Is it really RA ????

Test results:

ABNORMAL:

ANA...Homogenous with titer of 1:160 (normal range less than 1:80)

CRP...2.55 (normal range < .80)

Vitamin D....29 (in range 30-100, so barely out of range!)

Potassium...3.4 (in range 3.5-5.3, so barely out ofrange!)

NEGATIVE or WITHIN NORMAL RANGE:

RF...negative

CCP...negative (reference range:  <20 normal, 20-39 weak positive, 40-59 moderate positive, >59 strong positive).  So nowhere near positive!

SED RATE...normal at 9 (range is 0-20 is normal)

SCL-70...negative

SM Antibody...negative

SM/RNP antibody...negative

Sjogrens A and B...negative

Uric Acid....normal at 3.9 (normal range 2.5-7.0)

There were a host of other tests, all normal, from what I read they are more of an indication of how "healthy" I am at "baseline" starting treatment.

Symptoms:

left knee developed synovitis.  Started last spring, became progressively worse, scoped in early Nov, surgeon felt the synovitis was possibly due to rheumatoid disease and advised we screen for that once recovery was well underway.  At my 4 week post op appointment, his office ran the ANA, only results were positive ANA, homogenous pattern with titer of 1:160.  This titer is only ONE dilution out of normal range, so it is a VERY weak positive.  The CRP was also done on this initial screening, and it came back elevated at 2.55 (normal is less than .80).  Keep in mind, this is only 4 weeks post op, and my knee is still very tender from surgery, still don't have full range of motion due to tenderness!)

The knee...it all started last spring.  I found a lump in my breast in January, had it checked out, supposedly it was "normal", but that tipped me into get healthy mode and I began a calorie restrictive diet, and started taking a blood pressure (BP) med (Valsartan/HCTZ) to bring my moderately elevated BP back into normal range, and flush out excess fluid from water retention.  I lost nearly 10 pounds of water in the first 5 days of taking the medication...that is a lot of water!  4-5 weeks later, I started feeling stiffness in my knees, ankles and feet upon getting out of bed in the morning, but it would resolve after only a few steps, so maybe 30 seconds and then the stiffness was gone and would not return until the following morning.  That went on for a month or so, and then began to go away in all areas except my left knee, and at that time it intensified in my left knee.  It became stiff after sitting for a period of time, but would mostly resolve if I got up and moved around.  I brought it up with my PCP, explained that the HCTZ medication said to notify your doctor if you noticed any joint problems while taking this med, she dismissed it and said I had probably injured my knee, prescribed ibuprofen and to check back if it became worse.  Over the next month or so, it became worse, and I still could not relate this back to any injury.  She prescribed a stronger anti-inflammatory which did absolutely nothing to help.  Still no problems anywhere else in my body.  No achiness, no tiredness, nothing!  Late summer I stood up from my computer after sitting for about 5 hours (late night photo editing session!) and something popped in my knee, I couldn't bear weight for a few days, doctor sent me to ortho who did an x-ray and said my joint spacing was fine, MRI showed a tiny "tear" in meniscus, prescribed oral steroid dose and referred me to surgeon.  A few weeks later I saw the surgeon, he said let's wait and see how this goes because at the time I had ZERO issues...no pain, minimal stiffness.  Over the course of the next 6 weeks, it became stiff and yucky again, range of motion still not 100% on full flexion or extension so he recommended a scope.  Scope found that there was severe damage to the joint, synnovium was "boggy" and thick, he cleaned all of that out and shaved off the seaweed looking stuff in my joint.  That brings us to present time.

The ANA and CRP were out of range, so he referred me to rheumatologist.  Crazy, I actually got in to see the doctor the very next day.  This doctor...he's interesting.  My husband and I could hear him outside the door telling his nurse he didn't understand why this surgeon kept sending "these people" to him when they don't have rheumatoid problems.  He had not even seen me at that point, only had a copy of the ANA lab, and his nurse reported to him that I had told her I don't have any pain, swelling or stiffness in my hands.  So he orders more labs and then came in to talk with me.  Very extensive questioning of history, then physical exam.  He seemed irritated that I was there through all of that, until he got to my ankles, said he felt heat in one, and some minor swelling in feet.  Then my hands, said he felt synovitis in my right wrist and a few fingers on my right hand, and one or two on my left hand.  Then wrote down a bunch of stuff, and said we would start treatment with a steroid shot now and I needed to start a moderate dose of methotrexate the next day.  What in the world?!  That came out of nowhere.  Hubby and I were like, "did you just diagnose something...and if so, what?!"  He replied, oh yes, she has synovitis in her hand and knee, elevated CRP and positive ANA...we need to start treatment right away.

I have NO stiffness in my hands or feet, no visible swelling anywhere other than the knee that is still healing from surgery. 

One thing that stands out to me is that the ANA lab said that the pattern is suggestive of SLE, and can be caused by certain medications.  I looked up the Valsartan/HCTZ and lo and behold, located on the provider prescribing information: 

5.5

Systemic Lupus Erythematosus (SLE)

Hydrochlorothiazide (HCTZ):

Thiazide diuretics have been reported to cause exacerbation or activation of systemic lupus erythematosus.

Is it just coincidence that I develped these symptoms a month or so after starting this medication?  The rheumatologist wouldn't even discuss it, but my PCP who has seen me since I was 15 said it is quite likely the cause! 

So here I am with wacky rheumatologist who acted like I had no business even being in his office in the first place, change his mind after feeling swelling in my fingers and feet, and immediately starting me on immunosupressant medication.  He also wanted to do a steroid shot to "kick off" treatment, but I declined.  I've lost 45 pounds since March and don't want to go back the other way with steroid treatment!  Especially when I have no pain anywhere currently, other than my knee which is still healing.  The labs he ordered that day have arrived, all within range except the Vitamin D and Potassium, which are BARELY out of range.  Yet I have not heard from the doctor with an interpretation of these results, nor have I heard what the hand and chest x-ray showed (or didn't show).  I'm supposed to take the second dose of methotrexate tomorrow, and I'm stressing over it because I'm not convinced I really have RA and don't want to compromise my immune system if I don't have to.  I have 3 children, ages 6, 9 and 12, who are germy!  All 3 of them had pneumonia last year, and I'm already highly susceptible to it as I had it about 15 years ago and ever since I develop bronchitis everytime I get any type of respiratory infection.   It takes me 4 weeks or more to get over it as it is, I am so worried I'll end up with pneumonia if my immune system is any weaker than it normally is and I get one of these colds from my kids or the environments I am frequently in with my kids (basketball games, gymnastics practice, etc). 

So with all of that said...what do you think?  Is it really possible that I have RA?  And if so, do I take the chance of all of the risks involved with this medicine without a firm diagnosis???  Right in the middle of flu season no less! 

Please help me understand what these labs mean!! 

0 likes, 6 replies