Plaquenil During Pregnancy . . . yes? no? - HELP!

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New Member

Date Joined Sep 2008
Total Posts : 2
   Posted 9/12/2008 7:07 PM (GMT -6)   
Hi all, I am a newbie. I am a 33 year old with Lupus, in remission for the last 5 years, and generally healthy.

I met with my high-risk OBGyn today (not yet pregnant but hoping soon) and she suggested that since I have been in remission for the last 5 years, that I might want to think about going off my plaquenil before trying to get pregnant.

Now, my rheumatologist said it was ok to stay on it, that the risk to me (by going off it) would be higher than the risk to a fetus (by staying on it).

I am concerned that if I go off it and flare it may prevent me from having children in my timeframe (all women in my family go through menopause around 40, and I want more than one child). I don't want to have a flare, and I don't want to risk my kidneys and not being able to carry a child.

I'm not sure what I should do...I don't want to wait too long, but I want to do what is going to be best for both a child and myself.

She just tested me for the SSA/SSB/Anti-Coag today. I should know in a week. My old tests (5 years ago) said my RO was a 5, and my LA was a 1, but I don't know if that is good or bad?


Post Edited (PaintedLady) : 9/13/2008 8:55:21 PM (GMT-6)

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 9/12/2008 8:40 PM (GMT -6)   
Hi PaintedLady,

Welcome to the forum. I'm happy to read that you are doing SO well!!

What a dilemma!

One thing to think about: Plaquenil takes MONTHS to fully build in your body. I would assume that it also takes MONTHS to know how bad off you'd be if you went off of it.

I'm bumping up this topic, hoping someone who has experience with plaq during pregnancy will see it. You could edit the title of your post by clicking on the pencil in the upper right of your first post. Try including the words "Plaquenil During Pregnancy . . . yes? no? - HELP!"


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 9/13/2008 11:08 AM (GMT -6)   
Hi PaintedLady. Welcome and I'm glad to hear that you have been in remission for so long and I understand your concern about going off of plaquenil. I don't have any experience with this, so I really can't help. I would suggest talking more to your docs and especially the OB to find out what the risks might be if you stay on plaquenil.

I hope that some of our members who have been pregnant while they have had lupus will see this and be able to tell you their experience.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 9/13/2008 12:28 PM (GMT -6)   
Hi E, I have no idea about your question but I saw you were new and wanted to say hello. Like Hippi said we have members that have gone through pregnancy with Lupus and everything turned out well.
Possible scleroderma.  stage 4 COPD,  Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, spirivia,aciphex,lasix,inderal,pot.chlor.,B12 
 Did you ever know that your my hero?

New Member

Date Joined Sep 2008
Total Posts : 2
   Posted 9/16/2008 12:21 PM (GMT -6)   

Veteran Member

Date Joined May 2005
Total Posts : 7720
   Posted 9/16/2008 12:50 PM (GMT -6)   
Sorry you haven't gotten more responses -- I think our pregnancy members are now all off nursing their babies!

If you type "plaquenil pregnancy" in the box at the top of the page where it says "google custom search" / "search site" you'll be able to find all the threads where various members discussed what happened with their meds during their pregnancies. ...I got 4 pages of pointers, so information is available here! Hopefully that will help you out.

Take care,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

Regular Member

Date Joined Aug 2008
Total Posts : 431
   Posted 9/21/2008 7:40 PM (GMT -6)   

Hey Painted Lady,

I am new to the list too, and wanted to welcome you too.  I too have no answers for you, but it seems you have gotten some good advice, with the four pages available on it.

Hope your search will be rewarded.


Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
aspirin daily, multivitamin daily, Arthrotec 50mg twice daily, Meclazine 25 mg, as needed 4x daily, Hydoxychloroquine (plaquinil) 200mg twice a day, Metoclopomide 10 mg, 4x daily, Doxepin 50 mg one cap 4x day, Metoprolol 100 mg daily, Levothyroxine (synthroid) 50 daily, Amlodipine 5mg daily, Crestor 10 mg one tab daily, Lisinopril 40 mg, one tab daily, Omeprazole (prilosec) 40 mg daily, Plavix 75mg daily, promethazine 25mg x4 daily, Restasis one drop in each eye every 12 hours

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 9/21/2008 8:06 PM (GMT -6)   
HI there,
Another welcome, but no advice for you. Sorry. I"ve never been pregnant or taken plaquenil so I'm the worst person to get advice from on either subject!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

New Member

Date Joined Jul 2008
Total Posts : 10
   Posted 9/21/2008 9:03 PM (GMT -6)   
I'm new to this forum too and I usually don't post but I thought I could give you just a little bit of advice.
I was in remission for about 4yrs and on plaquenil when I decided to try to get pregnant and my rheumy was the one who told me to wait until I was off of plaquenil for 6mos.(I think) before trying.  I listened and I was also VERY worried that I would flare up but I was pretty lucky actually.  Now that I think of it my rheumy kept me on a low dose of prednisone-I think it was only 10mg during the pregnancy to kind of "make up" for the plaquenil and I didn't have any problems at all.  Actually, I went into remission and I decided to stay pregnant and ended up having four children all in 5 yrs b/c pregnancy was so good for me but this is not true with everyone so don't go by my account.
Did your rheumy say anything about just trying to go off the plaquenil and seeing how you do before you try to get pregnant?  I would also ask about the prednisone if anything does begin to flare up.  Just a couple of thoughts.
Good luck and I hope you get some more responses here.
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