I'm in the beginning stages of SLE
shuki_cotren
Posts: 328 Member
I know this is going to sound so stupid because I don't have bad lupus or anything, but this is my story, and I still want to be part of this community.
I was diagnosed as having lupus in 2011 when I was 24. I was having a bad recurring rash since the end of 2008 (I was 21) and I though my life would forever be ruined because of it- it was painful (the quarter-sized or sometimes larger red bumps filled with fluid and were tender to the touch and to lay on if they were on my back). They were on my arms and my back mostly and the arms caused me to always wear long sleeves even in the summer and never go swimming or to the beach. I felt I always had to hide.
When I started plaquenil in 2011 my life changed. The rash went away completely- even the purple marks the rash had left finally faded pretty much.
I have never had severe joint pain or other problems associated with lupus, but my doctors have told me that I am to NEVER go off of plaquenil. I have had 2 rheumatologist opinions, and based on my blood work, they both say the same thing. I was guilt-stricken for being pregnant and breastfeeding while still taking 400 mg a day.
I have heard lots of stories of people going off of plaquenil or other medications based on their autoimmune disease diets, but I'm afraid because I would be going against my doctors opinion. I want to be the healthiest I can be so I can have more kids. It's a struggle to believe the importance of plaquenil for me when I don't have the joint problems or other problems... but at the same time I want to prevent those things from occurring.
That's my story!
I was diagnosed as having lupus in 2011 when I was 24. I was having a bad recurring rash since the end of 2008 (I was 21) and I though my life would forever be ruined because of it- it was painful (the quarter-sized or sometimes larger red bumps filled with fluid and were tender to the touch and to lay on if they were on my back). They were on my arms and my back mostly and the arms caused me to always wear long sleeves even in the summer and never go swimming or to the beach. I felt I always had to hide.
When I started plaquenil in 2011 my life changed. The rash went away completely- even the purple marks the rash had left finally faded pretty much.
I have never had severe joint pain or other problems associated with lupus, but my doctors have told me that I am to NEVER go off of plaquenil. I have had 2 rheumatologist opinions, and based on my blood work, they both say the same thing. I was guilt-stricken for being pregnant and breastfeeding while still taking 400 mg a day.
I have heard lots of stories of people going off of plaquenil or other medications based on their autoimmune disease diets, but I'm afraid because I would be going against my doctors opinion. I want to be the healthiest I can be so I can have more kids. It's a struggle to believe the importance of plaquenil for me when I don't have the joint problems or other problems... but at the same time I want to prevent those things from occurring.
That's my story!
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Replies
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If you do decide to go off of plaquenil against your doctor's orders, just be sure your monitored while your off. I went off of it while I was pregnant and breastfeeding, and though my doctor was unsure of the effects, we decided together and I was closely monitored.0
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It's motivating to hear that you went off plaquenil without firm disapproval from your doctor. I am not planning to get pregnant for a year or more, so maybe I'll find a doctor before then that is more on board before I go through with it- I would like the support of knowing my doctor is in it with me and helping me monitor how it goes. Thanks so much for sharing your experience!0
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I would like to offer you, and everyone here, an invitation to a closed (private) support group on Facebook. We are very close knit, supportive, and we have people from all walks of life, from all stages of the lupus ride. The name of the group is Lupieville. Because it is a private group (doesn't show up on your wall for anyone but members and yourself) you have to request membership. If you send a request and just mention Jen Beckner in your request the moderators will usher you in. I am very active on the board and act as a helper to the moderators.0
