Ankylosing Spondylitis anyone?

Hi Everyone!
I am not new to Healing Well forum, but new to the OA chat/blog etc. I have had OA for a few years now. I am now 34. It's such a severe
case that Dr's are baffled by how bad it is for my age.
I was also recently diagnosed with Ankylosing Spondylitis. I don't see any forums/chats/blogs about that, but it is a rheumatic condition & I was
wondering if anyone else on the OA board was familiar with it. If so, PLEASE let me know!!!
Thanks so much!!!
Happy New year.
Julie

Post Edited By Moderator (stkitt) : 1/3/2012 3:48:38 PM (GMT-7)

Julie,

Just today I replied to someone else asking about Ankylosing Spondylitis. You can read what I wrote here: https://www.healingwell.com/community/default.aspx?f=17&m=2303452

I have osteoarthritis. Then some years back I was diagnosed with spondyloarthropathy and then ankylosing spondylitis when it was discovered that I had lots of spinal involvement.

I am sorry that you are having problems. What sort of information are you looking to get? While there is not a specific AS forum here, we have quite a few people with it that communicate here or in the rheumatoid arthritis forum. Also, for great info on AS check out the Spondylitis Association of America site. There is much info there about AS and the treatments for it. What treatment is your rheumatologist proposing for your AS?

Be well....Ides

I wanted to thank each and every one of you for all your help and information!!!!!!!!!! I found such comfort just knowing there were people out there to talk to. :) Any and all information on AS is helpful. So, thank you!

I'm a new member but have been diagnosed with AS about 6 months ago. I'm not totally sure if I believe that's what it really is that's bothering me but I was given Meloxicam, which didn't really do that much for me. My main symptoms are neck and lower back pain, shoulder pain, weak muscles, shooting pains down my back to my thigh, constant cracking and creeking in my joints. I've also tried ultram, hydrocodone, and ibuprofen of which the hydrocodone helped a little. I think that my taking large amounts of NSAIDS has given me stomach problems on top of it which baffles me because my doctors are more afraid of prescribing me something stronger when acetaminophen is more toxic than even oxycodone or morphine. Anyways, I'm sure none of this is anything new but I just thought I'd share my two cents. Good luck to all of you.

Hi everyone!
I haven't tried Remicade or anything else for AS. I cannot take any type of NSAID due to my stomach issues ( Crohns disease).
Those types of medications rip my stomach to shreds!!!
So, I can't really shed too much light on these medications. I wish I could.......

Let me know though (anyone out there) if these medications work! Good luck :)

Hi,
I'm now to blog period. But after hearing about AS, I just want to share my own comment as I am also dx with AS and have done blood test, positive for HLA B27 gene.

I am seeing an AS specialist at Mount Sinai Hospital in Toronto and have tried the following meds:
- APO-Indomethacin - worked well in controlling pain
- Prednisone - worked well in controlling pain but not allowed to take too much or for too long period of time
- currently on Sulfasalazine and APO-Sulin, which in my opinion has less affect than Indomethacin combined with Prednisone.

I was also recommended to use a biologic agent such as Etanercept Infliximab (needles / shots once every 1 or 2 weeks over a year. if it works, continue). Doctors claim that they have good success with their patients. However, this treatment is extremely expensive (e.g. $20,000 / yr). Even with insurance coverage, i still need to pay around 20%. So, before going this route, I am trying to find other ways to manage my pain.

Currently, I am reading up on shark cartilage and Glucosamine. Anyone have any success with it?

My current situation is:
- back and lower back pain
- stiffness in the morning; i try to do stretches every evening and morning, which helps a lot
- pain in shoulder
- pain in fingers
- pain in feet and hip

I am currently 30 and I used to play a lot of basketball and volleyball, and now i have stopped because i couldn't handle the pain. I was first diagnosed when I was 9. Symptoms went away for many years but came back to haunt me for the past 2.

I have no idea if this helps but hopefully someone might find this helpful.

I have advanced Ankylosing Spondylitis in the c region. This gives me limited neck movement particularly when looking up,I can only move my head 25mm upwards.I have also developed a hump. One thing I have noticed is sleep as flat as possible using just one low pillow it does help.A warm flannel can be of comfort sometimes.

Roscoe, it's important to not give up. I'm 30 and losing my mobility to oa that is creeping into every joint. I've had arthritis since I was 12. Now everyday is painful but it's a day that I get with my family. I get to watch my kids grow.

It sucks to deal with the pain and lack of mobility. You have to keep going. Moving helps by keeping the joints as loose as possible. Tell your dr what you're feeling. There are do many different treatments to help with the pain. Having chronic pain makes you more likely to suffer from depression, too.

Thank god I can talk to someone who is familiar with the devil disease ankylosing spondylitis ---I am on prednisone, sulfa, remicade, Effexor, diclofenac, loratab, and ambien to sleep. I've had it for two years I don't know how much more I can take wish my back would fuss then no more pain. I need some relief

okay well here is my story im 28 f used to be a gymnast and a swimmer as well as a runner. i over did exercise to where id get sick alot specially my sinuses. i also moved in with a dirty room mate who brought in a dog with fleas and a deer tick. well i have just been diagnosed with ankylosing spondylitis based on this gene and my symptoms and blood test (positive ana, RA factor, and inflammation ) but we seem to think more is going on because i also have a high WBC count.. mine started in the thoracic spine and rib cage. just excrutiating pain and muscle spasms all over my upper back. i went to massage therapy as well as physical therapy and no relief it just kept stiffening back up. then my hips started flaring up until it became constant pain where i couldnt walk upstairs. now mind you it started in 2013 and now in 2014 just a year later i can barely walk. but new symptoms appeared joint swelling in all my joints (wrist, elbow, knee, ankles, etc) jaw pain, ear stuffiness, headaches, muscle spasms, bone pain, tendonitis, the list goes on. I even have swelling in my muscles as well as extreme dry eye. i just took the western blot lyme test and it was negative. my diagnosis is still spondylitis. is it supposed to progress this quickly? i can barely move and am in excrutiating pain and cant start my treatment until october cuz im pregnant. i also have numbness in my hands and feet as well as a bunch of red dots on my stomach. my primary care doc just ordered me to see a hematologist because the high wbc count wasnt supposed to be effected by the spondylitis and i have this strange rash. i dont know what to do does anyone else have pain this horrible?! and what about all my joint swelling ?!

Hi everyone! It's my day 1 on this forum(Jan 2015).
I'm a 40 YO male, my back pain started in 2001 and went un-diagnosed for 5 years (Lots of excruciating pain in back, ribs, hips, shooting pain down my right hip towards the knee) until I met a Rheumatologist who finally did a HLA B27 test that came +ve! Declared I have Ankylosing Spondylitis as my Sacro-iliacal Joint gets locked up and my back is a bamboo. Have been on the following Medicines:

1. Remicade 5 mg/Kg (Every 6 weeks) and since Jan 2006
2. Sulafasalazine 1000mg twice daily since Jan 2006

...developed High BP eventually and since 2008 and have been on BP medicine, tried several different ones, then finally settled on

3. Amlodipine 15 mg- one daily for BP (Past 2 years)
4. Benazepril 10 mg-one daily for BP (Past 2 years)
5. 10mg of Atorvastatin (Generic for Lipitor, for Cholestrol).
6. Vitamin D3 5000 i.u as my Rheumatologist thinks I'm short of Vit D.

In Oct 2014, got stiff back again, so doctor increased 1 vial (From 5 to 6)...been feeling Fatigued out ever since..took me a while to figure this out, will be speaking to doctor if this is the real reason for Fatigue on my next visit.
Is it common to feel Fatigue even after 3-4 weeks of Remicade infusion? I was told even Amlodipine is recommended no more than 10 mg traditionally, but only 15 mg has been working for my BP..been worried about how fatigued and irritable I've been feeling for a few months now...any ideas?

Post Edited (9yrs_on_remicade) : 1/20/2015 6:39:14 AM (GMT-7)

Julie I noticed the same thing about AS. I was diagnosed about 2 1/2 yrs ago after back and joint pain since I was 14. I also have fibromyalgia and degenerative disc disease. So I deal with a lot of pain and was seeing a pain Dr. I was getting injections in my spine for pain then it got to a point that I got really sick and so swollen that I couldn't get out of bed by myself or hardly able to bend my fingers, wrist, or elbows. I could barely even walk. I was to my PCP and they just thought it was the fibro flaring up. You know your body and know that it was something else. I got in to see a rheumatologists and he ran about 20 different labs and diagnosed me with AS. I started on Enbrel immediately and tried many different anti-inflammatory's but nothing really helped so I don't take one unless it is wet weather out and I hurt all over really bad then I take 2 Aleve. I have pain in every joint and bursitis in both hips. It is very difficult for me to deal with since my kids were teenagers at this time and very active. I am a Master Gardener and that almost came to a stop at this point. I was 38 when I was diagnosed with fibro and about 45 with AS.I have other health issues one being sever depression my whole life and this just really hit me hard. I worked full-time when I was diagnosed with AS and continued to. In april of 2014 I became divorced and there was no way I could cut back on work even thought work was killing me and just wares me out to no end. I work in healthcare and it can be hard most of the time. I am looking for a new job that is not so physical. I just take life one day at a time since that April because my whole life was changed with other personal tragedies. It is nice to have others who know what you are going through because by looking at us outsiders don't see what we go through.