Ulcerative colitis meds and fertility

[Shanticaile]

Hi all, I was diagnosed with UC over a year ago. All meds I have tried so far have failed and am currently in the fifth month of a flare up. Am exhausted.
I know this site is not a substitute for professional medical advice but I always get such solid advice and warmth when I ask for help.

I'm not currently trying to conceive but I will be in the future.
The next medications being offered to me are Tofacitinib or Infliximab.
Does anyone have any experience of these drugs affecting fertility? I understand that I can't take them during pregnancy.

Thank you in advance

I don't know how much help it is as you're ttc and this is about my DS but anyhow. He was dx jan 2020 with pancolitis (UC of entire bowl). No meds worked. July '21 he started adalimumab - it's put him in remission and he's got his life back. It's been a wonder drug for him. He's also on mezavant and 75mg azathioprine - he was on a larger dose of that but it depressed him bone marrow too much so the dose was lowered. Good luck.

So glad to hear your son is in remission @urrrgh46 Thank you.

I got pregnant straight after my UC diagnosis. I was on (and still use for flare ups), Octasa and Pentasa. Before that we were trying for years and had 3 miscarriages, so for me didn’t affect my fertility at all - the opposite! Also had a flare up in pregnancy and breastfeeding and used both tablets with my consultant’s blessing.

@Shanticaile thanks - he was 17 at dx and then the pandemic hit so it has been a rough couple of years for him. But he's really well now. The biologic drugs do seem to work but when you're ttc I can understand that you need all the info you can get. Really hope you get into remission soon and get your baby too! X

Hi @Qwill thank you for that! I'm heartened to hear all went well for you and congratulations. Octasa and Pentasa are two that I couldn't tolerate, then on to steroids which were dismal, but it's really great to know that there are so many options.

@urrrgh46 You're so sweet. You see this is what I mean about the advice and warmth from this community.

I've no advice on the drugs but we have for my family member found sticking to a really strict low FODMAP diet really helps reduce flare ups.

We've gone from having 2 x major flare ups a year (anywhere between 2 to 5 months) to having a couple of small flare ups (a few days/week). As soon as the warning signs start we cut out all onion/garlic/salad/mushrooms/peas/beans/gluten dairy etc coupled with the pentasa foam and it seems to stop it in its tracks for now.

It does involve eating very plain and easy digestible diet for a bit sadly. It was our last shot before trying the serious immunosuppressives and thankfully for us it worked.

Thank you

No idea about meds with ttc or preg but I've found that Pentasa suppositories are more effective than the granules when a flare up is starting. Prednisone is the only med that has helped me in a major flare up.

Thank you @20DigitCombination unfortunately the Pentasa didn't work for me and the Prednisone got me in a right state. My IBD team has recommended I opt for Infliximab infusions, after I raised fertility issues. Am nervous to begin, but also so tired of feeling like this I'll give it a shot. Happy to update this thread with progress if it's helpful to anyone.

Sorry that you’re suffering OP.

My first ever flare lasted two years but I’m one of the lucky ones for whom Azathioprine worked really well one I was put on it (having not got on with 5-ASA and unmanageable side effects on Pred).

I know that Azathioprine can be continued in pregnancy but as I’d been in remission 3 years at the point of TTC I chose to come off the immunosuppressants. I’ve been incredibly lucky and that remission continued another 7 years without medication!

I’m afraid I haven’t got any helpful info re the biologics as they’re not a treatment I’ve been offered yet, not really I just wanted to offer some solidarity. This disease is literally and metaphorically a PITA!

I have a male family member on biologics, so less relevant to you as a woman. Sometimes they do give other medications to support it. My family member was given methotrexate to take for a few months and advised that he mustn't get anyone pregnant for at least three months after stopping that medication. Your doctor should be able to advise.

I've never heard anything about Infliximab impacting fertility but you definitely can't get pregnant or breastfeed if you are on tofacitinib.

Tofac was the last medicine I could try but had to wait until I had my baby to start it.

The CCUK website is really good for info on this and there's is also a really active private Facebook group.

@INeedNewShoes the solidarity means a lot! Thank you.
Great to know you’ve been in remission for so long, gives me great hope. As currently the flare up feels like it’ll never end. I’ve just had my breakfast and praying I will make it to work before I need the loo🙄

@WildCoasts thank you, that sounds like exactly the treatment plan that the hospital has for me. I hope that this person is well and in remission now.

@Amichelle84 Thank you, yes I’ve heard same. Tofa was originally the treatment suggested to me but when I brought up my fertility concerns, the plan is now Infliximab.

That starts next Monday. I’ve never felt so crap so am determined to make it work. Thank you everyone X

Sending lots of luck to you for the flat and hopefully starting a family, I know how hard it is.

I was in the same position 5 years ago and put on infliximab, worked for a year and a half, then vedo.

Took me 3 years to get pregnant (not necessarily UC related). Started flaring 3 months in and 2 years and 2 babies later I was still flaring. Had surgery 6 weeks ago and feel great.

Leaving the hospital after surgery we realised we achieved our goal that we wanted 5 years ago, to have a family and get me better. You don't realise it when you're feeling like crap etc but hopefully one day you will look back and think YES! I did it!

I'm currently ttc and take ifliximab. I am struggling with infertility but related to my age, not the medication.
Ifliximab itself shouldn't make you infertile and can be taken throughout pregnancy, however they try to not give it where possible in the 3rd trimester as it could cross the placenta. If you do have it throughout you just need to be more careful with baby when born... no visits from sick ppl, no kissing from ppl other than parents (which I would expect in any case tbh), etc.
One thing you may find causes issues is the malabsorption from colitis. This will affect fertility unfortunately so you will have to work hard to combat this. I suspect this is also part of my issue.
One good thing about taking biologics is that you will be so closely monitored with blood tests that they will pick up on it early.
Do you have a specialist consultant and nurse team? Is not get yourself referred now. My consultant works with our fertility consultant and my specialist nurses went through all this with me before we were ttc and currently work with me through the process.
Top and bottom is - dont worry about it and you are less likely to get be fertile if you dont get the disease under control. Taking ifliximab is the best thing I've done for my colitis. I spent years in a constant flare and writhing 4 weeks of starting the treatment I was almost in remission. 🙂🙃🙂
Good luck.

This is great news & thank you so much. Over the last fortnight it seems I’ve gotten worse every day so reading about everyone’s mostly positive experience is heartening. ❤️

@PlntLady yes, I’m very lucky in that I have a wonderful IBD nurse. All of your information is so useful, thank you X
have you experienced side effects from the infliximab?

I have Crohn’s and have been on infliximab, Humira, methotrexate and now on Vedolizumab.

Medication plus surgeries did leave me completely infertile and DH and I adopted our wonderful LO.

Some medications (methotrexate for one), you have to be on contraception for because of the risks to the foetus. Always, always speak to your consultant before you start trying so they can give you the best advice. For me, it was very much a risk of death for me or baby which we weren’t prepared to take. However, not every case will be like that and I know there are people on medications that have had successful pregnancies. It all depends on the severity of your IBD.

No side effects from the ifliximab. At first they give it with some sort of antihistamine which makes you drowsy, but once they establish you dont have a reaction to the drug they stop this. This made me very tired. The treatment alone use to make me a little tired but now I'm fine and just get on with my day after. I've been on it a year an would say the last few months I feel good to go about my day after. I know a few ppl on the drug and non of them have side effects anymore.
One thing I will say - I missed a treatment once due to another unrelated medical issue and it took about 4 months combining it with other low dose drugs to get me right again, so if you get pregnant be prepared that likely you may need to continue the treatment throughout pregnancy.