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inflammatory spondyloarthropathy
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inflammatory spondyloarthropathy


I was diagnosed originally with A.S. in 2004.  In 2006 I was told that the better classification for me would be  Undifferentiated inflammatory spondyloarthropathy.  Seems to me between the 3 rheumatologist I've seen over the years that their just afraid to commit to anyone thing (changed docs because of move and insurance changes).  I did not test positive for the HLA-B27 antigen, but the docs all agreed that only a percentage of patients do.  Before seeing those doctors I had a whole body bone scan ordered by my family doc because of all the aches and pains (everywhere).  It showed abnormal uptake throughout with moderate degenerative changes on almost all my joints in the body, including my zygomatic arch of the skull. Not sure what the skull things about.  Anyway, these days the majority of pain I have I am told is due to ligaments, tendons and bursa that are inflamed.  I have had several injections of cortisone and whatever else in both hips, one shoulder and my left knee.  They do seem to help, but I am still always in pain somewhere.  I take vicoden as needed, which for me should be a lot but I’m afraid of addictions.
I seem to have gotten worse since first being diagnosed and getting treatments.  Shouldn’t I have had improvement by now?  I am being treated for depression by a shrink (sorry to offend anyone)  which also my rheumatologists say’s the meds will help with Fibromyalgia (they tacked that diagnoses on about 1 year ago).  
I stopped working  just over 2 years ago so I could stay home and suffer out of public view.  I still try and do what I can with maintaining the house and such, taking care of the hubby and the 2 teenage daughters.
I did apply for SS disability, but have been awaiting a verdict on that for quite some time now.
I’m getting ready to turn 43 in September and I can’t believe where I’m at during this point of my life.  How much worse am I going to get?  So far no one seems to know.  Does anyone have the answers?  Can I/ Will I get better, ever?
I suppose at this point I’m just venting more than anything.
Would love as much info I could get on this, but through allllllll my research over the years I have found nothing that quite matches what I’m going through, just similarities.
Can  you help????
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15 Comments Post a Comment
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483733_tn?1326802046
I am so sorry you are hurting so badly.  I would encourage you to try the symptom checker and health topics here at MedHelp.  There is a lot of information there.

When did you last have a complete blood work up?  Are you visiting your rheumatologist regularly ?  Have you been tested for Lupus or other auto-immune arthritis?  Have you had your ANA tested?  I'm sure your Fibromyalgia is not helping the A.S. symptoms.  Have they given you anything to help with the inflammation?
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1012964_tn?1251823026
I'm hanging in there.  Some days are just so hard I feel like the victim and start to rant. Sorry for that.
I get my blood checked every 3 months, but just because of the meds I'm on.  Haven't been checked for ANA i think in about 4-5 years and it was neg.  I do see a rheumatologist every 3 months also.  I have a very bad stomach and Barrett's espophagus, so I'm limited and not able to take NSAID's.  They've all made me very sick.  I do take predisone at 5 mg daily.  On real bad days I may increase to 7.5-10mg.  I have gained more weight than I care to mention from that stuff.  I also take methotrexate once a week, which I guess is a disease modifying drug.  My insurance does not cover TNF inhibitors which one of my docs wanted to try.  I also take 3 different meds for depression, one of which is supposed to help with the Fibro.
I'm sure some day things will get better. Until then I sit and wait.  Thanks for the note.  It was nice to see someone respond.
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483733_tn?1326802046
With what you are on I would think they would be able to better manage your symptoms.  What are you taking for pain?  I would definitely ask him to run another Lupus panel and to check all your blood just to make sure nothing else has established itself.  Are you able to get any exercise?  I'm just coming out of a depression from my Lupus by trying to get more active.  I am shocked that I do feel better getting some exercise.  I've just been going for 15 minute walks, pushing through the pain, and am amazed at the relief I am getting.

So sorry about your insurance too. So unfair.
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469901_tn?1276567223
Great advice from Trudie.  I feel compelled to ask if you tried to have your insurance repeal their decision on TNFs like Enbrel.  I know that has worked wonders for many spondys and you deserve to find out if it can help you.  As draining as it is, some people have fought and won permission to have a med covered.  I have a few meds that have to be reapproved annually.  The worst thing they can do is still say no.
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1037767_tn?1262610384
I have been searching the internet for the last month looking for answers to my diagnosis of Inflammatory Spondyloarthropathy . I have just read your post and It bought tears to my eyes to finally find someone with the same questions and feelings. I was diagnosed by my Rhuematologist a month ago and have been placed on Salazopyrin. At this very moment I am wondering if life is worth living because I am in so much pain its unbelievable. I am slowely increasing my dose of Salazopyrin as you cannot start at full strength. I have extreme pain in my groin, shoulders which are constantly there and then the pain comes and goes in my neck and knees, elbows, wrists and fingers. I work full time and have my partner and 4 children and at 37 years of age I do not want to be feeling this way forever. I live on Panadiene Forte for the pain but cannot rely on them for ever as they are addictive and not good for you.I just wanted to say that I feel your pain and frustration and wanting answers.

Leanne
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Avatar_f_tn
Hi Robbie,
I am new to this forum, but with your doctors not knowing exactly what you have are you sure or has anyone mentioned Palindromic Rheumatoid Arthritis ...

I have PRA which manifests itself as 'connective tissue disease' meaning my pain is in the soft tissue & muscles not the joints - plus PRA is not degnerative so you don't get any bone destruction - plus PRA comes and goes and there is no rhyme nor reason to when it will strike

PRA is a rare disease and not many doctors actually know about it, so perhaps you could ask your doctor/s next time you see them if it is a possibility ??

Maz - Aust

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Avatar_f_tn
I realize this is an older post, but I just came across it. I'm 30 yrs old, was diagnosed about two years ago with fibro and cfs, and then a year ago with UndifSpondylo. I have been suffering from fibro since I was 13 & spondylo since 17 (both undiagnosed til very recently). I can tell you that over the years they have gotten worse. I have tried so many different drugs for them that I have a hard time remembering them all (and gain a ton of weight because of them too). I have come to believe that with going undiagnosed for so long, and suffering for as long as I can remember, has impeded the affect of the drugs. Nothing has helped. I have realized that the severity of my spondylo attacks are more frequent, last longer and have gotten worse. And I'm coming to you now during a bad blow, so I'm very sorry if I come off pessimist. My point of all this is to verify that you are not alone. And also so that I know that I'm not either. I appreciate that you have put yourself out here. The struggle of thinking your the only one that could no this type of pain has weakened my outlook. Thank you. I hope that you find relief, and if you do please spread the word.
Lyndsey
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Avatar_f_tn
I am recently dxd with spondyloarthropathy.  I am HLA-B27 pos.  I would have different areas of inflammation.  Most recently I now have scalp tenderness, which they tell me is not related, but every time I have a flare I get the scalp tenderness first, so I'm not sure I believe that.  Now I have the scalp tenderness and my whole back hurts.  I was put on sulfasalazine, but that made all my joints hurt so I stopped that myself.  I am 50 and was very active up until all of this.  Just wondering if anyone else had the scalp tenderness.  It feels like my scalp is raw.    
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Avatar_f_tn
Hello, I was just diagnosed with Undifferentiated inflammatory spondyloarthropathy. The rhumatologist tested me for everything and I was positive for the HLA-B27 gene, he told me that I have reactive arthritis, AS, and fibromyalga (fibromyalgia). I was put on a high regiment of anti-inflamatory (500 mg Naproxen 2x a day) along with omeprazole to prevent damage to my stomach. I was also tested for my vitamin D levels, which left me wondering why a 25 year old would need this. I thought to me self that low vitamin D levels are something a post-metapausal or 50 + man would see. Unfortunately my D2 levels were in the single digits and I was at extreme risk of breaking a hip or other bone. The doctor put me on 50,000 IU of vitamin D (a butt load of vitamin D), and within 24 hours a lot of my muscle pain was reduced. I was finally able to get out of bed and move around, this significantly improved my chronic fatigue. I was shocked to see such a improvement in the way I felt. The joint pain was still present but once I started Naproxen I saw significant improvement in my pain and I was able to enjoy going fishing again.
The key to preventing further joint damage is to keep the inflammation of the joints down, many people see significant improvement with anti-inflammatories and the pain is decreased due to reducing the inflammation. You should talk to your rhumatologist about this, and there are also some great RA (Like celebrex, embrel ect.) meds that help significantly improve joint comfort.
This specific category of immune disorders are inflammatory conditions that cause the immune system to attack certain joints, tendons, and other tissues of the sort. If the inflammation can be controlled the joints with be significantly better off. When inflammation is present in joints and stays inflamed the joints can be damaged. This is what causes the disfiguring effects associated with the disease, but this usually is present later on as the disease progress. The disease is a very slow moving disease, and it is possible to live a long happy and productive life as long as inflammation is properly controlled. I hope this helps you and best of luck.
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Avatar_m_tn
I was just diagnosed with undifferentiated spondolarthropathy a few days ago.  My right foot has been swollen since August-September and I have pain on the bottom of my foot at the third and fourth metatarsals.

Nothing is working to reduce the swelling.  I cannot get my right foot into my dress shoes without squeezing it in and some days I feel like I have elephantitis of the foot...and no, I'm not laughing about it.

The thing is, my doctor prescribed a drug which scares the heck out of me since it's also used (in higher doses) as a chemotherapy drug (Methotrexate).

Other factors:  Being treated for Major Depressive Disorder for 5 years, been on every SSRI SNRI on the market, currently taking Wellbutrin and Topamax, plus Rozerem for my insomnia.

Aggravating factor:  serious alcohol consumption.  I quit for many years but started again in December of last year.  I know that's not helping me, and for awhile I suspected it was the cause of the problem since I always feel a little worse the morning after...but then again, I'm drunk so often, I'm probably imagining a causal relationship between the two.  I also panicked and diagnosed myself with Lupus, Cirrhosis of the Liver, adema...you name it so I'm glad I finally decided to stop web-diagnosing myself and let the rheumatologist take a whack at this.

Anyway, this swelling of my right foot was joined a month or so ago by a serious achilles tendon problem with my left heel...so in the morning, I walk like an 80-year-old man.  It abates as the day progresses, but I'm not so sure I want to start this Methotrexate regimen due to the serious side effects and the problem with taking this with the Meloxicam she prescribed to try to tackle the inflammatory problem with my foot and then, of course, the booze I consume 4 to 5 days a week.
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Avatar_m_tn
I spent a decade in increasing pain and spending countless hours seeing different doctors and having exrays, CAT scans, MRIs, physical therapy & other treatments.  I now take sulfasalazine daily and feel it is a miracle.  I rarely have any joint pain at all so long as I take my medication as prescribed.  For several years, I could barely walk. I now hike, ride my bike, do aerobics, and whatever else I want to do.  Prior to sulfasalazine, only steriods controlled the inflammation.  (Celebrex controlled much of the pain, but never reduced the inflammation and so never resolved my symptoms.  Same goes for Naproxen, but with less pain relief.)  I was routinely asking for steroid injections and/or medrol packs.  I was like Jake and found my shoes did not fit.  I could only wear my oversized Crocs, and then I had to have those fitted with special pads by an orthopedic surgeon, who also casted my arm and sent me for more physical therapy.  I don't need any of that now that I take sulfasalazine.  I see that cath097 reports that sulfasalazine caused increased joint pain--I think I have experienced increased joint pain only when I resumed taking sulfasalazine after missing several days of doses.  (Possibly, cath097 should have taken prednisolone for a month prior to beginning sulfasalazine as prescribed by my rheumatologist.)  I will say that adjusting to sulfasalazine took a couple of months.  I too have a sensitive tummy and I suffered some nausea and anorexia as well as a little itchiness for the first few months I took sulfasalazine.  But, the absence of joint inflammation made me stick with it.)  Most of the time I have NO symptoms so long as I take sulfasalazine as prescribed.  I NEVER need pain medication for my joints now.  Over the years, I have seen dozens of doctors and thank God I found my current rheumatologist, who said sulfasalazine is the safest alternative for those who are lucky enough to have results from it, because I tried it and finally feel healthy and lucky!  I know my current rheumatologist saved my joints and my sanity.  I think you should try to get in to see someone else ASAP.  I do not miss the endless pain and the sudden onset of fatigue and ache that signals another flare up of even worse symptoms to come.  But, I would not be better now if I had not kept making appointments with some new doctor.  Just so you know, my medical costs are way down now that I take sulfasalazine.  And I never need pain meds for my joints anymore.
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Avatar_m_tn
I was just diagnosed with inflammatory spondyloarthropothy .It as been such an uphill battle getting answers. I still don't fully understand the disease, but my dr. assures me it is treatable. I've started Enbrel and practically live on prednisone and gambapentin. My feet hurt so bad most days I can hardly walk. Just wearing shoes is a chore. I have had one treatment of physical therapy and it gave me temporary relief for about 2  1/2 days then the pain returned. I've gained over 50 lbs and that certainly doesn't help. I'm now noticing lumps on my fingers. I just pray everyday that it gets better.
My dr. has only ever seen me sick once. All the many  ,many ,other times he's seen me  for pain... pain so bad I erupt into tears and tell him that if this is how I have to live I don't want  go on.
My only wish is that I am able to walk at my daughters wedding.
I try to work but end up missing time. Thank God  for FMLA and short-term disability.  I really do love my job and the people I work with and don't want to be fired or forced into quitting. (Dr. says work is good...stay active. He.should have my feet...)
Reading your story has helped. I now know that I am not alone. Thank you for sharing and God Bless !!!
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1193998_tn?1265121197
Hi lyman1, I'm sorry you're having so much pain.

If you don't understand your disease, MAKE your doctor explain it to you in terms you can understand. Refuse to leave the exam room until you are satisfied with the answers.

It's the prednisone that's making you gain weight. Hopefully once you're able to taper off, this issue will be resolved.

Now, the way to show your doctor what life is like for you when you're not in his office, document, document, document! Keep a pain diary, which can be a s simple as a stick figure of yourself with the most painful areas circled, along with what meds you took that day and when, when your pain is the worst, and maybe some details about your diet and activities. You may notice a pattern.

Take photographs of red, swollen, inflamed joints; take video of yourself trying to walk, and show it to your doctor. Pictures are worth a thousand words!

Hang in there!
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6537448_tn?1383247094
I am a 40 year old female, and I have been a fit, active person my whole life.  About two years ago, my troubles started.  At first I had discomfort in my buttocks and around my tailbone area, and could not sit comfortably.  The pain evolved.  My feet started feeling as if I am walking on pebbles.  My condition has deteriorated so much that I can hardly walk and I was forced to use a wheel chair to be able to do my work.  I have been a production manageress and grower in a wholesale nursery for a few years.  I have severe pain in my lower limbs - feet; heels; ankles; calves, knees and now even the muscles in my thighs cramp and "pull"  I have joint pains in my fingers, hands and wrists at times and my neck.  It took quite a long time to get a proper diagnosis, after being treated for osteoathritis, then suspected fybromyalgia.  Finally, I know what is wrong, yet a course of Salazopyrin didn't change a thing, corisone injections, a course of Methatrexate and exausting my medical aid and my pocket, just wouldn't win the battle.  I have a beautiful teenage daughter and cannot walk with her in the mall without agony; I am simply in too much pain to go to her and see her in the evenings - she is now living with her father (we divorced in 2005) My doctor has now doubled the dose of Methatrexate and prescribed Nivaquine and Coxflam.  I have been taking depression meds after ending up in a "mental" hospital last year for not being able to accept my situation. It is good to know there are others like me, but what I would like to know is, if the disease is not brought into remission - what is the worst case scenario - can I actually go "lame?"  It sure feels like it, the way this sickness aggressively progressess
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Avatar_m_tn
Hi all.  I have read some reports about eliminating starches.  Apparently that helps a lot.  Try a diet that eliminates all allergen foods(no red meat, shellfish, soy, dairy, corn, gluten, tomatoes).  It's not as hard as it sounds, believe me, I'm starting that again this week.  You can eat rice, poultry, fish, sales, nuts, quinoa, potatoes, almond milk, etc etc.  But, I just read about a study where a woman switched to a vegan diet and her AS symptoms disappeared!!  I am going to try to gradually change my diet in that direction.  There is definitely a relationship between what we eat and inflammation in the body.  I have been suffering for 16 years.  I'm 38 and feel like an elderly woman.  But, when my husband and I did a raw fruit and veg cleanse for 10 days, I felt amazing.  My inflammation reduced a ton and it was the first time I ever felt that I could maybe overcome this pain.  I went back to eating sugar and wheat and everything and feel awful again.  Basically, I am saying, you may find relief by making some dramatic dietary changes.  It's worth a try.  Good Luck
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