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Ankylosing Spondylitis


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Old 10-31-2007, 01:14 AM   #1
gertrude234
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Ankylosing Spondylitis

I have been diagnosed with AS and have had it for over 12 months. I have a couple of questions which I hope someone can answer.

My question is: Has anyone heard off this disease being sparked off by a 'gastro bug' in those who are HLA-B27? This is how my Rhume thinks I contracted the disease.

Also, I have been told I will start Humira in the next week. What are the chances of getting cancer from this kind of medication?

For background info I have been on Methotrexate and Feldine for 10 months with no effect. I have tried Celebrex, Prexige and Voltaren. The disease started in my RH SI joint. Since then it has progressed to cat 3 sacroiliitis (Next cat is fusion to the spine)
It has also progressed into my LH SI joint, both kness and now my back which is giving me alot of diffuculty and pain in mobility.
The strongest pain killer I have taken is Panedine Forte, which now does not work. My GP will not give me anything stronger. I have also been taking Feldine, which my Rhume has said to double up on when I have a flare up. No one will perscribe me any pain relief, which is causing me alot of stress and is effecting my career.

What can I say to the GP or Rhume to get some pain relief without looking like a drugie? It seems like such a stuggle to get any help from Doctor's.

Any help or advice is much appriciated.

 
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Old 11-01-2007, 12:22 PM   #2
aether4
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Re: Ankylosing Spondylitis

Everything I've read from others with SIJD and sacroiliitis seems to always say the same thing, not much helps the pain there. (Not very encouraging news, is it?)
I had a bad flare in my right one last December, since then and at best it's a constant dull ache. Sitting on an ice pack does help some days.

I've been on feldene (I believe you meant this?) before and it was practically useless. I couldn't even feel the difference if I missed a dose or two. It is an older drug that supposedly can be a bit harsher on the GI. My rheumatologist switched me to naproxen, and while doesn't get rid of the pain but it does seem to lessen the inflammation and stiffness some.
So maybe it's time for you to sit down with your doctor and thoroughly discuss how your medicine doesn't seem to be helping, that it's time to try something else. Also discuss what painkillers you may need, surely your doctor can help find one with less interfering side effects.

You may also want to try searching the back problems section for SI and sacroiliitis problems. Quite a few people over there deal with it too and have done more for it than just painkillers and anti inflammatories.


Sorry, I can't answer your specific questions about medications, hopefully some of the others with experience with them will be of some help. (I'm still at the stage where I'm trying to figure out what's going on...) You could also try searching this section for past threads about AS and medications..

 
Old 11-03-2007, 12:15 PM   #3
Norene Maher
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Re: Ankylosing Spondylitis

Hi
I also have Ankylosing Spondylitis, I have been on celebrex for a year and not helping as it should. I am going to start Remecade this month. I have heard it stops/delays the disease from advancing. I also do not eat deadly nightshade plants. (potatoes, tomatoes, eggplant, peppers, etc). Pork and beef are apparently the worst cause of inflammation. I exercise a lot and it seems the next day I am not as bad. Also, I suffered from a serious bacterial infection coming up to three years ago. After that, I started to swell and then the pain started. I think that is what started it.
Hope this helps.
Norene
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Last edited by Norene Maher; 11-03-2007 at 12:19 PM.

 
Old 11-11-2007, 02:48 AM   #4
livingagain
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Re: Ankylosing Spondylitis

Hi

Thought i would share my experience which may help you. I developed reactive arthritis 4 1/2 years ago. I was a fitness trainer, very fit and healthy. It was 18 months before i had a diagnosis because i battled with it thinking it was from too much work/stress. It started as a sore back, then jaw and wrist. It was traced back to a severe bout of food poisoning. Over the next 3 years the disease progressed and I could hardly walk or even get out of bed. I am sure you know the story. I tried all the meds, vioxx, prednislone, methotrexate, sulphsalazine, cortisone etc. Nothing worked and i thought my life was over. My joints and back were deteriorating as a result. Then i went to my rheumy and asked about humira which i had read about in the newspaper - a young guy with AS who had got his life back with it. 1 month later i started it and noticed a difference almost immediately. Within 2 weeks i had my life back. I could go to the gym, my joints were getting better, swelling gone and no more back pain. I still can't run because of the damage to my vertabrae but i have been on it for 3 months now and i don't have any pain whatsoever. It has worked and i have talked to the nurse at the clinic i go to and she said that these results are typical. There have been no side effects whatsoever except for a little bit of redness about the size if a 20 cent piece where i inject it every 2 weeks in my stomach. THis goes within 2 days. As for the possibility of cancer, the risk of this is only very very small and if you live healthy and exercise then it is not even a risk as far as i am concerned because i had no quality of life or future before anyway. Now i do not even think of having arthritis because i do not have the daily pain to remind me. I do not need to go to the doctor all the time for joint problems and pain and i do not take any other meds at all - not ever panadol. I can't recommend it highly enough and would encourage anyone to try it if possible, especially if you are in the early stages of arthritis because it progresses quite quickly. If you have any questions i am happy to respond.

 
Old 12-05-2007, 08:03 AM   #5
monkey5
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Re: Ankylosing Spondylitis

Hi memebers i am wondering if this sounds like AS?
Evidence of degenerative changes at levelL5-S1 and compromise of the interverbral foramina on the left all MRI report evidence that Transitional element at lumrosacraljunction is felt to represent a partially sacralized L5 with a broad transverse process on the left forming anoumulous articulation with the upper sacrum. Also Bone scan evidence thatanterior images demonstrate subtle increased activity anterior aspect of the left SI joint? Activity probably corresponds to Pseudoarthrosis of the transitional segment at L5-S1 on the left???
Any advice here please!?

Here have been my symptoms for at least two years:

The disease starts with hip or low back pain that comes and goes and is worse at night, in the morning, or after inactivity.

Back pain begins in the sacroiliac joints (between the pelvis and the spine) and may later include the lower spine and the upper spine.

Pain may go away by bending over. You may not be able to fully expand your chest because of the involvement of the joints between the ribs.

Specific symptoms:

Chronic stooping to relieve symptoms
Eye inflammation
Fatigue
Hip pain and stiffness
Joint pain and joint swelling in the shoulders, knees, and ankles
Limited expansion of the chest
Limited range of motion, especially involving spine and hips
Low-back pain that is worse at night, in the morning, or after inactivity
Loss of appetite
Neck pain
Slight fever
Stiffness and limited motion in the low back
Weight loss
Stomacke issues recently
Some numbness worse with activity



Love, Monkey

Last edited by monkey5; 12-05-2007 at 08:06 AM. Reason: add info

 
Old 12-06-2007, 05:36 PM   #6
Norene Maher
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Re: Ankylosing Spondylitis

Hi Monkey,
I have AS and your symptoms sound like you have it too. Get your doctor to test your blood for the B27 gene that seems to be in most people with AS. If they tell you, your a girl and there is no way you have this disease (which happened to me a year before being diagnosed) don't listen.
Norene
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Old 12-15-2007, 12:06 AM   #7
rush-rulz
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Re: Ankylosing Spondylitis

Quote:
If they tell you, your a girl and there is no way you have this disease (which happened to me a year before being diagnosed) don't listen.
I don't have it (or HLA B27), but my grandmother has it, so this is a good point. She's been dealing with this for like 50 years now or something, and she wound up in a wheelchair for the most part. The doctors didn't want to give her steroids because of the risks, so they said she was better off in the chair as long as someone was around to help her. My grandfather died, and for the first time in many years, she was out of the chair and able to do stuff like she hadn't been able to for so long. Of course, now she's got Parkinson's, and that's the big problem she's facing now. It's sort of funny to have AS for decades and be in a chair and end up with that being the least of your problems later in life.

 
Old 12-15-2007, 12:11 PM   #8
maebelle
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Re: Ankylosing Spondylitis

I also have tested HLAB27 positive.The Rheumatologist told me "possible AS".
I also have fibromyalgia,arthritis of both knees,neck and lumbar spine etc....
I have not heard of a gastro bug.I do know that the HLAB27 is a gene and not all people who test pos end up with a disease.AS also effects women and men differently.I understand how you feel about being in constant pain.

I have tried all the arthritis meds with no success.Ultram for pain helps very little.Predisone has been the only drug that has given me relief.My DR is thinking about Enbrel.
As far as pain meds....get your GP to refer you to a pain management clinic.
They helped me alot.I took loratab for yrs and used a tens unit.I hope things get better for you.MB

 
Old 12-15-2007, 03:49 PM   #9
monkey5
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Re: Ankylosing Spondylitis

Hey Gals, you are really making me worried here ugh. Only because noone has said anything too positive about treatment. Rush has said something postitive, but boy big turnaround there, i wonder why. I am scheduled to see a Rheumy and i am about 77% confident that this is what the result will be, even without having the bloodwork, just by my symptoms and MRI. Plus an online quiz i took wich may or may not play a part. I just know i want some diagnosis so i can begin some kind of treatmen! Maebelle, i am on Lortab right now and have been but it only takes the edge off sometimes. Nothing helps when i wake up in the morning sometimes and can't move at all and need help. Do any of you experience stomach issues also or anything else similiar?
Love, Monkey

 
Old 12-19-2007, 02:19 PM   #10
Norene Maher
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Re: Ankylosing Spondylitis

Hi Ladies,
Hope everyone is doing as well as possible and excited for the holidays.
I am in waiting for insurance to give me the okay for Enbrel. I am currently on Celebrex which is somewhat helpful. I also suffer with stomach problems but I think I have developed food allergies because of this disease. AS is so overwhelming with all the different symptoms and problems, its confusing to me and others. Icing is a huge help and exercise. My worst enemy is sitting, I hate the pain that starts by just relaxing. I hear great things about Enbrel and am excited to start it.
Merry Christmas
Canada eh!
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Old 12-20-2007, 10:48 AM   #11
monkey5
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Re: Ankylosing Spondylitis

Norene, i truly am thinking thats where all my stomache issues arose from ugh. I am waiting to have more blood work done tommorrow to recheck my sed rate ect., all that good stuff! I also saw my dr. yesterday and she agreed about seeing a rheumatoid dr. especially after telling her about my neck pain since all this is getting worse, but she is saving the other blood test for the one gene thing that is sometimes postitive for the rheumy if he wants. I truly believe he will say i have the AS or something similiar. The scary thing right now is that in my chest rib area i am getting alot of stiffness and. It's like it feels tight yet pressure type soreness and i believe this can go along with AS. I can feel your discomfort with the sitting part. It's like you wanna sit but you know you feel better if you don't and you know that if you are active you may feel worse the next morning after ugh. I have had a very rough two days here in the mornings and throughout the day. Leaning forward wich is bad helps me. I can't wait to see a rheumy and maybe get some relief, i really feel i am on the way to a better active life i hope, because Lortab just isn't cutting it anymore and i think with the right treatmnet i might get some relief! Take care and Happy holidays!
Love, Melissa
P.s Of course i can't see the rheumy until Jan. 15th ugh

 
Old 12-21-2007, 07:23 AM   #12
Styller117
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Re: Ankylosing Spondylitis

I too am hla b27 positive, i was told that this gene can be associated with other disorders like ibs/colitis psoriasis, arthritic psoriasis and more. They think even more things are assocaited with this.
Good luck
Styller

 
Old 12-21-2007, 06:13 PM   #13
Norene Maher
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Re: Ankylosing Spondylitis

Hi Everyone,
The B27 gene is nasty, it usually is a direct link from the parent. My Father had AS and my brother has AS, as you can tell we are a very sharing and giving family. I hope I am not so generous to my children. Styller, you are right about the other problems. It also brings gastrol problems, lungs, eyes, and rarely heart. I have developed asthma because of the swelling on the rib cage and spine. I will find out if insurance will cover the Enbrel on December 27.
talk to you soon
Merry Christmas
Canada eh!!
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Old 01-08-2008, 11:22 AM   #14
monkey5
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Re: Ankylosing Spondylitis

Hey As sufferers, i hope all is well. I have my first Rheumy appt. next week and like i said the dr. has agreed that it is a possibility but wait for the appt. Meanwhile i had all under the sun checked elsewhere that i could be getting this nerve in my leg thing and can't seem to get anywhere, so back at square one kinda as i am not sure if it's maybe comeing from my knee and will rheumy check this? And i have been having alot of rib pain and stomach discomfort could this be related? I had a colonoscopy done this am. to check for abnormalities to why all the upper abdomen tenderness ect. and negative, very frustuarting.
Love, Monkey

 
Old 01-17-2008, 03:35 PM   #15
niki12
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Re: Ankylosing Spondylitis

For any AS suffers. I feel for you. I've watched my husband suffer years doctors just gave shots and pain killers that does nothing but years of damage untill finally 2001 he was diagnoised with AS. Before diagnosis he couldn't turn his head,put his own socks on and you can imagine any other activity. Old men functioned better than my 33 year old husband. He thought he was having a heart attach several times from the pressure and pain of the rib cage. He could not lift his arms all the way up. Feet hurt unbearly he was ready to give up. In 2001 relief came as finally he was diagnoised with AS. He stays fatigued but works full time. Been on many combination meds to enbrel but ended up with inflamation in the eye which his sedrate went to 97 and almost went blind had to take double the steroids and get one shot in the eye and now is on remicade an infusion every 6 weeks. Still taking Methotrexate, folic acid. dyclofinac. and hydrocodone. Oh and he has irritable bowel syndrome I believe it is from all the meds. He is fine. He hurts now when he overexerts. But enjoys everything life offers including our 4 year. Get diagnoised and get treated and take care and listen to your body. It will get better.

 
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