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Ankylosing Spondylitis

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Posted 2/24/2009 4:57 AM (GMT 0)
I have taken the shots Embrel and with that methotriax and sulfizine   and unfornately the side affects did me in.  I was so bad I was in a wheel chair and so that is why they put me on all three.  Now I had to try alternative meds.  because I can not do the pharm medication.  My kidneys and stomach could not handle it.  But the Pharm Meds worked but I did not want to end up on dialysis. I have extream bone pain now bad winter.  I was doing real good on my natural meds.  but I ran out and I feel  so much pain and that is with heavy pain meds. 

the bone ache is so bad is eats at my nerves.  constant intense ache.  I must get back on the natural  stuff. I take high  does of sea veg and I mean High during flair up and then I also take Flex Protex.  If it was not for these products I would of been stuck in a wheel chair and That is not easy I live in a tri level.  I have arthritis and lupus. poss that ankylosing arthritis.  I also have children with it.  I never thought life was going to be filled with so much suffering.  I cant wait for heaven.  Good luck with the shots they work but I hope you have NO side effects  Some people say the shots hurt. But they did not me I was on a high dose to they say the fifty mg hurts more that the twenty five twice a week but the fifty did not hurt me pain wise anyway.  Good luck.  Hope your quality of life improves.\

 

Posted 6/25/2009 3:58 AM (GMT 0)
I'm a new member to the forum. I was diagnosed four years ago with AS and fybro, and also have had migraines for forty years. I have tried various treatments including methotrexate, Enbrel, Humira, etc. I'm allergic to numerous medications and so am very limited on the types of treatment available. I've been using Remicade every 6 weeks for a total of eight infusions. The maximum dose for me is 600 mgs, but my doctors have bumped it up to 700 the past two times and want to keep it there for another two treatments. Has anyone NOT had success with Remicade?
Posted 12/4/2009 11:52 AM (GMT 0)
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 blood work 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.

*Edited due to the breach of forum rule #5*

Post Edited By Moderator (SydneyJo) : 12/4/2009 2:57:03 PM (GMT-7)

Posted 1/15/2010 1:49 AM (GMT 0)
Hey I am kinda new to forums but anyway I am 37. I have had ankylosing since I was in 7th grade and have been misdiagnosed since. I tested positive for it in Oct of 2009. Im not impressed with my rheumy. He has me on Feldeen and tylenol. I honestly dont know what to try. I am getting ready to get into yoga to see if that helps any. Right now I am in Charleston, WV but am planning on moving to Missoula, Mt this summer.
I have read that a no starch diet helps dramatically so if any of you have tried one and it works please let me know.
Posted 1/21/2010 10:58 PM (GMT 0)
So sorry to hear that all of you are suffering like this... it is sad to hear your children are hurting too. You just want to take all their pain away!! :cry
I wish there was something i could do or say to make it all go away for you. It just isn't fair!! But at least you have a place where you can let it all out~~ and scream, and shout out all of your aggressions!!! Yeah!!! :-)

Please keep in touch here... there are so many people here that can help!! Don't give up!! Just know there's someone here thinking about you!!! (((((((((((hug)))))))))))) Here's a big hug for you!!! God bless!!!! Laura :-)
Posted 8/15/2010 10:08 AM (GMT 0)

new member here- looks like a great sighi tested positive for hla-b27 gene and my remmy is not sure if i have as or not but the pain is indescribable

can anyone help with the following ?

what about these starch free diets i have been reading about

how much does it cost out of pocket for enbrel-humira,etc.

other drs. i have been too {not rheumatologists} say i don't have as so i am in limbo

i started feeling bad after i had  two cervical fusion surgeries and it has been downhill ever since

thanks in advance

Posted 8/15/2010 10:10 AM (GMT 0)
sorry about my spelling
Posted 8/17/2010 3:56 AM (GMT 0)
timc - Welcome to Healing Well! My suggestion is to start a new thread so that your questions are not lost in an old thread. That said -

I have ankylosing spondylitis. I do not prescribe to the nop starch theory regarding this disease. It may work, but not having tried it, I don't know.
The cost for Humira, Enbrel, Simponi, Remicade, depends entirely on you insurance policy coverage. I have good coverage and paid $9.00 for a month's supply of Humira. However, I know another person that had to pay $400.00 per month for theirs. You need to check your coverage.

I am sorry that you are having so many problems without a name for the cause. While it is no picnic having AS, at least knowing the problem means a plan can be made to treat it. I hope you get answers soon!
Posted 1/19/2011 11:10 PM (GMT 0)

Is there a newer AS thread I can ask questions on? 

This one looks a little stale. 

I have been a member of this site for Chronic Pain for a while and I have been diagnosed with AS for 4 years now.

I had Sciatica and messed up disks in my lower back and is what got me into pain management in the first place. 

Now I am taking Enbrel injections once a week. 

I will start my third week tomorrow. 

I was in the middle of a flare up that had lasted for three months with no relief in sight. 

Now I just want to meet others that are close to my age and have the same disease as I do.

I hope to see this thread get some new life in it but if there is a newer thread then just let me know and I will use that one to post on.

Thanks everyone.

Post Edited (MindMltn) : 1/19/2011 4:15:05 PM (GMT-7)

Posted 1/24/2011 4:59 AM (GMT 0)
I am 35 and was just told by my rheumy that he believes i have early signs of ankylosing spondylitis or at least some type of spondyloarthropathy...going to talk about all this in next visit on February 11th.

How old are ya?

Sha
Posted 1/24/2011 1:41 PM (GMT 0)
Hi Greenman,

I can only tell you that my friend's daughter has AS and she was doing o.k. on Enbrel but then began having frequent bouts of Iritis.  she now has the Remicade transfusions and is doing wonderfully.   She jogs, holds down a job and cares for three children.

I have psoriatic arthritis and am on Humira once a week.  It was a miracle at first but think it's not doing it's thing anymore.  

Good luck,

Alicat

Posted 4/16/2011 2:59 AM (GMT 0)
Hello all! I'm new here also. I was diagnosed with Rheumatoid Arthritis and Ankylosing Spondylitis in November 2008, I was 25. Years before that I was consistently complaining about my lower back hurting, and everyone I knew kept telling me I was too young for back problems. Well a few years later my when I was diagnosed my x-rays showed that my coccyx is fused to my pelvis and my C3 and C4 were fusing causing my C5 to bulge. My rheumatologist put me on 40mg of Humira every other week. It did helped a bunch with the pain on days where there were no storms, but I was always catching colds and respiratory infections at first. At the end of 2009 I had enough of being sick, started to feel run down, and still in pain everyday; I did my own research on AS and found out certain foods feed AS and where others help reduce inflammation in the body.

In Janurary of 2010 I started my new diet and by February I started to really feel better. Then in June my doctor was okay with me wanting to reduce my medicine because my blood work came back excellent! I was amazed! So I kept on the lactose free and starch free diet and just this February I was able to reduce my dosage again! Taking Humira every 3rd week now. I'm still pain free and I've not been sick.

My end goal is to be completely medicine free. I have a ways to go but I believe I can do. This way of eating helped a client of mine who has Rheumatoid Arthritis. Her doctor wanted to up her medicine (Enbrel and Methotrexate) and she really didn't want to so she asked me what I was doing to lower my medicine. I told her and the next doctor's appointment she had her blood work came back good. She was thrilled and so was I.


youllbefit.com/my_story.htm
Posted 7/31/2011 3:53 PM (GMT 0)
I too have severe ankylosing Spondylitis which has progressed to my whole body bar hands and feet..

My problem is trying to explain to people exactly what it is.. When I mention the words 'ankylosing Spondyliti's they have no idea what im talking about and sometimes i wish it was called MS or arthritis so people would know immedietly what my problem-disability is.

I strated telling people it was called Riger-more-arthritic-itis which gives a better meaning-explanition as to this disease..

I am awaiting a hip replacement which I will not end up having and have been offered Embrel injections which I will not have because it makes you prone to sever infections so I will continue to grin and bare it..

I would like to know when you {hi all} have to explain to someone in an analagy kinda way what AS exactly is, what do you say!?
Posted 7/31/2011 7:20 PM (GMT 0)
Say "I have a type of arthritis where the joints in my body are fusing together".
Posted 7/31/2011 10:35 PM (GMT 0)
Hey Welcome

Yes I also have this disease, can't say it's a lovable condition though. Have had gastritis from celebrex twice now and just recently had tests done for my poor chest expansion. I was diagnosed about 3 maybe 4 years back now, my back and shoulders are already starting to stoop. Let's just hope there is safe cosmetic treatment for this, I'll be lucky to have a partial straight spine by the time I am 30 years old.
Good to see so many responses with this condition, just nice to not be alone with it.
Posted 8/2/2011 2:47 PM (GMT 0)
I have gotten tired of the "arthritis, so what"-type responses, and I am a very private person anyway, so I just mumble something about my condition, my disease, my ailment, my health problem, whatever -- instead of trying to explain what reactive arthritis is.

My cat has AS -- we were just referring to it as a degenerative spinal disease since we don't know how to pronounce it anyway.

-- MK
Posted 12/23/2011 11:30 AM (GMT 0)
After a few years of saying the AS name and getting weird looks, I just tell people "I have arthritis in my spine" -- they seem to get it.

I encourage you all to try a low-starch diet for a few weeks to see what happens. Eliminate all refined flours, such as bread, pasta, etc. Keep other simple starches such as potatoes and rice to a minimum. I've done this on and off and over the past year, my pain and stiffness have been on and off in tandem. Now I really do believe there is a connection, there's just no drug company willing to pay for a study on diet. Sad but true.

Another thing that helps is napping on your stomach or 'lying prone' when you are tired. Takes pressure off the sac joint and helps keep your back from bending forward.
Posted 12/23/2011 3:54 PM (GMT 0)
Welcome to Healing well Pac Man. Its good to see new people posting their ideas and suggestions here but the thread that you responded to was started almost 6 years ago and hasnt had any new responses since early August.

Maybe, if you would like, you could start a new post and introduce yourself to us. We would like to get to know you better and hear more from you.

This forum is moving slow right now but I would very much like to get it up and running. Hope to hear from you soon,
Posted 4/13/2012 1:36 AM (GMT 0)
I have been in the same pain for 8 months now. I now know I have AS after spending 8 years being misdiagnosed with sciatica and SI Dysfunction and the pain used to only last a few days or a week then it lasted a month until the last attack that hasn't let up. I tried the Chiropractor-for 8 visits of adjustments, massage,physical therapy and acupuncture and no relief. Then I went to a rheumatologist in Dec. and he did an x-ray and then I found out I that I have AS.   I have extreme hip pain and stiffness, the genetic marker-HLA-B 27 and Ulcerative Colitis/ Crohn's Disease and had flare-ups of Uveitis (eye inflammation)-among other symthoms of AS. I got a steroid shot and it initially helped a little, but wore off after 6 days and the pain came back worse. I am taking muscle relaxers and Motrin-which has been terrible on my GI tract and I still experience the pain and stiffness. I now walk with a limp from the pain and feel like I need a cane,so I don't fall.I also have pains in the front and back of my legs. I am awaiting insurance approval for Remicade infusions-which I do not want to do and have been putting off because of the warnings-can anyone share their experience using Remicade?I just know I can't continue dealing with this pain-I need some relief and I can't continue on the NSAIDS because of the damage they are doing on my intestines. Any other advice to manage the pain/stiffness?I did find that reducing starchy food  and sugar helps.
Posted 4/20/2012 9:07 PM (GMT 0)
I am a new member. 62 years old. I was diagnosed with AS in 1975. Symptoms began in my mid-teens. First symptoms were hip pain (which caused groin muscle pulls when forced to participate in running sports). My mother found me, quite often, sleeping on the kitchen floor under the table (so no one would step on me) because it seemed to ease the discomfort enough to sleep. As I child I was always admonished for not "standing up straight". I joined the Navy at 18 and barely made it through Boot Camp (my attempts to avoid some marching and running were viewed as "goldbricking"). I began to experience low back pain in about 1970. Navy doctors assumed I was just trying to get a medical discharge - I wasn't. I just wanted some relief. I spent the next 4 years attempting to find out what was wrong (the Navy was very unhelpful) and I was taking between 12 and 20 aspirin a day to manage the pain. After I was honorably discharged in 1974, I went to the local VA hospital where I was properly diagnosed with AS (HLA-B27 positive). I have been through almost every oral medication there is: phenylbutazone (no longer given to humans) which worked fairly well, naprocin, ibuprofen, indomethacin, indomethacin SR, diclofenac, clinoril and a couple of others I can't recall. As the efficacy of each medication began to wane....I would ask for another. Eventually (about 7 years ago) my rheumatologist suggested Enbrel (etanercept). I consider Enbrel to be a miracle drug!!! After more than 30 years of spending almost every waking hour in pain or, at the very least, experiencing moderate discomfort I am now 99% pain free. I stand up much, much straighter and I can sleep for more than 10 minutes without waking up to find another comfortable position. Family and friends have told me that the change is amazing. I think so, too. While Enbrel may not work for everyone.....I certainly recommend a trial if you have tried everything else.
Posted 4/20/2012 9:38 PM (GMT 0)

I am so glad that Enbrel is working so well for you.  Unfortunately I had an injection cite reaction from the preservatives used in Enbrel.  That's when I was put on Humira, which was a miracle drug for me for about three years but then stopped working.    I've been off of it for a year so my rheumy thought it was worth a shot to try it again.  Have only had two injections so far but have had to take prednisone too as it either isn't going to work again or hasn't kicked in yet.   She said to take an injection once a week for a month and then I see her again.   I'm surprised that the Enbrel is still working for you after 7 years.    I've had reactions to Enbrel, Celebrex, remicade and cimzia just didn't work for me.    Hoping the Humira will start wokring again for awhile as I think they are running out of things to try.  I think the next drug will be Orencia.   I hate trying the new drugs as I'm always afraid of the side effects but when the flares get bad enough I'll try anything.

I wish you continued success with the Enbrel

Alicat :-)

Posted 4/21/2012 1:37 AM (GMT 0)
Thanks, Alicat.  I take Enbrel twicwe per week.  25mg each injection.  When I tried the 50mg once per week, it was not as effective.....it peaked too soon and I would experience discomfort after about 3 or 4 days.  I think the 25mg twice a week keeps the Enbrel at a more consistent level.  Sorry to hear about your issues with Enbrel and Humira.  I know it is miserable to only get limited relief from the other medications.  I did that for 30 years.  Most people I know would call in sick every day if they woke up the way I used to feel in the morning.  Like most chronic illnesses.....if you don'thave it it is difficult to understand what it is like.  I know prednisone is not a good thing for long term use.....I hope you find something that works for you.
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