Plaquenil questions

[Sara2804]

I?ve got two questions. First, is anyone on 200mg of Plaquenil for maintenance? I have been on 400mg for a year and a half to treat my UCTD, but my rheumatologist wants to lower me to 200mg for two reasons. One, to see if Plaquenil may be contributing to my continuing hair loss, and two, because I am considering going off of it to become pregnant, and this would be a way to taper it down. My disease is mild and stable. I have a positive ANA and SSA and mild anemia, but no other positive bloodwork. My symptoms are very mild as well. I am wondering if anyone else has made the switch to a lower dosage and with what effect. I am a little nervous about it. My second question is about Plaquenil and pregnancy. I brought this up to my rheumatologist, and she is basically letting me decide whether or not to stay on it. She says she usually advises her lupus patients to stay on it, but since I don?t have lupus and whatever I have is very mild, she says she would support me if I decided to go off of it all together. I have no idea what to do. I know no one can tell me what the right decision is, I?m just looking for people?s experience. I think I would be more inclined to stop it altogether if my mom didn?t have lupus (she was diagnosed 2 years ago). So I have a family history of lupus and I always have a fear that if I go off Plaquenil my UCTD might turn into lupus. On the other hand I don?t want to be overly cautious and stay on a medicine that I may not need to be on. I?d love to hear people?s thoughts on this. Thanks a lot and I hope you all are well. Sara

[moatsville]

Hi, Sara!

I was on 400mg of plaquenil for quite some time, then went to 200. In fact, the 200 was for quite a while, too. I didn't experience any problems with the lower dosage. A side benefit - the lower dosage of plaq decreases the possibility that your eyesight will be effected.

I've always been the type who'd rather not take any meds (Lupus took care of that one!) and any time I have a chance to cut back, I try it. I figure the dosage can always go back up if it's not doing the job. Also, trying a lower dosage may let you know if going off the med will be a BIG problem later on.

Good luck!

Kathy

[LWL2002]

style_emoticons/<#EMO_DIR#>/foryou.gif ...Hi Sara....I started off on 400mgs of plaquenil ,but am now at 200mgs. I actually dont remember either why I was put at 200mgs. I see the rhuemy next week and that will be my first question.........Take care! Laura (LWL2002)

[Rose Too]

Hi Sara,

I was told quite bluntly that whilst I was taking Plaquenil I was NOT to get pregnant as it could cause problems with the unborn child. Now I never questioned what he said, I had no reason to, but, I am in the UK and I see you are in the US? So maybe my rheumy is behind yours with data or vice versa? Please check thoroughly, perhaps with the maufacturer? I know he scared me and made me take extra precautions.....

[raggedyann1]

Hi Sara,

I know that all of my rheumatologists told me it was fine to take plaquenil while pregnant but I was never able to get pregnant. Just telling you what was told me. I would find a high risk obgyn to work with and find out what their angle is.

I am still on 400mg of plaquenil but my rheumatologist has said he will eventually lower me to 200mg when I have been stable for a period of time. You will probably get mixed reactions on both of your questions as we share our personal experiences about them.

Take care,
Karen

[Sara2804]

Thanks for your thoughts everyone. Rose, I have heard different things about Plaquenil and preganancy too. My OBGYN doesn't think it's a good idea to be on it, but my rheumy says it's fine...so I don't know. I am going to start taking 200mg for a few months and see how that goes. It will give me some more time to research and talk to another doctor ot two as well.

Thanks everyone-
Sara

[Sarah53]

Hi Sara

I have experience with both of your questions. 18 years ago I was on Plaquenil and became pregnant. I had decided not to have anymore children because I had Lupus and had one healthy daughter. I was 35 years old. I went off the Prednisone and my pregnancy was normal.

I had been on 400mg Plaquenil for 10 years and went down to 200mg w/o any problems.

Sarah

[pnutts]

Hi Sara,

I have had two successful Pregnancy's while on 400mg of Plaquenil a day. Both my High risk OB and my Rheumy agreed it was better to stay on it then have a lupus flair which would be worse for the baby(s). My babies are both perfectly healthy and went full term.

If my doctor said I could stop it at no risk then I would of. Follow what your OB and Rhuemy say then should know what's best.

Good luck.

Cath

[Helena669]

Hi Sara,

Im on plaquenil, just one pill a day, and Im also having fertility treatment with clomid, or at least Im due to start next cycle. My rheumatologist says that altough the textbooks say it should not be used in pregnancy as there may be a low risk, in practice there have never been any problems with her patients.

I have lupus anticoagulant, lupus-like syndrome, crohns and raynauds. I do have a lot of lupus symptoms, so I have decided to stay on the plaquneil.

I hope this helps, and good luck.

Helena

[angie1]

Hi Sara,

I just thought I'd add a little help also. I started out with 400mg 8 years ago and I'm down to 200mg. I had an episode with my lungs so I began at 400, then when I felt better my doc put me to 200. I may have to go up to 400 again because I think I'm in a flare. My doctor said I will be on it for life, as she had another lupus patient who went off of it and had kidney failure a few weeks later. I would rather take this medication for the rest of my life than have something awful like that happen. She also told me that it would be in my best interest not to have any more children. I developed lupus 2 years after the birth of my son. Good luck and I hope everything works out for you.

Angie

[MiMi04]

Hi Sara,

I'm currently 38 weeks pregnant (almost 39 weeks) and I have been on 400mg Plaquenil per day. So far all the check out comes back great. My original doc won't let me go off the Plaquenil even I only have mild Lupus (skin only). But due to she moves and I have just change to this new doc, he won't mind if I'm off the Plaquenil.

I'm due in less then 2 weeks now. I'll keep you posted on how my baby does when he is born.

[ruta74]

Hi Sara!

As this very issue was very much up for me too just very lately I decided to add my thoughts and experience here too.
Namely my dosage was the opposite, I was on 200mg Plaquenil and then increased to 400mg. I actually noticed no difference. But as soon as I found out I was pregnant I quit all medicaion.
I remember one thing my doc said about Plaquenil then - If the benefits of the medication weigh up the risks of it, its okay to take it. And as you have probably found out here - there have been many successful pregnancies and healthy babies with and without plaquenil.
My own experience says that pregnancy was so good for my body that I didnt need anything at all, I was great during my pregnancy. I totally forgot my illness.
So I guess you shoud just sum up the benefits and the risks and see which "number" is bigger.

I wish everything goes fine for you however you decide!


Ruta

[Sara2804]

Thank you all so much for your experiences...I really appreciate it!

And MiMi...good luck with the next two weeks!! Please keep me posted when your beautiful baby arrives!

Sara

[Hatty]

Dear Sara (et al!)

This question comes up so often, I think it's really bizarre that our doctors all say such conflicting things! For what it is worth, I have been on 200mg for 4 years now, and have had two succesful problem-free pregnancies (bar the occasional flare) and two lovely healthy children, now 18 months and 2 weeks (yes, very tired INDEED but happy!). My doctor (D'Cruz at St Thomas', London) said that the risk of coming off the plaquenil was greater than the risk to the babies, and that breasfeeding is also fine on that dosage. I have found plaquenil to be a wonderful drug with no bad effects on this dosage, and I do feel that it would be much harder to cope with the exhaustion of little children with the symptoms for which I started taking it.

Best of luck whatever you decide, but do think about your health and wellbeing first, as being a mummy is exhausting enough without battling with more symptoms than you need to!

love Hatty

[MiMi04]

Hi Sara,

I'm back with my newly born baby boy. He is doing great. He weights 7lb and 6oz, healthy, very active and cute baby boy. style_emoticons/<#EMO_DIR#>/biggrin.gif

Best luck to you, Sara. I believe as long as you work with your doctor while pregnancy and taking good care of yourself, the pregnancy with plaquenil will not effect your baby.



By the way, baby was born couple days after due date. He was born on the full term baby. The OB was going to induce me in a week after the due date; however, the labor started before the inducement and after the due date. Everything works great and my husband is very happy that baby and I are all doing great. style_emoticons/<#EMO_DIR#>/smile.gif

[nick30]

HI hun I am currently trying to concieve and am on 400mg of plaquenil per day as well as other medication. I have seen pediatric doc who specialises on lupus patients and he advised me on the meds i will have to stp and plaquenil was not one of them. I guess though if you feel you could manage without them then that would be best long term . x x style_emoticons/<#EMO_DIR#>/cloud9.gif