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butterfly girl
08-05-2003, 08:49 AM
Hi,
I have had lupus for two years now in addition to fibromyalgia. I am a graduate student but will be done with my student teaching at the end of May. I am on Trazodone (for sleeping at night), Actonel (for osteopenia), Plaquenil, and am finally tappering off of the prednisone. At some point after I am done with school, my husband and I would like to attempt to have children. My question is if anybody knows what medications are safe to be on and what medications are not safe to be on. I have read a lot of the literature and it seems that Plaquenil is one that doctors are not quite sure of in terms of complications that it might cause the fetus. Also my doctor says that it might be good to stay on the Plaquenil so as to prevent a flare-up during pregnancy. If anyone has any words of wisdom because they have been through pregnancy and lupus and know what medications are safe and not safe as well as any other advice with pregnancy and lupus, I would be greatly appreciative. :)

Saysusie
08-10-2003, 06:34 PM
Butterflygirl;
Most doctors will suggest that you achieve a state of complete remission at least six months prior to conception to increase your chances of a successful pregnancy. Your doctor is correct in saying that prednisone should be monitored very closely should you become pregnant, but there are different schools as to whether or not they should be discontinued. If you must take a cortisteroid, prednisone or prednisolone is generally preferred since the way that they are metabloized in the placenta limits the amount that reaches the baby. However, antimalarials and hydroxychloroquines (plaquenil) and immunosuppressants (azathioprine and cyclophosphamide) should be avoided during pregnancy and Methotrexate should not be taken at all. Some doctors will re-introduce cortisteroids at about the time that the mother goes into labor, keeping it on his dosage for several weeks thereafter and then gradually tapering off (this is done to counter possible postpartum problems).
You should talk to your rheumatologist and your obstetrician to thouroughly discuss your drug therapies before concieving and during your pregnancy.
Best Of Luck To You
:lol:
Saysusie

shew
09-13-2004, 05:44 PM
I was diagnosed with lupus and FM seven years ago. I am ten weeks pregnant with my first and under close supervision by my rheumatologist, high risk ob and my pain doctor. I got the go-ahead from my doctors before becoming pregnant, went through over a year of getting off serious medications such as methotrexate, plaquenil, celebrex, kadian, medrol, ambien, and I'm sure I'm leaving out a few.

Since I became pregnant my lupus has been out of control. My doctors still have me on actiq (fentanyl citrate) and morphine solutabs, which I do worry about. I am given 30 actiq and 15 morphine a month, which I don't use up. But I have grave concerns about the effects of these medications on my baby. I have been given many assurances that there is very little risk of birth defects, that the biggest risk to the baby will be during that last couple of months if I remain on these meds the baby could be born addicted. BUT, I feel like I'm going crazy with my pain.

I suffer from extreme joint pain, muscle pain and neuropathy. The pain becomes so intense that the slightest touch or movement is like someone is driving nails through every inch of my body. I feel sometimes like I am making the wrong decision taking any medication at all, wondering if the doctors really know the long term effects of these meds on a developing fetus. I don't want my child to suffer, especially when I'm well aware of what suffering is like.

Has anyone out there been through pregnancy and can show me the light on the other end of the tunnel? Has anyone used strong narcotics during pregnancy and has a happy healthy baby to show for it? It's one thing to get assurances from the doctors, but it's a whole other ball game to hear from someone who's "been there, done that."

I'm also worried about what's going to happen during the last 2-3 months when I'm told medication is not an option. I'm beginning to explore other alternatives (as I have in the past) to pain management, but there are times when all the relaxation, stretching, bubble baths, biofeedback, etc in the world don't conquer the pain and only those narcotics do.

If someone else has been through this, please talk me through my choices and let me learn from your wisdom and knowledge. As helpful, loving and supportive as my husband and father are, it just doesn't compare to someone who's going through it or has been through it.

Thank you!
shew

Saysusie
09-18-2004, 10:24 AM
Hi Shew;
I read your posts and my heart went out to you. I have not gone through what you are going through and I truly hope that someone who has responds to you.
I just wanted to say that you are in my prayers and in my thoughts!!

Best of Luck and please stay in touch with us!!

Peace and Blessings
Saysusie

BetsyBuddha
03-18-2005, 05:51 PM
I have FM and SLE. I am a master's student in french. I had my baby in Oct. 2003. My doctor previously told me that getting pregnant was abd idea, I had been in remission for a couple years. I went into remission with a high protein vegetarian diet, hot springs, and saunas. I was on Predisone and Plaquenil, and flexeril and lortab. I had to get cortosteriod injections in my hips about 5 months into the pregnancy. I was induced and I had my doctor collect our umbillical stem cells to bank them so maybe I can use them down the line in gene therapy. Because in theory, stem cells go to your bone marrow aand rebuild you a new immune system. But I can't use the cells if not research is being done. But the pregnancy helped my fibromyalgia extremely, I felt great after having her and stayed in remission a year and a month after she was born. Now however, it is a different story, now I have CNS vasculitis and Brain invovlement, but having a baby does make things nicer....even if it's harder..the pain is not in vain...pain just kinda fades when you look into your child's eyes. And those are the good things in life.


Does anyone know anything more about Lupu sand Stem Cell Research?

tdeyne
03-20-2005, 06:08 AM
BetsyBuddha-

Hi I read your comment and I have some questions. You said your dr told you that getting pregnant was a bad idea-did he say why? Also, you said pregnancy improved your FM, which is awesome by the way! :D But other than you getting the shots in your hip, how did it affect your lupus as a whole? I am looking to get pregnant hopefully the end of this year or beginning of next, so I'm loaded with lots of questions! :D . It has been made very clear to me by my ob/gyn that since lupus is so unique and affects each person differently, it's really hard to say EXACTLY what will happen to me, but it ALWAYS helps speaking to other moms that have lupus as far as giving me some kind of clue.

BetsyBuddha
03-20-2005, 04:07 PM
Well, Lupus is inherently evil, I compare it to the image of your own mother cutting your neck. It is our DNA, wow, still after all these years it blows our minds. During my pregnancy life was just as hard as before but I had morning sickness and this "tumor" was growing larger and harder for my body to hold. (And sometimes it feels like that without a baby with lupus so, on the bright side it's a familiar pain.) And well, I just had to take pain pills, phenegrine for nausea and the steriod shots. After the pregnancy was fine, but now a year and a half later, the lupus is back and i have CNS vasculitis. I have a history of brain aneurysms in my family and they are saying that I am very lucky everyday.. They say I should expect a stroke, but I know how to trick the wolf, I have done it twice. But I just have to change my entire lifestyle, again. if you have any questions msn me or e-mail me, I'd be happy to talk. And by the way, it is so nice to have a baby even though it is extrememly hard, it also is extrememly motivating and inspirational...as zaijah screams baby really loud! I still have to laugh
:lol:

kelforster
09-01-2006, 09:41 PM
BetsyBudda,
Wow, you are tough! I don't have all the issues you have, just SLE, and I currently have a 1.5yr old daughter. When I was pregnant with her, I was only on the prednisone (low dose-5mg/day) and not on the plaquenil... Since my daughter was born I had a flare up and I ended up getting on Cellcept (which I never took prior) and Plaquenil. Since then, I have been fine... I told my Rhuymie that I was planning for Baby # 2, and he told me it would be fine to be on the plaquenil(400mg/day) and the prednisone(5mg/day). I found differing articles/research on that....
I am concerned about taking the plaquenil during pregnancy, and my OB recommends me to be off of it the first two trimesters. I was just wondering how much plaquenil you took and was it for the entire pregnancy? I already waited 5 months seeing if I can again lower my plaquenil dosage to none, but currently I am on 200mg/day. Sorry about the essay!
THanks in advance for your help! My heart goes out to you.....
:wink:

Bama
09-02-2006, 11:45 AM
Besides Lupus I also have Autoimmune Hepatitis (AIH). About 70% of patients with AIH can never get off prednisone and/or immunosuppresents due to the high relapse rate. My husband and I are planning on having a baby and my doctors would like me to get off both Plaquenil and Imuran, but I have read that you can have a healthy baby on both. AIH is more common in England and it is standard practice to keep pregnant women with AIH on Imuran - I even had a lady tell me she has had three healthy babies on Imuran and even breast feed them. I only shared this with you to relieve some of your fears of being pregnant and being on drugs - I'm not suggesting you be on Plaquenil or Imuran.

I was told 10 mg and under of Prednisone is not a problem while being pregnant and that higher does to control flares is also acceptable - better to keep the flare under control.

ButterflyRN
09-05-2006, 07:55 AM
Well I was just recently to Johns Hopkins Lupus center for a second opinion and I was told that I would be taken off of the cellcept and put on imuran if I was to become pregnant. Make sure all you women of child bearing age are not taking actonel though. I learned from the JH rheumy that it builds up in your bones and is always in your body and actonel can cause birth defects. In regards to plaquinel the rheumatologist at JH never said anything about it but my present rheumatologist said he would take me off of it and have me on the prednisone. Prednisone is safe, but plaquinel they are not sure on.

atedj
09-05-2006, 09:44 AM
Hello butterfly,

I just found out I was pregnant a week ago. My rheumatologist took me off the plaquinil right away and kept me on the Imuran I started a few months ago. I'm still taking prednisone, too.

Question: Has anyone quit plaquinil cold turkey and had any side effects? I was taking 200 mg/day. I'm pretty nausious already (started at 5 weeks) and didn't start feeling sick this early during my first 2 pregnancies. I was wondering if maybe the plaquinil is attributing to it (I hope!)?

Hope that you are able to get pregnant soon Butterfly. There is nothing like feeling life growing inside of you.

Angie

ButterflyRN
09-05-2006, 02:04 PM
Thanks Angie! I keep my hopes up! I know it will be a while before we will be able to think about trying but I keep praying. We've decided that our first child will be adopted. But I still pray to one day carry a child and feel that life growing inside of me as you so well put it. Best of luck through your pregnancy!
As for the plaquinel causing you problems with nausea I'm not too sure on that. I hope someone can give you some advice.
~ Butterfly

tdeyne
09-05-2006, 04:53 PM
I've been on Plaquenil for 3 years. It did make me very nauseous at first, but after a few weeks it went away. I just found out Saturday that I am pregnant and my rheumie is keeping me on Plaquenil. Hope this helps.

luvmods
10-13-2006, 12:22 PM
I have had Lupus for 20 years now and am 40 years old. I have 2 children. My first I didn't have the Lupus, but right after I had him I was diagnosed with Lupus. I then 3 years later got pregnant again with my daughter while having Lupus. I was pretty much in remission, but was a high risk pregnancy. My doctor told me all the grim stories about how Lupus patients that are pregnant miscarry and how lupus can flare. He even suggested abortion. NOT!!! The last 3 months of my pregnancy I was flat on my back in the hospital be monitored by the doctor. I was so depressed and bored I checked myself out twice, one time for Christmas, which was a ver bad idea, cause I got real sick and was taken back to teh hospital by ambulance. The doctor wanted to take the baby as soon as possible so I had 3 amnio's to make sure her lungs were developed enough to be delivered. When it was time they induced labor and she was delivered, but not without complications. My blood pressure rose so high that I blacked out and wasn't able to see her being delivered. She was a healthy baby girl 6 weeks premature, but doing great. She didn't even have to ne in the intensive care unit that they had me tour and prepare for. So there is some good and bad in being pregnant with Lupus. Just talk with your doctor and follow his directions. To the letter no matter what, cause he knows and will help you. Good Luck!!!!

LDG
10-24-2006, 11:51 AM
I have some advice -- it's to pay very careful attention to your body! I had my first child pre-lupus. That was a piece of cake. Developed lupus afterward. 3 years later, I got pregnant with child 2. That will be the last one! Pregnancy was complicated from the beginning from the standpoint that my body was trying to kill my placenta. I had a stage III placenta (i.e., old looking) about half way through the pregnancy. I had NSTs twice a week at the doctor's office, US at least once a week, and was followed by my ob/gyn, rheumatologist, and a maternal/fetal med specialist. End result? Delivery at 35 weeks, healthy but tiny baby boy. He was small for gestational age due to the growth retardation from the bad placenta. But he's fine now -- 16 months old and completely normal.

I kept after my ob/gyn to follow him via US early on because I was worried that the lupus would hurt him. She was skeptical at first b/c I wasn't exhibiting other lupus sx then. Well, I was right in the end. We were able to keep a very close eye on things.

I did have bed rest the last 2 weeks too -- very hard but worth it.

Good luck -- post if you have any additional questions. I would definitely recommend a maternal-fetal specialist in addition to your regular rheuma and ob/gyn.

LDG