Ankylosing Spondylitis

So...A new member here to the arthritis forum. Went to see a Rheumatologist today and found out I have AS. Gave some blood and had about 20 x-rays done. He showed me on my x-rays from a month ago that my lower spine has already fused to my hip bone (sacroiliac joint area) and it is already moving up my lower spine. I was just wondering if anyone else here has this and what medicines work for you, if they seem to work at all. He also mentioned starting me on shots (after all the results get back) and I was wondering if these were effective as well and what side effects I can start looking forward to.

Thanks for any advice,

Greenman145 

Welcome Greenman,I'm like Ducky as fare as what meds are you on?I have AS and I'm on Sulfazine 500mg three times daily as well I take Humira and I'm on Plaqunile as well.I'am just naming some of the meds that I'am on.I as well have RA & OA as well.Please do let us know what meds that you on we can answer alot of questions for you by you doing this.I'am truely sorry that you have A.S.

Hello all...and thank you for the replies. Right now, all the rheumy has prescribed me is Indocin Sr. He said it was an old drug that is harsh on the stomach, but that since I'm young (37) I shouldn't have any probs with it. By the way, I've had the severe pains (off and on) since I was about 18-19, just never went to a doc to see what it was until now. Both my rhuemy and regular doc told my that I will be getting hip replacements (both) way later in the future. As far as any other medicines that he mentioned....it was only the shots, 3 different ones he named but I can't remember them.

well Greenman, welcome to the club. I am a female. My A.S. symptoms first showed up when I was 16 after a nasty broomball hit. Didn't get diagnosed till I was 21 (not for lack of trying) but because I am a girl and was so young they never even checked. I spent those years in total and complete agony and many times not able to walk or get out of bed until noon (after highschool). I had been in remission for about 10 years with only intermittant anti-inflams until my car accident 2 years ago. My sac joints are now fused and it's moving. Don't be surprised if you have to try different meds. I have to keep switching anti-inflams because I get tolerant of them. I can't have any of the steroids or remicade. The other wonderful thing I discovered is a really well educated massage therapist and hot baths when the pain refuses to go away. I have crohn's with my AS as well. I'm 40 now and still learning what works and what doesn't. It's a journey that's for sure. Good luck to you.

I get Remicade infusions for my AS. It is an anti-TNF biologic drug like Enbrel. Remicade is given by IV instead of injection. I went from needing two canes to walk prior to Remicade to being almost entirely without ambulating issues. For me it was definitely worth it. I also was having issues with my tendons calcifying due to the inflammation from AS disease activity. The Remicade has really kept the tendons from flaring like they used to. Taking a biologic like Enbrel is something one must understand, weigh the pros and cons, and make their own personal decision.

I have AS and I have been on Remicade for 7 months now.  After the first 2 doses, the doctor increased the dose to 300mg.  It only lasts between 2 - 3 weeks and then I have to wait until the next infusion ( 6 weeks intervals).  Now I have more joint pain than ever.  I have severe pain in my collarbone, shoulders, wrists, elbows, knees, ankles, feet and fingers.  Rheum said that this is not uncommon. I am beginning to wonder if I have another type of arthritis because my spine is really never sore although I do have fusion in my SI joints.  I am so tired and I find it really hard to function.  Does anyone else experience these symptoms?

Welcome to the forum Aroseinthesnow.. very beautiful name by the way.. am looking forward to reading more of your posts on the forum!

Greenman,
I agree with the others that only you and your doctor can decide on your treatment but one factor you should keep in mind when deciding is that the biologics aren't about treating pain now but about preventing damage that can cause more pain later. There are posts on this site about each specific drug where you will read the best and the worst results.

ha! We had a thread like that in the past.. it was about pickle juice.. tee hee hee.. we'll all drink pickle juice.. eat grapes and be merry! tee hee hee! LOL.. Ok.. I'm delirious from lack of sleep!

I am a new member here as I just saw my rheumatologist today. I am 37 and was diagnosed with AS. I have 2 sisters. One also has AS and the other is HLA-B27 positive also. Both my sisters and my mother have had neck surgery. The doctor I saw today told me that it was good that I hadn't followed suit. I have spent 2 years in pain. Going from Dr to Dr. I swear most thought I was crazy. I thought I was crazy. I look like a picture of perfect health. I had a neurologist tell me that I had a "36 year old neck" last year. After hearing that, I found a new neurologist that contacted the previous neurologist and said the same thing. I finally found a wonderful neurosurgeon that told me that he could do surgery on my neck as I have 3 disc herniations, but did not believe this was the true cause of my pain. My health insurance will not pay for anymore physical therapy this year. I have been on short term and now long term disability from work since January. It hurts to sit, stand, lie down and walk. I am going to start Enbrel injections. I m praying that it works well. I want some type of normalcy back into my life. I miss my old life. My rheumatologist told me that there were people online that share this very same disease process with me and felt that it would be emotionally helpful to chat on one of these forums. I am usually the person that pokes fun at the Mom's that post on forums. Now, here I am. Looking for a little support from one. Funny how things work out.

Hello, I'm new here, just found this place. It's nice to talk to people who know what I'm going through.  I'm 33, and it's hard to talk to my wife about this.  I know she loves me, but she can't relate to how I'm feeling. As far as meds go, I just got off prednisone, thank god, but currently on sulfazine, and remicade as well.

She understands, because she get to watch it as well.  It is mostly because both she and my parents can't relate to how I feel.  It isn't just the physical pain, it's also the emotional pain.  I take more meds than my parents, her, and her parents combined. I have a n RA specialist, as well as a migraine specialist, and a specialist for my colitis.  The poor thing has to go with me to all my doctors, as well as take care of me.  My daughter is only 8, but act as though she is 30 growing up with me.  The worst thing for me is seeing how this affects all those around me.

HI

I  have Lupus and Arthritis and I found out what could be worse than that. having two daughters with sever back pain.  I hurt all the time but it kills me to watch them suffer.  My one daughter has had three back surgeries by age 13 for scoliosis.now she is  20  She has spent most her life in bed suffering in extream pain.  She lives on heavy med.  just to get thru the day.  and then my nine year old in October starting having sever pain in her back.  No real deff. answers yet but I think I  am getting Close

My nine year old has multi. diseases.  Scoliosis, spina Bifida occult, and recently a Mri showed inflamition in her joints in her back.  She also has Cushing syndrome and still  waiting for teatment for that.  Cushing was caused by steriod use from asthma.  So the back pain is real out of controll heavy meds dont touch it unless used in IV.  Mornings, and Car rides and activity makes this back pain so bad she screams shakes and you can just see the pain in her eyes.  I suppect she has arthritis in her spine.  she was dianoised with Ibs  about three months ago.  For as long as I can remember her neck locks up and she cant turn it and then she cant lift her arms. Me and her used to go from Michigan to Tennessee once a month to help take care of my very sick mom.. She has arthritis and is on dialysis and has heart problem and copd.  My father has lupus and arthrits. so I guess I came by it naturaly.  My other two children had positive anas by 5 so why am I so surprised.. she was   Happy and getting around great. now she is depressed.  Then one day after being sick  her back started hurting so bad even going to the party store kills her vibration and bumps causes so much pain.  She did not have perfect health she is asthmatic and had stomach problems ibs. scoliosis and spina bifida occult.

In one year she had her tonsils out her apendix and her gualbladder.  Seven  months later after all the surgeries she started with the  back  pain.  She has sometimes weakness in her legs.   Iam now going to get a ped. reme. on board..  I personally have been on the methotriax and emberal and some  others, sure they helped but they unfornately caused kidney problems and stomach problems for me so now I have to use other things.  I am not willing nor ready to watch another daughter suffer with this unbelieveable  pain.  She is only nine and I am so sick of diseases that are in the family popping up with my kids. All my girls have seizures that they got from their dads side. I cant beleieve now they found inflamation in her spine. I thought the scoliosis and spina bifida was enough for her spine she did not need this. Does car rides make any of your pain in your back worse? I Just wondered if anyones else has problems in cars. It makes her pain skyrocket. sincerely one tired mom with bad

genes