Strange Symptoms, What is appropriate treatment?

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Sun, July 19, 2009

Hi,

I am a 25 year old male who is being seen by a rheumatologist. I am probably in the lowest risk demographic for RA (post adolescent man) and have some symptoms that approximate RA, but many that are missing. I have lots of different opinions from many doctors, but I think I might find some fresh viewpoints from here. This is going to be a long post in order to get most of the info down, so thanks for reading:

Symptoms:

Mid afternoon fatigue since I got mono in 2004

Soft tissue swelling of PIP joints since probably 2005, No evidence of erosions.

Swelling rapidly comes and goes (even hourly), but fingers have "fat" PIP joints always.

No significant morning stiffness

Knee problems...Sometimes both knees. Arthroscopy of knee revealed hypertrophied fat pad, which is strange

Difficulty falling asleep, often times not feeling well rested in morning. Since 2005 as well.

When I wake up in the morning, PIPs and MCPs often have red patches on them and I feel like I want to crack my knuckles, though not painful.

Occasional pain in joints that moves around. I can remember different times where my DIP finger joints all hurt for no reason, etc.

Tests:

RF Negative

Anti CCP Negative

ESR Normal

CRP Normal

HLA-B27 negative

No Hep C

Chlamydia Trachomatsis Antibody positive (Might be Chlamydia related. Went on antibiotics for 4 months. Knee pain better. PIP swelling and other symptoms remain)

*Other than clinical symptoms, I'm normal.

Meds

Sulfasalazine

HydrozyCholoroquine (I've been on both for about 1 month with no effects)

Doxycycline

Rifampin (Rif and Doxy are a trial to see if the arthritis was chlamydia induced.. seemed to slightly improve and then level out)

Any ideas for treatments, tests, or prognosis?

Thanks so much!

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Lene Andersen

7/20/09 11:21am

Keep in mind that none of us who answer questions here are doctors, so any information we give you is based only on personal experience. Approximately 20% of people who have RA are what's called seronegative, which means they test negative for RA (for more lab tests and what they mean, click here). That said, some of your symptoms reminded me of little of fibromyalgia, which can come with chronic fatigue and sleep disturbances (for more on this, check out the fibromyalgia area of our chronic pain site). However, the rest of it... I have no idea. Keep pushing, keep going to doctors, sooner or later you'll meet someone who'll know what's going on.

Sorry I couldn't be of more help.

AKBayce

7/20/09 1:22pm

Thanks...I'll check it out. I appreciate the advice. I'm just so fed up with the docs!

I'd appreciate any other comments. Anything to add is great.

andrew

7/20/09 4:31pm

As Lene states, we're not doctors. But you may wish to ask about Reactive Arthritis which comes when your body reacts to an earlier infection.

http://www.mayoclinic.com/health/reactive-arthritis/DS00486

AKBayce

7/20/09 4:41pm

Thanks....That was our first idea, but I don't have some of the common conjunctivitis or urethritis symptoms and am HLA-B27 negative. My buest guess is undifferentiated spondylarthropathy - but I think that the treatments for that are broad and nonspecific (like the disease diagnosis).

I really appreciate everyone's suggestions.

andrew

7/20/09 6:53pm

Being "undifferentiated/unspecified" is a tough place to be. I was there for several months until additional symptoms began to manifest and clarify things as RA. Actually, treatments are pretty much the same for RA as for spondylitis - undifferentiated or not. And remember, 20-30% (maybe even higher) don't have any positive blood tests. Check out this website. http://www.spondylitis.org/About/undif.aspx

Hope you get clarity, treatment, and relief soon!

Andrew

AKBayce

7/20/09 7:07pm

Hi Andrew,

Thanks again.

I think you have a good point. The DMARDs and biologics they use tend to be the same....I guess what has really made me crazy is the unknown severity.

I'm interested in the biologics too...They seem to have lots of promise and I read about them for use w spondylitis.

andrew

7/21/09 1:07am

Here's an excellent article about Managing seronegative spondarthritides

http://rheumatology.oxfordjournals.org/cgi/content/full/39/4/360

I have a friend in his late 40s now. He got spondalytis in his early 20s, battled it for 10 or so years, mostly with NSAIDs since all there was at the time. He eventually went into remission but still has bouts now and then when his hips and back flare up.

The thing that strikes me as interesting in your case is the problems with PIP and MCP joints which is often common in RA. Are the finger problems symmetrical (on both sides) or unilateral (on one hand). Symmetrical joint problems are more common in RA where unilateral symptoms more common is spondalytis.

Andrew

AKBayce

7/21/09 12:59pm

Hi Andrew,

My middle finger has been fat on both sides of the PIP since at least 2004. All of my PIP joints are bigger than they ought to be, too, but family members and such look at it and say "you have knobby knuckles, get over it". I saw a rheumatologist at Mayo Clinic who said that I had no sign of inflammatory disease. One in my hometown initially thought that I didn't have anything, but then changed his mind to unspecified seroneg. polyarthritis and put me on some DMARDS. A rheum at Cedars in CA thought that I did have something, had no idea what it was, and decided to watch and wait.

I think it's pretty obvious that I do have something...I have had fatigue and swollen knuckles my adult life and knee problems for the last few years. I don't think it is classic RA or classic spondylarthropathy, but it presents as a light form of both...and someone made the point that the drugs are the same in any case.

So I'm thinking treat, and see how I feel. I've been on Sulfa and HydroxyChloroquine for about a month with no real results so far, but I guess it can take forever.

Thanks!!

Strange Symptoms, What is appropriate treatment?

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