inflammatory spondyloarthropathy

[robbie200]

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????

[TrudieC]

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?

[robbie200]

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.

[TrudieC]

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.

[txsilver]

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.

[Painful1972]

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

[Maz_au]

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