Sorry I've been M.I.A. the past week, I work in the sports industry and the upcoming World Series is keeping me very busy! As for my update, went to a different rheumatologist last Friday, really liked her! She convinced me to take the Plaquenil....basically she said, I already had a traumatic pregnancy with fetal development issues BEFORE the lupus diagnosis and without taking Plaquenil, so, it's kind of a "what do I have to lose" kind of argument...she is afraid of whether lupus would behave in pregnancy or not. Also, she said there are more recent studies out now (done only a year or so ago), that say that Plaquenil is starting to be used more as a preventative medicine for some people before they develop FULL blown lupus (i.e. I do not have chronic pain every day, so why wait until I do to do something about it?!?). Also she said that a lot of patients have full blown lupus 3-5 years after being diagnosed as ANA positive. Right now I am in "year 4" since I was diagnosed with Raynauds and ANA positive in 2008 (has always been positive since then).....so basically she nudged me along and convinced me to take the Plaquenil. She also mentioned that 15 years ago when she had her daughter, pre-pregnancy she was not ANA positive, post pregnancy she WAS. So, a woman's body does funny things during pregnancy and in the post partum period, so I think she was trying to tell me that I could potentially develop the other antibodies if I don't just suck it up and take the plaquenil (I have 3 out of the 5 main antibodies for Lupus- ANA, ds-DNA, and ACLA). I liked that she gave me blunt advice, but in a maternal way.....just what I need to hear before we decide if we're going to try to conceive again. She'd like to wean me off of it in 2 years or so and see how I'm doing by then (but maybe I will stay on it until ALL my pregnancies are behind me, god willing).
Thank you all so much for your opinions last week on whether I should take it! I've had 4 doses so far (starting with 200mg, 1 pill a day at night, will up it to 2 pills at night next week). The only thing I've noticed so far is my skin seems really dry, mostly on my hands....but it could be a combination of taking the plaquenil and the fact it has become quite chilly in New York this week!
Nice to see you back on and also seeing a nice rheumo who you can actually trust like myself now and i like people straight how she was because she's given you great advice and as long as she's not nasty in her temprement then you'll do ok.
I really hope the pregnancy your hoping for works mate and the best of luck with the plaquenil and taking it at night will help, another member as done what i've advised and felt nothing so fare and even when you up it which will be 400mg?....you can still take that amount at night also.
Please keep we updated on how your going with it please.
I just started taking Plaquenil two days ago (200mg twice a day). Has it made you feel differently? I've been feeling sort of dizzy/weak, but maybe it's all in my head :).
I started on plaquenil last year taking it in the day and i was very ill with alot of affects pulled off it, then went back on but was advised to take it at night before bed as your slepping the affects off which i did and the amount was 200mg i had a few days of nausea and nothing after and now i'm taking 400mg at night i had 3 days of nausea and nothing since.
It can make you dizzy but weakness can come from the lupus besides so that's a 50/50 question.
Hi Dawn, yes, I intend to take it while pregnant. My high risk OB doesn't think I should take it if I'm not feeling any chronic pain (which I'm not feeling anything constantly) since it can technically cross the placenta (although the doc I see is at NYU and is a lupus & pregnancy specialist, I do not think she'd want me to take it if she was worried!).....if I don't take it I'm kind of nervous what else will develop with other antibodies in my system in the next few years. The way my new rheumatologist put it is....she wishes they would have done the preventative research on Plaquenil back when she was first diagnosed as being ANA positive. Even though having ANA won't 100% mean you'll get lupus, it definitely is the first red flag. Had I done my due diligence on all of this research back in 2008 when first told I was ANA positive and had raynauds (which is what sent me to the doc in the first place, the numbness in the hands!)....then perhaps today I wouldn't have already developed double stranded dna and anticardiolipin antibodies. And if you've read up like I have, once your body starts producing ds-dna, it ALWAYS will, it's just a matter of how much.....I just want to avoid the anti-ro, anti-la and anti-sm antibodies if I can. So, yes, I will take plaquenil while pregnant, but I think it is my "insurance policy" so to speak to make sure pregnancy doesn't kick start any other fun & exciting antibodies in my system lol. I asked my doc if the plaquenil will prevent antibodies from crossing the placenta, and she said nothing is ever that clear cut in biological sciences....so, as analytical as I am, I have to accept that there is a certain amount of gray area, so I am navigating the waters as best I can. All I can hope for is taking the plaquenil for maybe 2 years, wean off of it and retest my antibodies at that point. Would you opt to not take the plaquenil?
I guess we are never made any guaranteed anything. I would think it would be less of a chance for birth defects by not taking it. But I can understand what you are saying too. Guess I'm a wimp.
Sounds like things are looking up for you with the Plaquenil. My rheumatologist put me on it immediately when I was (officially) diagnosed in 2010 - 2 pills/day. The 2nd doc that I went to also said that she would not take me off of it - she feels that Plaquenil is a vital drug and taking it for the rest of my life would not hurt. I also find that I don't get sick (colds, etc.) as much - from what I understand Plaquenil is/was used to fight Maleria! I'd really like to get off Prednisone! I take 5 mg. day then 4/day for 2 days, then 5, etc. I have gained 15 pounds this year because of it and that really sucks since it took me 2 years to lose 95 pounds! I am going to go to a different doc the first of the year who combines Western & Chinese medicine and may have an alternative! Stay strong my friend!
I already had a cataract and macular degeneration when I was put on the Plaquenil. The rheumy took me off of it and put me temporarily on the Prednisone. It made me feel so good, but just for two weeks. I hear that the prednisone will make your bones honeycomb too. Ugggghhhhhh
Your surposed to take a tablet while on prednisone to stop osteoporosis being cause with it as prednisone cause brickle bones where fractures and breaks can happen quickly. :)
dawnloree said:
I already had a cataract and macular degeneration when I was put on the Plaquenil. The rheumy took me off of it and put me temporarily on the Prednisone. It made me feel so good, but just for two weeks. I hear that the prednisone will make your bones honeycomb too. Ugggghhhhhh
Hey Dawnloree! How long did you take the plaquenil for before having a cataract and macular degeneration? I'm 32 years old so I really hope cataracts are not in my near future! Although my brother in law just had cataract surgery (unrelated to plaquenil of course) and he's only 37, so I guess it could happen!
Me too. I have been on it for a while but then doc took me off and was off for several months before he put me back on it again. I feel very tired and get dizzy easy.
lupusfiasco said:
I just started taking Plaquenil two days ago (200mg twice a day). Has it made you feel differently? I've been feeling sort of dizzy/weak, but maybe it's all in my head :).
Who have just started taking the plaquenil how are you all going and it would be nice to hear off the members who have contributed about taking it on this thread.
good morning everyone! I have been on Plaquenil for 2 years now and no problems/issues. I have my eyes checked every year (evidently it has been known to cause problems). My doc had told me that she probably would never take me off of it. So far, so good.
I just started Plaquenil (200mg) about a week ago. No major side effects yet. I have noticed my hair falling out more lately, but it does that in spurts anyway. My rheumy said it may take three months for me to see improvement.
It was nearly 3mths when i knew the plaquenil was helping me on 200mg but it can take upto 6mths for alot of people it's a great drug and i am pleased there's hardly any side affects.
Regarding your hair Lupus can cause it to fall out besides meds...so with your hair for a good many of us we'll never know which is the main culprit.
Love Terri xxx
TJ said:
I just started Plaquenil (200mg) about a week ago. No major side effects yet. I have noticed my hair falling out more lately, but it does that in spurts anyway. My rheumy said it may take three months for me to see improvement.