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ankylosing spondylitis

Started by telispaul on 01/20/2010 12:50am

My son who is now 24 years now was diagnosed early stage of spondylitis by a neurologist in the year 2001 when he suddenly got sick and totally immobilised and on bed for about 2 weeks. Early rounds to several doctors and tests could not diagnose exactly what was wrong to him. His knees were swollen, hip bone pain, lower back pain were the symptons. Doctor has put him on Salazopyrin and Overon for pain management plus exercise. He was doing fine since then but with regular above mentioned pain symptoms. As usual for a young boy he got fed up with medicines and started skipping the same and even tried Homeopathic treatment that could not give him expected relief from pain. Sometime he is not in been able to sleep in the night due to pain and that aggravated his misery.

Though initially did not know anything about this desease i have gone through internet browsing related web pages but I could not get a proper answer for my following questions. My biggest worry is his future. is it going to be same for him throughout life. Will this desease eventually led him to be in abnormal condition. Will there no cure for this in future? What exactly he can do to avoid the desease being developed into more severe condition.

I would appreciate if any one provide me some advise or suggestion to lead him atleast a normal life in future.

Paul Telis

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Paul,

I am sorry to hear about what your son is going through. My advice would be to go to a theumatologist with experience in the disease. There are new pharmacological treatments that can help him. Controlling the inflammation is key. I pulled this from the University of Washington website: AS Prognosis

Almost all people with ankylosing spondylitis can expect to lead normal and productive lives. Despite the chronic nature of the illness, only a few people with ankylosing spondylitis will become severely disabled. The management of pain and the control of inflammation can reduce the daily problems that may occur with ankylosing spondylitis. By watching posture and body position and by doing exercises daily, the individual can control many of the effects of the disease.

Ankylosing spondylitis is rarely crippling and the symptoms can be managed in most people. Keep in mind that each person with ankylosing spondylitis responds to treatment differently; what works for another person may not work for you. Be patient and actively participate in your care. Even though a cure is not known at present, you can do a lot on your own to control your symptoms.

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Last May my husband fell in the house on carpet would not go to the hospital when the Ambulance came then 30 minutes later he asked me to take him to the hospital.His only complaint was sever pain in his middle fingers and hands with swelling of both hands.At the hospital they kept asking me what I thought was wrong?Two days later they found the problem he had fracture the natural fusion in his neck he always had his head tilted down never stood up straight.Thought it was because he was a welder?Found out he has AS that was why his neck was stuck in that position? They did surgery used Cadaver bone/his bone and some type of glue, put a plate & 10 screws in his neck C-5 area.The bone graft never took still an air space in between the bone graft and the bone it was suppose to graft too. He lost his job & Health Insurance he did get on SSD now will start to go to the VA for medical care. ? They did say if he fell one more time he would be dead or Paralyzed, they advised him to wear his hard Cervical collar 24/7 but after 8 months he will not wear it heck he is 61 years old so nothing I can do about it.He should exercise but he will not do that either so if you know or think you have AS go to a Specialiest doctor for medications and the proper exercises.Know my husbands case is not the normal end of this disease its more to the bad end of what could happen.

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AS is an autoimmune disease that attacks specifically, the joints of the spine, but can affect other areas as well. A couple blood tests can confirm if this is the case, which makes it odd that he has not been diagnosed conclusively to have AS yet. Regardless of whether he has AS, or some other disease that is attacking his joints, I would recommend seeing a good chiropractor. I say "good" because, we are not all the same. I would find one that is focused on increasing your son's level of health. While a cure for AS is unlikely, it may be a good idea to simply increase is functionality. There are dietary aspects that can reduce inflammation and chiropractic adjustments may also help. Even if he doesn't have AS, getting healthy and maintaining your body with chiropractic care will be of benefit.

Dr. Wiegand

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It will help maintain his mobility if he is able to learn and do regular exercises that involve stretching and movement according to his ability. Being stationery for long periods increases pain and causes the joints to stiffen, which in the end reduces flexibility. The earlier he learns about and treats his condition, the better. I have had it for several years so I feel his pain.

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For clarification, he should be seeing a rheumatologist...

The Anti-TNFA drugs have shown to be efficacious in patients with Ankylosing Spondylitis. They include Remicade, Humira and Enbrel.

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Dear sir,

Please review my response to another posting "Ankylosing spondylitis with spinal stenosis." A previous post was absolutely correct about finding a rhematologist that specializes with AS. In my previous post I mentioned John Reveille. I highly reccommend him, and NOT because I personally know him. My brother came across his name on the internet and my father has began seeing him. It is extremely important to your sons health that you get the right treatment for him early. It can make a substantial difference. If you respond to this post I can send you my email address if you would like- I would rather not post on a website though but I know the severity and devastation this can bring. Your son is only two years younger than I am, and I have tested positive for the HLA-B27 gene. While that does not mean that I defintely have AS, I am at risk and try to keep up with the literature b/c of my father....

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My son is 22 years old & recently diagnosd with AS but has probably had it for the past 4-6 years. Reading your post was something I could have written myself. I too am very concerned about my son's future & the impact the disease might have. He was in the hospital ER over a year ago also unable to move. My son has also had issues with Ulcerative Colitis. Is there a correlation between this & AS? My son was started on Oxyaprozin, which he does not take consistently. It is very frustrating because he does not want me involved in his care & the doctors won't discuss anything with me because of HIPPA. I would also welcome advice or suggestions. The rheumatologist has mentioned putting my son on a biologic such as Remicade...I don't know about it's effectiveness with AS & am concerned about potential side effects.

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Hi I am a 34 year old guy and have been diagonised with AS for last 6+ years, To my good fortune i was recommended by a rheumatologist and after a long series of conversations he decided to put me on a TNF blocker. Man, thats a fantastic drug which got me off of the pain completely in less than a month. I was made aware of the side effects this drug could c ause but the painfree life am leading right now trumphs everything for now.

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Caring Mom-
My father had significant success while taking Remicade. Unfortunately after two years of taking it he was on the max dosage and got worried and stopped taking it. He was afraid that his tolerance was too high and that it might not be affective one day....He too had to go to the hospital about two years ago, he could not move, we had to call an ambulance to lift him out of bed. His incidence however, ended up being realated to a Degenerative Disc Disease in his Lumbar spine. I am not a doctor or AS specialist, I have only tried to read as much literature as possible so the only suggestions I can give you is from my experience first hand with my father and patients I have worked with in the clinic and literature I have read. I have read that Irritable Bowel Syndrome has been linked to either AS or other types of rheumatic diseases. I would have to guess b/c of the inflammatory component in both, but I dont know if IBS is the same or similiar to Ulcerative Colitis. Also, if your son has not already done so he needs to have an MRI and have his rheumatologist review it. I am not trying to discredit any other medical professionals, but someone with extensive knowledge knows what to look for in AS patients (my father was misdiagnosed for 30yrs and another rheumatologist who did not specialize in AS tried to tell him he had Psoratic Arthritis just a year ago-but he finally got the confirmed dx of AS)... He needs to also realize the importance of early intervention for this. If you are looking for a way to help, maybe you can find a rheumatologist that specializes in AS and give him the information...

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Thanks for your response. Just had a major argument with my son as I "went behind his back" & contacted his gastroenterologist. The GI thinks my son is having a flare-up of colitis because of the bad joint pain & blood when he goes to the bathroom. So far a blood test has been ordered & I don't think he will even go. I know the doctor is looking for an elevated seg. rate. The GI also mentioned starting a biologic. My son had an MRI last year. The finding was "sacroillitis, which is suspicious for anklylosing spondylitis or other inflammatory spondyloarthropy". I just don't know how to help him because he is so angry, refuses to talk to me etc.

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caringmom-
I am sorry to hear that your son is upset...hopefully he will realize that you only care deeply for him. The increased sedimentation rate will show if he is having a flare up, but (from what I know) that is all it will show. One of the major findings on my fathers MRI was sacroilitis as well as "black spots" on his spine, in addition, there were..i think the phrase was "marrow edemas." If you would you would like to further discuss via email, let me know..i will create a new email (b/c I dont just want to post mine on a public website :) )

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Hi Iam charlin Joseph from India. Iam suffering from ankylosing spondolyssis a disease also starts as fusion to the spine and later other joints. I tried lot many alopathy medicines. Since for these arthritis disease related to spine and joints they have no medicine yet to cure this fatal disease.

I was in pain for 1 year hardly walk or stand even. However, My life changed after taking Homeopathic medicine and got out from this fusion and inflammation in 8 months time.

kindly test these treatment with even no side effects and strong medicine. kindly trust me every homeopathic doctors are not same. I got well through one doctor who is researcher he is prof. who given me medicine just exactly for ankylosing spondolyssis. Through is wast knowledge about the medicine and treat ment i got well, of course by gods will and kindness. All my joints were so badly inflmmated that i could even breathe properly because of the severe pain and almost could not sleep for 3 months but now i got well and sit on internet atleast 4 hours every day to reach out people who suffer with this grave disease.

rheumotologists had advised me inflixicabe and remicade and all other TNF blockers which will take out inflmmation for some time which is not guaranteed that too with a risk of guaranteed side effects.

Believe me i suffered a lot and iam 30 years old age. like your son my father was so concerned about me but now he is very happy since iam totally out of this disease.

god has given me new life and i will help others.

my phone number is +91+9043577630

email ( kevinjoseph51@gmail.com

regards and god bless your son and u.

take care.

kindly do not hesitate to call me. Homeopathic is still a stronger medicine then any other.

Just believe this doctor is not a ordinary doctor. Homeopathic medicine is very narrow and fine perfectly given medicine will only be help not ever doctor be a good doctor in this.

kindly trust me and send all your reports to my email id and call me i would be glad to speak with you.

thanks.

Kindly send your reports to me.

regards

charlin

kevinjoseph51@gmail.com

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Hi Iam charlin Joseph from India. Iam suffering from ankylosing spondolyssis a disease also starts as fusion to the spine and later other joints. I tried lot many alopathy medicines. Since for these arthritis disease related to spine and joints they have no medicine yet to cure this fatal disease.

I was in pain for 1 year hardly walk or stand even. However, My life changed after taking Homeopathic medicine and got out from this fusion and inflammation in 8 months time.

kindly test these treatment with even no side effects and strong medicine. kindly trust me every homeopathic doctors are not same. I got well through one doctor who is researcher he is prof. who given me medicine just exactly for ankylosing spondolyssis. Through is wast knowledge about the medicine and treat ment i got well, of course by gods will and kindness. All my joints were so badly inflmmated that i could even breathe properly because of the severe pain and almost could not sleep for 3 months but now i got well and sit on internet atleast 4 hours every day to reach out people who suffer with this grave disease.

rheumotologists had advised me inflixicabe and remicade and all other TNF blockers which will take out inflmmation for some time which is not guaranteed that too with a risk of guaranteed side effects.

Believe me i suffered a lot and iam 30 years old age. like your son my father was so concerned about me but now he is very happy since iam totally out of this disease.

god has given me new life and i will help others.

my phone number is +91+9043577630

email ( kevinjoseph51@gmail.com

regards and god bless your son and u.

take care.

kindly do not hesitate to call me. Homeopathic is still a stronger medicine then any other.

Just believe this doctor is not a ordinary doctor. Homeopathic medicine is very narrow and fine perfectly given medicine will only be help not ever doctor be a good doctor in this.

kindly trust me and send all your reports to my email id and call me i would be glad to speak with you.

thanks.

Kindly send your reports to me.

regards

charlin

kevinjoseph51@gmail.com

Like/Dislike
0

Hi Iam charlin Joseph from India. Iam suffering from ankylosing spondolyssis a disease also starts as fusion to the spine and later other joints. I tried lot many alopathy medicines. Since for these arthritis disease related to spine and joints they have no medicine yet to cure this fatal disease.

I was in pain for 1 year hardly walk or stand even. However, My life changed after taking Homeopathic medicine and got out from this fusion and inflammation in 8 months time.

kindly test these treatment with even no side effects and strong medicine. kindly trust me every homeopathic doctors are not same. I got well through one doctor who is researcher he is prof. who given me medicine just exactly for ankylosing spondolyssis. Through is wast knowledge about the medicine and treat ment i got well, of course by gods will and kindness. All my joints were so badly inflmmated that i could even breathe properly because of the severe pain and almost could not sleep for 3 months but now i got well and sit on internet atleast 4 hours every day to reach out people who suffer with this grave disease.

rheumotologists had advised me inflixicabe and remicade and all other TNF blockers which will take out inflmmation for some time which is not guaranteed that too with a risk of guaranteed side effects.

Believe me i suffered a lot and iam 30 years old age. like your son my father was so concerned about me but now he is very happy since iam totally out of this disease.

god has given me new life and i will help others.

my phone number is +91+9043577630

email ( kevinjoseph51@gmail.com

regards and god bless your son and u.

take care.

kindly do not hesitate to call me. Homeopathic is still a stronger medicine then any other.

Just believe this doctor is not a ordinary doctor. Homeopathic medicine is very narrow and fine perfectly given medicine will only be help not ever doctor be a good doctor in this.

kindly trust me and send all your reports to my email id and call me i would be glad to speak with you.

thanks.

Kindly send your reports to me.

regards

charlin

kevinjoseph51@gmail.com

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Great article- thanks for sharing!

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Hi i have AS for the last 8 years.I was diagnosed with blood test i have that gene HLAB27.some people can have this gene but may never show signs of AS.At the early stages i had swollen knees and pains in my hips neck back ankles and and lossed a lot of weight.I was put on humira and methotrexate for AS.These medications have helped me alot.I attend my Rheumatologist every 6 months now.It is very important not to stop take any medication with out speaking too the doctor.remember it takes time for any medication to work.Im 38 year old female i have had 1 total hip replacement done 4 years ago i find swimming is very go for AS plus stretching exercises and walking is help full.At the moment im doing great.I too was very angry when I was diagnosed with AS now i have learned to live with it and i ask plenty of questions when i visit my Rheumatologist.
AS is a form of arthritis theres no cure for it at the moment.My brother also has AS and he is not on any medication at the moment he swims alot and finds stretching also helps.

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Hi I am 48 years old and have suffered AS for over 32 years, although my Doctors never diagnosed my condition until I was 31, during this time leading up to diagnosis I have suffered excruciating and immobilising pain in the form of Sciatica muscle spasms and chronic fatigue through lack of sleep. It has affected my work , family life and day to to day living. the early days before treatment were the most darkest days imaginable. However when my Dr Le tocq, from the priory medical centre in Warwick UK sent me for blood tests this was the start of a change for the better, up until this point I had no idea what I was suffering from and became very depressed, However when the results returned the Dr told me I have a receptive Gene called HLAB27 which causes Ankliosing Spondalitus,

Finally I had a name for this crippling disease, and from this point my life started to change for the better, I was put on a course of anti-inflammatory, this took a while to find the one that best suited me, I have now been taking 90 mg of Etoricoxib (Arcoxia) since the age of 33. I am able to lead a fairly normal life my work is very important to me and I am able to enjoy most activities without pain.

However I do suffer from the occasional flare ups as I am this day and have had to take a week of work to recover but this is the first time I have had to do this in quite a few years, as I am taking a stronger anti - inflammatory drug which makes me drowsy and therefore I am unable to fulfil my Job as a Bus driver/ senior mentor with my company. this is just a minor glitch and I know I will soon be on the road to recovery.

On occasions / extremely rare occasions I can also suffer with uvietus, which is a flare up of the Sacroiliac membrane of the eye fluid. this will cause permanent damage to your sight if not treated within a few days of contracting this ailment. if your eyes / eye becomes red and inflamed and sore seek medical advice and let your ophthalmics know that you may be suffering from Uvietus, due to AS.

I urge all sufferers of this debilitating disease to seek medical help as soon as you have any of these symptoms above I used to be in denial of the pain at an early age (16/17) don't suffer in silence get the help you need from your Dr s, get tested for HLAB27 and conquer this disease. don't let it ruin your life as it nearly did mine.

Hope these comments are helpful to you if you would like to email me for a chat etc about this disease please contact me colt.gough@sky.com

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This is my question: Can you be tested for the HLAB27 gene & have a negative result but still have AS? My son tested negative for the gene but he has the recurring back pain, stiffness etc. He also has had a bout of Uvietus which, thank god, was treated successfully. He has been diagnosed with Ulcerative Colitis & a recent flare-up caused a great deal of joint pain, back pain. He improved with a course of prednisone. So is it AS, Ulcerative Colitis or both? Any comments would be welcomed.

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