HLA-B27 and joint pain

[hobbes602b]

My wife has been through the ringer for the past 4 months, taking more blood tests, xrays, ultrasounds, etc than I care to remember. He joint pain in her fingers, knees, ankles and shoulders are pretty constant, though she just had an amazing pain-free 3 weeks. It just came back over the weekend, leaving her depressed and frustrated.

My point is, the only test that she has tested positive for is HLA-B27, suggesting possible reactive arthritis. What are other diseases she could be suffering from, keeping in mind she has no lower spine pain? Her c-reactive protein spikes with inflammation, naturally.

We tested all the Heps, Lyme, Lupus, RA factor ... all negative.

Any thoughts? Thanks.

[hobbes602b]

Wanda34-

Thanks for your concern and interest in my wife's situation. She saw the new doc in NYC and in doing so, FINALLY found a doctor she felt actually cared for her and her situation. Emotions aside, she was able to give us a decent idea of what she's dealing with.

Due to the fact that he pain is not EVERY DAY as it was earlier this year (she now has 2-3 bad days every other week or so) and due to her positive HLA-B27 and negative RF, chance are we're looking at Reactive Arthritis. No telling how long it will stick around if that's the case.

Behind door #2 is Seronegative Rheumatoid Arthritis. This simply means she exhibits similar symptoms to RA, but does not test postive for the RF factor, and it's not typically as bad as RA. Now, it could always switch over, so we're hoping it's simply Reactive.

That's all I have right now ... thanks again.

[msfergy]

I have also been through the ringer with test for a yr and 4 months now, I finally found a Doctor that tells me ankylosing spondylitas, I just started Enbrel Friday and hope it works. I have been in so much pain 11 months straight now and it is crazy, lower back and down the right leg and ankle I can only stand or do things for 15 minutes or less, also have swelling feeling in neck and throat area to that bother me everyday, been through thyroid surgery and it was not the thyroid causing the neck problem. Also since I done the enbrel injection I now have like a sore throat, is that normal? I am also on steroids for my adrenal glands as my cortisol level was low in the beginning of my sickness and between enbrel and steroids it doesnt really make sence to me, any ideas? Also on Diclofenic and that seems to not work and Percocet seems to not really help either, I have tried everything from A to Z.

[smittygirl]

Wanda, I was on Ketoprofen for 2 years and it helped in the beginning but then stopped.  I was on steroids and methotrexate which made me very depressed.  I was on Plaquenil, Mobic, and every other arthritis drug they make. Nothing worked for me.  I just injected myself with my 4th shot of Enbrel and I know it is starting to work, this is my last hope.  What are your symptoms?    I've been through it all and it's been 4 years since I was dx.  Write back if you'd like, I might be able to help!

Sue

[Wanda34]

I was reading your posts on your wife> I was wondering how she made out at the new Dr. in NYC.  I to am going through a similar situtation  and  have been tested to dealth  with no real findings .  I am  on Plaquenil and Ketoprofen EC 50 mg  4 x a day. It barely takes the edge off.   I was on Naprexon  slow release but there was always an span of 2 hours where it would wear off before the other dose took affect.   I am having problems with my knee swelling.   Hope your wife is well.  I really know how she feels.. I am trying to be positive  but its hard...

Wanda34

[smittygirl]

Thanks so much, I will keep your wife in my thoughts too.  I live in NY as well, if you have any questions at all please ask me, I could write a book about arthritis now!  Best of luck.


Sue

[hobbes602b]

Actually, compared to where she was in January and February, she is world's better. The downer is never knowing when she'll wake up normal, and when she'll wake up in pain. All she has been on is the naproxen, which she takes regularly.

Anyway, tomorrow she is seeing a new joint doctor in NYC. With so many unanswered questions and strange test results, we're hoping she can provide some relief.

Best of luck to you with the Enbrel ... we'll keep you in our thoughts!

[smittygirl]

Not too bad, normal range is up tp 20.  When I was dx mine was 110, it's at 50 now.  Just started the Enbrel last nite and hope this one works.  How is your wife doing now?

[hobbes602b]

Hi ... yes, her new tests show a Sed Rate at 29.

[smittygirl]

I'm afraid I'm stuck with it!   I am going to begin taking Enbrel as nothing else has worked to control the pain and stiffness.  I truly hope your wife recovers soon.  Do you know what her sed rate is?

Sue

[hobbes602b]

Thanks for your input, smittygirl. A few doctors have said that their "bet is on reactive arthritis." She may have a virus that brought it on, but she had this happen 8 years ago, then it vanished until just this last Thanksgiving.

Sorry to hear about your situation. Did the doctor say it could still go away?

[smittygirl]

Hi there!

I was dx with reactive arthritis 4 years ago.  I am 50 now and tested positive for the HLA B27 gene as well.   I was a marathon runner and triathlete and woke up one day and could not move a bone in my body.  I had my knees drained of synovial fluid 3 times, had my feet in casts to control the swelling.  The pain and stifness was in every joint in my body.  Two weeks prior to this I had a UTI.  That infection coupled with the HLA gene is what brough on my reactive arthrits.  In 2 out of 3 people the arthritis goes away when the infection is gone.   Unfortunately I am not one of those people.  I had all the same tests your wife has had, did she have any kind of infection prior to dx?


Sue
smittygirl