Spondylitis Association of America

Hi Shauna,
Firstly, I'm sorry you had to find us, but I'm glad you did.
I'm sure this is all scary and overwhelming right now and I hope it helps to know that you are not alone.
I'm sure you'll have many people respond to you with their personal stories and experiences, so I just want to direct you to some medical information about different treatment options for spondylitis.
If you haven't yet, please visit:... Read More
http://www.spondylitis.org/about/treatment.aspx

Also, peruse the rest of the website, including the Message Boards. There is a ton of good information you can find on this site and the more you know, the less scary things become.

Also I hope you have a good rheumatologist who can guide you to appropriate treatment. If you feel your rheumatologist is not very experienced with spondylitis, or would like another opinion, let me know and I can share a list of rheumatologists who've been recommended to us by our members.
It will get less scary Shauna!

Hi Shauna I know that it can be very overwhelming when choosing meds I take Remicade its works pretty good for more and i dont have any of the sideeffercts I have been taken Remicade for 2 to 3 years now I sill have some pain and flare ups but not as bad as when i have to stop taken it beacuse I have a cold. But in my opinion its a good drug i hope it helps Heather

Hi Ashish,
Welcome to this page/board!
Here's an article that discusses the side effects associated with Sulfasalazine:
http://www.medicinenet.com/sulfasalazine-oral/article.htm
... Read More
I'm glad to hear that you do regular exercises - that is so important for keeping your range of motion and staying strong. I hope you also stretch and practice good posture. And yes, you absolutely can lead a good life with AS!
It's about finding new ways of doing things, and having a positive outlook.
There are also other biologics besides remicade that work well for some people.

The new site is great!

Looks really great!

I have been on Methotrexate injections once weekly for the past year and a half. I find I am thirsty all the time also. I sometime get ulcers in my mouth (never had one before), the side effect that I find most bothersome is the nausea . I hate vomiting, so as soon as feel the slightest nauseaous I take a Gravol and head to bed making sure I have ... Read Moreice water and gingerale on my night stand. I had my injection yesterday and today the nausea hit me this afternoon. Sometimes it will last until the following day and sometimes longer. I had 4 days of wicked nausea when I first started the injections. My SED rate has come down, but not fast enough for my rheumatologist. My SED was 114 and has come dawn to 53 which is still very high so he added another drug. I haven't noticed any loss of hair.... I was a Registered Nurse. I never thought in a million years that I would be in this situation. You can ask your local pharmacist for a printout on this drug as there are orther side effects.

I drink plenty of water as the Methotrexate is hard on the liver and kidneys. I take 5 mgs of Folic acid. Both of these things help prevent breakouts of the skin and the mouth and flush out your system. I drink 6-8 full glasses of water per day and that is water only. Juice, milk or coffee not included.

Because it's the New York times?

Managing my chronic illness keeps us in the poor house. My bi-weekly infusions cost $500 out of my pocket. That's $1000 a month. And, that doesn't even include what I pay for my 15 prescriptions, and doctor appointments. If Congress wants to bail someone out, they should look to the people who can't afford to live because of an illness that is no fault of their own.

I too have spondylitis, took about 6 years to diagnose, a diagnosis can be difficult with AS, you have probably read about this already. I take Enbrel, now, started with Indocin, then Celebrex, then Sulfasalazine. I had to start Enbrel due to a 4 month flare that I could not shake. I was so scared to start Enbrel due to everything else it could ... Read Morecause. However, I decided at 31 years old, my quality of life was much more important to me than possibily having one of (many) side effects. It was a hard decision, don't get me wrong, but my flare is now gone and all of the pain that caused insomnia, poor attitude, use of a cane, couldn't do yoga or hike or enjoy my life in general. Good luck. The Spondylitis Association is great. Also spondyville.com has a good support forum as well. Best wishes with the road ahead. Their is light at the end of the tunnel, just take it one day at a time and try your best to keep a positive attitude.

I was diagnosed 6 years ago and I am on Remicade Infusions & Methotrexate. It has done wonders for me... I guess I am lucky that for now it is working and I have had no side effects from the meds. I had symptoms in my 20's and I am 47 years old. I kept getting Iritis and severe back pain. My Eye Dr is the one that really helped me. Iritis patients ... Read Moreusually have AS. So he sent me to a Rheumatoligist.
The key is to find a good Rheumy who understands AS. It effects ever body different. And the meds do as well.. I think it is all trial and error. But these meds have helped me soo much. I hope you find what works for you!!! It's a scary thing! I waited 3 months after I went to the Rheumy to go on the meds. I was first on Humira injections and then I had to go on Remicade because of insurance issues. Humira helped too...
Crystal is right the quality of life is more important then the side effects... We are here for each other...You need to know you are not alone...

Hey thank you Dorothy!!!! =)

Some info about starting/leading a group
http://www.spondylitis.org/patient_resources/Things_to_Consider.pdf

And feel free to email me with questions -
elin.aslanyan@spondylitis.org... Read More

Thanks!
Elin

BTW- my wife said that she also asked via the saa web page... so I am quite sure that the person who asked you a few days ago was my wife. She has not yet called the 1-800 number.

Hi Curt. I just sent you a message. -- Melissa

Do any of you out there live in Salt Lake city Utah???

Pam, I too am 40 and was only recently diagnosed. I live in Squaw Valley, CA. and would like some advice on how to cope as well.

Hi Ashley. I live in SD up in north county. How can I help?

Nice! Well, I was just wondering if there are any groups in our area, who help oneanother in pain management strategies. It just seems so difficult when you can't relate to anyone just how difficult it can be to even manage every day jobs - much less, deal with constant, chronic pain!

Marty, I've had AS since I was a kid and am now 40. I'm in Rockford, IL area and have yet to find a support group around. :(

Hi Marty, sorry to say we don't have a support group in WI at this time. Let me know if you're interested in starting one in your area - be glad to work with you.

Pam,hopefully it will happen in your area as I do hope it happens in mine.

hahaha!! Exactly! That was a subliminal message; code words work better sometimes. ( :

I am so smart!

Can't wait!

great

I attended this webinar and found it to be very informative. I especially liked how I was able to type in a question and then Dr.Hallegua answered it! It made the whole experience seem more personal and was almost as if I were there.

Thanks Jessica! I'm glad you found the webinar effective.

Hi Melissa, I'm 26 and I was diagnosed in the last 2 years. I understand what you're going through. If I can give you one important piece of advice it's this: don't dwell on others stories where they may be to the point where they can't walk, etc...I let this get me down and depressed, fearing the unknown of my future. Then I realized, because we are young, we are lucky to be diagnosed early and start proper treatments now....meaning we could have a long, normal life simply because of the advancements in medications.

So, I've seen a pain management therapist which has helped me to not get as angry or depressed when my pain spikes. I think it helps to talk to others who understand our pain...because it is something we deal with on a daily basis, yet others look at us and see nothing wrong. That's tough to deal with.

If you ever want to talk or have any questions, I'd be happy to try to help.... Read More

Ashley

Hello Melissa, I am 30 and was diagnosed with AS when I was about 19. Ashley is right don't dwell on the stories, I too got depressed. My advise would be to stay as physically active as possible, take your medication and live your life to the best of your ability . You will have your good and and bad days, enjoy the good and deal with the bad. !!God always will give us a new day in the morning!! If you ever need to talk I will be happy to help.
Miguel

okay found the teen stuff!

Hi Mercedes, thank you for your support! It is truly appreciated.
The easiest way to become a member is online - please visit: http://www.spondylitis.org/store/productlist_sm.aspx?department=1
and click on the "Other Foreign Membership" - JOIN link, then follow instructions on the page. Let me know if you have any trouble. And thanks again!

Will the webinar be available for viewing / download afterwards? I am booked on the 6th but I would like to watch.

I am wondering the same thing. I will not be avail on the 6th and would like to view with my family so they have a better understanding.

Hi all, the webinar will be recorded and available on our site -

However, it will be in the Member Section of our website, meaning that while the Live Version is available to everyone, only SAA members will have access to the recording.

(For information about SAA membership please visit: http://www.spondylitis.org/members/main.aspx?YYZ=NAV08 )

I'm now following too - love it!

I would sign up, but I dont know what twitter is...:(

Thank you for signing up!! We now have 103 followers on Twitter. Those of you who aren't too familiar with Twitter, check it out - you might like it! It's sharing quick little snippets of information. Follow link above to go to our page.