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Anyone have Ankylosing Spondylitis?

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:31 AM in Arthritis, Osteoarthritis
My doctor just recently told me she thought I may have Ankylosing Spondylitis. She also has diagnose me have some kind of auto-immune disorder. Does anyone have this, or know much about it? Not sure if this was the right place to post this. But from what I do understand, this is a type of arthritis. I have been doing some research on this type of arthritis. It is located in the S.I. joint in the lower back. And can affect other parts of the body as well. Would appreciate any feed back on this. Also, I know that with this there is immflamation. Problem is, I am not able to
take any anti-imflamatories at this time because
they may be breaking my mouth out with mouth sores.


  • Hi Rhonda,
    I just noticed your post.(I am not on-line a lot anymore.) I am sure you are very scared and have lots of questions. I do not have AS, but I know there are others on here who do. Also there are posts by Tracy Lyn, Faith, Randy, discussing AS. (Someone else is saying spondylo-arthritis, which may be slightly different, but sounds similar.) However,I am familiar with auto-immune system disease and I know how it has affected me.

    If you haven't already, my advice would be to make an app't with a good rheumatologist immediately. I waited way too long and that delayed my treatment by years!

    There are many meds other than NSAIDS that can help with auto-immune types of arthritis. So hang in there and keep posting! Good luck to you,

  • Rhonda, I am going through all kinds of medication trials at the moment, as my specialist has diagnosed me with a type of Spondyloarthritis; possibly AS. There are some great websites with information, as well as some support forums where all your questions can be answered.

    I am currently on the maximum dose of Flurbiprofen, an old anti-inflammatory that is not used by a lot of doctors anymore, as well as Methotrexate (22.5 mg every Monday), which I inject myself. I, too, suffer from mouth sores, but I don't know if they're from the NSAID or something else I'm taking. I'm willing to put up with that discomfort because I do get some pain relief from the meds.

    I had some great relief when I first started taking both of those drugs, but I went through a lot of grief beforehand when I had a trial of sulfasalazine.

    Hopefully you have a good rheumatologist who will really review your history and symptoms to determine if this is what you really do have; it sounds like there are a lot of "exceptions to the rule", which is why I have not been "officially" diagnosed with Ankylosing Spondylitis....though the words have crossed my rheumatologist's lips once or twice!


  • Today it was rather difficult getting out of bed. :< Felt like my back was all compressed together. Finally was able to get up, but had some difficulty walking. Was able to take some meds, and was able to get my back stretched out some. Feels a little better, but the weather is also cloudy, rainy, and cool which does my back no favors. I do have to work today, when all I would rather do is rest and take it easy. I) A nap right now sounds really tempting, but instead will be getting ready to go to work. Geuss that is what this Ankylosing Spondilitis is all about. The important thing is to try and keep moving to some degree. At work, I am not going to break any speeding records. I will just do what I can at somewhat of and easy pase.
  • Hi Rhonda, sorry to hear about your possible A.S. diagnosis. This is what I have and it does present challenges getting the correct diagnosis. I find getting out of bed to be the most difficult. That and the fatigue seems relentless and never ending at times. But you sure hit the nail on the head when you mentioned to try and keep moving.

    I have tried all different kinds of anti-inflammatories with varying degrees of success. Currently Im taking enbrel and while superb in the beginning its slowly starting to lose its effectiveness.

    I also find the rainy, cool weather to be bothersome. I hope you have a good Rheumy--its sooo important to try and slow the progression of the fusing because once youre fused there is no going back. ( that said--once fused there is definately less pain-lol)

    If you have any questions or concerns feel free to pm me at anytime. Take care of you.

  • Thanks Shalom! We have been having having quite a few cloudy days lately. And it has rained some here the last few days. Not had too much trouble as far as being real achy and stiff the last few days. But today, feel a bit more achy and stiff than have felt. But will try and keep myself busy. That whole fusing thing does concern me. Maybe fusing means less pain, but it also means less movement too. And I need all the mobility I can get. It is hard to say when or if I will find a good Rheummy. Finding a good one here, is hard to come by. But would like to find a good one. I am fortunate that my AS is not too very sevier. There are days I do feel rather bad, but nothing I can't handle with anti-imflammatories and pain meds when need too. But having a good Rheummy for be great, one who could keep me up to date on what is going on with me.
  • The weather is SUCH a huge problem for me, and we have had a lot of up and down systems this spring!!

    Rhonda, you are right in that keeping up with the stretching and movement is important. You don't want things to fuse together in your spine, so the more active you can stay, the better it is.

    Have you had an MRI on your SI joints? That is where they can truly determine whether or not you have AS. I said earlier that I have "exceptions to the rule", and that is one of them for me; my SI joints are completely abnormal when my physiotherapists work on them, but nothing shows up in the MRI. I've had a lot of uptake show up in the bone scans, but "the" specialists won't take that as the gospel truth, therefore will not approve certain drugs to be paid for by Pharmacare.

    The interesting thing I have found is that with the meds I'm on now, I am slow to get out of bed in the morning, but the stiffness is greatly reduced; it only lasts a short time versus most of the day, so I know the meds are making a difference.

    Take care, and good luck.

  • Thanks Tracy. :))) I have had x-rays and an MRI done, but it has been a while, and nothing real recent to detect AS. My doctor now, did a blood test and got the diagnosis through that. Would love to find a decent rhuematologist. Wonder if I should have some recent xrays and or another MRI done.I think it was the year before I had the MRI done when I found out about the herniated disc. Weather does seem to play a part on how I feel. When the weather is sunny and nice, I seem to do better. When the weather is cloudy and rainy, this particular arthritis tends to bother me more. Not on any particular meds for it other than the occassional anti-imflammatory and or pain meds.
    Not been real active today, and need to get up and do something, so I am not sitting so long at a time. Just been on the computor mostly today, and need to get these body parts a moving. ;))
  • Not sure if it is the weather systems or stress or maybe both, but my back has been giving me trouble lately. My daughter and son inlaw are getting a divorce, and that could be the stress I feel here lately to why my back is acting up.
  • Rhonda, you'll find that every day is a new day. I went on a camping trip with my hubby and had THE best few days with my back that I've had in years. It was wonderful; we did some hiking and had a ball. Unfortunately, I developed a blister, and that blister turned an angry red and was extremely infected within 24 hours resulting in antibiotics for seven days. The methotrexate I'm on affects the immune system, so other things go to h*ll because of it.

    BUT....I had some great days in the mountains, and like I said, my back was amazing. Don't really know why, and I don't care - I just enjoyed it and took advantage of it.

    As I've said before, the weather changes play havoc with pretty well every part of my body, and because I also have severe enthesitis (inflammation where tendon attaches to bone), sometimes there is NO place on my body that can even be touched it's so painful.

    But there are good times, so just enjoy and make the best of them!!

  • Hi just reading over all the posts there, what i was wondering is do any of you have trouble with your knees? like does one make an awful crunching sound, i do have a slight scoloisis and i tend to favour one side more than the other.but they do say my pelvis isnt in the proper region. I have been doing alot of research and it says that the psoas muscle has alot to do with pain in the lumbar.Tracy I think i remember you saying that when you got your psoas muscle released it felt so good?

    See i came across this research where this man had been getting treated for inflamation of the sacroliac joints and they injected botox into his psoas muscle and it gave him back pain relief for 3 months so they decided to go in and do a psoas muscle release surgery and he still has no pain 12 months later...i think it says that the psoas muscle can go up to thw 12 vertbre.not sure excatly i have been reading that much its brain frying lol ~X( i think the psoas is attached to the back of the vertbre.....see it looks like for me i have to get bmp out of my spine caused overgrowth a nd having alot of leg weakness and like brain recieving different messages....so i was thinking of going down this route with the botox into the psoas muscle and then the surgery if it worked out.....one side of my body feels so tight from toe to head..muscles and joints ache..im sure you are all familiar with it too..so gentle hugs (((((((((((((hugs)))))))))) to you all!
  • Hi Rhonda,

    I noticed in your post you talked about an auto immune problem that can move to other parts of the body. I think your are thinking of RSD(CRPS)?

  • Old post, but wanted to add that I have it! I was diagnosed officially earlier this year after seeing the rheumy for over 6 months. I finally got iritis, which he thought tipped the scales for a formal diagnosis. I did methotrexate for six months which didn't help at all. Then I went on Humira which really helped after about 3 months on the shots however, it only helped for about 9 days, after which the arthritis flared back up horribly. After 6 months, my rheumy and I were both shocked that my insurance approved Humira for every week. Standard dose is every other week. It's been miraculous! After 2 weeks on the higher dose, I felt about 90% better, which is great.

    AS is an autommune disease itself. I have a long famly history of autoimmune diseases like RA, and I highly suspect my dad has AS. He needed double knee and ankle replacements by 55. I've had symptoms off and on for about 10 years. My 23 year old sister is now being tested. She went out on worker's comp and had surgery on her hand and wrist. They discovered it was all inflammation from repetetive stress. She has pain in both hands, knees, and ankles. I hope she doesn't have it.

    Look up the Spondylitis Association of America and they have bulletin boards for support, etc that are fairly active. The people there are great and very knowledgeable. Sometimes, one of the rgeumatologists who support the site will grace us with his presence to answer questions.

    Good luck in getting the help you need to manage this disease. It can be crippling if not managed, so don't be afraid of the meds please. I look at my poor father and despite all his hemming and hawing that there's nothing wrong with him, that his injuries are from the few marathons he ran, I know there's something deeper going on and I don't want to end up crippled like he is.
  • Hi All, Just a couple things to add to this old thread. Rhonda, I hope you are doing better now. I had been wondering about how you were getting along.

    Faith, How did you make out with the blister? I had one last summer from my foot cast and it never healed until Dec. I was in wound care for months and finally had to have a skin graft. It was the MTX and prednisone that affected my healing, even though I went off it 2 weeks before the surgery.

    Also, a note about the mouth sores. I went off my MTX for a while this summer because of this and just started it up again. Then the dr told me there is a "super" folic acid that will help with that. I take folic acid every day, (as most of you probably do with MTX) but haven't tried the heavy duty one. But, if I get them back, I am going to try that.

    Hugs and wishes for everyone to have a good, pain-free day,

  • Marie, I did reply to your PM...sorry it took me so long - I haven't been around much.

    I just remembered that I had some acupuncture done to release my psoas, too, I think...it would have been while I was at a residential pain clinic a few years ago. Not a pleasant experience, but it sure felt better after! It had really been affecting my low back.


    P.S. Yes, I have knee pain, but it's worse when we are dealing with upcoming weather changes.
  • Marie, I did reply to your PM...sorry it took me so long - I haven't been around much.

    I just remembered that I had some acupuncture done to release my psoas, too, I think...it would have been while I was at a residential pain clinic a few years ago. Not a pleasant experience, but it sure felt better after! It had really been affecting my low back.


    P.S. Yes, I have knee pain, but it's worse when we are dealing with upcoming weather changes.

    OOPS! Must have hit the "post comment" button twice!
  • I was diagnosed with AS in 1993. It was confirmed through a blood test called BLA H27. AS is an autoimmune disease that is closely related to clamidia. The BLA H27 test detects a definate marker that differnetiates it from clamidia. I also had MRIs done that confirmed it in my SI joints.After my diagnosis, i was extremely down on myself. Couldnt do much activity it seemed. But, i told myself that i was not allowing this to get the best of me. I became active again and worked through the pain.Most days, it takes me 30 minutes to move around comfortably. My upper body seems to move before my legs decide too. Im taking Arthotec and it seems to help alot. Plus my SCS is programmed just right that it actually eases some of the discomfort. Or at least thats whats in my mind. Having a positive attitude seems to help me out with this AS. But yes a good Rhuemo is the key along with a good support group.
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