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Mctd And Pregnancy

Hello

I'm a 30 year old woman, I have had Fibromyalgia for about 10 years, and almost 3 years ago developed MCTD.  I actually find the Fibro pain worse, but only because no meds will affect my pain.  I do quite well on the meds for MCTD (but only if I'm on a lot of the stronger ones)  My MCTD seems to be most like Lupus and Scarderma. 

I know Doctors are really busy, but I wish they could spend more time to explain things more, instead I have to look up stuff on the internet, and scare the pants off myself.  (Ignorance really can be bliss, can't it!?)

My husband and I want to start trying for a baby.  I'm scared now, I'm seeing my family doctor, rhumy, highrisk obgyn, and a pharmacologist.  It's scary thinking I might have to go off some of my pain pills and drugs for MCTD, but also scary for the baby to think I'll have to stay on some of them.  I'm also hoping I'll be up to taking care of a family. 

I find that I get so tired and want to sleep, but when put in a situation that I HAVE to deal with, often helps.  So I'm hoping motherhood would give me a kickstart, can't sit around feeling sorry for yourself when you have a baby to look after right?

I'm still nervous, any other mom's out or hoping to be moms would like to talk?

Meegeeq Meegeeq 26-30, F 10 Responses Jan 2, 2010

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Well, l I share a similar experience. I am 29 years old. My husband and I have been married for five (5) years now going six years and we are desperate to have a baby of our own. I was diagnosed with MCTD about 10 years now. Doctors say its likely lupus and scleroderma. I been on medications ever since. Sometimes I get really frustrated about my condition because I would love to get pregnant and this disease comes with so many complications. Anyway, I trying to be a fighter to do whatever it takes to someday being pregnant with a healthy normal baby. Other peoples stories do help me and online tips about fertility issues. I will appreciate ever help I can get. Thank you

There is a wonderful leading expert in breastfeeding here in Canada, Dr. Jack Newman. Look him up online or facebook, he will answer lots of questions about medications. I was ok'd to stay on everything while pregnant and breastfeeding. There is new research out now (for doctors that take the time to research) that shows that many medications thought to be forbidden during breastfeeding are actually okay. My mix of disease is the same as you (Lupus/scleroderma).

I actually got better during pregnancy, I would like to stay 4 months pregnant for life. My baby boy is now 8 months old, still breastfed, and the happiest baby around. The journey to him through disease, infertility, and IVF was the hardest thing I've gone through, but more worth it than I can say.

I am 35, will be 36 soon, and was diagnosed a year ago after not knowing what I had for almost three years. things were going along decently, not great nor horrible. Then I got pregnant. Not trying mind you. I already have two boys, 16 and 13. I never missed a pill but somehow I am having my third son. Scared and excited at the same time. I am currently 32 weeks along. The first term was okay. I was taken off all meds at first, then my doctors, rheumatologist, cardiologist, and the high risk OB, got together and decided that it was best to take half of the dose of plaquenil, meds for my heart, thyroid, and only have prednisone when needed.

Very shortly in my second trimester, I had to start taking the prednisone everyday because I just could not move. Currently I am doing okay. It is still day by day. I am about the size of a houseboat but not much I can do. I have been advised to do minimal activity due to my heart function. But over all I am doing a lot better than any of my doctors predicted.

My concern is what it will be like right after my son is born. I have heard people say their body crashed but did not explain. I am scared.

I'm 31 with mtcd, had it for four years and me and husband are planning to have our first baby this summer. Which means coming off the drugs in march to see how my body copes and to get it out my system! I feel very scared and lik I'm on my own as doctors don't seen to give much infor or reassurance or anything x

If you can't cope without your medication, request to see a fetal medicine specialist before you start trying. I saw one when we decided to start trying five years ago. He said that it was best for me and baby to stay on the medications, (without meds the arthritis is extremley severe and goes into every joint, and I can't walk or even eat). If you CAN go off them, than of course that's way better. Good luck!!!
If you don't get pregnant within a year, don't wait to see the doctor. I waited because I was scared of what they would tell me, and it turned out we were dealing with male factor IF (I though it was me because of all my other issues) so now I'm 33 and am 12 weeks pregnant today! we had to do IVF, but I wish I hadn't waited to find out.

I'm 31, I've had MCTD for almost 10 years. I'm 10 weeks preg today. It took a bit longer than others to get pregnant (almost a year), but I finally did after an HSG 11 weeks ago.

So far, I've had an exacerbation of headaches, which I always got with MCTD, and obviously I've had to go off my usual meds of Plaquenil, Colcrys, Oemeprazole and Celebrex and rely solely on Propranolol and as needed pain meds to help control them. Which hasn't gone well since I have a tendency to vomit them up from the pregnancy. I was even in the ER last night with a severe headache that just wouldn't quit after several prescription pain killers. I was rather surprised how safe prescription pain pills can be if used properly and with restraint. NSAIDs like Advil, Celebrex, etc. are big no-no's in pregnancy. I was even told that it can interfere with the ability to get pregnant since it can reduce inflammation in the uterus which is needed to provide a good surface for an egg to implant. So if you are on anti-inflammatories and trying unsuccessfully, it could be part of the problem. You may need to cut the dose back a bit or go off entirely.

I'm also having a recurrence of some mouth sores which kind of scares me a bit (I always got those with the worst flares and I'm afraid that the worst is yet to come). So far, I did find out there was a twin that did not survive for very long and per my OB was likely malformed to begin with and unlikely to be related to MCTD. I was put on progesterone as a precaution and so far so good. The baby looks great with a lot of movement and strong heartbeat and measuring ahead of date.

In short, having MCTD does increase the risk of infertility, miscarriage and complications, but by no means indicates that one shouldn't try if that is what they want. It may take longer and require a bit more management than most, but the risk is not so high (for most people) to make pregnancy contraindicated. If you have kidney or lung involvement, that could be problematic as is the case for anyone with kidney or lung issues.

Per my rheumatologist, it could go either way. Pregnancy could put me in remission for awhile, exacerbate the illness or have no change at all. Best of luck to you all.

Hello! It's funny you responded to this now. I wrote it a couple years ago. I'm 33 years old now. Conrats on your pregnancy! I am now Nine Weeks 1 day. I am an IVF success storey. Surprizingly I'm not the one with fertility issues. I'm also on progesterone, which is standard with IVF.

I saw a fetal medicine specialist a
few years ago when we started trying (trying for over 4 years until we did IVF), and they have kept me on my prednisone, plaquenelle and another one I can't remember the name of (normally used for liver transplants).

So far my symptoms of Fibro have imporved greatly. I have not had a flare of MCTD in a long time, unless I miss a dose of medication.

I'd love to keep in contact with you during our pregnancy, since we are so close in dates. I'm due August 8.

I have MCTD too. I am 29 years old, married for 5 years now and trying to get pregnant. My birthday is also August 8. Good luck in your pregnancy.

Nice reading your story, yes knowledge can be scary but you are your best advocate, learn everything you can and write your questions down before you go into the doctors appt, make them listen and answer all your worries. Make sure that you understand what having a baby will do your body is not healthy ask questions and more importantly get answers. I wish you well. And my Fibro pain is also quite bad, it seems nothing but an old fashioned hot bath helps releive and relaxation also.....best of luck..

I was diagnosed with mctd, I'm 28, and my rheumatologist wants me to get pregnant, my husband and I have been trying to get pregnant for years with no success I am taking chlomid to help, but I too am scared to be on plaquenil and prednisone for the baby, let me know if everything went good with u

Hello. I don't check this much and just got this message. I really hope chlomid works for you. This was a few years ago I posted. I am now 9 weeks pregnant thanks to IVF. Surprizingly it was not me with the fertility issues.

Let me know how it goes for you!

Hi,
I am 28 and diagnosed with MCTD in 2005.From then i am on continuous medication with Hydroxy Chloroquine Sulphate (same composition of plaquenil).Now I am on prednosolone 5 mg everyday with HCQS 200 mg.I am pregnant of 10 weeks.But unfortunately i am currently out of my country.As per my doctor (rheumatologist this medicines are very much safe during pregnancy).

Here i consulted with a gynocologist only.But please suggest me whether I need to consult with a rheumatologist here?Because I am very much worried about my baby.

Hello, <br />
I was diagnosed 2 years ago with MCTD and am trying to have a baby right now. I am scared cause I do have pulminary fibrosis so my breathing is bad. Im afraid of it getting worse, but I as like most women have dreamed of having a child. I am on 75mg of aziathiaprine an acid reflex med and adalat. I cant really go much lower then that because the inflammation in my lung will flare up:(. If you have any suggestions please let me know any advice will help!

hi <br />
I didnt get diagnoised with mctd untill after i had given birth.<br />
I was completly fine untill i got pregnant.<br />
We want to try for another baby but i couldn't go through that again, pluse my body would take the straine. I'm waiting for a lung transplate but i'm still looking into a surrogart.<br />
good luck.

IN the same boat here...want to try to have a Baby so bad but hubby worried about the pain/damage to my body (going off meds and possibly a flare during pregnancy?) and possibly low birth weight and vascular issues with the baby.. All we can do is gather info and make the best decision we can...best to you!!!

Hello!<br />
<br />
I have MCTD, Fibro, and CFS.<br />
<br />
The BEST I have felt in the past 10 years is when I was pregnant!!! NO MCTD Pain and the Fibro pain was mild. We joke that I should just keep having babies just to feel "normal." We will be working on baby #2 within the next year. :)<br />
<br />
I was drug free throughout the pregnancy and nursed my baby for 13 months. I went 24 months with NO pain meds. The 13 months I nursed was a wonderful bonding and loving experience with my daughter. HOWEVER, I was in excruciating pain most of the time (no pain meds) and made me feel like it took away from my daughter. Yes, you can take Vicodin while breastfeeding but that doesn't touch the MCTD pain. You can also take Plaquenil and Ibuprofen while breastfeeding. I'm now not breastfeeding and on Cymbalta which has made a huge difference. Off and on Plaquenil... because it makes me feel bad.<br />
<br />
If you are wanting to breastfeed there is an excellent book called: Medications in Mother's Milk. <br />
It's hard to find but it is AMAZING and well worth the money. All of the types of meds we'd take are in there. I also worked with lactation consultants to get their opinion too. I was extremely careful with every move I made with medication and nursing. I got the opinions from the OBGYN, Pediatrician, Lactation Consultants, and Pharmacists before I took a medication. The thing you have to keep in mind is that the OBGYN has your best interest in mind but the Pediatrician "yes or no" is the one that counts!<br />
<br />
Breastfeeding was extremely important for me as a mother. There we SO many horrible pain days that I had and I was the only one to take care of the baby... Looking back now I wish I started the Cymbalta sooner and stopped breastfeeding earlier. With the next baby breastfeeding will be a month or two (if that) because I know there is NO way I can take care of two kids without medication. Hopefully, you have family around for back up... I never did. <br />
<br />
Hope this helped! Good Luck