View Full Version : HELP! Pregnant on plaquenil and cellcept.
10-21-2006, 07:21 AM
I need to know if anyone has been pregnant and on these medications. If my calculations are correct I about a month into the pregnancy. I did some research on cellcept and its not recommended while pregnant. Im afraid I will harm the fetus with this med. Please someone help! As of now I'm stopping the intake of cellcept. I'm calling my Dr. on monday and lots of prayers.
Currently I take 1000mg cellcept /day
I know some doctors keep their patients on plaquenil while they are pregnant and others have their patients come off. My husband and I are trying to have a family and they did take me off plaquenil (I took 400 mg a day). I saw a high risk OB doctor at Vanderbilt. Johns Hopkins actually thinks it is best to keep patients on it to avoid flares. So I guess I wouldn't be too stressed over the plaquenil. Plaquenil has a very long half life somewhere between 30-60 days meaning it stays in your system a long time after taking it. I was on Imuran and also stopped it, but the doctor said that they have patients who have to stay on all the drugs I was taking. The doctor said that Plaquenil is a class C drug. Imuran is a class D drug. I've never taken Cell Cept, but I looked up it's half life and it was about 18 hours. I saw where the studies said Cell Cept can harm infant rats. Imuran also causes birth defects in rats, but has yet to cause a birth defect in humans and there are lots of patients who have been pregnant on Imuran. I've done a lot of searching through medical documents about Imuran. I hope this makes you feel a little better.
I understand how worried you are about the drugs you've taken, I've gotten off my drugs before becoming pregnant and I'm still worried to death. I just try to remember that God doesn't give things you can't handle and he loves your baby even more than you do. Keeping you in my prayers!
10-21-2006, 08:59 AM
Hello, Jessica. Is there any way you can reach your doctor today to discuss this with him? You are correct that you should not take Cellcept when pregnant unless your doctor specifically tells you to continue, so you are right to stop taking it until you can get in touch with your doctor.
Cellcept is in FDA pregnancy class C, which means that its effects on fetal development aren't clear, so it shouldn't be used during pregnancy unless absolutely necessary. Cellcept is in this class because some studies done in animals indicated the possibility of birth defects - but you have to remember that these studies are sometimes done at doses higher than the maximum dose prescribed for patients, and they are animal studies only. so it doesn't necessarily mean the same thing would happen at the doses normal for lupus patients. There have been some cases reported in medical literature where women who had received organ transplants had successful pregnancies while taking cellcept. The cellcept apparently caused an increased risk of lower birthweight and premature birth, but these women were taking cellcept throughout their pregnancies, so their situation is a little different.
Plaquenil has a good safety record in lupus pregnancy and it is often continued during the pregnancy, so it's probably okay for you to keep taking your normal dose, until you get in touch with your doctor. If you are taking coumadin or ACE-inhibitors for blood pressure or kidney problems, you should also talk to your doctor before taking them.
If you were taking oral contraceptives to prevent pregnancy, there's some evidence that Cellcept may make birth control pills less effective, so most doctors will recommend that you use two forms of contraception to prevent pregnancy.
Jessica, I know you are probably terrified right now, but you've done the right thing by stopping the Cellcept early. Now, try to get in touch with your doctor - if he is not available, someone may be taking emergency call for him. If you can't get in touch with your doctor, call the pharmacist where you got the cellcept and explain your situation. I know it's really hard not to stress out under these circumstances, but stress make cause you to flare and make things harder. Remember that doctors today have extradorinarily sophisticated equipment and ways to monitor your pregnacy and make sure everything is okay.
I will be sending up lots of prayers for you today.
10-21-2006, 12:50 PM
Congrats on the pregnancy! I am pregnant, too, only 12 weeks along. When I found out two months ago, I told my husband first and then immediately called my doctor. Luckily it was during the week and I was able to talk to him that day because I was pretty terrified.
This is what he told me: Stop the Plaquinil and Imuran I was on right away. And the Salagen I was taking for Sjorgen's Syndrome. The only thing I've stayed on was the prednisone, which I was on 15 mg/day. I've been really trying hard to cut back as much as possible on the prednisone because even though I've talked to my rheumy, a high-risk OB AND a maternal-fetal-medicine doctor and they said its okay to take, I still don't like being on it while pregnant. If you'd like, I can let you know some alternative things that have REALLY helped cut back the pain in my joints. My rheumy wants me to go back on the Imuran after the first trimester, but I think I'll wait and see if I really need it first.
I know exactly how you must feel. Excited, yet scared and worried, too. I had two babies before my diagnosis, and this pregnancy has been a whole different experience. But I can tell you that its been a real blessing in my life. My symptoms have actually IMPROVED since I've been pregnant. I've heard women either feel better or worse during pregnancy, so hopefully you'll be like me :D The maternal-fetal-medicine doctor explained to me that its because a woman's body naturally has a lower immune system during pregnancy because their bodies are trying so hard to protect the baby, making them more suseptible to illness. Since Lupus patients have a higher-than-normal immune response, this is actually beneficial to us and we often feel BETTER. So hopefully you'll have a wonderful, healthy pregnancy.
One thing they told me is that up until about the 20th week, there is not much difference as to prenatal care for Lupus patients. Once you hit 20 weeks, an echocardiogram is done when they do the ultrasound to find out the baby's sex. I guess there is a higher chance of Lupus patients having babies with a heart valve defect, so they do the test to see. Depending on the outcome is how your care is determined from there.
I hope some of this helps. And don't worry, things will be okay. Just take it easy! Feel free to contact me if you have any questions.
10-21-2006, 02:50 PM
Thank you Marycain and Atedj... it was a great relief to read both your posting. As for reaching my Md. I will wait until Monday I don't like to bother her outside of her work hours. So like I said, I've stopped the cellcept and have started to take folic acid(I know this is good to take when expecting). Thanks for the support.
In case your wondering I'm on the cellcept for inflamation of heart lining. It causes my chest to feel tight and painful. So far, I'm feeling pretty good.
Marycain you mentioned some natural alternatives please tell me more
Well ladies, feeling a little hungry again... I'm going to grab somethimg to eat.
10-21-2006, 02:57 PM
Thanks Bama your posting brought tears to my eyes reading the following....
I just try to remember that God doesn't give things you can't handle and he loves your baby even more than you do. Keeping you in my prayers!
A million thanks to you and the other women who posted for me.
10-21-2006, 03:39 PM
Jessica, there are a lot of cereals that contain 100% of the daily recommended amounts of folic acid - a bowl with some low-fat milk makes a good between snack.
I think it was Angie who mentioned some natural alternatives for use during pregnancy - I'm sure she will be sharing that information with you. I know you're really concerned about a healthy diet during your pregnancy. You probably know the healthy foods you should eat, but there are a few foods that pregnant women should avoid because they can make you or your baby ill. You can find more information at
If you're having a problem with nausea, especially in the morning, ginger tea is safe. If you don't like ginger, peppermint tea may also help. I had morning sickness all three times - I found that it helped to eat something as soon as I woke up before I got out of bed. Animal crackers worked for me - they are bland, lowfat and not salted. Most prenatal vitamins have a high iron content that can make you feel sick - taking them late in the day with a spoonful of pudding or applesauce might help.
I'm glad you are feeling better and less stressed.
10-21-2006, 07:02 PM
Here is what I mean by natural alternatives my natural medicine doctor put me on to control joint pain and inflammation:
1. Berry Extract - 1 T/day. My doctor said that 1 1/2 C blueberries (frozen are fine) in a protein drink or something work just as well.
2. 1 T of Cod Liver Oil - 2 times/day. I like the Carlson lemon flavor, it's the best tasting.
3. 3,000 mg of Vitamin C/day. I like taking the Emergen-C Vitamin C packets (3 of the 1,000 mg packets). You can find them at most stores like Walmart and they come in all different flavors. My favorite is tangerine and it dissolves in water and tastes really good. Plus there are other minerals added to it.
4. I have found this biotape with silver in it that you put on your sore areas and it increases blood flow and your body's eletrical current to reduce pain to the area. I love the stuff. This doctor also sells a bunch of other stuff. I bought the wrist supports, gloves and headache band all with silver in it that can be washed and used over and over. It has REALLY helped alot to control the pain in my hands (that's where I struggle the most). I like the headache band because you can only use tylenol when pregnant and it wasn't taking away my headaches caused by tapering off the prednisone. You can also use banana peels (fruit side down) on your forehead and back of the neck for the same thing. Both work really well. Not that I'm trying to advertise for the company, but you can find this stuff by Dr. Darrell Stoddard on www.healpain.net.
Anyway, hopefully some of this stuff will help you as much as it has me.
And like Marycain was saying, prenatal vitamins with iron made my morning sickness worse. I had to ask for the ones without the iron in a chewable form since swallowing pills makes me gag sometimes. But another good thing for me is that my morning sickness was MUCH better this time around. I learned that munching on dried gooseberries (3-5 of them at a time) took the nausea away for a few hours.
10-23-2006, 12:20 PM
Her is the latest on the situation.... Sunday afternoon began bleeding. I know this not a regular period type of bleeding cause of the flow. So once again I went to take yet another pregnancy test...now it was negative. I was so confused. Monday morning called my dr. he tells me I most likely am having miscarriage. So ladies, what do you think? I've been on such an emotional ride this weekend I don't know how to feel anymore.
10-23-2006, 12:58 PM
Jessica, I'm so sorry. Sadly this is something that sometimes happens in any pregnancy, but lupus patients with antiphospholipid antibodies are especially vulnerable. Call your doctor if the bleeding keeps up, you have really bad cramps, or feel weak or dizzy - you may need medication to contract your uterus and control the bleeding. don't take aspirin or ant thing with aspirin in it that could prolong your bleeding. If the bleeding remains heavy, this could indicate that the miscarriage is incomplete and you might need a D&C. You need to rest right now and let someone take care of you. Take a shower instead of a bath and don't use tampons to avoid the risk of infection.
This is a loss and like any loss, you need time to grieve. Some of the pregnancy hormones can stay in your bloodstream for a month or so afterward, so you may still have morning sickness or feel like you're pregnant, which may make it hard on you emotionally.
There are support groups and counselors experienced in pregnancy loss who can help. your doctor can help you find someone, or the March of Dimes Foundation has bereavement counselors available.
You will be in my heart and my prayers today. Please take care of yourself.
10-23-2006, 05:07 PM
thank you marycain your support is greatly appreciated...thank you again
10-23-2006, 06:23 PM
Oh, Jessica. I'm so sorry. My heart breaks for you. I've had alot of trouble with bleeding and horrible cramps. It helps to stay down as much as possible with your feet elevated. Make sure to go in A.S.A.P. to get an ultrasound done to find out how the baby is. Worrying and not knowing is often worse than knowing. I hope that whatever happens, you know that it is God's will. You may not understand now (or ever!) why things happen, but there is always a reason. I will keep you in my prayers.