Spondylitis Association of America Forums General Discussion Men Only Message Board Just Diagnosed!

Hello,
I have just been diagnosed with AS, actually non-specific right now,(seronegative spondyloarthropathy with that HL gene thing) and all the wonderful pain that comes with it, still going on with more tests. This is all new to me, and frankly a little scared. Undergoing some liver tests also due to high lever enzyme. Any one experience the Liver enzyme thing with your AS.
Thanks for you input and support

Hi Familyman. Welcome. I was diagnosed with AS in 1985, although I had symptoms going back to around 1980. I know how scary it is to be told you have a chronic disease, but I'm here to tell you, that you're going to be okay. Keep your sense of humor and your willingness to adapt, and you'll go a long way towards making this disease manageable for yourself.

If you want to talk to others with AS, I run an online AS support group called Spondyville. We have two regularly scheduled chats on Saturdays, one at 10AM Eastern time (NYC time) and the other at 5PM Eastern time. (is Texas in the Central time zone? If so, then the times are 9AM and 4PM.)
You can get to the chats by going to the Spondyville website, www.Spondyville.com

Or, if you want to chat one-on-one, feel free to contact me privately.


Spenser23@aol.com

Yes, as Spenser alluded to you certainly can't ignore your AS, however taking control of it and maintaining a great life are definitely possible. In addition to Spondyville (I have yet to make it to one of the chat sessions as I always have something going) kickas.org is another site with a bit of a different overall feel and perspective.

I did initially have some liver enzyme problems and an elevated white blood cell count but I think that was more due to some amoebas and parasites I contracted than AS, sorry.

I didn't have the high enzymes, but I did have real high SED and CPE rates. It's tough having AS, but having websites such as this one help. Hopefully your Doc will get you on the right meds and that helps. I can't remember the last pain free day I had, but atleast with the meds it's tolerable.

Thank you for your responses, My pain is fairly tolerable right now, some days are worse than others, some nights tough to sleep. The Dr. has me on Ultram 50mg 1-2/dose 3 times a day. Sometimes it works and sometimes it doesn't. What works for you guys?
Oh yah, my pain is not limited to my spine, but many joints in my body, common with you too?
Thanks again for your support!

Right now for the AS I'm on Humira twice a month,
Sulindac twice a day, and Sulfsalizine 2 pills three times a day. For pain Tramadol 3 times a day and to keep my blood count up I'm on Iron twice a day. Its suppose to be 3 times but my stomach can only handle it 2. The pain is something that I've learned to live with. Although, I've only been diagnoised with AS since August of 07. I think I've really had it since 1987 when I was in the Army. Its only taken the VA 20 years to really figure out what was wrong. Most of my pain is in my hips, feet, neck and shoulders. Most days the pain in my back is not bad. I think thats the thing about AS its not always our back. From the fatigue, to night sweats, sitting pain and on and on and on. The humira has worked best for pain and fatigue, but like I said I still have pain. I see by your tag line on your post that you are a Christian. I think that helps the most. On days when it seems like its all to bad, we have God to rely on. When I was really hurting and not sure what was going on, I had someone pray for me and tell me that God was in control and to put my faith in him. I have a couple of people at church who still don't understand, but I still have my faith and my family to turn to. Hope this helps. Bobby

Nice to meet you, familyman. High liver enzymes are not associated with AS. They are a sign that your liver is a little strained, working overtime, or diseased. You can have a high reading on one of the enzymes sometimes and it will go back to normal the next time -- in other words, usually it is something to ignore. But if it is quite high or consistently high, then the doctor will want to find out why. Some medicines can make it high (methotrexate makes mine high). Excessive drinking will too. But so could a tumor or something, so keep an eye on it.

By the way, I grew up not far from Bobby B in West Texas and I am a churchgoer too. Prayer and faith have been as crucial to me in how I deal with my AS as have my medicines. But other Christians are like anyone else in understanding how this disease affects us. The good thing is that my church friends sincerely pray for healing, and that has often helped me feel better (as has 2 Cor. 12:7-10). But they usually have a hard time even remembering the name of our disease and it may take many explanations before they really begin to pray with specifics. Just don't be surprised if they ask you the next week if you have already gotten better! (And I will pray that you will). It is as hard for others to accept that this is a chronic disease as it is for us. But even when you hurt a lot, most of the time you will still look fine to them, so they will forget what seems obvious to you. I no longer try to explain to everybody what I am going through, but my close friends now do know and understand pretty well. They had to hear it many times before it sunk in.

I now need to take morphine for the pain I am in. Sounds kind of scary, doesn't it? Well, thank God for opioids. Actually, I didn't need anything that strong for 20 years. Familyman, the disease can go through active and passive stages. The ups and downs or "flares" are normal. You can hurt like hell for one part of the day, then feel little pain at other times. One of the most important things is to take your meds on schedule. If I ever forget, I do pay for it later. But even when I take the meds on time, it often just hurts. And it took me a long time to realize that this disease can cause a lot of fatigue. Ironic, but you have to both move around and rest more to feel better.

Mark D,
Thank you for your input. God and My wonderful wife are definately a huge help! The way you describe your pain is sometimes how I feel, part of the day I just want to crawl out of my body, the other part its fairly tolerable. The pain seems to move around from different areas of my spine from hip to neck and other joints. After having it for so many years are you still able to work? Is there any fusion yet?
I think I am already going thru the explanation deal, people don't know what it is and do not understand.
Bless you for your support and sharing, it does give me more comfort knowing other men are going thru this.

I am very stiff and showing worsening of several kinds in my spine, but know obvious fusion yet. I am having trouble though with stenosis and the neuropathy that it causes. I have been able to work up until now, but this past year has been the hardest and I feel that I am only doing half of what I used to. Fatigue is a real problem, but painkillers are essential if I am to keep working.

Hi friends,
I have just been diagnosed with AS, I had joint pains from last 10years. I always got attacks in winter. when I read the symptoms on AS. I don’t feel I have AS. DR. diagnosed AS because of following reasons

1. I have HLA-B27 gene
2. x-ray shows some kind of fusion in one side of sacroiliac joints
3. I have normal uric acid level in blood and no crystals in join fluid


Here are the my actual symptoms

1. I always get joint pain in winter
2. swelling in one joint moves to another after few weeks or months
3. swelling will be RED, HOT very Painful (out 0-10 I can say 9 and 10)
4. no back pain unless I sleep on a soft bed
5. Pain lasts for 5-6 months (never got proper meds and I never took pain killers before) starts in winter and by the time of summer it will go away.
6. I feel some food items increase the pain
7. Ice pack reduces the pain and hot pack increases the pain.
8. there used to be stiffness because of pain but its not limited to mornings
9. this time I have stiffness in my neck and its very painful
10. I heard my grand-grand father got some kind of painful joint pain. (But he got it once in life time. After that He did strict diet and some exercise ) no medication , he lived 95yrs without any problem
11. My mother got it once, same red, hot painful joint pain to her elbow and later moved to hip joint. After that she never got joint pain again. But sometime she gets stiff neck when it rains, or for some kind of food.
12. I pain relieves after going to toilet or urinals or when I eat food.


I want to know if all of you with AS had similar symptoms. Can anyone have AS and not get any joint pains or inflammation at all? Or can anyone have AS and never hurts badly?

My Dr. asked me to take Humira/Enbrel. Those are so expensive!!! Does your insurance pay for that? For life time?

Please give me your views. Thank you very much for your time.