I’m wondering if anybody out there has gotten pregnant while on anti-TNF’s? My doc wants me to start on them but my husband and I are trying to get pregnant again. We are having some infertility problems and it’s taking longer than initially thought to conceive. I’m starting to feel selfish in wanting to not hurt all the time and wanting to have energy again. I want to start treatment but don’t want to cause fetal harm should we get pregnant. Anyone have any thoughts?
Hi Kristen,
I was able to find these articles pretty easily on line and there were plenty more. Not super positive reading, particularly the second one from the UK. You should factor in what drugs the test group were taking. A lot of the 130 patients in the trial in the second article were on MTX with another med. You should definitely talk to your docs (fertility and rheumatology).
1) Pregnancy in Rheumatoid Patients
Good luck with your decision(s).
Wow. This is a tough one. I am not about to tell someone whether or not they should have children, as I understand that biological need very well. I'm not even sure exactly how anti-TNF drugs work, just that they do (sometimes). So in order to better answer this question for you, I contacted my guru of all things physiological, my Dad. He has a Ph.D. in Neuro Physiology and taught in the medical school at Ohio State University for 30 years. His answer mirrored my own gut reaction, which is that it is probably a really bad idea to get pregnant while on anti-TNF meds. Now I realize that it is not a scientific answer, but he strongly recommended doing a whole lot of research and talking with your Rheumy, your fertility doc, and a genetic counselor before you start the anti-TNF's.
Having said all that, I have to answer with the rest of my gut reaction, which is: Had I known when I was having children that I would develop PsA, I'm not sure I would have made the same choice as I did. Knowing that 50% of my kids' dna comes from me, and knowing that PsA is such a difficult and painful condition, I don't think I would have decided to have children at all. My oldest son who is now 17 has shown no signs of developing psoriasis or PsA. My youngest who is 15 has psoriasis on his scalp. Not very long ago, after a particularly brutal bout of nausea/vomiting/misery from my biologic, my son snuggled up with me and asked me, "Mom, do you think I'm going to get what you have?" That was one of the most painful conversations I have ever had to have. All I could tell him was that I hoped and prayed that he didn't, but if he did, we would deal with it together.
I don't mean (at all) to be negative Nellie and I'm really glad you are asking these questions on this board where there are a whole lot of people who are smarter than me to answer for you. All I can talk about is the decisions that I've made, and whether or not, in hindsight, I would have made the same ones. My kids are an incredible gift, and I'm glad that I have them. But knowing that they may develop PsA, and that it will be entirely my fault if they do adds an additional layer of guilt and fear that most people don't have to think about.
When thinking about this, there are several things that come to mind.
The first is that for many people with autoimmune issues it's difficult to get pregnant, and in that time there's the potential for major damage to be done to your body. Not treating PsA can be a dangerous proposition for many in terms of permanent damage.
On the other hand, many people with autoimmune issues go into remission during pregnancy without drugs - I did four out of six times. The first pregnancy during which I didn't go into remission was very painful and probably did a lot of damage to my lower back, and the second ended in miscarriage of twins, with evidence that my body was attacking the pregnancy.
In my opinion, there haven't been enough good studies done on TNF inhibitor use during pregnancy for me to personally feel safe being on one and trying to conceive. My rheumy's first question when we agreed I needed to go on a TNF inhibitor was what kind of birth control I was using as he is adamantly against his patients getting pregnant while on any of the TNF drugs.
I do know one person who took a TNF inhibitor during pregnancy - her daughter was born with multiple issues including partial deafness that will likely lead to full deafness, gastrointestinal issues, and heart issues.
So basically, because of my research and personal experiences, I, personally, wouldn't take a TNF inhibitor during pregnancy. The potential risk of an adverse effect wouldn't be worth it to me.
And this is where my dilemma is - do I give up on the idea of having another child and treat my PsA or stay in pain and keep trying for the sibling my hubby and I both want. I feel if I quit trying to get pregnant, I’m denying my daughter a sibling and if I keep trying in denying myself the ability to be in less pain. It’s a tough battle for me emotionally right now
I have just a couple of thoughts but no answers.
My parents were both only children and I intended to have more then one child but life (not due to PsA) my son is an only child. He has lots of friends and cousins who all seem to act as siblings. He says he is glad he is an only as he got more of me as a result (he is a sweet child) and I can better afford some dinners out, clothes shopping, travel and college. So sometimes the path we didn't plan comes out to be the right path for us.
There are so many worse things to inherit that PsA. After 40 years in nursing I have seen too much. And don't remember the generations of PsA patients suffered much more than us and the next generation will have much more options for treatment. I have taught my son to know his body and how to deal with doctors and insurance. I have taught him good nutrition and to honor what his body is telling him. I believe good parents suffer some guilt but I reserve mine for the times I was short tempered or too busy to hear at times.
I am not sure these will help with your decision. I also hope you do not attempt pregnancy while on anti-TNF. There is too much that could go wrong and too much to feel guilt over if it does.
I can't even imagine the pain you must be in (physically and psychically). Knowledge is power. Do the research, talk to as many docs as you can, and then you can make an informed choice, at least. Have you thought of either adoption or having another family member carry the child for you? When it became evident that I was getting really sick (without a diagnosis), and I had to give up on my plan for a third child, my sister offered to be a surrogate. I decided against it, mostly because of the reasons I mentioned above. I still hadn't gotten a diagnosis, but the sicker I got the more I realized that chances were there was something hinky going on in my system. I was afraid I would pass on whatever weirdness was going on inside. :) You know, as opposed to the general weirdness that is me.
Another possibility is NOT to give up on the idea of another child, but to wait. Get on the anti-TNFs, get into remission, and then try.
Before I had my first child, my Rheumy did not want to give me anything but NSAIDs if I was trying to conceive or even thought about having kids (I was 33 at the time). This was before I was even thinking about children. After my first I was put on Cyclosporine and she told me if I planned on having any more I should be off any medication for at least 3 months before trying to conceive. I got pregnant the second time when I was taking cyclosporine (not planned), luckily stopped it as soon as I found out and no ill effects on my 2nd child. I will tell you, I was so scared when I found out I was pregnant and was on the drug. I would definitely take the 3 month advice in the future. Whatever you decide good luck! It's a hard thing to be in pain and consider having children.
My feeling is since they take awhile to work, and you will most likely have a remission (or just feel better) during pregnancy, to hold off until right after you have your baby (hopefully moderating the post-partum flare you are very likely to have).
There will be lots of info out there. I'm just throwing my 2 cents in having had 2 kids, and been in the position of going on meds or waiting and going for a baby.
ETA: I just saw your second message about deciding to have another child. This is something only you and your husband can decide. I was only having on planning one, but my oldest has autism and we decided to try for a 2nd to have a more normal experience of parenthood. It's worked out great for both my kids. But it has been very difficult, with my health issues, juggling 2 children, when they were small. Now that they are older it is much easier.
It’s interesting that you guys mention remission during pregnancy with post-partum flaring because that’s exactly what happened to me, both with skin problems and the pain. Pregnancy was great, my skin has never been clearer and my only discomforts came from being the size of a small planet. Shortly after my daughter was born it was back with a vengeance.
Remission and post-partum flare is something that is very well documented yet dr's don't seem to discuss this with their patients of childbearing age. I went into my first pregnancy blind, and was unprepared for the post-partum flare. None of my dr's thought to mention it to me, yet when my post-partum flare hit all my dr's nodded like "of course this happened".
Ugh. This tugged at my heart strings a little harder than I expected. My middle son, the one who got all of my best qualities, and my closest child, has psoriasis. I know I need to have that talk too, but haven’t been able to make myself do it yet.
tmbrwolf329 said:
Wow. This is a tough one. I am not about to tell someone whether or not they should have children, as I understand that biological need very well. I’m not even sure exactly how anti-TNF drugs work, just that they do (sometimes). So in order to better answer this question for you, I contacted my guru of all things physiological, my Dad. He has a Ph.D. in Neuro Physiology and taught in the medical school at Ohio State University for 30 years. His answer mirrored my own gut reaction, which is that it is probably a really bad idea to get pregnant while on anti-TNF meds. Now I realize that it is not a scientific answer, but he strongly recommended doing a whole lot of research and talking with your Rheumy, your fertility doc, and a genetic counselor before you start the anti-TNF’s.
Having said all that, I have to answer with the rest of my gut reaction, which is: Had I known when I was having children that I would develop PsA, I’m not sure I would have made the same choice as I did. Knowing that 50% of my kids’ dna comes from me, and knowing that PsA is such a difficult and painful condition, I don’t think I would have decided to have children at all. My oldest son who is now 17 has shown no signs of developing psoriasis or PsA. My youngest who is 15 has psoriasis on his scalp. Not very long ago, after a particularly brutal bout of nausea/vomiting/misery from my biologic, my son snuggled up with me and asked me, “Mom, do you think I’m going to get what you have?” That was one of the most painful conversations I have ever had to have. All I could tell him was that I hoped and prayed that he didn’t, but if he did, we would deal with it together.
I don’t mean (at all) to be negative Nellie and I’m really glad you are asking these questions on this board where there are a whole lot of people who are smarter than me to answer for you. All I can talk about is the decisions that I’ve made, and whether or not, in hindsight, I would have made the same ones. My kids are an incredible gift, and I’m glad that I have them. But knowing that they may develop PsA, and that it will be entirely my fault if they do adds an additional layer of guilt and fear that most people don’t have to think about.
I don't have children and have never wanted them ..... the mothering gene passed me by ......... so I don't have the wisdom of experience to impart but something Michael in Vermont says is absolutely right, the next generations will have even more PsA treatment options than we have now or there have been in the past.
My brother (who doesn't have psoriasis or PsA but does have other autoimmune stuff) is now worried about his young son who has just been diagnosed with eczema (and we all know how often psoriasis is misdiagnosed at the beginning!!!) ...... and I had to remind him that anything which may/may not develop for his son in the future will no doubt have a much better outlook than exists even with todays anti-TNF's.
When I was first diagnosed I was telling my godmother, who is a retired GP, and her immediate reactions was "this has happened to you in the right century, there are now so many more drugs available than my patients ever had". In fact I spoke with her only last week and was telling her about this board and she told me that some of the best medical developments have come about through patient groups.
My understanding of many of the drugs used in our treatments is that they are teratogens .... which means they can interfere with the development of a foetus causing major congential malformations. And it can take many months after stopping taking them before they are sufficiently out of your system to remove this risk. It's a tough decision whether to try for a baby once a safe period of time has passed ..... personally I probably wouldn't because anti-TNF's haven't been around long enough for any longer term complications to be known.
My thoughts are with all of you who have these tough decisions to face and/or worries about children you already have. x
My grandmother was diagnosed with rheumatoid arthritis, which I have tested negative for. I am the only lucky person in the family other than her to have an autoimmune problem. I’m hoping I haven’t passed this on to my daughter. My plans have been to try for a boy, have my tubes tied and start treatment for my PsA. In light of some new fertility issues (my husbands) we may not be able to get pregnant again and my decision will be made for me at that point. It’s just such an emotional roller coaster for me right now. I’m glad to have this board to have others like me share your experiences. Thanks so much