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Mildly stricken; blue
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Discussion Starter #1
Hi!

My lupus is mild, but I've had an ongoing, on and off flare building over the past two months, and have had a low-grade fever for several weeks now, with cough (tried antibiotics but they didn't stop the cough or fever). The fatigue is the worst of it, especially since I just moved to a new city and need to, like, build a life! Instead, I am in bed or blah and brain-fogged in.

The morning bone aches have returned, which, as I'm sure you know, makes it quite difficult to get out of bed. (why is it always the feet, the feet that hurt so much?)

I'm already on plaquenil, 400mg. I'm waiting to be referred to a new rheumatologist, since I just moved cross-country. I'm guessing that a few weeks of prednisone might be the best treatment. But, I've had abnormal paps/cervical dysplasia for two years now (ever since my first round of steroids), and have been waiting for my body to fight off the infection and clear the abnormal cells. I certainly don't want to increase my risk of cervical cancer, nor do I want to prolong the process of booting those abnormal cells out after waiting and stressing for so many months!

Has anyone ever had this treatment conflict come up? What did you and your doctor decide to do? Hold off on steroids until the cervix is better, or do a quick run of steroids while monitoring the cervix?

I recently stopped taking NSAIDs (looking at it now, things did get a bit worse after this - the aches, more consistent fever) because of very bad stomach pain - it was as if I swallowed sewing needles. My stomach is much, much better; I'm taking acetaminophen for pain and tagamet to prevent acid. So, I don't know if I can take NSAIDs!

What do you suggest? Are there other treatment options I'm overlooking? Is there anything I can do in the meantime, while waiting to see a new rheumie?

Can one ever wait out a flare, or is it not worth it? Have you all pretty much learned to nip increased lupus activity in the bud with pills?

Thanks in advance for your help with this!
 

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The treatment choices we have to make are ultimately ours to make, but without a doubt you should take your doctor's advice on the matter. Possibly multiple doctors opinions (like gynecologist and rheumatologist). There are so many factors to consider and weigh out - it's really hard to give advice on this one. Do you have very low grade dysplasia that is stable or is it high grade that has required treatment? How bad is your current lupus flare - are you able to do the minimum things you need to through the day?

I've not faced your specific dilemna, but I have just let flares pass without extra medication like prednisone. I have not found that I always need to start taking some extra pills to get through a flare. When a flare is really bad though and getting in the way of doing basic life care things and preventing me from really interacting with my daughter - that's when I am ready to start taking prednisone for a while. I don't work - so that is no longer an issue.

Whatever happens... I hope in the end you are comfortable with your decision & the flare passes soon.

PS I'm just like you too where my feet hurt something terrible in a bad flare & it's hard to walk on them. I have to stay in shoes or my indoor slippers at all times or it can be unbearable!
 

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Mildly stricken; blue
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100 Posts
Discussion Starter #3
Thanks for your response!

I'm not working right now, so I am able to wait it out a bit longer, but I need to get a job as soon as I can. My mom's supporting me right now, and I think that both she and my roommate are looking at me like...it's time to get it together! We've let you laze about long enough.

It is good to know that a flare can pass on its own - I mean, I know I've probably read that, but it's good to hear that it's been your experience. It's always the not knowing that is the worst, and it seems like you learn how to work with this more and more as time goes on, yes?

My cervical dysplasia is very low-grade, so maybe I could do steroids, if needed.

I'm in-between doctors, having moved cross-country, so I'm in limbo as my referrals and appointments are set up, so I really appreciate your feedback and experience!
 

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Dr Hughes the well known British lupologist said in a talk that " all women with SLE had abnormal PAPs". I was so startled that at the end of the meeting I ran after him to confirm that I had heard right.

If you google (lupus dysplasia) or similar, you'll find a number of reports on studies of the apparent connexion between SLE and HPV. They mention that steroid use does not seem to be a factor in the rate of increase. This suggests that using steroids would not make the condition worse once it exists, but perhaps that is a false assumption.

I hope you can find good doctors soon and start feeling better

Good Luck
Clare
 
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