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why Dr. don't want me to continue Plaquenil?

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Posted 7/15/2011 11:28 PM (GMT 0)
Dear SLE friends,

I had been diagnosed of SLE 9 years ago in home country. At that time, my symptoms was just a coin sized skin rash on the cheek and low WBC and swallen feeling in the throat without any pain for months.  But repeated blood works shown ANA always postive 1:160 and C3 complement weakily lower than normal.  All the other blood results are OK.  The DR. in home country prescribed Plaquenil to me since then.  My ANA was controlled well (in 2007 and 2008 as low as 1:40).  In 2007 I moved to America and has since 2007 3 Rheumatologists.  The first one acknowledged that I had SLE and continued my Plaquenil prescription. But he closed his practice in 2008.  The 2nd Rheumatologist found me not typical of SLE and therefore referred to the current Rhematologist who specializes in SS.  He yet found me also not typical of SS.  At the end of 2010, he stopped my Plaquenil precription.  I then had skin rash on the cheek again in this March and a series of "questionable insect bites" on the limes.  My throeat again felt swallen and uncomfortable for 2 months.  My hair fell a lot.  My most recent blood works (June 2011) shown my ANA becomes 1:320 and C3 is lowered also. WBC, neutral and lymph cells are lower than normal now.   Yet, he still want me to wait until my next appointment with him in October to repeat my blood works.  I asked him again if I shall resume Plaquenil.  Who know why the Dr. is refrain from prescribing Plaquenil?  I had been on Plaquenil for so many years and symptoms are well under control.   I can't talk my Dr. directly he always let his secretary answer phones.  Thanks in advance. 

Posted 7/16/2011 1:05 AM (GMT 0)
I don't know why he's holding off on the plaquenil. Maybe you need to see him sooner and ask why the wait?
Posted 7/16/2011 1:20 AM (GMT 0)
Perhaps you should consider getting a second opinion from another rheumatologist who is familiar with Lupus rather than waiting till October.

One way to find a doc interested in and knowledgeable about lupus is to visit www.lupus.org and find the chapter closest to you. Once you find them, give them a call and ask which local doctors are active in the organization. While they won't give you a recommendation for a specific rheumy, at least you will know which ones are up to date on Lupus.

PS. What SS are you referring to?
Posted 7/16/2011 3:21 AM (GMT 0)
Dear friends,

Thanks for your advice. I felt that I have offended this experienced SS (i.e. Sjogren Syndrome) specialist by asking him to reconsider my concerns this morning through his secretary on the phone. As the secretary put it " Dr. XXX can't stress that there is nothing dangerous now. We have lots of patients who have ANA positive". She and he just won't consider to explain to me why I "worried too much".

I read some of your previous discussion about ANA and now understand that maybe doctors reply more on physcial symptoms than blood work results. I was just hoping the current weak physical sympton and not medication won't develop into big issues in the next few months. I also attempted to ask to be transferred to a Lupus Specialist but was refused by the Lupus Specialist's secretary because they both work in the same hospital and department in my city. Unfortunately, this hospital seem to be "the best in Rheumatology". I will try again to call our local Health Authority to find out other options. I am in Canada right now. I am so lucky to find your forum and can get access to your experience and knowledge. Doctors are trained professionals but I also believe chronical disease patients sometimes knows no less than the doctors about their ailment. I will keep coming here to learn from you all. Have a great weekend!
Posted 7/18/2011 10:22 PM (GMT 0)
From what I've been told, auto immune diseases can be difficult to categorize. Sometimes people have more than one as well. Sorry you have been getting the run around! It seems to happen a lot with chronic illnesses. I've had similar situations and am waiting for a diagnosis myself. They think I have a mixed connective tissue disease which includes symptoms of a few of the AI diseases. It's very confusing and frustrating. Good luck to you.
Posted 7/23/2011 8:35 PM (GMT 0)
My doctor just took me off plaquenil for a few weeks because my colon biopsy came back that it was causing inflammation in the lining which is why everything I eat goes right through me. I've been on plaquenil for almost 3 years and I feel really good, no flares good energy, and I'm afraid of what might happen if I can't take it anymore. I wish I didn't have to choose between my stomach issues and my lupus getting worse!
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