Monday, February 22, 2010

Plaquenil and pregnancy

As I mentioned last week, I was just at my rheumatologist's for a flare and he upped by dosage of Plaquenil (to 200mg twice a day, instead of just once a day). He reitterated that Plaquenil is safe during pregnancy, so he was hopeful that it would work for me and be a long-term drug.

A couple of days after starting the higher dose, I was having trouble sleeping, so I went to check out the prescribing information to see if it was a side effect. Turns out - no, sleeplessness is not a side effect of Plaquenil. BUT, I did find a section (in the Sanofi-Aventis prescribing info) that stated:

"Usage of this drug during pregnancy should be avoided except in the suppression or treatment of malaria when in the judgment of the physician the benefit outweighs the possible hazard. It should be noted that radiactively-tagged chloroquine administered intravenously to pregnant mice passed rapidly across the placenta. It accumulated selectively in the melanin structures of the eyes and was retained in the ocular tissues for five months after the drug had been eliminated in the rest of the body."

So at this point, I'm like - WTF? I don't want to risk a baby's eyesight! (For those of you not familiar with Plaquenil, it can build up in the eyes and cause damage. Plaquenil users like me need to have yearly eye exams to make sure it's not causing any damage.)

But, I really do trust my doctor and didn't think he'd lead me wrong, so I decided to do some research.

When you start poking around for this info, you find a lot of pros and cons, yeses and nos all around.

On the Johns Hopkins' site about rheumatoid arthritis drugs, they state that DMARDs should be stopped during pregnancy, but then in the next sentence say that "Hydroxychloroquine (Plaquenil®) is probably the safest DMARD for use during pregnancy." Then there's this article from the Lupus Foundation, in which a Johns Hopkins' doctor says she also continues Plaquenil during pregnancy because the risk of flare is more significant than the risk of side effects.

I finally found this article that indicates Plaquenil is considered an appropriate option for pregnant & breastfeeding women when needed. It states that the build up in the eyes was actually from a related, but more toxic, compound of the drug. Chloroquine (the drug referenced in the above the prescribing info) is not the same as hydroxychloroquine, which is what's in Plaquenil.

And the FDA says Plaquenil is a category C, which basically means you can use it if the risks outweight the benefits.

But, how long did it take me to find that? A while! It'd be nice if these "expert" sites (Johns Hopkins) and the prescribing information itself would be a little less CYA (cover your a**) and present all the info. But, working as a writer and dealing with CYA issues myself, I guess I understand. I'm just glad I know how to dig down through the research a little more. I hope my recap here will help someone else, too!

50 comments:

  1. Thank you for the info. My doctor is prescribing plaquenil for my pregnancy to help prevent miscarriage. It scares the crap out of me for the same reason you quoted I saw that as well. My CRP test is CRAZY high 37 which indicates some sort of inflamation and the doctor is worried about my pregnancy. I am having twins and am 6 and a half weeks. In baby B side the doctor is seeing localized premature onset of intervillious flow (try and find info on that mouthful) he feels the plaquenil will help stop that. I wish you a healthy 9 months!

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  2. Thanks for the info. I haven't read through all of your blog so I apologize if you have answered this elsewhere. I have RA and am going to start trying to get pregnant. I went off Plaquenil roughly 6 months ago in preparation but now am experiencing a major flare up. My rheumatologist thinks I should go back on Plaquenil but reading about it online makes me nervous. Additionally, my ob-gyn believes in getting off as many drugs as possible. Can I ask what you ended up doing and how it worked out? Or if you ended up finding clearer answers about this? I'm also highly dependent on celebrex which I plan on stopping once I'm pregnant and am on Enbrel which I believe I will continue taking during pregnancy.

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  3. Thanks for the info. I haven't read through all of your blog so I apologize if you have answered this elsewhere. I have RA and am going to start trying to get pregnant. I went off Plaquenil roughly 6 months ago in preparation but now am experiencing a major flare up. My rheumatologist thinks I should go back on Plaquenil but reading about it online makes me nervous. Additionally, my ob-gyn believes in getting off as many drugs as possible. Can I ask what you ended up doing and how it worked out? Or if you ended up finding clearer answers about this? I'm also highly dependent on celebrex which I plan on stopping once I'm pregnant and am on Enbrel which I believe I will continue taking during pregnancy.

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  4. Anon #2 - I ended up deciding not to have a baby right now. But, my rheumy continues to say that Plaquenil is safe during pregnancy. And from what I found, it does seem to be one of those drugs that's OK to use if the benefits outweigh the risks.
    So, based on what I know, if I were going to start to try for a baby now - I would stay on the Plaquenil until I had a confirmed pregnancy. And, if my RA was getting better (as it often does during pregnancy), I would try to get off it. But if I needed it, I would be OK with saying on it.

    A course of prednisone might be an alternative for you if you're really unsure of the plaquenil. (Prednisone is generally considered OK during pregnancy.) Good luck to you!

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  5. I concur with RA (maybe) Mamma; I am a 32 year old female who has severe RA (for the past 31 years). I have been on, and off, many drugs, including Plaquenil and Prednisone. Both my Rheumatologist and my OBGYN are working together to help me get pregnant. Three years ago I got off all my RA meds (Plaqenil, Arava, and Enbrel); 6 months later my RA flared up (worst it’s been since onset). Due to the Pregnancy warnings I fought the idea of getting back on Plaqenil. Meanwhile, I was only taking Prednisone to get me through the next flare up... I did that for over a year and a half.
    I finally realized that my health was most important… baby or not. Besides the fact… who was I to have a baby if I couldn’t even take care of myself due to continuous RA flare-ups. So I started Plaqenil; but only after both doctors assurance that it would be okay to take Plaquenil, while I was trying to conceive, and with assurance that I would stop Plaquenil sometime after conception, but during 1st trimester.
    For the past 5 months I have been flare free. I am starting pregnancy planning again (hopefully this time next year I will be in my first trimester!!).
    Find a Rheumatologist and OBGYN you trust and communicate well with... then ask them to work together, to help you through the process, and address your concerns.

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  6. my Rheumatologist insists taht i should continue taking Plaquenil and my OBGYN insists that we should stop it before getting pregnant by 2 or 3 months. what should i do now?

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  7. Anon - maybe have your OBGYN talk to your rheumy? While OBGYN's are generally considered "the experts" on pregnancy, in this case, your rheumy may have more info about plaquenil, since he/she probably prescribes it often.
    Good luck!

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  8. Hi RA (maybe) Mamm. Do you know anyone who was on plaquenil and prednisone during pregnancy and delivered a normal baby ?I will start to get pregnant and I am still on plaquenil and prednisone. for the past 2 months i heard a lot of noes and yeses. what do you think?

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  9. D.M. - prednisone is very commonly taken by RAers during pregnancy. Though, many are able to wean off it once they get pregnant. With any pregnancy (even if no medications are taken), there is always a small risk of birth defects. It is my understanding that prednisone slighly increases the risk of premature birth or cleft palate, but not significantly.
    As for plaquenil - I know one blogger who took Plaquenil - Clare from Muscles and RA (see http://www.blogger.com/profile/13062114889126850617). Her baby was healthy - and is now a healthy 2 or 3 year old!

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  10. I am 23 weeks along in my second pregnancy and started taking plaquenil again at the recommendation of my high risk OB. He said he's had many lupus patients who have had to be on it while pregnant and believes that we should not have to suffer with this pain while pregnant. Of course, he reported all of this to my rheumy and regular OB and all agreed. I did better with flares with my first child. I only needed a steroid shot here and there. That is SO not the case this time as I've started to flare sooner and more severely with this pregnancy. Work is getting more difficult as well as housework and taking care my sweet little boy. I hate it but I'm hoping and praying like crazy that plaquenil will work soon! I'm hoping for a flare-free, healthy pregnancy for all of you!!

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  11. RA (maybe) MammaMay 18, 2011 at 4:04 PM

    Thanks for your insight, Diana. Best of luck with your pregnancy - hang in there!

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  12. I was diagnosed with rheumatoid arthritis in Jan09. I was prescribed Sulphasalazine and Hydroxycloriquine but within a few weeks and before I had started taking the meds I discovered i was pregnant. My disease is quite severe and the level of actity was very high with a high positive rheumatoid factor. I decided not to start the meds because i was pregnant and, due to a severe flare up very early into the pregnancy, had to have a steroid jab which was quite effective. After the 1st trimester my RA completely died down. I think this is quite common in pregnancy. I actually forgot that I had RA to be honest!

    My waters broke prematurely at 32 weeks. I have since discovered that this is relatively common in RA sufferers. I was kept in hospital and finally delivered by C Section at 35 weeks. My daughter is now 19 months old and healthy
    (she was also born healthy but small at 5lb)

    About 2 months after my daughter was born I had a massive flare up and could barely move. At one point it was so bad I had to change her nappy with my teeth! I found it hard to even get dressed or use the toilet. At that point I decided to stop breatfeeding and started taking both sulfasalazine and hydroxycloriquine. Since then, with the odd twinge now and then, my RA is very well controlled. I have regular blood tests and see my consultant every 3 months.

    However I am now ready to try to conceive baby no.2 and have serious reservations due to the meds that I am on.
    My consulltant has told me time and time and again that all evidence suggests it is safe although my GP thinks otherwise and suggests stopping at least hydroxycloriquine 2 to 3 months before conception. I have done lots of reasearch over the past few weeks and have come accoss conflicting views but ultimately I do not want to risk any abnormalities in my unborn baby due to these meds.
    I am now at the point of even thinking maybe I should not have a second baby although this is very upsetting for me.
    I really dont know what to do for the best.
    Does anyone have any specific experience of being on these meds and having a problem free pregnancy and healthy baby?

    Also I was not informed about the possible problems with loss of sight. I am a contact lens wearer and have recently been suffering occasional blurry vision. I thought perhaps I needed stronger lenses but now Im worried it might be a side effect relatin to hydroxycloriquine??
    I was not told that I needed to have annual eye examinations, only blood tests due to the sulfasalazine?

    Very worried and am looking for any advice.
    Thank you

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  13. Anon - I have been taking 400 mg of plaquenil (hydroxycloriquine) daily for about 2 years. Both of the rheumatologists I've seen greatly emphasized the need for yearly eye exams. Some doctors want them even more - every 6 months. If you are having vision issues - I would definitely get it checked out, just to be safe.

    Also - my one thought on rheumy's saying the drugs are OK and GPs warning against them... In my opinion, it's the rheumy's who treat people with RA every day who have more experience with those meds.

    One last thing, here in the U.S., hydroxycloriquine has been OK'd by the Arthritis Foundation for use in pregnancy.

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  14. I'm sorry, I am another one who hasn't read all the comments... but here is what I have experienced, and I am sorry if it is rambling. :)

    I was dx with RA 3 months before I got pregnant with my first (now 5). I have two girls and just found out I am pg with #3. (wow!).
    I have been taking Plaquenil (400mg, 1x/day) only when not pregnant. My rheumatologist from when I was pregnant with the first two told me absolutely no Plaquenil and stop it cold turkey should I find out I was pg. (He did say it was safe for breastfeeding as a tiny trace amount is passed into milk). I stopped my dose this morning when I discovered I was pg as per my OB/GYN's instructions. With my first pregnancy, I was in remission the entire time. With the second pregnancy, I experienced an excruciating flare up nearly the entire 9 months. It. Was. Horrible. I took 10mg prednisone in controlled (10-day) bursts to manage it.

    I did also read on Arthritis Magazine that hydroxychloroquine is safe for pregnancy, but I am skeptical.

    As to eye exams, I have also been required (by my new rheumatologist) to have yearly eye exams due to the Plaquenil. In fact, she refuses to refill my 'scrip until I have the exams and blood-work as well (standard RA work-up).

    I also was taking Voltaren to control flare-ups, but I stopped that when I began a vegan diet. I know - talk about extreme. It's hard. I have been (high-protein) vegan for 3 months, and while it is rather difficult, I have only had 2 minor flares - both after eating meat and/or cheese.

    I also agree, I would trust a Rheumatologist's advice on rheumatism drugs over that of a GP - they simply have more experience and are exposed to more current research.

    Again, I'm sorry if this sounds rambling and possibly full of useless information. I came across your site after Googling Plaquenil and Pregnancy. :)
    -K

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  15. Hi there - I hope you are still reading the comments on this thread! I had my first rheumatologist appointment today and have been diagnosed with Mixed Connective Tissue Disease. He prescribed my 400g daily of Plaquenil. I am actively trying to get pregnant and am freaking out. Do you know anymore info regarding Plaquenil for something like my diagnosis? I know a lot of people that responded have RA or Lupus but I don't exactly fall into one of those categories and am so overwhelmed with all the info out there.

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    1. Greengudz- I have the same Mixed Connective Tissue Disease and have been on Plaquenil for 3-4 years. It was a miracle! I found out I had fibromyalgia four days after finding out I was pregnant with our 5th child. I went into remission with the pregnancy and a few months after the birth. Then the pain came and I started seeing a Rheumatologist. He suggested the Plaquenil and after a few weeks I felt I had a new lease on life! That baby just turned 5 last month, and the 300mg of Pl a day have been fine. Last week, and 2 months before my 40th birthday, we found out that we are expecting #6! I am praying for remission. I stopped meds a week ago and am starting to feel the stiffness upon waking. I have been doing research online myself as to weather it is safe to continue. I should be seeing the doctor soon and I will update here as to what the doctor says. Good luck to you!

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  16. Greengudz - Sorry, I don't have any specific info about the use of plaquenil for mixed connective tissue disease. But, a dose of 400 mg (note that's MILLIgrams, not grams, which is what I assume you meant) is also the standard for RA. So in terms of pregnancy, I think the RA advice would apply to you.
    These days, I'm taking heart in the fact that the Arthritis Foundation OKs plaquenil use during pregnancy. If I were trying, I'd stay on it. In my personal situation, I feel the benefits outweigh the risks.

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  17. So, I am now about 8 weeks pregnant and went off my Plaquenil (at my rheumatologist and OB's recommendations) and I am happy to say my RA is in remission. Not even a bit of stiffness and definitely no pain. The wonderful thing about pregnancy is that it suppresses your immune system and therefore your RA.

    I still have my standing 'scrip for 5mg prednisone to take should I flare, but so far, so good.

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  18. Hi, for those of you who took prednisone for pregnancy what was the lowest effective dosage? I have lupus and have been having very early miscarriages-the antibodies (ANA) are setting my immune system into attack mode agaist the baby each time. I've had some bad times with prednisone (joint damage on high doses) so would like the lowest dosage that would keep my immune system at bay. Thoughts? TIA!!

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    1. I've been taking 2,5 mg for the last five years, and it workes fine, but I'm on Plaquenil as well, so it's probably a different case than yours.

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    2. I have lupus and have had 4 miscarriages. I am now 18 weeks but took a baby asprin daily for the first 12 weeks. My previous ob and a genectic specialaist reccommended the baby asprin.

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    3. I have lupus and have had 4 miscarriages. I am now 18 weeks but took a baby asprin daily for the first 12 weeks. My previous ob and a genectic specialaist reccommended the baby asprin.

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  19. My pregnancy ended in miscarriage at 12 weeks. My doctor told me to absolutely take my Plaquenil the next time we get pregnant.

    I took 5mg of prednisone when I was pregnant, for a maximum 10-day run at a time. I was told not to take it in the third trimester because it can raise my blood sugars and cause gestational diabetes.

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  20. Hello...
    I found this conversation on your blog when I was researching Plaquenil and pregnancy. I have been pregnant four times and have lost all my children. My third pregnancy was my latest lost at 25 weeks and 3 days. I have several blood clotting disorders, some of which they didn't find out about until after my son died. I was on prednisone with him until I was 9 weeks pregnant and put on it specifically to carry the baby. However, apparently, my son died from severe clotting. He was clotting too.

    I have now been diagnosed with Antiphospholipid Antibody Syndrome and have to be on baby aspirin for the rest of my life. Due to my clotting, my specialist wants me to go on Plaquenil next time I get pregnant to keep the baby from clotting. I'm nervous about it because the idea of anything bad passing through the placenta freaks me out. I had no idea about this whole eye thing until I found it here. I guess in my case the side effects would outweigh the bad. You can read about him and me and my husband as we continue to go through this if you want to see how our next pregnancy turns out. We are planning to try for the net six months and then do IVF. www.alexanderqsmommy.com

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  21. Just a couple of comments real quick from someone with Lupus and clotting issues. Probably a bit late, but maybe people will check back.
    1. Greengudz, if you have MCTD what disease overlap do you have? Lupus, polymyositis, sclederma? MCTD is an autoimmune disease like Lupus and all the others, which I am sure you know. You need to be in remission or have full control of all symptoms for a minimum of 6 months before it is recommended you attempt pregnancy. It took me over a year to get a blessing to proceed with attempting. My rheumatologist, primary, and perinatologist (you must see a high risk OB!) all consulted with me and decided together. They all also agreed without a doubt that I must stay on the plaquenil. The risk of miscarriage, fetal distress during flares, kidney failure, etc. from no meds is worse than the rarity of fetal eye issues.
    2. My cousin has dermatomyositis. She has a beautiful baby girl. She was on Plquenil and prednisone throughout her pregnancy. Obviously it is ideal to not be on meds, but when you're chronically ill ideal really isn't in the equation. It's a tough balancing act.
    3. Anonymous with APS, I am also on baby aspirin daily for life. I have never had a clot or a miscarriage, but I do have the blood antibodies for clotting. My other cousin (my family is full of issues!) had to go on Lovenox injections during pregnancy due to her clotting issues. I would definitely talk to a high risk obgyn regarding proper clotting medications during pregnancy. Baby aspirin may not be enough given your history. Do note that the plaquenil should be safe. It has been fairly well studied. Also, please be cautious with IVF. I know I am not a candidate as the heightened hormones are considered dangerous to me due to a greater risk of clotting (much like I can't take birth control) and in turn stroke or heart attack. Please just make sure you look into this carefully so that you keep yourself and your future baby safe :)

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    1. I live in Norway, and we have obviously a quite different pracsis when it comes to MCTD and pregnancy. When I was planning a baby, I went to see both my MCTD specialist and a doctor at a pregnancy clinic, and none of them said they had enough reasons to advise me not to get pregnant. I've had MCTD for at least 8 years and have been on Prednisolon and Plaquenil for the last 7 years. I'm using the same dosage now, and I'm 6 weeks pregnant. The most serious worning I received was that my condition might make it diffucult for me to go pregnant the whole term, and that the baby might need to be delivered earlier because of this.

      But, it might be they decided that it's not such a big problem for me to get pregnant because the medications make me feel quite healthy. And of course, I don't know how it'll work out at the end :-).

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  22. Wow... I googled and this is what I found.... and so glad that I did (although much later then the original posting:)
    My husband and I are starting to 'try' for a baby. 3 weeks ago my RA flared quite spectacularly. I had been in remission for 6 years(was diagnosed with late onset Juvenile RA at 12 years old)... last night I was miserable. I was dreaming of this whole other life when the RA that has seemed to follow me throughout my life came along to mess up my plans. Thank you your post and all of you who posted comments. Makes me feel hopeful (after all we do have options...) and not so alone.

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  23. really interesting blog. I have been on plaquenil 400 mg/daily for over 10 years. My husband and I are planning on starting to have a baby early next year and I've had two different Rhuematologists tell me I should stay on Plaquenil during pregnancy because the baby will be healthier if i am healthier. the potential good outweighs the potential bad. i am a little nervous about it but am also nervous about the idea of flares again if i went off plaquenil. will be curious to see what happens. good luck to everyone.

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  24. My wife's two knees don to ankles and toes are swollen and in pain. Her OBGYNE prescribed paracetamol and dolo-neurobion. She's 4-month pregnant and we don't have a rheumatologist nearby.

    We're not sure if its really RA. But symptoms are stiffness, pain, and swelling. I hope it's RA. If it is I found the drug from this blog.

    How long would it take before Plaquenil could relieve pain?

    Thank you.

    Ernie

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  25. Ernie,
    Plaquenil can 6-8 weeks to start to have an effect on pain - if not longer. It sounds like your wife has been given some pain killers that should work sooner. If it is actually RA, prednisone (or another corticosteriod) may also be of benefit to reduce the swelling - and is considered safe during pregnancy. Best of luck!

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  26. Thank you every one for your posts on plaquenil my rheumatologist just put me on it and I am afraid to continue with it while attempting to get pregnant with donor frozen embryos. I just had fresh donor embryo cycle which resulted in pregnancy but I lost the baby at 4 weeks. I believe that was probably my last chance and starting all this treatment to prevent clots from causing a miscarriage is probably all to late. My first child was born after IVF in 2009 and he was intrauterine growth restricted. I mentioned it to the docs after my son was born and before attempting this last pregnancy but no one thought much of it and didnt start me on any TX to prevent clots. Now I fear maybe my pregancy would have been fine if started on at at least asprin before. I was checked for the antiphospholipid antibodies before undergoing this last IVF and because those were negative I thought I was good to go and didnt have to worry about this. No one mentioned a ton of other clotting problems that I could have, if I would have known I would have put myself on asprin but no one took it seriously until I lost the baby. I have been trying to become pregnant since 2005. Rhuematoid arthritis has taken too much from me and just seems to keep screwing up my life in one way or another and it has been doing so since 1995. I could handle it taking everything from me but not children too. I am now 41 years old and I dont think there are any more chances for me. The only thing I have ever wanted is a family. I know I am lucky to at least have my son but it just feels like I have endured too much and it is too painful. I pray to god my frozen embryos will make it but I know it is unlikely. I ended up loosing my first profession,my first husband,and as a result had to postpone having children because of this disease. To top things off and make matters worse I possibly lost a child I have been trying to have for 6 years because of it.This is the first time I have talked about this on line

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  27. I just wanted to say thank everyone for their comments. I was diagnosed with lupus for the past 3 years. This is my first time getting pregnant and i am exactly 9 weeks. Last night i went to get my medicine and the pharmacist told me i could no longer take it after i thought i deeply looked into it,even my rheumatologist told me it was ok to use. She then called me back and said it was only ok to use if i had lupus. In the end she still didnt want me picking up the prescription until she talked with my rheumatologist. I am also taking a low dose of prednisone which seems if i wasnt it would kill me. There is NO way i think i could survive without it. Glad that drug is safe to use. Best of luck to you all... Seems we should all stop stressing about it and put it in Gods hands because thats a major factor also(stressing). Thanks everyone and God bless!

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  28. I read through everyone's comments and want to share my situation. I have dermatomyositis. I was diagnosed with it 1st trimester of my first pregnancy. I did not take any medications for it the entire duration of my pregnancy, but a few weeks after a completely healthy delivery I couldn't hold my 7lb baby girl so I weaned off breastfeeding and was put on 30mg of prednisone which really helped.

    After my 1st daughter turned 8 months old we found out I was pregnant again. I had flare ups during pregnancy and had a really hard time walking up the stairs in my house. My skin was raw on my face, chest arms and neck. It looked like road rash!!! I was able to wean myself down to 15mg at the time of my 2nd daughter's birth. Again, completely healthy but small 5 lb baby girl. We decided it was best not to breastfed and I started plaquenil 200mg 2x a day, which i have maintained for 14 months now and been able to drop my prednisone down to 5mg daily.

    Both of my girls were and are completely healthy. We are starting to plan for baby #3 and my Rheumy suggests to stay on Plaquenil but drop it down 200mg only once a day.

    I did not need to see a perinatologist with either pregnancy. But we did have monthly ultra sounds in the 3rd trimesters.

    I want to add that after my first pregnancy i started seeing a ND who worked with me through my 2nd delivery and I'm still seeing. We did a heavy metal test and found super high toxic levels of lead, aluminum and cadmium so after Baby #2 was born I started once a month Chelation treatments which reduced my disease symptoms and flares at least 80%!!! I was surprised to do some research and find that at least 70-80% of people with auto immune diseases have high levels of toxic metals in their blood. I even read some of the not to toxic metals on my report and their symptoms. they were directly the same symptoms as dermatomyositis!!!!

    Just wanted to throw that out there whats been helping me along this path. Blessings to you and your pregnancies!!!

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  29. Hi there I developt RA during my 1st pregnancy and it was very painfull it took my GP 6 weeks post partum to diagnose me. I really fast saw a specialist and startet on Plaquenil and Methrotraxtat. My RA went after 8 months into remission but I have had bad side effect with the oral Methrotraxat. So they ant to try me on the i.V one. But we wanted to try for another baby before. So I stopped the Methrotraxat3 months before,stayed on 200mg of Hydroxychloroquin and got pregnant really fast. My problem is now that I'm 17 weeks pregnagt and having a severe flare up in my left wrist and right shoulder.. can't weigh out the risk of taking preds or pushing myself through the flare up.. my GP is not very helpfull.. I'm myself a Vet and believe me I know more about treatment and patient care then him! Has anyone experience if Physiotherapy helps? And other tips like diet etc what did the trick for them during pregnancy.. the problem is I also have to take care of my 20 month old daughter!!!
    Thanks

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  30. Hi all togehter,
    I developed my RA during my 1st pregnancy and got diagnosed 6 weeks post partum. I have had a home birth and the little girl is absolutly fine. I stopped breastfeeding and started on Plaquenil400mg and Methrotraxate oral once weekly which made me really poorly but my RA went after 9 months into remession.My specialist wanted to start me on i.v Methrotraxate but that meant no more children for min 3 years.. so we decided to have a go and stopped the Methrotraxate for 3 months. Lucky me I was straight away pregnant. I'm still on 200mg Plaquenil a day and just suffering a flar up 17 weeks pregnant. Now I don't know what to do start preds or push through my flare ups what I did in my last pregnancy. My GP is useless.. I'm myself a vet and know more about patient care and treatment then him but my specialist is really good and he let's my decide... anyone out there who experienced flare ups during pregnancy on Plaquenil? Did Physiotherapy help? I can't drive a car at the moment so bad is it. As it's my left wrist and my right shoulder and I'm not sure if I can cope with that pain for the next 5 months and taking care of my 20 month old daughter. Any other tips like diet etc to stop this flare ups during pregnancy?????
    To the eye test yes it's necessary I go every year.... and I weight the risk for the baby out ... all the studies on mice were Plaquenil i.v. given nit oraly so it's not the same. and the risk to miscarry if you also develop a tempreatur with a flare up is much higher!
    Please forward me any tips!!!!
    And got luck to the once who are trying to concevie don't forget to take the Foli acid before you start trying!!!!!

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    1. Sany -
      I decided not to get pregnant (for reasons other than the meds), but from everything I've read and learned from other RA-ers, it sounds like a round of prednisone may be in order for you. It's considered safe during pregnancy and can really help bring a flare down (that I do know from experience!). You might also want to check out some of the other posts on this blog. Other moms have left ideas for how to cope with a flare & a baby at the same time (pacing yourself, resting whenever possible, using a sling/backpack to carry baby, etc.) Good luck!

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  31. I just stumbled across this thread and am so comforted to read about other young women struggling with the balance between RA and having children. I was diagned with RA 2 1/2 years ago about 6 months after giving birth to my son. We have been trying to conceive a second child for years now- had one miscarraige after our first IVF and then 3 subsequent failed IVFs. I just found out today that our fourth IVF was successful and I'm pregnant but it's too early for me to really feel too excited. I am on plaquenil alternating 200mg one day and 400mg the next and 5 mg prednisone. Of course I would like to use the least medicine possible if I do have a baby in there but don't know when to taper down. Any thoughts on when or how to stop the RA meds when pregnant? I'm fairly well-controlled at the moment on these meds.

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  32. Hi am 23 wks pregnant and have been taking prednisone for about 2 1/2 mos now. I went from 10 to 20 mg a day, but no significant change. I seen my Rhuemy today and she suggested I start taking 400mg a day Plaquenil and slowly ween myself down to 5 mg of Prednisone. I am very skeptical about this, even though she states its safe for pregnancy. I would also like to breastfeed, so she says that might be an issue. I just want to know if anyone has taking this mix of drugs and delivered a healthy baby. Halfway through it but worried.

    Thank You

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  33. I am glad I found this post maybe someone here can answer a question for me! I am 25 years old and I was diagnosed with RA four years ago. I have been through four different Rheumatologists for a few different reasons. I was immediately started on methotrexate by the first doctor and the most recent doctor added plaquenil to the mix about a year ago. My problem is my body does not respond well to birthcontrol but with the methotrexate it seems I have to be on birthcontrol and I can't find a single doctor who is willing to treat me without it. An unplanned pregnancy isn't a huge problem for me as long as it will be a healthy one. Is anyone else out there treated for RA without methotrexate? I had and IUD in and after 8 months of suffering from it had it taken out and now I'm struggling with what to do and am scared to take my methotrexate. Any advice would be wonderful! Melissa (green7n@yahoo.com)

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    1. Melissa,

      I was treated for RA without metho for about 2 years due to hair loss problems. I took Arava instead. But that ended up causing serious problems with my white blood cells. (Arava also causes birth defects - so you'd have to be on BC.) I did just Plaquenil (400 mg/day) and Enbrel for about a year, but ended up going back to the methotrexate (low dose) to get nagging symptoms under control.
      You could try going without metho and see how it works for you. Or, what about looking into other forms of birth control? I've had both types of IUDs (copper & Mirena) and I can say, for me, the Mirena was MUCH better. (The copper one caused a lot of bleeding/cramps.) Or how about the minipill? It only contains progestin - no estrogen - so side effects are usually lower. NuvaRing might be another option, since hormones are delivered to your cervix, lower the risk of systemic side effects. Good luck!

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  34. Hi Everyone!

    I am 28 years old and i was diagnosed with RA by the age of 26, I was on plaquenil since i was diagnosed, I was on Plaquenil an entire pregnancy, my baby is 4 month healthy chunky sweetie!

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    1. Thanks for the info! Did u take 200 or 400? Did they have to check the baby for anything?

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    2. Thank you Sammy! Thats very nice to hear. Doc says it is fine to stay on Plaquenil and I do trust them but you read things on net and it puts you off. I think if I got pregnant, I would stay on the drugs (Plaquenil and prednisolone) to prevent flaring. Im 30 now, so need to make a start soon!

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  35. I have lupus and had 4 miscarriages. No blood clotting disorders either. Took a baby asprin for the first 12 weeks of this pregnancy and now am 18 weeks. My old ob and a genectic specialist recommended it.

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  36. Thank you for the concise answer - you helped me!

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  37. I have lupus, had a great pregnancy ( was having daily injections for blood clotting but stopped all other medication they couldn't guarantee there would be no side effects. About 33 weeks I started getting really sik and got admitted to hospital I had my wee boy at 35 weeks ans I was admitted to intensive care. Baby was fine but I was very sick . They even had medical students looking at me as they had never seen a lupus flare quite like it. They expected 9 months recovery however I went off all the extra medication within a couple f months. I was vey fit and healthy before I got pregnant and had been slack with plaquneil for a few months......I recommend being in a good space with how your body is feeling before getting pregnant! Medication wise I'm still not sure what I would do next time, if it could prevent a flare up like I had then I would consider staying on it!

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  38. I have Lupus and I took 200 mg Plaquenil daily through my whole pregnancy on the advice of both my OB and Rheumatologist. I had a healthy baby at 39 weeks. I continued to take the Plaquenil (and later increased it to 400mg/day) while breastfeeding for 17 months. My son is perfectly healthy.

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  39. I'm 35 and have been trying to get pregnant for several years now. I've have RA and have refused most aggressive treatments with DMARDs because of their risks with pregnancy. (Being a nurse doesn't always help... too many horror stories!) My RA has been a bit better since I changed jobs, however, I have had flare ups in the past year or two that have caused me to be even bed-ridden at times! I hear good things about remission in pregnancy, however I just cannot seen to get pregnant! I've tried several different fertility treatments (including 7 inseminations) with no luck. (possibly a miscarriage in January) My reproductive endocrinologist has been pushing me towards IVF, however my insurance will only cover one chance at this, so I was hoping to get my RA under control before trying. I recently went to a new Rheumatologist, and he wants to start me on Plaquenil to carry me through pregnancy, possibly weaning me down off the Prednisone 10mg I'm currently taking. Also suggesting Inurhab until I get pregnant, then taking me off that. I'm taking a baby aspirin due to elevated homocystine levels, so I guess it's no harm to continue with that. I'm nervous in general about the plaquenil with the side effects for myself, let alone a baby. Anyone have issues with things like hair loss?!? How terrible that would be. Bad enough I've gained a ton of weight on these silly steroids! Anyhow... I'm just eager to get pregnant and unsure if it's my RA preventing it, the Prednisone, or something entirely unrelated. Anyone with advice?

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  40. Im a young female who has severe RA I take 200mg 2x daily of plaquinel my RA told me that there is 90% chance of birth defects so avoid getting pregnant. I'm 27 and I want a baby. Wat should I do?!

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    1. I'd get a second opinion. Plaquenil alone is generally considered safe by most RA doctors. But if you are taking drugs such as methotrexate and/or Arava, then the chances of birth defects are much higher.

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I welcome your comments and experiences! If you have any questions, I will try to get back to you as soon as I can.