Is it really RA ????

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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!! 

 

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6 Replies

  • Posted

    I ve read this through carefully- you ve got a tricky situation. I can only comment on a few bits that overlap with my experience.

    Is it RA?

    Firstly a steroid jab followed by mxt is standard RA treatment after first diagnosis, but I notice you didnt say he said you had RA- and there are a range of imflammatory arthritis conditions(eg psoriatic arthritis and sle) and positive and negative RA depending on RF factor being positive or not. So some refining of diagnosis can happen later. My son was diagnosed with RA, started on mxt - then it turned out to be inflammatory joint  response to an infection which went away after 6 months. So they tend to do the standard initial treatment even if it turns out to be something else. This would explain why he has set in course standard treatment .If it is RA its vital to start it to try and avoid further joint deterioration.

    Methotrexate?

    I worked as a teacher when first diagnosed and did not get any colds etc than usual-BUT- I was more aware of avoiding sneezing people, washing hands a lot more and not taking risks with food. You can get a pneumonia vaccine while on mxt

    effect of other meds?

    Have you now stopped taking the med you think may have triggered this response? Lots of med induced problems are reversed when you stop taking the med. .....

    Steroids

    ​Yes stay off the tablets if you can- but a jab in the backside can help the whole system while waiting for mxt to work and doesnt have the same long term side effects as tablets.arthritis research website and NRAS are both useful websites to get info. Hope you manage to get a clearer picture. I think you re right to keep querying the med and sle symptoms connection-  but if you ve stopped it, it should resolve- otherwise it could have triggered your immune system into RA. 

     

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    • Posted

      Hello Rowbirdie!

      Thank you so much for taking the time to read through my post and help shed some light on things with your knowledge and experience smile

      The Rhematologist did say he thinks this is RA, said he based that on clinical findings (joint swelling in my fingers and wrist...which I cannot feel at all, even on palpation!!). 

      Good to hear that a pneumonia vaccine can be taken with MTX use, I need to call and ask about getting one.  I am a big hand washer and always avoid anyone who appears sick.  Pneumonia just worries me because I already have a hard time fighting off respiratory illness as it is due to previous bout of pneumonia about 15 years ago. 

      Also, I was just reading up on MTX, the manufacturer recommends a starting dose for RA of 7.5mg once weekly, he started me at 15mg once weekly.  I just don't understand that.  I don't have any pain or stiffness in any joint, why so aggressive???  The only discomfort I have currently is stiffness in my left knee, I'm sure a lot of that is due to the surgery.  The surgeon removed the synovium in there, so synovitis shouldn't be of concern in that knee, correct?  Therefore the stiffness/pain/swelling in that particular joint shouldn't necessarily play into the treatment of RA, would it?  I guess I just question why this doctor would start with such an aggressive approach when we don't even know for sure if this is what I'm dealing with, along with the fact that I don't have any pain or discomfort or any other symptoms associated with RA at all.  So many questions, and it's all so overwhelming.  One day I'm feeling the best I have felt in YEARS, and a few days later I'm diagnosed with RA and begin taking MTX at a moderately high dose.  I just don't understand how I could have this desease when I feel so good?!  I've only taken one dose of the MTX, the second dose is tomorrow, but I'm not so sure I really want to take it. 

      Oh, and yes, I did stop the HCTZ that could induce SLE.  I just stopped taking it about a week ago, and had only been off of it for about 2 days when I saw the rheumatologist for the first time (a week ago yesterday). 

      Anyway, thanks again for your reply, several helpful bits of information in there to help me try to make sense of all of this smile

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  • Posted

    Hi Mom.  You are lucky that you got to see a rheumatologist so quickly.  Many people have to wait months.  So, if you are getting a jump on your diagnosed RA, I wouldn't complain.  I came down with RA almost overnight last spring.  Within two weeks, my hands and wrists became horribly painful.  My fingers were so swollen that I had to take off all my rings.  My fingers have become deformed so that my hands look like claws.  Also, one of my knees hurts badly under certain circumstances.  I was already under the care of a rheumatologist, so was lucky to get treatment right away.  I myself steer away from steroid shots, so am relying on the methotrexate and the plaquenil that I was already taking for another autoimmune condition.

    I would recommend that you get a second opinion because you have doubts about your diagnosis.  Rheumatoid arthritis is a horrible disease that can cripple a person very quickly.  You need to know for sure so that you can proceed with the appropriate treatment for RA or any other condition that you might have.  Hopefully, it will just turn out to be a knee problem that will get better with treatment.

    I am curious about your hydrochlorothiazide.  Did it contain potassium or were you taking a potassium supplement?  I have been taking hydrochlorothiazide for years and my doctor had me taking a potassium supplement as well.  He tests my potassium every now and then.  I am just curious because your potassium tested a bit low.

    Let us know how you are doing

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    • Posted

      Hello Patyrod!

      Thank you for your reply!  I am so sorry to hear you have had so many severe issues from the RA sad 

      I am trying to get a second opinion, but it takes around 6 months or longer to be seen by anyone here, I can't believe I actually got in with the dr. so quickly after the initial referral.  They called the following work day and said they had a cancellation so I slipped into that spot.  Blessing or curse...I'm still not sure which it is!  Part of me thinks it was a blessing to be seen/diagnosed so quickly, but part of me wonders if this doctor jumped to conclusions.  Either way, I am now an established patient, so I should be able to get treatment should things take a turn for the worse at any point in time.  As of right now, I feel fine, which is why I am so confused by the diagnosis.  Really struggling with whether I should continue the medication or not.  I keep thinking surely the dr will call and go over the lab results with me, but they have been in for 2 business days and still no call. 

      As for HCTZ...no, I don't believe it has potassium in it.  Mine has been low for a while, even when I wasn't taking HCTZ, but it's never been so low that I needed a supplement, just advised to eat more foods rich in potassium because my level is just borderline...same now as it has been since 2009. 

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    • Posted

       Hi

          I understand your concerns for an accurate diagnosis before starting the medications advised at your appointment.   My blood tests were almost all normal prior to RA diagnosis.   I had swelling in only 1 finger but extreme fatigue.  The reumatologist thought it was RA but wanted to confirm diagnosis with a hand xrays and then MRI.  Both showed erosions  which are indicative of inflammatory arthritis.   I started on MTX at 2.5 mg and weekly increased the dose by 2.5.   I got quite sick on 10 mg so we stopped it and I am currently on 7.5 mg and just started humira.   It is very expensive but my husband still works and his insurance covers it.  When he is retired I will need to find another drug.    It is impt to start medication early with RA so perhaps a 2nd opinion or most tests/  xray/ MRI to be confirmed diagnosis.    I probably would have refused a steroid shot at inital appt too

       Your potassium level is only minimally below normal but HCTZ can lower that number so you will need frequent blood tests and need to eat foods that are potassium rich  but confirm with your MD.   

         I wish you the best--- others will post their thoughts,  I am new to the diagnosis myself so others will be able to offer more advice

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  • Posted

    Hi mom

    IF you had RA, I would not object to the treatment.

    I absolutely agree with you that no ine should take a DMARD, disease modifying anti rheumatic drug without presenting with disease.

    Had I overheard the physician nurse conversation, I would have left.

    Sounds like you are USA....find a different rheumatologist...like somebody had to graduate at the bottom of the class...

    Your concern is, do you have SLE, even medication induced SLE must be addressed.

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