Friday, June 01, 2012

Tuesday, December 01, 2009 Jessie asks

Q: What is the correct procedure for coming off plaquanil?

I am 74 years old. In my 20's I had hyperactive thyroid. Since the removal of the thyroid & parathyroid glands I have taken calcium and rocaltrol every day.  They say my bones are like titanium.  When I was 35 I was diagnosed with Lupus, (SLE). In my early 60's Discoid Lupus was diagnosed.  I was given plaquanil.  For years I struggled with back problems. Last year they operated on my back.  A vertebra just below my waiste was out of place, horseshoeing my spinal column. I have gotten along trememdously.  Thank the powers that be that all that debillitating pain I suffered for so long is gone. I never expected to be totally pain free, but I was, untill now.  Since I have done so well and the Lupus is at bay for now, I decided to quit taking the plaquanil--cold turkey.  Now my back is giving me problems again.  I was wondering if the plaquanil was what had been holding my back pains at bay and if coming off it as I did could have kick started it.  I have no Lupus Dr's anymore.  My Dr. at Duke died and my local specialist moved away.  I am at the mercy of Dr's who treat me for other problems and am being told different things concerning my health care.  Please help. 

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Lene Andersen, Health Guide
12/ 9/09 12:53pm

first, It's important to not go off your medication without consulting a doctor first. However, I understand that it can be difficult to find another doctor - try looking at the website of the American College of Rheumatologists to find one in your area. I would also recommend that you go to the nearest teaching hospital, as they usually have a good Department of Rheumatology.  The doctors that treat your other conditions may also be able to refer you to a rheumatologist - if you have lupus, it is essential that you have a doctor. Luckily, it sounds as if your medical condition is generally fairly good, but should you someday have a flare, you need to have somebody you can call.

 

It's quite likely that the pain in your back was caused partly by the problem that was solved by surgery and partly by inflammation that the Paquinil was getting under control. The first thing you need to do is to go back on Paquinil to protect your body and then go out there and advocate for yourself to find a rheumatologist. Talk to your primary care physician, talk to any other specialists who you have about a referral and you may also want to check out Arthritis Introspective, which is an organization of people who have RA offering support groups in different areas. If there is one near you, you may find a rheumatologist through one of the other members.

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By Jessie— Last Modified: 12/27/10, First Published: 12/01/09