Patient Comments: Ankylosing Spondylitis - Treatments


What was the treatment for your ankylosing spondylitis? Submit Your Comment

Comment from: ManlyOscar, 25-34 Male (Patient) Published: May 15

I recently got strep throat. I had noticed that a gland by my neck was swollen but since it wasn't painful I didn't think much of it. After about a week I started getting excruciating pain in my throat, I couldn't sleep because it hurt so much. About 3 days later I went to the doctor and was diagnosed with strep throat. I was given a strong dose of penicillin to take twice a day. It's been the third day on the antibiotic and the pain has gone away for the most part. I'm really happy with the results and I am sure I will be better after the 10 day dosage. If you believe you have strep, you should contact a doctor immediately. The symptoms I had included: swollen tonsil with white pus on it (used my phone flashlight to check) and swollen lymph node. Good luck and I hope my experience was helpful to you.

Comment from: jojo, 55-64 Female (Patient) Published: January 22

I have had enormous pain for years, and until diagnosed 3 years ago with ankylosing spondylitis, was told adamantly there is nothing wrong with me. This was hurtful, as I could not participate in sports, or stand for long, no one believed how much pain I was in. Also being female, menstruation was a nightmare, and when I was forced to participate in sports, I was further exhausted, and scared of doing more damage. I recently had rib pain, diagnosed as nonalcoholic liver. I am HB negative, I was diagnosed when I had extreme back pain at menopause. I was told to use NSAIDs, which I refuse to use; the side effects killed my dad. I was told there was nothing else for me, but since menopause I am basically mostly pain free, as long as I can rest when it gets too much. I cannot work full time. All of the practical steps to live with this condition I already do, stretching, resting, moving as much as I can, walking in water, not overdoing it, I use a grabber, have to take my time getting up from lying or sitting, I sleep flat on my back, in a wooden slat bed, which in the long term has been a godsend. So although my diagnosis, came with a warning that it would only get worse, it seems that momentarily anyway I am mostly pain free! I also take mini aspirin, metformin and blood pressure tablet for diabetes. I am thankful every day I feel well, and mostly pain free. I should have had a hysterectomy years ago, but this is not allowed here by the government.

Comment from: Xmas surprise, 25-34 Male (Patient) Published: December 29

Our Christmas tree had been up for 6 days and looked beautiful. On the 7th day the floor at the back of the tree was full of dark brown bugs. They appeared dormant for a time, then they started crawling up the drapes, they were ticks all in the presents, all over the gifts. I don't know what stage they were in, they must have been on the tree. Christmas horror!

Comment from: Sbrown, 55-64 Female (Patient) Published: December 15

I have real bad hemorrhoids. I did remove some pulp, but I have bleeding continually, though I don't have pain. I stick to alkaline diet, lots of fruits, green juice and dandelion tea. I have no problem for bowel movements, just bleeding is my only problem. I don't eat meat only spelt flour, quinoa, black rice, lots of mushrooms, and coconut. I use a lot native products only, I am doing great except for bleeding.

Comment from: Gert, 25-34 Male (Patient) Published: November 06

It is difficult for me to imagine that psoriasis appears at my age (66)! Currently I am using betamethasone ointment and it has helped. It has curbed most of the breakout and I will know more when I go back to the doctor in December.

Comment from: Taylor, 45-54 Female (Patient) Published: August 17

I was prescribed biologics for ankylosing spondylitis. They had awful side effects and did not help with the pain level at all.

Comment from: shoeb, 25-34 Male (Patient) Published: July 18

My 5 month old baby suffers with seizures. He gets seizure for 15 minutes every 5th and 6th day. He is on medication like Eptoin, Gardenal, ibuprofen, and paracetamol. When he gets a seizure he flexes his limbs and has blinking or rolling eyes, and changes his facial expressions. In ultrasound scan finding doctor says his third ventricle is more prominent than normal. All his blood tests are normal.

Comment from: mfink1982, 25-34 Male (Patient) Published: March 08

I cannot find any relief for my ankylosing spondylitis. I have chronic pain all the time, and it is affecting my life drastically. The pain is unbearable. I lash out at the ones I love and have even considered hurting myself. The last doctor I saw told me he thought I was a drug seeker. I told him if he felt what I was feeling he'd be looking for something to help him out as well. He asked me to leave his office. That's our system, USD 300 month to get no help and your character assassinated.

Comment from: CatCo, 55-64 Female (Patient) Published: May 27

Diagnosed with ankylosing spondylitis in 2007 I was told, 'for you there is no happy ending.' Relegated to a pain management specialist for palliative care, I was given narcotic pain relievers, prednisone, an anti-spasm drug, and frequent epidurals. Not willing to file for disability and take to a wheel chair as suggested, I began my own treatment plan. I changed my diet radically, began to exercise as able (this quickly improved), and weaned myself off all prescription medications. I lost over 64 pounds, and became very mobile. I keep the weight off. I control pain with OTC NSAIDS. I am now 61 and a hiker. I strength train at a gym, do water aerobics, and walk miles daily. For me, it was either suicide or change. I chose change.

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Comment from: hopingforthebest, 19-24 Female (Patient) Published: February 04

I was diagnosed with ankylosing spondylitis (AS) about 3 months ago and am currently working with my rheumatologist to find the best treatment. When I was a senior in high school I experienced excruciating pain in my back that would last about a week, about 2 times a year. This past year (senior in college) the pain came back but a little duller. One day I hurt my foot and then the pain never went away. It lasted about a month until I went to a podiatrist who did blood tests and found I was HLA-B27 plus. I have been on sulfasalazine, Celebrex and prednisone. The pain and swelling in my foot is now minimal but now I am experiencing pain in my hip and lower back. I'm meeting my rheumatologist in 3 weeks, hoping for the best.

Comment from: Svyogini, 35-44 Female (Patient) Published: July 30

The only thing that has helped me with ankylosing spondylitis is following the guidelines of both the Paleo diet and FODMAP diet. It works like magic. I go off of it and get leveled with pain.

Comment from: martin1874, 45-54 Male (Patient) Published: May 14

I am a 46 year old and have had ankylosing spondylitis for 25 years. No matter what I take my condition gets worse I have been given high levels of Oxycontin which I am now addicted to.

Comment from: Susan, 45-54 Female (Patient) Published: January 28

I was diagnosed in 2005 with ankylosing spondylitis (AS) and ulcerative colitis. I removed all starch from my diet and I am pain free. I use diclofenac when running races (which I couldn't do before eliminating starch). I read a book on IBS (irritable bowel syndrome) and low starch diet. Resounded with me so it might do for you.

Comment from: Jan, 55-64 Female (Patient) Published: July 07

I have been taking Lexapro, and doing stretching and cardio for my ankylosing spondylitis, I've been trying to avoid heavy drugs.

Comment from: helenb, 55-64 Female (Patient) Published: May 20

Recently, I was diagnosed with inflammatory spinal disease. I have suffered on and off for years with back problems starting in my early 20s when I was told it was sciatica. I also suffered for years with excruciating spasms between my shoulder blades, for which I was given quinine sulfate but no diagnosis. I also suffered from hip pain off and on too. After putting up with lower back pain for many years, receiving painkillers, and anti-inflammatories, I finally asked for a referral to a rheumatologist. This happened for two reasons: my daughter started suffering from the same “between the shoulders” pain and was referred very quickly; and due to the fact that I had had to take off lots of time from work because I couldn't move because of the pain and, literally, my legs wouldn't hold me up. My daughter was told she had the HLA-B27 marker and that it was hereditary. This is the main reason I asked for a referral. It was confirmed that I have AS with bone spurs attached to the next vertebrae in my lower back and between my shoulders. I was assessed by a physiotherapist a few days ago, who told me I also have a scoliosis on my right side. So glad my daughter is receiving the help I wish I had received years ago.

Comment from: thush, 35-44 Female (Patient) Published: October 31

My first symptoms of ankylosing spondylitis started when I was 24. I got this terrible pain behind my ears. When I went to my family doctor he said I am getting my wisdom teeth. But I never did get any wisdom teeth. After 6 months I got a back ache, then stiff neck. I consulted a doctor, and he gave me some pain killers and I was ok for about 4 months. Then I got a red eye and my eye specialist gave me some drops. Then I got this unbearable neck pain again. I told my doctor to do all possible tests. He took an X-ray of my neck and said I have cervical spondylosis plus extra upper rib. After two weeks I went to see the same doctor since I developed a pain on my heel. He said it's impossible, he told me to continue with my exercise. Nothing helped, doctor after doctor, I was feeling that I have fever, but no temperature. My blood test shows that I am anemic so my family doctor gave me iron tablets. I have to say I am a vegetarian so my family and friends said it's due to it. For last three years I feel tired all the time. But I manage to do all my work still doing it. Last year my right eye got red again so I went to see eye surgeon. She gave me some medicine, and I was ok. But within three days I got it again. My eye doctor said to stop my shampoo, etc. And gave me some more drops. Again I got a red eye within two weeks , and this time my eye doctor asked if I have any back pain I said yes, and she asked me why didn't I tell her beforehand (how am I supposed to know there is a link). I was referred to a rheumatologist .Now I know it's not my mind. At least I am mentally OK though I am depressed. Only thing that helps me is pain killers, heat pad, sleeping on the floor, flat surface. I do exercises regularly. I don't get proper sleep.

Comment from: Z, 25-34 Male (Patient) Published: March 30

I injured my sacrum when I was 15. From then until my AS diagnosis at 28 my pain became progressively worse. I remember at 24, there was a spike in pain and (looking back) the start of noticeable AS symptoms. It is so embarrassing being so young and not able to move like everyone else. Or you cannot go out on Friday night because you literally cannot get out of bed. I follow the paleo diet, avoiding starch at all cost. Tremendous helper. I have also been following the Marshall Protocol for the last 6-months to treat my AS. I went from being so stiff I could barely get out of bed-to-only needing 200mg of Advil every 24 hours to keep my inflammation down and live my daily life. 1 day after starting marshall protocol, my inflammation noticeably decreased and my left Si slid back into joint when I got out of bed. Up until then, we thought it was fused.

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Comment from: citycowboy, 25-34 Male (Patient) Published: March 20

I was struck down with ankylosing spondylitis at 24. It hit me over night, the worse pain I have ever experienced. I am now 33 and still suffer chronic back pain just about every night. I am lucky to get 4 solid hours sleep a night and sometimes I just don't get any as the pain is unbearable. I saw the specialist and was put on mobic - these didn't even ease the pain, I was told about an injection (daily) and I am yet to be put on this treatment!!! I feel for anyone who goes through the pain I do, I wouldn't wish this on my worst enemy and believe me I hate the pr*ck!!!!!

Comment from: S.Saad, 45-54 Male (Caregiver) Published: February 08

The 13 years I've been married to my husband, he's had this disease. He just found out a month ago. The great thing is, he's started on Embrel and he's a new man. He can turn his neck, he's sitting up straighter, has no pain, He moves without the stiffness he used to have, and even his bm's are normal now(he's always had diarrhea). When he told the dr. that he's having normal bms for the first time in years she tested him for chrohn's disease (which is a symptom of this disease), which came out positive. She did say she was going to change this med. for another one similar to Enbrel but is easier on the digestive track. There is hope! I'm so excited that my husband can move again without pain!

Comment from: forester, 45-54 Female (Patient) Published: January 19

First symptoms when I was 22. self-treated symptoms w/ ibuprofen. Diagnosis at 33. Lucky to have the best rheumatologist in the state. Started with Rx NSAIDS but had stomach problems, plus they lose effectiveness after a while. Now on Remicade. Have had arthroscopy on two shoulders and one hip. Been down many times but I keep getting up! At 49 I still work as a forester on rough ground. I still camp. KEEP MOVING, KEEP STRETCHING, don't let anyone tell you no.

Comment from: no break in pain, 25-34 Female (Patient) Published: November 30

I am 33 year old female who wasn't diagnosed until I was 22 years old. Symptoms started when I was 16. In the beginning doctors tried steroid injections and pain pills. Today they use steroids when I have a really bad flare up, naproxen twice a day, pain pills 6 times a day, Humira once every other week, muscle relaxers, and I try to go to physical therapy but most days are too painful. I also have the eye inflammation and fusion has already started in my back and ribs. I'm a single mom and most days I'm so tired I can't do anything, but what I have to for my children. My neck hurts so bad that I can barely turn to look at anything. X-rays don't show any damage there yet but I'm waiting because I know it's happening. I lost my insurance and my doctor helped me be able to stay on humira by writing the maker. Hope this helps someone else who's struggling to make ends meet and just trying to feel better with whatever they can. :)

Comment from: pammyb, 25-34 Female (Patient) Published: November 08

I am a 28 year old nurse, diagnosed about 2 years ago with AS. I have had pain since I was 17 slowly increasing to the point I could not walk. Once diagnosed, I was prescribed naproxen that did not work for long, then celebrex for about 6 months twice a day. I am now on the mobicox and seems to work well, exercising regularly and a lot of stretching seems to help. For those who don't want to take a lot of medications, research foods that decrease inflammation or increase. Tumeric is great for joint pain and also sweet potatoes or yams have one of the highest anti-inflammatory scales. Try incorporating them a few times a week. I have found adjusting my diet, quitting smoking, biking or swimming can really help with physiotherapy; chiropractic (no adjustments, just pressure release) and massage have all be blessings. I have more good days now then bad, and able to manage much better. Keep moving!

Comment from: John, 65-74 Male (Patient) Published: September 02

I was diagnosed with a/s when I was 23 years old. I was treated with pills which did little good and then put on aspirin for a long time. This helped a bit and I stayed fairly active. When I finally had to quit work (mechanic) in 1991 I could no longer the pain of walking or standing for very long. I was sent to a number of Doctors with not many results and ended up in a wheel chair for some time. I was sent in 2008 to see a great Rheumatology doctor who put me on a program of self administered needles of Humira. I have done very well since then. My life style is back to where I can enjoy it much better. I have the usual side effects of a/s but learn to live with them. I wish I could have met this Doctor 50 years ago. Life would have been much less painful.

Comment from: Suzanne, 45-54 Female (Patient) Published: August 17

I am 50 year old female with symptoms that started around 17 years. I was diagnosed just five years ago-my rheumatologist suggested that I 'must have suffered' as my pelvis is fused. Pilates, swimming and sunshine help! I take Ibuprofen when the pain is unbearable, but recently my hips are causing me extreme pain; it wakes me up and my bed feels like a torture chamber. I am also experiencing menopausal symptoms and am suffering from night sweats, which also disturb my sleep. Fatigue is part of AS and I'm exhausted. I thought my teens and twenties were painful, but now I'm faced with a nightmare. Thought has improved with age!

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Comment from: James, 25-34 Male (Patient) Published: March 02

Hi my name is James; I am a 25 year old with A.S. I started having very bad sharp pain when I was 17, and lasted for a couple of years. My whole body has changed throughout the years; from my spine being fused together, and having very limited mobility. I had a total shoulder replacement when I was 23 which help with the pain, but my mobility is very limited. I have been taking Celebrex twice a day since I was 18, so I could function daily. I try very hard to be active and mobile, but it's very hard with the chronic pain. Meditation is great to clear you mind, and help you bear with the pain. Anyone with A.S. I wish you the best, and hang in there! (I know it's hard) =)

Comment from: singmom, 25-34 Female (Patient) Published: February 14

I have had AS for a few years, and all my doctor tries is cortisone shots in my joints, naproxen, and pain killers. But being a single mom, I can't take many pain killers. Then again, I am so busy with kids that some days that's all I want! AS has now caused problems in my right eye, which were so bad a specialist had to put a needle into my eyeball. I was too young when I was diagnosed and am not yet 30, but I feel as if I am 60. I am hoping for someone to find a cure.

Comment from: mroberts, 45-54 Female (Patient) Published: May 09

I have ankylosing spondylosis and fibromyalgia, I was recently told about Neurontin, why am I suffering when the old drugs are around! (I had Lyrica.)

Comment from: mou, 25-34 Male (Caregiver) Published: October 15

I am giving tablet salazine 500mg 6 tablets, capsule Reumacap SR 2 capsules, tablet Napa Extend 6 tablets per day.

Comment from: JEFF, 45-54 Male (Patient) Published: February 04

I am a 47 year old male and have been living with this disease for a little over 28 years. The best advice I have for anyone who suffers is to stay active. Do not let this disease rob you of a single day. This has fused the bottom half of my spine but I am a carpenter and even when I'm in great pain I get busy. This disease dislikes constant mobility it would much rather keep you down. Don't let it. Fight the good fight

Comment from: Vinit, 35-44 Male (Patient) Published: December 10

I am 32 years old and have had occasional back pain since my teenage years, which I always brushed aside as hereditary as even my father experiences stiff back at times. 3 to 4 years back, I had a little severe back pain, for which I visited an Ortho who prescribed some medications and these reduced the pain and I went back to normal, with some occasional back pain. I never took any medications for these occasional pains. Six months back, I had very severe back pain and spasms which were unbearable, and the Ortho again prescribed some painkillers and tests. These tests showed HLA B27 positive and DNA antibody positive. The ortho pinned it as Rheumatoid Arthritis and prescribed a new set of medicines and suggested physiotherapy and exercises. I have an accounting job and physical activity is absent. With these medicines, I experienced relief in my back pain but after some time, my right buttock started having pain whenever I slept on my back. This pain increased with every physiotherapy and exercising days and I paid a visit again to the ortho. This time he asked me to pay a visit to a Rheumatologist. I could not get an appointment for two weeks and during this time, the pain increased to both buttocks and now it pained severely in any sleeping position. In short, I could not sleep properly for these two weeks in spite of taking the painkillers. Finally I got an appointment. After 5 hours of wait and a few reports, all he took was an 8 minute study to diagnose the issue. He confirmed it was not Rheumatoid Arthritis but Ankylosing Spondylitis (his reaction told me that is better than Rheumatoid Arthritis). He has not prescribed new set of meds and once the pain subsides, I have to start jogging / swimming. Though he did not ask anything about my smoking, I think it is now time for me to stop smoking. My advice to others is be patient because it will subside with rest and medicine. Please rest when it attacks and do not try to fight it i.e. do not work with painkillers.

Comment from: harshad, 45-54 Male (Patient) Published: October 26

I am 46 years and was diagnosed with ankylosing spondylitis recently, as a 16 year old I got my first severe attack and was hospitalized and traction applied to both my legs as i could not move. Over the years I used to suffer severe pain while moving, squatting. Then I started weight training and the pain subsided and I am able to do all the chores normally. I do yoga for stretching the back and some weight training to strengthen the muscle. My spine is still not fused. I am not taking any pain killers as of now.

Comment from: Greg, 55-64 Male (Patient) Published: September 26

I am 58 year old male with AS. I was diagnosed in 2003, but had the disease much longer before that. I have visited a Chiropractor for back pain, since 1977. But this isn't your typical snap, crackle, and pop type Chiropractor. His technique is non force directional. It helps tremendously, but I continue having lots of pain and problems. I also have a prescription for Sulindac from my general doctor but I don't take it. I use Ibuprofen mostly. I am afraid of stomach problems from anti-inflammatory medications. Lately my ankle has been extremely sore, swollen, and hurts. I am going to a Podiatrist to have it checked out.

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Comment from: JohnO, 45-54 Male (Patient) Published: August 17

I was diagnosed at 27 years old and have been through Humira Remicade Enbrel Symphony and just about everything else. My pain is constant 4 hours a day. In August 2008 I decided no more Vioxx Celebrex and I started running. I lost 25 lbs. I haven't had any anti inflammatories except Advil in years and am running my 6th half marathon this year. It really has helped me through the pain. One doctor said don't run the other said do run. Now they think it has worked for me.

Comment from: rcatlady64, 45-54 Female (Patient) Published: June 30

I have ankylosing spondylistis and was diagnosed in 2004, I have tried the nsaid enbryl and humaria unfortunately I'm allergic to both. I'm trying to manage it with diet and exercise, but do have inflammation of the eyes which is interfering in treatment of the eye disease I have which is cornea warping so I'm struggling with all this right now. I'm a 46 year old female, who is trying to get by, do have pain in hips, knees, spine and ankles. I do have curvature of the spine and to added to the rest of the problems was born with scoliosis.

Comment from: mother, 25-34 Male (Caregiver) Published: April 04

My son was diagnosed at 22. He suffered the most severe pain, eventually. He was given a high dose of vitamin D, which has made all the difference. I trust this info may help some of you, as my husband suffered terribly and became totally bent over and stiff as result of the disease.

Comment from: donegalmike, 55-64 Male (Patient) Published: March 20

I've had multiple treatments over time. I am 62 and have had two replacement surgeries of the same hip. I've also taken many anti-inflammatories, like ibuprofen, Vioxx, Voltaren, Naprosyn and currently Celebrex. I've also had physical therapy, chiropractic work and have done stretching. I occasionally take Norco for pain.

Comment from: Sagar , 45-54 Male (Patient) Published: February 01

I am 47 years old male and medical doctor. I got the disease when I was 16 years and I am taking Nimesulide 100 mg even three times daily to cope from pain. Since 2009 I am having Iritis on and off and treating with steroid eye drop, for IBD taking antibiotics, but no cure. Getting very tired of this disease. Sagar, Nepal

Comment from: monkey, 35-44 Female (Patient) Published: January 12

I had no problem with any kind of pain until I slipped and fell on my kitchen floor when I was 27. My Docs think I'm crazy but all my symptoms started when I fell. That's when the pain in my hip wouldn't go away after a year and half they discovered I had A.S. unreal never would of known or maybe it would of came out later in life maybe never.

Comment from: kwilty61, 45-54 Female Published: June 20

I was diagnosed in 2008 after 3 years of going from dr. to dr. I take Enbrel, gabapentin, lyrica, naproxen. I also take flexoral and ambien so I can sleep. Otherwise the pain wakes me about every 90 min. In addition, I take tramadol ER at 4 times the normal dose, plus an extra 100mg as needed for breakthrough pain. I have had a spinal cord stimulator for pain control put in my lower back and one in my neck. I also had to have shoulder surgery. After all this, I still can only walk with forearm crutches for a very short distance and otherwise I use a scooter. On a good day I can take a load of laundry out of the dryer, on most days, I can hardly take a shower. My entire day focuses on managing my pain and mobility difficulties.

Comment from: jc, 35-44 Male (Patient) Published: April 14

I am a 40 year old male diagnosed a.s three years ago. I've suffered since early childhood. Hip, low back, sternum, ankles, now my neck and knees oh yeah eye problems. The pain is relentless and seems to be worsening. I've found relief with humira, but no insurance. The shots are expensive even with insurance. Recently I'm using methatrexate. I also wear a duragesic patch and take oxycodone for break through pain. Seemed to help for the first year. Besides being a slave to the meds, they stop being effective. I was up all night in pain. I'm tired and want this to end. I'm sorry for all who suffer this cruel fate.

Comment from: Naise, 35-44 Male (Patient) Published: February 14

My name is Anthony and I am 37. I was diagnosed with A.S in 2000. I had herniated 4 discs in my lower back. Throughout treatment for my discs my doctor took a blood test and it was determined that I had A.S. Every day is different as far as the pain goes. Lower back stiffness in the morning and neck, lower rib pain throughout the day, all day every day. My left ear rings as well as my left eye aches. My hips feel as though they are out of socket and are in constant pain. The weather also affects me on a daily basis. I have tried most modern medicines and some eastern medical procedures as well. It's a very odd disease and I hope to get it under control.

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Comment from: Sagx, 25-34 Male (Patient) Published: February 11

I was diagnosed with AS when I was 29, male. It started in my early 20's but was told it was a torn rotator cuff. I'm now on 50mg of embrel once a week. I go to a chiropractor every 2 weeks. I try yoga a few times a month when I'm not in too much pain. Sometimes the pain is so bad I have to call in sick. This has no pattern yet every day I've found is different. I try not to do too many activities to that would aggravate the ankylosing spondylitis. I do regular stretches every half hour as directed by my dr.

Comment from: Chee, 25-34 Female (Patient) Published: January 31

I have been on Enbrel as much as can be afforded. It has been the most effective treatment but very hard to obtain without insurance. I am currently on NSAIDS because of affordability and experiencing a lot of pain and limited range of motion. I can't get Enbrel without insurance and I can't get insurance because of my pre-existing condition. My only option at this time is pain.

Comment from: dave williams, 45-54 Male (Patient) Published: October 31

I have found that cutting starch from diet has made a huge difference to my ankylosing spondylitis. No bread, rice, potatoes. Changed my life!

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