Not so fast...make that 6 weeks.

I guess I got a little ahead of myself in Monday's post. Turns out that my doctor found traces of protein and red blood cells in my urinalysis from my appointment last week - so instead of 3 months, I'm going back to the doctor in 6 weeks. Bummer!! I was so proud of the fact that I was going to go so long between appointments - an indication, I thought, of how well I was doing.

Truth is, I kind of expected my test results to reveal a little disease activity (and, in this case, possible kidney involvement, which I've had many times before.) I've been running at full speed the last few weeks - the excitement of my book coming out, the book signings sprinkled here and there, and all of the "to-do's" that I've convinced myself have to be done pronto - all of which have caused me to skimp out on my rest. I noticed one of my fingers swelling just a bit about a week or so ago...but I'd convinced myself it was because I'd exercised outside in the heat, or from too much salt in my diet. In fact, I didn't mention it to my husband because I figured it wasn't anything to be concerned about. Boy, was he upset when he found out I'd sloughed off a swelling digit! And you know? He was right to be peeved. Just like that, I had slipped back into that familiar phase of ignorance that I've been guilty of in the past. Don't want to admit the disease is afoot? Just find something else to blame it on. Ugh! I'm so predictable! I suppose the three-prong approach I mentioned on Monday won't just be something to consider over the next few months. It's now become a must. At least I prepared myself to adjust.

As far as the kidney involvement goes - this is how the routine has gone in the past: a trace of protein shows up in my urine (indicating that my kidneys aren't filtering properly). I do a 24-hour urinalysis to determine if this, in fact, is the case. If it is, we up a medication slightly, and then I get retested soon after that to see how things are going. And, yes, I usually have to curtail my activity level at the same time. I find that reducing stress and fatigue make just as much of an impact as increasing a medication.

I'll be sure to keep you posted!


Christi said…
Hi Sara. I've been following your blog for a few months and have a question for you. I've read that you stayed on Plaquinel during your pregnancy and then you also had a link at one point to a doc who I think specialized in lupus and pregnancy and also talked about Plaquinel being safe to use during pregnancy. I was hoping you could send me a link or two about that. I was diagnosed with mild connective tissue disorder a couple of years ago during my 2nd pregnancy b/c of a positive ANA and proteinuria. My symptoms have been pretty mild, but I'm on Plaquinel and do have flair ups when I try to go off it. I also have osteopenia in my hips (partially from genetics and partially from being on prednisone for a while), so I'd really love to avoid steroids and stay on the Plaquinel when I get pregnant again. I'm just concerned my OB is going to try and take me off it when I go in for a consultation and would love some facts to back up my reasoning for staying on it (as opposed to just saying I've heard it's okay). Thank you so much for your help!.
Sara Gorman said…
Thanks for writing in! I'm a card-carrying member of the osteopenia club, too - so know that you're not alone in wanting to stay off prednisone. Re: Plaquenil - I was on the medication throughout my entire pregnancy (in fact, I switched from Cellcept to Plaquenil b/c my doctor considered it safe), but did reduce my dosage from 600mg to 400mg/day. As you've heard, doctors recommend that you're on as few medications as possible while pregnant, and most literature encourages you to stay off of Plaquenil. However, my doctors simply felt that keeping my disease activity in check far outweighed the risks of plaquenil to the baby during pregnancy. That said, my perinatologist spent my very first consultation appointment (before I tried becoming pregnant) encouraging me to adopt, use a surrogate, etc. because he wanted to make sure I understood the issues involved in a lupus pregnancy. Of course, when I returned to the next appointment and declared that I wanted to proceed to try and become pregnant, he was all for it. I suppose he was simply offering me a more prudent, cautious option at the onset, which is what many doctors do, particularly in regard to pregnancy and medication.

As mentioned above, in most readily available drug literature, neither Plaquenil nor Lovenox (which was also added to my drug regimen during my pregnancy) are recommended during pregnancy, so it really is a conversation that you must have with your own doctor. If he’s particularly insistent, you might probe deeper to make sure he doesn't have any underlying concerns regarding your disease activity, high-risk pregnancy, or the medication. (Maybe he's thinking something that he hasn't yet shared with you.) Perhaps you could even ask him if it would help if he asked around - I don't think it's too much to ask that he double check with a few of his respected colleagues.

As far as links and other info go - I can offer you the following: Here's the phone number to the high-risk perinatology practice I went to - 703-698-5350. All the doctors are great, and Dr. Khoury, in particular, is the Director of Perinatologists at INOVA Fairfax Hospital.

And here's a link to ToxNet, a website that the nurses in the hospital turned me on to after I delivered Deirdre. I believe it’s a National Library of Medicine resource – there’s no reference that I can find for Plaquenil and pregnancy, but there is for Plaquenil and breastfeeding. Once you’re on the site, type in plaquenil in the search field, and you’ll find a short report on the drug (information that helped me decide to go ahead and breastfeed while on the drug.) It may serve as a good talking point between you and your doctor.

You may have also read on my blog that during the course of my pregnancy, Plaquenil came onto the approved list of drugs to take while breast-feeding. That might be something else you could ask/discuss with your doctor. (It could only be good news for you!) What I didn’t understand was why, in my case, the drug would be doctor-approved for pregnancy, but not for breast-feeding. There’s an interesting distinction, and I’ll be sure do a post about why a drug may be safe for pregnancy but not breastfeeding.
Best of luck – and let me know if you have any further questions. Not sure I gave you the answer you wanted, but hopefully some of it will be useful. Let me know how things turn out! (Oh – and I wouldn’t wait to discuss the issue with your doctor until you’re ready to try to get pregnant. There’s no harm in letting him know you have this concern, and that you’re looking to him to help make a wise, informed decision.) Good luck!

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