forte drops. This relieves most symptoms, and allows for most normal daily activities. It also goes by the name Marie Strumpels (sp?) disease. Ask an eye Dr. he will know. If he does not know, I suggest finding another Dr. !

I now have many doses of Remicaid under my belt now, and nothing. Absolutely Nothing. I have no relief what so ever, just a frustrating 4 hours every month as I go get this IV infusion. I am on a normal double dose than everyone else who gets the Remicaid. They give me a dose of 700 every 4 weeks. Most get 300 every 8 weeks. Most is all women in the group aged 60+. Remember I am a 39 yr. old guy, and the only male taking this drug in a setting with over 300 patients.

As mentioned by the Athlete above, I am gonna switch back to Enbrel shots twice a week, with double the dose(50mg) I had before (25mg). These were self injections, so I get back my 4 hours a month !

Seems Enbrel is better for us guys.

Hi.....I'm new to the group,
I was just recently dianosed with AS, although I've known that I've had it for nearly 10 years, since I was 16. Very frustrating! It runs in my family and I displayed all the classic symptoms, yet my doctors couldn't offically "diagnose" me bcs I was too young to have an MRI (I'm female) so there was no "real" evidence. Now of course, ten years later, x-rays show all the damage the disease has done to my spine and pelvis. Mine started in my neck, then spread to my lower back, then my entire back. My doctor at the time seemed to suggest that this was all in my head, as AS is a man's disease. Useless.
I haven't had any trouble with my feet yet, although I have had irits flare-ups a few times, I suffer with chronic anemia, and am afraid that with all of the drugs I take I will soon have some sort of IBS.

Word of warning; if you have AS it's a good idea to keep steriod drops on hand. It's pretty likely you'll get a flare-up at some point. Iritis needs to be treated RIGHT away. I didn't know what was wrong with my eye the first time I got it and was left with impaired vision for 2 weeks. Now whenever it flares up I have my drops on hand and it's gone within a day. To avoid flare-ups, wear your sunglasses!

Things are getting desperate for me this summer, as no amount of exercise or drugs seem to get my AS under control, and I was becoming really depressed and cranky (getting less nad less sleep). Dealing with chronic pain is so hard; nobody can really understand unless they are actually going through it themselves. AS is deceptive bcs we look fine, so it's hard for others to understand what we're going through. I began to notice that I was cutting myself off from a lot of my friends and family and was starting to become bitter. Luckily, I was recently offered help by a rhuematolagist that is conducting a research project on that drug; "Remicade". I don't think this drug is available yet in Canada, but when it is it'll be ridiculously expensive! Apparently this drug is works, although somebody else has said it doesn't, for men? Have any women here tried it? I receive my first dose next week, and I'm praying I'm not going to be one of the placebo-receivers. If this doesn't work I honestly don't know what I'll do.
Any tips on how to control flare-ups? Do you ever get really depressed about the future? Sometimes I feel like what's the point, I know this is only gonna get worse. I'm barely even 25 and I honestly can't remember what it's like not to be in pain anymore, I think I even dream in pain!
I'm not usually so negative, infact I think up until this year I've dealt with this pretty well. I guess it's gotten a lot worse lately and I feel like I just can't find any solace anywhere.
This is the first time I've ever had a chance to actually talk to others with AS (other than my dadoo),
Hope to hear back,
Emma.emu2438597.8573263889Emma,
I can so relate to your story!  I had problems all through my 20s with IBS and thyroid disease.  I got it all under control.  Then about 3 years later my feet started giving me problems.  I didn't think much of it until I woke up with my first flare (was an excruciating night of pain that was!)  It took over a year and 4 doctors to get my diagnosis.  Later my doctor told me that my AS probably started in my mid-20s but was not perceptible until my 30s.  By that time I had severe cartilage damage in both feet, my shoulder bothered me, I had trouble sitting still because my back ached, and my fingers gave me fits from time to time.

I went through a sort of grieving period after my diagnosis.  I could not stop thinking about being stuck in a wheel chair some day.  I had to quite working because of my difficulties and the fact that I kept falling asleep at my desk. 

I was on sulfasalazine for awhile, but I developed some sort of allergy which they didn't figure out for 6 months.  After that I was on Vioxx, which worked well but didn't always agree with my stomach.  I'm now on mobic, which seems to work well.  I also use capzasin-hp on my feet every day which keeps the inflammation in check and biofreeze on my shoulders so that I can move around.  I exercise every day and take short walks to keep up my mobility.

It isn't easy, but for me, I came to a point where I had to face the fact that I had this "thing" for life--and what was I going to do about it?!?!?  I started a website for chronic disease which became an outlet for me.  It's not easy keeping balance when you wake up everyday with one ache or another.

Wow!  Your line about dreams really hit me.  I have dreams where I am doing these amazing physical things.  Then I will remember in my dream that I am disabled.  It's really weird!

There is a great book called "Celebrate Life" which was written by someone with chronic illness. I found it incredibly helpful as I tried to deal with all the emotions surrounding my disease.  You might like to read it.

Take care!




I was told my a rheumatologist that i had As this was the frist thing about 30 years ago blood work and all the HLA-B27.Okay as time gone by and I moved to tex and different doc that seen to been droped I dont know if because it hasnt been ck in all the blood work I have had or why but snice I been told I have RA ,lupus,which seem to be drop also.Fibro,OA,polyarthrithis which is in all my all my joints right?and recently opteoporosis.I have some disform on little fingers,a little,I hurt all the time sometimes more then others,and the burning,the hot joints,all come with it the swelling,and stiff.was on plaquenil,celabrex.gold shots,and others but a few months back got hivis and was told my antibodys turning against me so was on 50mg pridsone.Right now havning flare up been hurtting at every little joint in my body but rheumalolgist said take 3 advils 3 times a day and my prtonix,tynol in between.SO do I have and why droped SA,lupus .also recent because I did not sleep good always tierd been on trazdone for over 20 years one doc listen and run test on sleep apeana sure enough plus oxgene level goes down when i sleep so now i sleep with a c-pap machine Last time I posted I said I'd be going to my social security disability hearing soon . . .  well I went this week (scared to death). I belong to a ss disability list and so I knew what to expect. It lasted 40 minutes and the doctor for the Social Security Administration was there to talk to the judge about his medical findings on me. Basically he said I was disabled from RA, AS, Uveitis, Fibro, crohn's and fit the criteria for SS listing of disabled. I was told earlier by my attorney that it's tough to be approved unless you are closer to 60.  But after the doctor was finished the judge said the hearing was closed and I was accepted.
I feel badly for all the others who are also disabled and need social security disability money TO LIVE! I waited nearly three years but I was fortunate to have long term disability insurance. I know why they make people wait - so you'll give up and do something else. Why don't they look at the medical findings in the very beginning and see how badly people are and accept them right away? Most of these people end up living off relatives (if they're lucky) or they end up homeless with no resources to fight this big bureaucracy. Write to your congressman and senator and demand that this type of treatment be stopped. Obviously the system needs MAJOR reform. Not every person is a malingerer or "milking" the system. For most people it's hard enough to seek help in the first place.
I'll get down off my soap box now. Hope I didn't offend anyone except maybe employees of Social Security Administration. For that I aplogize as you need to make a living too . . . let's just be fair with those that need the help.
I'm hoping now with this behind me I can have one less thing to worry about. I think being very sick is enough of a worry without adding to it. I too believe I've had AS for a long time as I can hardly remember a time when my lower back and neck haven't hurt. When it hit my eyes and then I developed Crohn's too - I was a goner for any kind of work. I was told it strikes mostly men but I've talked to plenty of women with the diagnosis. I was also told those with AS almost NEVER test positive for the rheumatoid factor . . . lucky me!  Do any of you have parents or grandparents with autoimmune problems?
My mother had Raynauds and Graves disease and my Grandmother had RA. I guess that increases the odds.
Take care and hope you all have the best Christmas and safe and Happy New Year.
Karen Well i am glad to here you got your hearing done and are happy with the out come... i wonder you have the same thing my brother has AS and Crhons i wonder if he could get disablitty.... well probably not now but down the road???  well merry christmas to everyone -B-

Karen,

I forgot to ask you what u take for all your pain??? i really am sorry you have to go through AS and i know it must be real hard.

This sucks no one ever writes IN here!!!!!!!

Lee

Miss Bran

I take Vicadin for pain and Zonegran and flexeril to sleep. I think I'm going to need a C-pap because I'm constantly fighting "in my dreams" that I can't breathe and I wake up gasping. Doctor said you keep doing that for many years and your are destroying your heart by denying oxygen . . . I might even sleep better with enough oxygen!!!

Karen Hi... new to the site- not sure if anyone is still checking this message... anyway - 26 yrs old,female, AS for about 5 years now. I started with all the pain killers, nothing worked. Finally about 3 yrs ago, my dr. recommended enbrel. it's been a god-send. MISS BRAN - see if your bro can take it; it's seriously saved me, before enbrel, the pain was usually a 9 or 10, now it's a 0 or 1....Hi JageMessier, Wow i am soo happy that finally someone actually is talking and on the plus side your the same age as my brother, i know that alot of people hear said that are at a new website but i believe it cost money soo.. i just stuck here. yeah i know of Enbrel i believe my brother has been taking it too.. it seems to work pretty well. I am really glad it helps you that much!!! its really good to hear because i've seen my brother and AS is no joke its alot of pain! so i am really happy for you and that you've got enbrel! So how did you end up finding out you Had AS? does anyone else in your family have it? becuase i heard is a genetic or something like that... i'm not sure i would really love to talk and ask more question to you so!! hopefully talk to you soon!!!

Hey B,

Well, to answer your questions... I found out I had AS because one morning I just woke up with excrutiating back pain and stiffness, it went away, so I just chalked it up to sleeping weird or something, but then a couple of months later, I just started having really sore hips all the time.  This was when I was about 20 or so. I took over the counter stuff but nothing helped. Dr. said it was RA, and put me on Celebrex, and all the other arthritis meds. Nothing helped and it started getting worse, to where I couldn't work, sit, stand, sleep, have sex... nothing! I was taking 6-10 vicoden a day. FINALLY, my rheum. dr. tested me and I tested positive for AS or Riter's Syndrome, and then they ruled out Riters. This was when I was 23. I did the steroids (and gained 10 lbs) and all the meds you hear about except methotrexate for fear of getting pregant (I was just about to get married at that point). My dr. finally put me on Enbrel about a month before my wedding (thank God, I could have sex again! :) hehe... and it's been working wonders!

As for family, no one else has AS, BUT almost everyone has some sort of bad arthritis and auto-immune disease. My brother Jacob has Transverse Mylitis - got it when he was 12, and it paralysed him from the chest down, he's had it for almost 10 years now. And my Grandps had Gieon Berre (sp?) when he fought in Korea - another auto-immune disease that caused paralysis, but he recovered. Everybody else just has bad joints.

What about other members of your family? Is it just your bro? I know when Jake got sick with TM, I was 18, and found it incredibly theraputic to go to TM forums and ask questions, or just read about what others were going through. So let me know if you have questions about what your bro might be going through. It's a strange disease, because people suffer from it so differently, and it's hard for those who don't have it to understand the amount of pain. Sometimes I wonder if I'm being a wuss, then I read what others go through - sometimes worse than me, sometimes better... but it helps me realize that it's ok when I know I'm having a flare-up and I need to cool it - and that I'm not being a wuss...

Hope all is well - sorry it took me a few days to respond...

 - JJ

hey JJ,

Thats ok that it took a few days to write back, i'm sorry for the same here. Wow i am really sorry that all those arthritis run through your family, and i really feel for your brother. that must be real hard for you to deal with.

talk to you soon -B-

HELLO I AM NEW TO THIS GROUP I HAVE AS AND HAD IT FOR YEARS WITH OUT KNOWING WHAT WAS CAUSING ALL MY PAIN.WHEN IT STARTED IT WAS MY THIGHS WOULD BURN SERVE.I FINALY WENT TO THE DR AND SHE FOUND NOTHING.WHILE ALL THIS IS GOING ON I STOP DOING ALL KINDS OF THING AND MY WEIGHT STARTS MOVING UP THE SCALE.IN 2002 I FOUND A DR WHO SAW THE PAIN I WAS IN AND SENT ME FOR THE FIRST OF MY MRI.I HAVE BEEN ON MANY DIFFERENT KINDS OF PAIN MED AND WE KEEP MOVING UP TO THE STRONGER ONES NOW.I HAVE HAD 2 SPINE SURGERYS ON MY CERVICAL AND THORSIC SPINE .THAT WAS JUST MY INTRO GLAD TO FIND THIS GROUP.

My name is Laura and my 16 yr old daughter has just been told that she has AS and we are trying to find a dr to take her too.  The doctor that found this wants us to take her to a pediatric rheumatologist.  This has been hard to find because of my insurance.  Do you know of a reason why she can't see a normal rheumatologist?  Dr Kenney out of Joplin is a rheumatologist and he is the dr telling me this.

I need help>

I imagine he recommended a pediatric rd because of the fact that a child at that age is still growing which can affect a lot especially in the spine. I'm just guessing...but I feel like it's a good one.

If a Ped. RD isn't possible for you due to insurance reasons I would suggest calling around to different RD's in your area that do accept your insurance. Tell them your situation. They may actually have someone on staff that has experience with younger patience. These diseases can be very, very expensive in the long term. I can understand your concerns.

I wish you and your daughter the best of luck in your search....and I hope that your daughters prognosis is a good one.

Welcome again,

Lovie

Copyright ArthritisInsight.com