Ankylosing Spondylitis

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Greenman145
New Member


Date Joined Feb 2005
Total Posts : 7
   Posted 9/8/2006 6:03 PM (GMT -7)   
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 

Ducky
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Date Joined Mar 2005
Total Posts : 3199
   Posted 9/9/2006 8:57 AM (GMT -7)   
Hey Greenman... welcome to healing well... sorry to hear about your diagnoses, but your in good hands here at this site... what types of meds did the rheumy reccomend? Did he mention Enbrel?
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea

curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 9/9/2006 3:29 PM (GMT -7)   
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.
Thanks
Curley......
a.k.a.Mela...........


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 9/9/2006 4:26 PM (GMT -7)   
I have AS and get Remicade infusions every 6 weeks for it. It has helped alot though I am not 100%. The shot your doctor mentioned was likely Enbrel or Humira. They are both biologics, as is Remicade. Prior to Remicade, I needed 2 canes or a walker to ambulate. It was thought I was going to end up in a wheelchair. I only need a cane occasionally to walk. Mt rheumy told me I would never have a day without pain, but it at least is at a tolerable level now. Welcome - how you get some relief soon!
Ides
CD, Ankylosing Spondylitis, peripheral neuropathy
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Greenman145
New Member


Date Joined Feb 2005
Total Posts : 7
   Posted 9/9/2006 5:47 PM (GMT -7)   
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.

seechell
Regular Member


Date Joined Sep 2006
Total Posts : 362
   Posted 9/13/2006 10:42 PM (GMT -7)   

Hi-

I'm new here, just found the site and am posting here and on the migraine board. I'm 38 and have ankylosing spondylitis also. Mine isn't anywhere near as severe as yours sounds but I can relate a bit. I don't know if I'm in the early stages or it's not progressing very fast. It hurts to lay on my hips at all, my left more so than my right. The pressure feels like needles (or screwdrivers) are being jammed into them. I also have the same pain in my lower back on my sacroiliac joints. I have a hard time sleeping. I was on methotrexate for a while but took myself off because I couldn't afford the copay for bloodwork every 6 weeks and my neurologist at the time thought it might be contributing to my headaches/migraines. I'm taking 3-325mg aspirin twice a day and Celebrex, that's it. When I go back in October I'm sure we'll talk about other options as my x-rays revealed a slight worsening. I don't want it to get any worse. My grandma had RA and was in pain all the time. She was such a trooper, up every morning at 5 and doing stretches and taking codliver oil, yuck. Her hands and feet were so mishapen, knowing what I do now, I really don't know how she did it. She was a talented piano player but wouldn't play often because she couldn't stretch her fingers out far enough for some of the chords. She also crocheted and taught me how. She hated her hands. I used to tell her how pretty I thought they were. I wanted my hands to look like hers. I loved her hands.

Sorry, got carried away there for a minute. I hope things get better and you can find something to take that will help ease your pain.   


Kuv
Regular Member


Date Joined Oct 2006
Total Posts : 29
   Posted 10/11/2006 2:32 AM (GMT -7)   
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.

Greenman145
New Member


Date Joined Feb 2005
Total Posts : 7
   Posted 10/23/2006 6:43 PM (GMT -7)   
Hello,

Thank you SEECHELL & KUV. Sorry to hear that ya'll are having the same problems. Reading on the web, we are one of the lucky .1% of the population who have this(lol). Well, I went to the rheumatologist Friday, and he wants to start me on Enbrel shots (50mg once a week, he says). Of course, we read all the "warnings" on the internet, and my wife is freaking out! She thinks the doctor is over-reacting, especially considering that I suffer with the pain in my hips about every 6 months. She is really worrying about the risks vs. the benefits of the medicine. (Lymphoma, MS, sepsis, death......) I know the shots are very expensive, but supposedly the drug company will pick up what my insurance does not, so I suppose $ is not really the issue here, but rather is it worth it? The doctor asked me if the NSAI's helped, but it is hard for me to tell, because I am not having a "pain episode" at the moment. Does anyone else take Enbrel? Thanks in advance for any opinions.

Greenman confused

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 10/23/2006 7:49 PM (GMT -7)   
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.
CD, Ankylosing Spondylitis, peripheral neuropathy
Please help support this forum. http://www.healingwell.com/donate/ 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 10/24/2006 7:53 AM (GMT -7)   
hey Greenman,
just to add, Enbrel works fantastic in helping the AS. also, when a bad AS spasm would come, i have to down a Valium which usual breaks the spasms. the AS got a little worse when i went on to Humira...but i'm on remicade now...so we'll see.
much luck!
Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures. MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions; Intra-articular knee injections; Imuran; Mesalamine; Prednisone; Meclizine; Reglan; LidoDerm; Diazepam; Restaril; Dilaudid; Avinza and too many others. 


lyne
New Member


Date Joined Dec 2007
Total Posts : 1
   Posted 12/16/2007 11:40 AM (GMT -7)   
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?

Aroseinthesnow
New Member


Date Joined Jan 2008
Total Posts : 2
   Posted 1/20/2008 5:10 PM (GMT -7)   
I was diagnosed with AS a week ago after 17 years of suffering and a multitude of other diagnosis's thru the years. I have hip degeneration with fusion in the T-level of my spine. Dr. started me on Prednisone shots and methotrexate, also zanaflex to help stop the spasms. I am glad to finally have a name to my suffering and hope that it can be controlled to lessen the pain levels, and maybe even walk somewhat normally again. I am glad I came across this site so that at least I know that I am not alone in the boat that life has given me to row !! Please also know that YOU are not alone either.

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 1/20/2008 5:17 PM (GMT -7)   
Welcome to the forum Aroseinthesnow.. very beautiful name by the way.. am looking forward to reading more of your posts on the forum!
Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs/Migraines/Hypertension
Current Meds -  Enbrel/Prilosec/Synthroid/Nitrofurantoin/Midrin/HYZAAR
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 1/20/2008 11:28 PM (GMT -7)   
I second that welcome to you Aroseinthesnow! I know exactly what you mean when you say you are glad to have a name for your suffering! I was happy too to be able to name "IT"!
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 1/21/2008 3:15 PM (GMT -7)   
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.

Aroseinthesnow
New Member


Date Joined Jan 2008
Total Posts : 2
   Posted 1/21/2008 9:08 PM (GMT -7)   
Thanks for the welcome Ducky & Ides. I look forward to exploring my new world so to speak....would'nt it be lovely if we could just like eat grapes or something to make this stop...lol Oh well, a girl can dream can't she??
Anklyosing Spondylitis, OA in feet- hands- shoulders-hips-spine, IBS, chronic sinusitis, severe allergies, Degenerative Disc Disease, oh yeah, and FYI chocolate is too a food group!


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 1/21/2008 9:21 PM (GMT -7)   
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!
Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs/Migraines/Hypertension
Current Meds -  Enbrel/Prilosec/Synthroid/Nitrofurantoin/Midrin/HYZAAR
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


Stanley Ipkiss
New Member


Date Joined Jul 2007
Total Posts : 6
   Posted 1/22/2008 11:21 AM (GMT -7)   
Hey Greenman, Welcome, good luck, and I hope you have a good Rheumatologist, wherever you are.

I'm 37 as well, but I've known about my AS since I was 5, i.e. my Dad and brother have it. I did all the NSAID's, prednisone etc. and finally went on Remicade 6 months ago.

I can't explain it, but with the Remicade I can now flex my back, i.e. I can see the arch in my back when I bend down to tie my shoes, pick up things from the ground etc., which I couldn't before. I can actually feel movement in my hips. I don't think they were fused to begin with, but X-rays showed marked narrowing before.

May not be typical but I am very impressed, and excited. Heck, just not too long ago, I'd dread having to pick up the tennis ball for the dog from the floor. It used to be this laborious process of line up correctly, bend the knees and tilt just enough, and then stretch either arm, grab the ball and push with the calves and thighs to get back up.
Now... I don't even think about it.

So yeah, read up on everything you can, and there's another forum for AS as well:
 

And, while my wife doesn't always agree with me, my personal mantra is: Do whatever I can to alleviate the pain. I personally don't believe AS is something that I can walk off, walking off has only made it worse, I've tried it myself :) I'm all for improved quality of life immediately!
 
 
***Note from Mod*** I didn't change anything, just made your link 'clickable.. Thanks!

Post Edited By Moderator (Ducky) : 1/22/2008 5:06:29 PM (GMT-7)


Really? I'm not crazy?
New Member


Date Joined Aug 2008
Total Posts : 1
   Posted 8/6/2008 5:07 PM (GMT -7)   
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.

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 8/8/2008 5:33 AM (GMT -7)   
Hey there.. welcome to the forum.. sorry it has to be under these conditions.. I'm glad you are finally starting to undergo treatment.. as you already know, it only gets worse with time if left untreated..

There are quite a few of us here that have AS or similiar diseases.. come here anytime to chat, vent or share a laugh or two.. we're a crazy bunch, but we give each other the support we all so desperately need..

good luck to you, and I'm looking forward to seeing more of your posts in the future!

Duck
Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs/Migraines/Hypertension
Current Meds -  Enbrel/Prilosec/Synthroid/Nitrofurantoin/Midrin/HYZAAR/Methotrexate
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots/HCTZ


malyk
New Member


Date Joined Jan 2009
Total Posts : 2
   Posted 1/30/2009 9:38 AM (GMT -7)   
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.

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 1/30/2009 6:22 PM (GMT -7)   
Welcome to Healing Well, Malyk! Is the difficulty talking to your wife come from her not understanding, listening or something else? My husband was wonderfully understanding. Since his death 2.5 years ago I haven't really been able to discuss the impact that AS has on me from day-to-day. Most people simply can't comprehend the impact it has. I think my husband got it because he could see the difficulties firsthand 24/7. Looking forward to hearing more from you, malyk!
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


malyk
New Member


Date Joined Jan 2009
Total Posts : 2
   Posted 1/30/2009 9:22 PM (GMT -7)   
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.

What doesn't kill you, makes your insurance premiums go up...


merlinman
New Member


Date Joined Feb 2009
Total Posts : 1
   Posted 2/6/2009 3:01 PM (GMT -7)   
Hi, I'm brand-new to this forum and to this subject. I've been half-disabled for 14 months with what was diagnosed as plantar fasciitis and back trouble -- but finally went to a rhematologist who diagnosed Undifferentiated Spondyloarthritis (still having trouble spelling it). When I looked it up, all the tumblers clicked into place at last -- the fatigure, butt pain, SI agony, barely being able to walk for more than 15 minutes, being told I was imagining things -- AND CAN'T WAIT TO START TREATMENT! (Was diagnosed yesterday.) She recommended Enbrel, because I'm a wine-lover, and she said methotrexate might not be great for my liver. Opinions? Encouragement? It's been a dark, pain-wracked and frustrating year, and I'm just relieved now to know that I'm not crazy.

bad genes
New Member


Date Joined Feb 2009
Total Posts : 4
   Posted 2/21/2009 11:44 PM (GMT -7)   
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
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