This Is MS Multiple Sclerosis Knowledge & Support Community

Hi
I know you're supposed to give up Copaxone before trying for a baby. I have read all the literature I can and there is no data that I found that links Copaxone to birth defects.

It sounds a bit clinical but I have to weigh up risks here. I have very active MS, but it has been very quiet on Copaxone. I gave up Copaxone for a week a few months ago as I thought I might be pregnant, but I had a relapse a month later (first in 2 years).

I am very worried about giving up Copaxone and THEN trying for a baby, as I think I have a high chance of relapsing.

Has anyone else taken Copaxone until they got a positive pregnancy test? And was everything ok?
Thanks
WW

Hi. I was on copaxone and wanting to get pregnant. My neuro said absolutely not and wanted me off it for three months before trying. But the drug-rep people at copaxone were very helpful and sent me info they have showing little to no risks (you may have already recieved it). Also, my ob sent me for a consult with a high-risk ob who researched it and said it was okay. Ultimately, I went off the copaxone anyway because I did not have very active disease, and I didn't notice any significant ill-effects. However, I did not have a successful pregnancy (three miscarriages), but that is another story, and I don't think related to MS or MS meds. (I do have two beautiful older children with which I had problem-free pregnancies...pre MS dx, but based on symptoms, no pre MS). Ultimately, I realize I am giving no actual advice or data here, but I guess my point was to encourage you to contact the drug company and get their research (if you haven't already) and then consider meeting with a high risk ob for their input (again if you haven't already) and then go with your gut. I would be delighted if you would be wiling to share what you discover and decide, as I am now having disease activity and going back on copaxone. And I stil haven't totally given up on trying to get pregnant.

Best wishes!!!

-- Christy

Hi Christy
I have sent you a pm,
Guzzy

WW, almost 5 years ago I found out that I was pregnant - I was on Copaxone at the time. My estimated date of conception was almost a month before I got a positive pregnancy test and stopped the Copaxone shots. So, I was on Copaxone even after I conceived my daughter and there were absolutely no complications or problems! At the time my MS was relatively active (having exacerbations about twice a year). I stopped taking Neurontin, Ultram, Amatryptaline and Copaxone at that time and the only medication that I was on once I found out I was pregnent was Tylenol w/ codeine and Baclofen.
The biggest concern for us was worrying that our daughter may go through drug withdrawal when she was born (which was also not an issue!)

I did have many ultrasounds in which they were watching for abnormalities and/or birth defects -- there was nothing!

The attached URL is a picture of my daughter - a happy, healthy 4 year old!

Good luck!! Hope everything works out as well for you as it did for me!

Nic

Hi Nic
thank you so much for ur msg, it meant a lot to me. Your little girl is so beautiful.
Your experience of having active ms is the same as my situation. It's a real relief to hear stories that everything was ok. I would stop instantly if I found I was pregnant, but stopping before that would be dangerous I feel, for my own health.
Thanks again for the relpy,
WW

Hey wonderfulworld,

I don't know if I'm late here but I am in the same boat as you are now. I too am trying to conceive at the moment. I have had three miscarriages but they were not related to MS.

Here's the story. I was supposed to go on Avonex but the company said not to since I was trying to have a baby at the time. I got pregnant and miscarried while I wasn't on any meds. My doctor gave me an MRI and saw active lesions and put me on Rebif. SHe told me just to stop the Rebif as soon as I find out if I'm pregnant. A monther later, BOOM I was pregnant and off the Rebif. A week later, I miscarried so I restarted my Rebif. 2 months later, BOOM Preggers again! Off the Rebif I go. I miscarried again! So I refused to get back on the Rebif after that one. Well I switched to a different doctor since the one I had left for a new state. The new one told me he wanted me on Copaxone. He said there has been no clinical proof that Copaxone causes any miscarriages and is even safe during a pregnancy. I can even breastfeed while taking Copaxone! The only problem I have is I have nasty site reactions with Copaxone.

Well I saw a reproductive endocrinologist who found adn removed the septum he found in my uterus. Me and my husband are trying to conceive again. My only problem now is I am still getting really nasty site reactions, but I want to be able to breastfeed. If I can't take the Copaxone, my doctor said he will take me off the meds and treat any symptoms that come up if they appear while I'm pregnant but I'll have to start on Rebif after I have a baby. Meaning, I won't be able to breastfeed for very long at all. Maybe a couple of weeks? There are so many health benefits to a baby to breastfeed and one of which is a slight resistance to MS. That's what I heard anyway. I'm not sure I can deal with the Copaxone.

But in responce to your question Wonderfulworld, Copaxone is supposedly safe before, before, during, and after having a baby. I talked to Shared Solutions about it and they said there's no proof that it's bad and any trials on rats they've done have shown no cause for a miscarriage. The interferons (Rebif, Avonex, Beta-seron) have all shown a slight risk which is why he wanted me off the Rebif before I even try again.

Thanks for your Azile, no you are not too late for the reply. I'm still not pregnant, and still on Copaxone.
That is really interesting what your doctor told you about it being quite safe - my neurologist warned me to stop it 6 months before even trying to conceive!. But my own gp said he wondered if it was ok to take it up to the point that you get a positive pregnancy test.
3 miscarriages is so very hard on you. I had one, and I thought my heart would break.
Thanks for your reply.
WW

I don't know how safe Copaxone is for Pregnancy but I will tell you my story.

I was diagnosed on 09/04. I was told I had polycystic ovarian disease after seeing an endocronologist and having an ITT test. I have a pitutary Arachnoid Cyst, http://arachnoidcyst.org, MS, Syringomyelia... all nasty diseases and they told me more than likely I would never be pregnant.

I was pregnant, 33, before I had the ITT test. I didn't know what it felt like.

I was on Medical Marijuana (which I think helps with the pain as well as the exacebrations), Duragesic for pain, Neurontin, Topomax, Elavil, Vicodin, and about 10 others I can't recall. I take Cortef (a steriod) to keep up with keeping my pitutary gland to work.

I was afraid that my boy, http://cassiusclay-harris.com , would end up severly disabled like me and so far so good. He's kind of advanced. He was premature and that was a nightmare. I breastfed until he was about 14 months and I still lactate beacuse before I was pregnant I could feed an African village from all the milk I could not express thanks to my Arachnoid Cyst.

I waited and waited to take Copaxone because I didn't want to breastfeed on it and Dr. Richard Shubin in Arcadia (highly recommended as an MS specialist) told me I shouldn't breastfeed on this stuff. I hate Copaxone so far. It's taking me four months to get my nervous system to work with it. I was sick with "flu like symptoms" for six weeks and every cold lasted for a week and a half. It's kind of been a nightmare because I get tumor sized welps on my legs (I won't do it no sir re bob) from the "injection site" and had the nurse tell me use a warm compress (which has helped with the pain of the caustic material breaking down the fat... how can they expect we can't feel this? Are there nerves in fat? There are in the skin and muscles I think they can "feel" what's going on.) and let the alcohol dry.

It's the zines and anti seziure drugs that cause the most birth defects. I would find out if there are chemicals in Copaxone that have zines, ines... what ever and buy this great book called Medication and Mother's Milk and it will answer a lot of your questions. There are L1-L5 and L-5 goes through the placenta.

I was worried about taking Marijuana but what do you think midwives used to do for nasuea. Another great book. Women and Marijuana.

If my husband had been on copaxone I would have been concerned. I think the men should come off this stuff too because I bet it has something to do with low sperm count and wonderful things like that... like the middle ages when they wanted to blame us for the sex of a child.

Think about it. Do some more research and I have a feeling this drug can contribute to problems with miscarriages. I would look into that. There are too many women going through that methinks.

Love,

Thanks for that Catherine.
I did conceive a few months ago, gave up Copaxone immediately, but still had a miscarriage 8 weeks later.
My obs/gyn is investigating a possible clotting disorder in me at the moment, so it may be that.
But when I'm trying again I'm going to give up Copaxone first, just in case it had something to do with it.

I had a very severe form of remitting MS and was being treated with the aggressive drug Tysabri. I came off that drug as soon as I fell pregnant but because my MS was so severe, my neurologist suggested that I take Copaxone while pregnant after getting past the first 12 - 18 weeks of pregnancy. I started copaxone at 24 weeks pregnant and continued after having a beautiful healthy baby girl. She is now 5 months old.bi also breastfed on copaxone.

DonnaSaf wrote:I had a very severe form of remitting MS and was being treated with the aggressive drug Tysabri. I came off that drug as soon as I fell pregnant but because my MS was so severe, my neurologist suggested that I take Copaxone while pregnant after getting past the first 12 - 18 weeks of pregnancy. I started copaxone at 24 weeks pregnant and continued after having a beautiful healthy baby girl. She is now 5 months old.bi also breastfed on copaxone.

Hi Donna,
Welcome to ThisIsMS. Congratulations! I hope that your daughter continues to be healthy and also that you are doing all right as well.

NHE

I am just starting the process of switching meds to prepare for pregnancy. My dr said I can be on copaxone until I get pregnant. Did anyone else do this? I am currently on tysabri and having my last infusion in May. This is all makes me so nervous.

I have just taken my first injection of Copaxone, I have previously been on Avonex for 9 years. I guess I am looking/searching for support and wisdom in your attempts to conceive.
Ups, downs, sideways......
Was it difficult? How was your pregnancy? .... etc. I am overwhelmed with the thoughts of: how my body will react, what to expect, and the unknown. Thank you in advance

Tcadwi wrote:I have just taken my first injection of Copaxone, I have previously been on Avonex for 9 years. I guess I am looking/searching for support and wisdom in your attempts to conceive.
Ups, downs, sideways......
Was it difficult? How was your pregnancy? .... etc. I am overwhelmed with the thoughts of: how my body will react, what to expect, and the unknown. Thank you in advance

Welcome to ThisIsMS, Tcadwi.

My child was conceived and born long before I was diagnosed with MS (He is now 34 years old!), so I cannot answer your specific questions. However, I urge you to request a vitamin D test (the 25-hydroxy D test) from your GP or GYN in preparation for trying to conceive.

In several presentations, Dr. Robert P Heaney, world renowned vitamin D expert, has listed the consequences of vitamin D deficiency. The gamut of diseases includes:

· bone diseases, falls, & fractures
· hypertension
· increased risk of cardiac disease
· pregnancy problems (prematurity, low birth weight, & increased Cesareans)
· diabetes & metabolic syndrome
· periodontal disease
· decreased resistance to infection (flu, TB)
· various cancers
· increased risk of multiple sclerosis
· increased risk of schizophrenia
"Whichever system may be the weakest is the one that's going to manifest your vitamin D deficiency."
(Vit D deficiency has even caused heart failure in infants.)


A related video by another vitamin D expert:

D*facts Pregnancy (7 min.) May 2007
Dr. Carol Wagner interviewed by Carole Baggerly


The woman should have her serum vitamin D levels checked.
Supplementation with 4000 IU vitamin D daily is recommended for pregnant women whose level falls below the 40-60 ng/mL range.