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I've posted something like this before but with less information. I have a question. To me, some of you guys know more about auto-immune disorders than the doctors do and certainly more than I do.

For years I've had back pain and within the last three years or so have developed joint pain all over the place. I almost always run lowgrade fever 99 to 99.8.  I've had a trigger thumb. I have swelling in my hands and wrists. I've had one rheumy say that I have sero-negative RA and treat me with everything from sulfalazine to Humira. I had an MRI of my wrists that according to him shows erosions. I've been diagnosed with carpal tunnel in my right wrist. The only thing that has ever helped has been prednisone with a dose of about 25 mg's daily. I am HLA-B27 positive. I have an igg1 deficiency  The highest my sed rate has ever been is 30. ALL OTHER LAB WORK IS NORMAL!

I'm a nurse, I've worked in the ER for 20 some odd years. We don't often diagnose people with autoimmune disorders. I have to be a generalist in the ER cause we see a little bit of everything medically speaking. I'm making myself nuts trying to figure things out. HELP!
 wendyr2009-12-07 13:08:14

wendyr,  Your symptoms sound similar to mine. Tendons pop and snap all the time, lots of joint or tendon pain. No trigger finger but my shoulders catch and release in the same way. Had one CT surgery. I feel like "something is coming on" all the time swollen glands, aches and low grade fever. I have been DX'd with PMR even though my SED rate is 0 or -1. The RA mounted a Prednisone challenge and I got immediate relief.  Since you can't stay on Prednisone forever  he tried Sulfasalazine....bad idea....had a reaction and spent 6 days in the hospital with Stevens-Johnson Syndrome. I'm off meds now and just dealing with the pain. After more detective work the RA referred me to an Immuno doc who confirmed an immune defiency(CVID).  My IgG was 220 last itme I was tested. One thing that is a-typical is I have no apparent swelling or joint erosion.

The Immuno and RA guy want me on IgG replacement therapy, but at k a month I'm not
doing that until I have to. I have a primary care doc that is helping me stay healthy, And counter to what is normal for this low an IgG number....I heal well, don't get a lot of colds,
sinus infections etc.
 
The Immuno doc said that the IgG therapy would help with my joint pain and fatigue but I'm still not going there if I can avoid it.
 
Sorry way more than you want to know but I'm on a constant search also to make sense of this stuff and I am convinced that the docs don't know it all.
Wendy,
 
First of all, I had to laugh when you said that the people here probably know more than the doctors.....ain't that the truth? I can't tell you how many doctors I've had to "train" about my diseases and how my body reacts.
 
In your case there are so many possibilities. I've had PsA [psoriatic arthritis, with NO skin involvement] for 15+ years. I've had inflammation in joints to the point where they are twice the size [before I got to the bottom of my problems] and after three RA tests, I'm seronegative. As far as the Sed Rate - in all these years the highest my sed rate has ever gone is to 27 [30 is the high end of normal], so I put absolutely no credence into that test. [The RD seems to like to order it simply because it's in the Rheum Guidelines.]
 
The defining charactertis of PsA is that it usually has to do with the Distal Interphalangeal Joints and they generally look sausage shaped when they swell. [Sometimes they don't. In fact, I only saw one sausage shaped digit in all 15 years.] The HLA [human leukocyte antigen] is B27.
 
Ankylosing Spondylitis [AS] has to do with the spine. It's not at all uncommon for PsA'ers to have concurrently AS.  The HLA is B27.
 
RA is HLA-DR4, though both RA and PsA and AS are in the IL-20 group. [So you wonder why the doctors confuse the diseases, eh?]
 
I've had trigger finger and have had surgery for teno-synovitis in my wrist. What a godsend that was. However, my orth surgeon commented that he had a lot of mopping up of synovial fluid to do, which surprised him. [Not me!]
 
What works for me is Methotrexate, Celebrex, and periodic Kenalog injections into the joint. The treatment for PsA and RA is identical. The trick is to find the one that works for you. My brother also has PsA  and Enbrel has been a godsend for him. [I can't take it because I'm latent TB.]
 
See a rheumatologist. They're the best diagnosticians in this area.  If you live near a medical school, I'd find a doctor there, at least for diagnosis.  
 
FYI:  I've got PsA, CPPD, OA, and possibly Ankylosing Spondylitis.
 
 
Well  I have the trigger thumb and the carpul tunnal. I am not HLA B27 positive. I am RF and anti-ccp positive. Which means nothing. Well it means it could be alot of things.
 
AI is a hard one. I do have to say the fact that you have the HLA B27 gives you some info. Maybe reactive arthritis? Spondylopathy's, Psoriasis?
 
Exrays and MRI's maybe of some help?
Jazz, A friend of mine has PMR and just from going by what she's told me of the disease, I didn't think that I would meet the guidlines, I've never even really looked at them. She has high sed rates and her lab work always shows even BEFORE her body feels it! I'll have to take a peek at it again. Thanks for your input :) Opps didn't finish saying what I wanted to say... Jazz, one of the times I was in the hospital I was in a semi-private room. Next to me was a girl with SJS. I've seen a few of them myself in the ER but they don't usually look really bad when they come, they're not all peely and burned looking! I feel for you! NO more sulfa containing drugs for you! How is your gut? Do you have vomiting or diarhea? Any rashes? Milly, I've had so many xrays, CT's, MRI's in the past 5 years I should glow in the dark.

This is what I know from them... My entire spine has spurs on it but especially the cervical spine. There I have narrowing of the bony canal that surrounds the cord itself. I also have them in my shoulder joints. MRI of my rt wrist says RA to one doc. I have OA in my knees and my feet.

Sometimes I think I need a CT of my head, just to make sure there are still marbles in there!
[QUOTE=wendyr]Milly, I've had so many xrays, CT's, MRI's in the past 5 years I should glow in the dark.

This is what I know from them... My entire spine has spurs on it but especially the cervical spine. There I have narrowing of the bony canal that surrounds the cord itself. I also have them in my shoulder joints. MRI of my rt wrist says RA to one doc. I have OA in my knees and my feet.

Sometimes I think I need a CT of my head, just to make sure there are still marbles in there!
[/QUOTE]
 
not meaning to jump in on your thread..... but
 
I have the spurs and encroachment...... what does that indicate?  AS??
Spurs could even be from osteo. I think Lynn has a recent thread about cervical spondylitis of an osteo nature. Could mean some form of spondylitis not always AS. Of course with the HLA B27 gene it is a bigger possibility. If you have osteo it is a fifty, fifty harder to pin it down.
 
That is you could have AS. Or you could even have AS and reactive arthritis. Or you could have reactive arthritis and cervical spondolitis. The truth is Rheumatology is not an easy thing. Sometimes it takes years to get a proper diagnoses. We can still get osteo in the mix.
Wendyr wrote:  "OK, how do they diagnose psoriatic RA without any skin involvement?"
 
Primarily on the basis of famly history, appearance of sausage-shaped digit[s], or pitting or striation of the nail bed. However, I've only had the sausage-shaped digit once and only saw the striation in the nail bed once.
 
I believe there's one other person on this website who has psoriatic arthritis without the skin involvement.
That's me Sam.  I don't have skin involvement nor did I have pitting of the nails but I hav a certain type of bone erosion only found in individuals with PsA.  It was found on xray and the sausage like digits was what tipped off my RD.  I also have osteo thrown into the mix.  Makes life interesting sometimes.  LindySausage digits also occur in reactive arthritis. See how complicated it is. Also both can cause inflamation of the spine. All of the spondyloarthropathy's are very simalar in symptoms.
 
I personally do not have the HLA B27 gene. Also I have swelling on bothsides at the same time. Otherwise I would think I had reactive arthritis. That is reading all of the symptoms. Chostochronditis being one of them. I get that even bylaterally. Also I get carpultunal bylatarally.
 
Question? Is your carpultunal bylataral like in Rheumatoid Arthritis? Do you get conjunctiveitis?
[QUOTE=milly]The truth is Rheumatology is not an easy thing. Sometimes it takes years to get a proper diagnoses. We can still get osteo in the mix. [/QUOTE]

Ain't that the truth!

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