I am contemplating taking plaquenil before we try to conceive again (I was just diagnosed and my 2nd pregnancy loss was just 3 months ago)....I'm only considering taking it since it seems my inflammation acts up when I take higher dosages of methylfolate (aka Folic Acid or B9, I need to take higher dosages b/c of a gene mutation I have MTHFR)....so, I am interested in taking Plaquenil if it will "quiet" down the reaction I have to the folate dosages (since I *need* the folate to support healthy pregnancy development, particularly since the last baby we lost had a brain and heart malformation). But I am curious if anyone has taken plaquenil and come off of it at any point? I only want to stay on it during pregnancy and then see if I can wean myself off and be okay without it.....wondering if it would make my lupus flares worse in the long run??? Like would my body become TOO dependent on it? Also, by taking plaquenil does it prevent Lupus from progressing? (i.e. from attacking the organs). If so perhaps I'm better off staying on it. My case is fairly mild as of now, since the only pain I have is in my elbows and back (a little bit)....I can live with the pain, but not at the cost of another pregnancy loss! If anyone has info or advice please let me know. Thanks!!
I'm taking plaquenil as you know now but i was on it early last year at 200mg daily but took it at 2pm in the day and it gave me side affects badly, so i went and pulled myself off it and i had the shakes, so i went back on and chipped at the tablet daily and after 7 days no affect but then i was asked to go back on it as it's good for DLE/SLE and someone i know advised me to take it at night which i do at 11pm as i will sleep the affects off i had several days of nausea and it stopped and i've just been upped to 400mg daily and i'm ok.
Alot of members who have commented on the drug have'nt had side affects, i think it's all down to the individual's body and if you do start if i'd ask your specialist to start you at a low dose of 200mg to see how you go.
Plaquenil is not a steriod, it's excellent for the skin besides easing joint pains and if you do become pregnant if you take it... all specialist should know how to work meds with a patient.
You should also be refered to an opthamologist before taking it to make sure your eyes are ok because plaquenil is known to interfer with the eyes and if you ok to take it once seen by the opthamologist...you should still be checked every 6mths.
Your body does'nt come dependant on the drug on a daily use it eases symptoms your getting but if you do turn to taking it i do suggest at night and if you ever come off it...slowly come off the medication, don't pull off it like i did.
I'll add a link about the the drug for you to look at.
I hope the advice Ann and myself have given you will help you to decide wheather to take the drug and i wish you the very best of Luck with your 3rd pregnancy.
Thank you so much Terri!! Actually it's super helpful what both of you wrote, especially the studies done on people with Lupus living longer if taking plaquenil! I am in the early stages of researching everything, so I think it really helps to hear from those who have taken it. I think I will go on it so it quiets my immune system, and then come off of it after pregnancy (slowly! so I don't have a reaction). I found this article and I'm happy to hear that Plaquenil also has an anti-coagulant type of effect, so perhaps I don't need to be on blood thinners as well :)
I still have more reading to do, but I'm trying to focus on work too (it seems like I have two jobs lately, 9-5 in Accounting and as a medical researcher on my own time LOL)
That's a good link you've got there and you can find some good info on google it's down to what you type in and Ann really knows about plaquenil as she's had it from quite a few years besides as she's stated.
What i like about it Helen it cleared my skin up within 3mths the first time round as the drug can take upto 6mths before you feel any affect plus it not being a steriod is even better but please do as i suggested if you go ahead and have it take it at night with a slight snack and as your doctor to start you on a low dose....mines been upped to 400 like i said and already since friday seeing the rheumo it's starting to ease my spasms in my legs slightly.
Yes always come off it slowly, just chip abit of the tablet daily when you do come off it....i know it feels like you have to jobs researching also but that researching is knowledge into the disease and it helps in many issues.
My main concern when trying for another child is see if it's ok just to take the baby asprin like myself...i had DVT bad ages agao and it's left me with hughes syndrome where i take one asprin daily...to many thinners can do more harm than good especially trying to get pregnant again.
You take it easy and it was lovely hearing off you.
You do a great job with your studying though and your always full of knowledge with what you study. :)
Ann A. said:
Helen,
The two jobs thing is one of the reasons that after I retired from my first career, I decided to become a health educator. Now, I can sit her and study health and nutrition all day long and not feel even a tad guilty. Which I had done this about 40 years ago. I'd be healthier and happier and probably wealthier.
Hey, Ziggymama! Well, my case isn't diagnosed yet--after 2 yrs. now. I only took the plaquenil for about 1-2 weeks. I had horrible mouth sores with it. But I didn't have any issues new when I went off. So, it was very short lived. I did go off my antidepressants before conception of my baby. I was anal about being as clean as I could while pregnant--no pills, no chemicals, etc. Plaquenil was the alternative to methotrexate from my rheumatologist. Since I can't take methotrexate due to lung issue. So, that's how we came to sulfasalazine for now. It will work to help with the lupus--from progressing in most cases. A baby is so exciting! Love ya, Karla
Hi Terri, Karla and Ann!! :) Sorry it's been quite the busy weekend! (I guess you can see why a person like me was susceptible to Lupus in the first place- S-T-R-E-S-S lol).
Just wanted to give a quick update, a fellow Lupus sufferer recommended a local (in NYC) acupuncturist to try working on my joint pains without taking meds- went on Friday night and it was WONDERFUL!! My elbows & hands feel SO much better! And I honestly felt more relaxed than ever before while I was laying there for the half hour long treatment (with the acupuncture needles in my legs, arms and stomach). I don't know if any of you have tried it before, but I really recommend it! Even just to enjoy the calm relaxed feeling it brings over you, I feel much more focused :) I am going to go once a week for a month and then maybe twice a month. I fully intend to continue throughout our next pregnancy (whenever that might be!). Karla, I too would like to be off of drugs as much as possible in my next pregnancy, but, I will have to see what we decide as far as blood thinners and such. I am so scared to lose a third pregnancy, and the last thing I want is to encounter a problem and then beat myself up later on for the "shoulda coulda woulda" mentality of what I chose NOT to try, ya know? I know we've probably all been there at some point, when you take a risk and don't know the outcome, it's just scary as heck when it not only deals with YOUR health, but also potentially the health of your child!
Terri I'll keep you posted if I find more interesting research on this!!! I'm actually at work today (ugh, yes, on a Sunday!)...I'm in accounting and need to "close the books" for the month....I left early on Friday so I'm paying the price now :) Chat later!!
Since you have had miscarriages has your OBGYN suggested heprin shots. I had four second and third trimester miscarriages and they finally figured out that I was passing blood clots thru the umbilical cord cutting off the oxygen supply to the babies. Now that may not be what is happening with you but I know with every flare up my clotting factor drops and blood clots become a real issue. As for the plaquenil I was on it for about 20 years until it caused me to lose the retina's in my right and left eyes. If you do decide to stay on it long term make sure you are seeing an ophthalmologists not an optometrists because often they dont check for thinning of the retina etc. Whatever you choose I hope it works for you. XXOO
Thanks Trisha! :) I feel like this is the only place I've received REAL replies, from those that have "been there" and I'm able to get feedback without getting medical statistics thrown at me :) (not that I mind medical mumbo jumbo, but sometimes you just want to hear how others have handled the same situations!).
Julie- my OB wants to do Lovenox shots. My 1st miscarriage I'm almost positive had something to do with my medical issues....this most recent loss though (at 22 weeks), I'm not so sure. For a little bit of TMI (sorry), I was told there were no blood clots in the placenta (I delivered our daughter so it was in tact). So I"m not sure what the story is, but, my ACLA (anticardiolipin antibodies) #'s were very high just 1 month ago (coming off a flare), they are now normal, thank god....but last month, one of them was at 71!! I think the norm is under 15 or something. Crazy stuff. I know I don't have a crystal ball and I can't say for sure whether I will absolutely need the blood thinners, I just don't know if I could sleep at night if I don't go on them and then I will be worrying every day "will I miscarry today??" it's a terrible feeling when you just can't feel secure that you're body is functioning "normally" in pregnancy! Thanks for listening!!
Oh and meant to add, if I do decide to go on Plaquenil at some point, I already made an appointment with a local Opthalmologist for October 15th. So, at least I will have some baseline examination done if I make the choice to go on it on a whim! I'm also going to the cardiologist tomorrow since I haven't ever had a heart exam and I've been having some of the typical lupus "deep breathing" pains, not all the time, it comes & goes....but better safe than sorry, right? At 32 years old I would have never imagined having such a network of specialists in my "rolodex" LOL
I hear that... a family doc a rheumatologist a opthamologist an accupunturist an obgyn, a gastrointernist, an ear eyes and nose guy a dermo a lung specialist an eye surgeon and a massuse . It gets a bit over whelming.
LOL Julie, my list is about the same! Although I haven't revisited my gastro doc since the diagnosis, I guess that will be on my short list after dealing with all the OB/Gyn stuff :)
Ann, that's a great site!! Looks like a wonderful supportive place for pregnant women! :) I haven't really found a community center like that yet, but I'm sure I can find one since I work in NYC. Here's the website of the acupuncturist I went to on Friday, she was so sweet! Maybe I can her for a recommendation for yoga etc.
Thank you for finding the time to update we and try not to STRESS lupus thrieves off it and will causes your symptoms to feel double what they are.
I am so pleased the accupunture as relieved you and if you feel good from it then carry it on plus your not risking trying to get pregnant again...i've never tried but i have read that it's surposed to be good for symptoms with Lupus.
So they've got you doing the months accounts...BORING but someone as to do them.
I am pleased your booked in for an opthamologist and at least you'll know one way or another if your ok, if you ever want to use the drug plus i hope the cardiologist appointment went well today, at least your covering all aspects connected to the disease.
All my love to you :)
ziggymama said:
Oh and meant to add, if I do decide to go on Plaquenil at some point, I already made an appointment with a local Opthalmologist for October 15th. So, at least I will have some baseline examination done if I make the choice to go on it on a whim! I'm also going to the cardiologist tomorrow since I haven't ever had a heart exam and I've been having some of the typical lupus "deep breathing" pains, not all the time, it comes & goes....but better safe than sorry, right? At 32 years old I would have never imagined having such a network of specialists in my "rolodex" LOL
