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TracyLynneTTracyLynne Posts: 598
edited 06/11/2012 - 8:19 AM in Arthritis, Osteoarthritis
I was tentatively diagnosed with a form of spondyloarthritis and have started on Fluriprofen (Froban), an NSAID that seems to be helping me a lot with the joint pain and some of the connective tissue pain.

For anybody out there who has been through the investigative route with figuring out WHICH spondy it is and WHICH meds ultimately work the best, what can I expect? I see the rheumatologist again on the 31st to review the three week trial meds.

Thanks for the input.




  • spodyloarthritis? How is it going with the fluriprofen so far? Has the swelling in your knees gone away? Or did you get an explanation from your doc?
  • It's easier to cut and paste the answer! ;)

    Yes, the flurbiprofen is doing a good job, though today it's cool again and I can feel the SI joint and low back pain more than I have since I started the new meds. The swelling has settled down, and I see my doc today, so I'll talk to her then.

    I had a call from my rheumatologist yesterday, and she was thrilled to hear that the new NSAID is working; she said it works VERY well on enthesitis, which she believes is part of why I get such widespread pain. I see her again on July 31st for follow-up and "our next step", as she said. I'll keep you posted on how things are going!!


    "The term spondyloarthritis (also known as spondyloarthropathy) covers a group of closely related inflammatory diseases including arthritis of the spine (sacroiliitis or spondylitis) and peripheral joints; as well as inflammation in the area where ligaments and tendons attach to bones (enthesitis or enthesopathy). These diseases can cause pain in the spine, legs and arms as joints, ligaments, and tendons become inflamed and/or predispose patients to spinal vertebral fractures. Skin rashes, eye, and intestinal problems can also occur. Diseases that fall under spondyloarthritis umbrella can include: 1) ankylosing spondylitis ; 2) reactive arthritis (known previously as Reiter's syndrome ) 3) psoriatic arthritis and psoriatic spondylitis, and 4) the arthritis or spondylitis associated with the inflammatory bowel diseases, ulcerative colitis and Crohn's disease. Still other patients may develop undifferentiated spondyloarthritis. This means they have symptoms or signs of one of the illnesses above, but don't develop the full blown disease."
  • hi,
    i have severe spine pain, and i say spine pain and not back pain because it doesnt cover my whole back but just my spine and the pain follows my complete spine. i have so many other symptoms and i havent ever got a good clear diagnosis. my 1st cousin was dianosed with AS a couple of years ago. we share so many symptoms. can you please share some of your symptoms please? if you want to please feel free to email me at Karen.L.Caudill.CTR@sofsa.mil thank you so much!

  • I left a post under your "Remicade" topic, too. But i just wnated to say basically that I am glad you are responding to the new anti-inflamatory. I am fairly new to treatment for auto-immune arthritis,as well. But the first disease modifying drug my Rheumy gave me was methotrexate. (It is the oldest and cheapist, but I am responding to it.) I learned a lot about treatment, prognosis, etc. from the Arthritis.org web site. Good luck and glad to hear you're on the right track! Marti
  • Has anyone had muscle spasms in their lower back or spine
    from arthritis or from facet joint disease? I just had severe spasms and it always makes me afraid. I took a
    skelaxin and hope it works. Would appreciate any replies.

  • I suffer from a lOT of spasms; I'm actually still enjoying quite a bit of relief in my SI joints and other joints with the Fluriprofen, but the spasms have returned with a vengeance.

    Marti, my next step will be to add sulfasalazine or another drug (I can't remember the name). I'm hoping it might help with the soft tissue pain; the enthesitis pain is pretty nasty at times.

    Thanks for all the input.

  • Tracy,

    I can't begin to tell you how thrilled I am that this specialist has been able to turn the corner for you and give you some much needed relief. It may seem dorky but when I think of all you've been through and what this new doc has accomplished in such a short time, I get this phrase in my head "Yes Virgina there IS a Santa Claus". Tracy you have found your Santa Claus!

  • Tracy,
    I have never participated in an on line post before, but just happened upon this web site and read your note and felt I should write this. I have battled spondyloarthritis since 1976, though it was not diagnosed until 1989. Back in the early stages of the disease, I would see an opthomologist for the Uveitis (inflamation of the iris and membrane of the eye), a dermatolotist for psoriasis and all kinds of doctors for the back pain, but back then they didn't know they were all connected. Once they diagnosed Spondyloarthropathy, they started medications.

    In my case, the original diagnosis was based on blood tests, x-rays of the hips and spine and tests the Rhuematologist did. I am HLA-B27 positive and had the distinctive wear pattern in the hips. That, combined with my medical history and the movement tests lead him to the diagnosis.

    As far as treatment, I was by 1989 already past the point of physical therepy being of help (so much degeneration of the joints had already occured), so we relied on NSAID's (nonsteroidal antiinflammatory drugs) and DMARD's (disease modifying anti-rhuematic drugs). The first DMARD was sulfasalazine. It seemed to help at first, for perhaps the initial 6 months, but then nothing. We then went to methotrexate pills, and they did nothing. By 1990 I was completley disabled and fully miserable. The only relief I had was through narcotics. Finally in 2000, I was allowed to get Remicade, and it worked wonderfully. I still call it my miricle, even though on the sixth infusion I had an allergic reaction and had to go off it.

    This is getting long, so will cut to today. I have been doing Humira injections combined with methotrexate injections for the past 7 years and it has controlled all the auto-immune problems. I don't have flare ups, the pain is a tenth of what it used to be, I can sleep at night, sit in a chair for longer than 15 minutes, drive a car, dress myself, walk without a cane (actually two canes by 2000)---all the things normal folks take for granted.

    I don't know if any of this is of help or value to you, but if your doctor decides you have spondyloarthropathy, ask them about the biologics like Humira and Remicade. They worked beautifully for me.

    Good luck.
  • Hi Randy and welcome to Spine-Health!

    I just noticed that this was your first post and I wanted to give to you a big S-H welcome. You may want to post your story under the New Members Forum, so more readers will see it there. And wow, that's quite a story! You have certainly been through a lot. Thank God you finally found a combination of meds that helps you and keeps your symptoms under control. I have wondered about the newer biologics, but have only been on the MTX about 6 months.

    Thanks for sharing with us. And we will be here for you, as well. You will find many caring people here who will always lend an ear or a shoulder. I am sure Tracy will be along soon, and will be wanting to chat with you. Also, I am usually here, or you can send me a PM and I will get back to you. Take care and God Bless! Marti

  • Randy, that's exactly the info I was looking for - thank you SO much!

    I haven't had too much trouble with my eyes; just occasional redness, dryness, etc., but nothing major. My HLA-B27 was negative, but I like to be one of those elusive 10% that have "different" symptoms.....

    I, too, had all my tests reviewed, and it was a lot of my movements that sent up a red flag, as well as my history as a young girl with stomach/GI issues and knee problems.

    I will try sulfasalazine, then doxycycline. If THOSE don't show improvement, then I go to the next step on the ladder. This doc is a teaching doc for a big hospital and she runs an orthopaedic clinic for spinal disorders, so she is amazing. She's already given me the rundown on what order she'll try the drugs, and is very happy so far with the results of the Froban.

    Thanks again, Randy; feel free to PM me with any other info that would be helpful. I've been doing some reading, but I always like to hear the "personal" side of things, too. I'm SO happy to hear that you've had some good relief - that's all we can hope for!!

    Thanks everyone else for replying, too; I appreciate the input!

  • The Flurbiprofen made a HUGE difference for almost two months, but I have suddenly had an AWFUL setback with SI joint/buttock/lower back pain that has been pretty unmanageable the past 10 days or so. I am supposed to be moving on to Sulfasalazine, but the research I've seen says it does NOT help with low back or SI joint pain....that's where I need the help most.

    The spasms are crazy in my back, buttock and where my hamstring attaches below my butt, which has made sitting, standing and walking all difficult.

    Randy, if you're still out there, did you have these brutal setbacks that would eventually settle again? I had my hopes SO high with this treatment, and now I have that fear grabbing at me again.

  • Hi tracey,marti........anyone.i just wanted to ask yous if ever yous had trouble with breathing..like even little short gasps of breathing then changing to severe shortness of breath with a cough?..........juat wondering.thanks guys
  • Hiya Marie, >:D<
    The only time i have trouble breathing is when the pain takes my breath away :''( . As for coughing NOOOOOOOOoooooo, its pulls on my back to much :O . Sorry I cant help you, >:D< PM me anytime.

    Angie x
  • vivavegas said:
    Hi tracey,marti........anyone.i just wanted to ask yous if ever yous had trouble with breathing..like even little short gasps of breathing then changing to severe shortness of breath with a cough?..........juat wondering.thanks guys
    I've had that happen when the tissue between my ribs is really irritated; I go to take a breath, and it's very shallow and HURTS like the dickens. We get used to protecting everything by breathing shallow, and everything kind of "shrinks". It makes those big breaths almost impossible because of the pain.

    Does that sound familiar? If not, you might want to check with your doc.


  • Hi,
    I've written before but just got diagnosed with AS. I tested neg. but my symptoms and other tests make me positive. I have been miserable for about 10 yrs but now I have a new RA dr and have new hope! She is great! I also have RA and possibly fibromyalgia on top of the AS. AND just found out I have a really low vitamin D level (average test is 32-100 and mine was an 11!) so the dr started me on prescription strength vitamin D for at least 3 mths to see how I do. If anyone out there has any advice for me I would sure love to hear it!


  • Hello Karenc,

    Thanks much for sharing. I'm really glad your RA has given you new hope. That in itself helps not only the body, but also the mind.

    I hope that by raising your Vit D level you will see improvement.

    I wish I could give you advice, however, I am only now searching for a RA myself. Any advice on how to select a really good RA?

    Take care.

  • RichT,

    Thanks! The only advice I can give is to try to find one that will really listen to you. I know that's probably not what you wanted to hear but I just really got lucky this time but I have been thru so many bad dr's just to find this good one. Just keep going and dont stop until you get some answers and someone to help you get the answers too.

    All the best,
  • RichT,

    Thanks! The only advice I can give is to try to find one that will really listen to you. I know that's probably not what you wanted to hear but I just really got lucky this time but I have been thru so many bad dr's just to find this good one. Just keep going and dont stop until you get some answers and someone to help you get the answers too.

    All the best,
  • I've been searching for someone like her for almost 20 years, and what a treat!!

    She has now decided I have HLA B27 negative Ankylosing Spondylitis, like karenc, with enthesitis.

    karenc - I was diagnosed with fibro in 1999, but have now been UNdiagnosed, as they think the pain is actually enthesitis pain, which is inflammation of any tissue that attaches to bone, which makes sense. Since I started the heavy duty anti inflammatories and the methotrexate, that pain has been reduced immensely.

    To vivavegas - something else I thought of with your cough; do you take any kind of NSAIDs?? If you're not taking a stomach protectant with it, you can end up with acid reflux, which will also give the symptoms you're talking about. I had to double up on my stomach protectant and raise the head of my bed for about a week to ease that off.

    Oh the joys of waiting and waiting and waiting for a diagnosis, eh? :S

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