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nolatoco
Regular Member


Date Joined Jun 2009
Total Posts : 66
   Posted 9/10/2011 11:00 AM (GMT -6)   
Let's see...where to begin here?

I was frequently on this site about 2 years ago after initial diagnosis looking for answers and support. They diagnosed me as UCTD, put me on prednisone and plaquenil and it seemed I was on this holding pattern of trying to balance out my joint pain and severe fatigue while attempting to phase out the prednisone and maintain normalcy on the plaquenil. I moved back home from Colorado after being a single mom there while sick for 2 years and now I'm back home with my family. It's been nice to be back at home with a support system.

When I moved here, I met with a new rheumy who was miserable. She downplayed everything saying my persistent symptoms were simply because I was overweight (which yeah, I gained weight after a year and a half on prednisone, who wouldn't?), upped my dose of plaquenil, and said simply I was going to have to deal with the joint pain since it wasn't life threatening. She would see me in a year unless something life-threatening occurred. Two days later, her nurse called telling me I had protein in my urine and the test simply needed to be retaken in 3 months. I walked out of there and never looked back!

Well, needless to say, this interaction really upset me. I took myself off the Plaquenil and the Prednisone telling myself, maybe this diagnosis was all a mistake. Maybe I could make myself better simply with healthy eating, vitamins, exercise, etc. Since this decision a year ago, I suffered a leg fracture with unknown cause while training for a half-marathon, and gradually increased severe pain in ALL my joints- elbows, fingers, ankles, knees, hips...and the fatigue is starting to come back.

My primary care doctor a month ago scolded me for my decision, which I completely deserved and set me up with a new rheumy. I saw her last week and had labwork completed. I really liked her. She called me the next day with abnormal lab values.

Vitamin D decreased
Aldolase elevated
C reactive protein elevated
Sed rate elevated

I'm aware of the importance of the sed rate and vitamin d levels. Anyone have any personal experience with an aldolase level? Anyone else have a really elevated C reactive protein?

I'm really hoping this new rheumy will have me figured out. She wants to recheck me in 8 weeks after I keep up with my medications (minus the plaquenil and no prednisone) since I was having issues remembering to take everything.

I hope everyone's doing ok!
Diagnoses- Hypothyroidism 2010, UCTD 2009, PCOS 2008, asthma 2001, IBS 2010
Daily Meds- Vitamin D, Synthroid, Vitamin B12, LoEstrin, numerous vitamin supplements

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/10/2011 11:11 AM (GMT -6)   
Aldolase is an enzyme that helps convert glucose into energy. It is found throughout the body but is primarily found in high levels in muscle tissue. It is elevated in the bloodstream when a patient has muscle or liver damage or disease.

WebMD says,
"A C-reactive protein (CRP) test is a blood test that measures the amount of a protein called C-reactive protein in your blood. C-reactive protein measures general levels of inflammation in your body.

High levels of CRP are caused by infections and many long-term diseases. But a CRP test cannot show where the inflammation is located or what is causing it. Other tests are needed to find the cause and location of the inflammation."

My Vitamin D is low too. I have to take 50,000 IUD every week. It comes from avoiding the sun.
Joy

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2607
   Posted 9/11/2011 9:45 AM (GMT -6)   
nolatoco, sorry you are in so much pain, but good for you for changing rheumies. I hope this one helps you feel better. And kudos for working on a half marathon. Impressive, especially with all the pain you suffer from.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin 1200mg, synthroid, spironolactone, actonel, niaspan, simcor, lunesta, cymbalta 90mg, norco 10, vitamin D, Calcium, Multi Vit. Fish Oil, low strength aspirin

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1342
   Posted 9/11/2011 10:05 AM (GMT -6)   
Aldolase is often a marker for muscle problems from myositis diseases. You have a diagnosis of UCTD that could include some muscle involvement.  The standard test for muscle inflammation is cpk but that does not always pick up low level inflammation and some patients find that aldolase tests are a more accurate indicator of a flare.
 
Complicated stuff and while each of these tests has significance it is only when the doctor reviews the tests plus clinical symptoms that a true picture emerges.  All of these AI diseases are elusive and overlapping connective tissue diseases can be very complicated.  I have MCTD (lupus, scleroderma and polymyositis) and could write a book on it after 6 years.
 
The most important test is one that only you can do.....how you feel.  Labs can be wrong or contradictory but if you feel like crap...something is going on no matter what the labs show.  If you feel good, don't worry and hope the next set of tests is more normal.  If a trend emerges then it is time to change your treatment.
 
Bill

nolatoco
Regular Member


Date Joined Jun 2009
Total Posts : 66
   Posted 9/14/2011 3:27 PM (GMT -6)   
Bill,

Thanks so much for the info. I feel horrible, though. Not sure how I will get through 6 more weeks of feeling like this before running those tests again. I think in the last 2 weeks there were about 2 days that I actually felt good.


Patty,

Thanks for the kind words. You seem to always have supportive things to say.


Couchtater, thanks for your help as well :-)
Diagnoses- Hypothyroidism 2010, UCTD 2009, PCOS 2008, asthma 2001, IBS 2010
Daily Meds- Vitamin D, Synthroid, Vitamin B12, LoEstrin, numerous vitamin supplements

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1342
   Posted 9/14/2011 8:38 PM (GMT -6)   
My observation is that you are not on any controlling meds and your disease appears to be active.  Most likely it will not control itself without help.  Early and aggressive treatment is usually the best course of action to get your immune system under control and than taper meds to more tolerable ones or none at all but that process takes a long time.  6 years in my case.
 
Talk to your new rheumy about how she would get your disease under control.  Taking various supplements might not be detrimental but they are not going to get your immune system under control.
 
Bill
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