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.

Dear Inpain and Cunfused,

I believe anytime you are not sure about a doctors treatment or diagnosis, there is nothing wrong with a second opinion. Humira from what I hear is very expensive and has some side affects. After all, we usually know our bodies pretty well. I know that not everyone with the HLA-b27 gene do not hav Seronegative Spondylorathrapies. (AS and others fall in that category) However about 80% of patients with sypmtoms and that have been diagnosed, have the gene.

I am learning a lot about it my self over the last couple weeks. I am with you on the pain, and sometimes I find myself in denial too. But nobody ever had a perfect body, and never will.

I would say a second opinion can't hurt.

Familyman

InPain&Confused, I would second familyman's advice on going and getting a second opinion that never hurts. I've personally only been diagnoised with AS since August of this year, but I think I've had it since 85 when I was in the Army. With AS, we usually have flare up which last form a few days, to a few weeks to months. In looking back at the last twenty years I honestly think that I've had at least one or two flares a year. Only in the last year has my AS really gotten worse. Everytime I think I'm better I start hurting again. Many of the symptoms you listed sound a lot like what many have written in the Symptoms post in the general questions section.

In your post you stated that your granddad had something similar and that could make the genetic link. My mom's dad had back problems for years and now looking back I think it could have been AS, but he died 20 years ago and there is no one to ask about it now.

I think that this board has been one of the best things that I have found in dealing with AS. My Rhuemy gave me some information about AS, but this board has given me more. My primary doc even stated that she thought at 42 I was too young to have AS imagine that. One of the biggest things about having AS to me is coming to grips with it and hoping that it doesn't get as bad as some on this board. Hang in there, put your faith and trust in God and keep moving forward.

I've been on Humira for about two months and its helps. It doesn't take away all of the pain, but it has helped with the fatigue. It is very expensive if you don't have good insurance. I'm fortunate that I'm a veteran and they are covering the cost of it for me. I believe that both Humira and Enbrel have programs to help pay the cost if needed. If questions arise post about it on here or the main board and people can give you answers.

My main adivice to you is even though we may never meet anyone else on this board we are connected by this and will always be there for each other. Hang in there and I hope it gets better for you. Bobby

thank you Bobby and familyman. i feel much better after reading your msgs. thank you again

Hello,

Official diagnosis after a bunch of testing, is SpA. With moderate inflamation in Spine, Hips and mild in wrists, knees and feet. They are starting me out on Darvon-n for pain, Diclofenac, Sulfasalizine. DR. says if these don't help control pain within a few months, then he will step it up. Anybody taken these drugs? Do they/have they worked for you? Let me know?

Thanks,

I've been on Sulfasalizine since August, 2 pills three times a day. I'm also on Sulindac and ran out the other day. One of the side effects of sulfasalizine is head aches and believe I starting having them. My Doc refilled my sulindac and no more head aches and most days are good. My doc also put me on Humira and between all of the above and tramadol I'm able to function pretty well. Hope all goes well.

I have just been diagnosed...
I think I'm going to get a 2nd opinion though.

I've had back pain for 5 months every morning at 6am..for some reason the pain doesn't kick in until around 7 hours into sleep. I get out of bed..and it subsides in about 10 mins. I'm on Athrosec it helps a little..but not a lot.

I had xrays...my general Dr. didn't see anything..but the specialist mumbled something about my xrays that 'i didn't even need to look at them because..." of the the other testing he did.

I think i'm of average flexibility. But he did measurements and just said..'yeah you have AS'

I have no pain ANYWHERE, other than my back...it goes only as low as the top of my hip bones (love handles area)...and sometimes the pain can travel up to just about 'chest height' in the back. That's it.
Your thoughts?

Zepp, I think that one thing that you will find about AS is that it effects us all a little differently. I think if you read my post above that I've had AS for over 20 years, but didn't know about until about a year ago. My pain has always been more in my hips and until recently its moved to my lower back. I hope you find these forums helpful. It nice to have a place to come where you can come to for answers. Bobby

It's funny that there has been no history of it in my family, and I have a large extended family..heart disease and cancer have gotten some of the older generation...but no arthritis or pain along those lines.

He only tested my flexibility, therefore I don't understand how the could know.
I'm 6'1, 29yrs old, and working on losing my gut i gained over the last year. I could never really touch my toes growing up without some hamstring strain. He measured my fingertips 18cm from the floor. It seemed the only problem was when lying on the bed, my legs could bend into my chest far enough (yet there was no pain when he tried this- i could have been resisting because when I stretch for workouts, I can easily pull my leg right into my chest. my friend that can't even bend as much as me...so I don't understand how this is an indicator...how can flexibility be an indicator unless tests were done prior to spondylitis to show a decrease in flexibility.

The only pain I get is around 6am during sleep. It makes me toss and turn from that point on unless I get out of bed. The NSAIDs don't help either. I'm on 100mg a day...I take 1 in the morning and 1 at night.

I'm getting a 2nd opinion, either way to be sure. If I have it, I have it..and have to deal I guess.

Do the NSAIDs stop fusing?...or is it just for pain? Will the fusing happen regardless of what medication is taken? What is the average progression of this disease?

Are there other conditions that mimic the symptoms? I don't think anything showed up in the x-ray. The specialist that diagnosed me seemed to be in a rush to leave as well. I was the last patient for the day....reception had left once i registered and he didn't take time to review the x-rays with me or anything...
It seemed as though he was working late.

I'm going for a massage next week..maybe acupuncture as well.

Zepp, have they checked you for HLA-B27. My Rhuemy looked at my x-rays and told me that he was 90% percent sure that I had AS, but that the genetic test for HLA would comfirm it. Before I saw my Rhuemy they had tested me for about everything and had even done a nuclear bone scan and it hadn't shown anything. He even stated that he could see the AS from my regular x-rays and didn't know why no one else had seen it. If you feel the need to you might get another opinion. The NSAIDS really only help with the pain. I think that the TNF's can slow down AS, but there is no cure yet. I'm not sure about if there are other conditions that might mimic AS. Take care and feel free to ask any questions you have. I don't know much, but there are others who can really give you good advice. Bobby

No they didn't do any blood tests.
just xrays. I'm only 5 months into this. Never had any symptoms before. Just had back pain for the last 5 months.
If i'm only 5 months in, what could possibly show up on an xray?

I would ask them to preform the blood test. Its hard to say what they might see. This could have started several years earlier and you just now started having pain. I've had xrays taken for over 20 years and until someone who knew what to look for actually looked I didn't have a diagnosis. My pain started when I was 19 and I only had occasional pain and then all the sudden my body went crazy. I would ask my doctor to show me on the xray what he saw and why he thought that you had AS. Bobby

Thanks BobbyB for replying.
So here are a few things I'm wondering:

If I stretch and feel a crack..like cracking your knuckles...is this bad?...
Can stretching break anything? When I wake up in hte mornings, I normally stretch, but now in the last 5 months this pain wakes me up before any alarm clock does..can i do damage with a regular waking stretch?

I get that fusing happens regardless of NSAIDs and exercise...So the main goal is to keep posture in check so that fusing, at least happens in a regular posture position - correct?

I've read about a natural plant called AFA Blue Algae...apparently it promotes the release of more stem cells in the body and some AS people swear by it...anyone try it?

another quick note:
all of the research i've looked into said it most commonly starts in the sacroiliac (SI) joint. I've had no issue with this. The more I research, the more it makes me think I've been to a quack.

Zepp, things look pretty slow on the Men's board. You might want to post some of your questions on the main board. I think you might get more answers there.

AS..but i'm no doc, just a nurse with AS