Glaucoma and pregnancy

[Mimesy]

Hello, I have been searching for other people who are/have been pregnant and have glaucoma.

I am 33 years old and I have glaucoma. I have been on latanoprost drops for 2 years and they recently stopped working for me and I started to lose some vision, so I was put on timolol drops as well, which have helped stabilise my pressures now.

I would like to start a family soon but I'm worried about what drops are ok to be on whilst pregnant. The doctors don't seem to be sure, and I don't want to take a risk. The doctors have suggested I have trabeculectomy surgery before I get pregnant, which I am considering, but I'm scared about the surgery going wrong or having side effects.

I guess my questions are:

1. What drops are safe to be on whilst pregnant? I have heard brimonidine is ok but apparently it's not ok for the third trimester.

2. I'd like to know if anyone has had trabeculotomy surgery and did it all go ok?

Also, any other advice/suggestions/comments would be much appreciated

Thank you!

[Cornwalleyes]

Hi

I’m a lot older than you, but I’ve had trabulectomys in both eyes and both surgery’s went well, no issues and my pressures have been fine since then, with no more sight deterioration. Apart from the post op eye drops which tapered down for three months I haven’t used any drops since.

[Mimesy in reply to Cornwalleyes]

Thank you, that's reassuring to know!

[Sorshup]

You have been diagnosed and are under medical treatment much earlier than most - as I was, too. I had a trab at age 44, a success and trouble-free. for a long time. The efficacy of meds declines, and surgery often needs to be repeated. In the past 4 years I have had six procedures, trab, trab revision, bleb needlings, stents. These procedures, despite being helpful to the control of IOP, can cause further damage to eyes that have been affected by glaucoma for many years.. So at your young age surgery makes sense. There is very little experience world-wide on topical eye meds and pregnancy; check on't net yourself, and no doc will stick the neck out and reassure you for defensive reasons!

[Mimesy in reply to Sorshup]

Thank you very much for your message. It's helpful to hear other peoples perspectives who have been on a similar journey. I think it's a case of doing as much research as possible, but I think it sounds like the trabulectomy surgery might be the best way to go for me.

Thanks again!

[Trish_GlaucomaUK Partner]

Hello Mimesy,

We are reviewing our booklet of glaucoma and pregnancy so it is not available at the moment.

I have found this article from the Glaucoma Foundation which you may find helpful.

glaucoma.org/articles/glauc...

[Mimesy in reply to Trish_GlaucomaUK]

Thank you so much! This is really helpful. I would really like to read your booklet about glaucoma and pregnancy once it's out again.

[Trish_GlaucomaUK Partner]

We do not have a date as to when it will available, but you keep checking our website every so many weeks.

[ToeJam]

Hi Mimsey.

I have congenital glaucoma. At 31 we decided to start our family. I was on lantrapost and betoptic at the time. I have no sight in my left eye and the pressure in my right was consistently low 20 . I spoke with my consultant who advised coming off both sets of drops for 6 weeks to see what my pressure would do.

It doubled to over 40!

Two weeks later I had a deep scelerectomy, not sure if it less invasive as a trabulectomy or if its the same thing.

My pressure has been in mid to low teens since 2010. I am not on any eye drops. My vision was back to normal after a couple of weeks but it was stressful having limited vision.

My advice is to discuss with your consultant furst as they are the best ones to guide you.

I hope this helps x

[MEE16]

Hi Mimesy,

I’m similar to you as I’m 34 and was diagnosed with glaucoma 2 years ago and wanting to have a family. I have gone down the trab route as we’re told no eye drops were guaranteed safe in pregnancy. As you can imagine, it’s very hard for consultants to 100% say this as they aren’t going to test it on pregnant women. I have had trabs in both eyes due to how quick I lost vision in my right eye and didn’t want to risk it waiting and seeing what might happen. I’ve been told pressures can rise or fall during pregnancy and everyone is different so close monitoring is key.

Prior to my trabs I had SLT but it didn’t work for me. My trabs are working well and pressures are stable. I have recently had to have needling done in one eye however all ok and family planning is back as a priority.

There’s a lot to take in and I found some consultants were not sympathetic to wanting to start a family and the anxiety and risks involved however my consultant now is amazing and I’m so pleased I’ve had the trabs so I can hopefully have a family.

Feel free to ask me any questions Best of luck!

[Mimesy in reply to MEE16]

This is so helpful, thank you! And it's nice to hear from someone who is in a very similar situation to me!

I'm now a bit concerned about having the trabeculectomy surgery incase my pressures go too low during pregnancy. It's so confusing. I just don't know what's for the best really. I have been to see a private consultant a couple of times (as well as my NHS appointments) and he has recommended trabeculectomy surgery, but part of me thinks maybe he is suggesting I have it done because I'll be paying him a lot of money for it. Or am I just being cynical!?

[Ingaga]

I had trabulectomy at the age of 28 and it went fine, then I had two pregnancies in my 30s. My doctor told me to stop using latanoprost from the beginning of the pregnancy until I finish with breastfeeding, because it was not good for me and for the baby. Interestingly though, during that whole period my pressure went even lower than while using latanoprost drops. They say it has something to do with the body building more liquids during pregnancy. Of course, after I stopped breastfeeding, I had to go back to the drops as the pressure started rising, and now in my 40s I am also using beta blockers.

So I think in your case I would go for trabulectomy because latanoprost is not advisable while you are pregnant and breastfeeding.

All the best!

[Mimesy in reply to Ingaga]

Thank you so much for your comment! It's really helpful. I have heard that pressures can go lower during pregnancy, so now I'm concerned about my pressures going too low during pregnancy if I have the trabeculectomy surgery...

Hope you don't mind me asking but I thought after having trabeculectomy surgery people usually don't need drops for many years after that?

[Ingaga in reply to Mimesy]

Yes I've heard that too but I think doctors prefer to prescribe drops after to have the IOP under control. I had to use drops after trabeculectomy.

Good point about the pressure going too low after trabeculectomy while being pregnant, maybe you could get a second opinion about that. I have no idea about the IOP being too low, I have only had issues when it was too high.

[Scarletbox]

Hi, I was on Timolol during all 3 pregnancies and was breastfeeding after too. I remember questioning my consultant on the safety of using these drops during the first pregnancy and was assured it was fine. Pressures remained stable and had healthy babies too. 🙏 Good luck with what you decide. x

[sunflowerfield1]

Hi, I don't know how helpful this will be as it was a while ago that you posted.

I have congenital Glaucoma and I am on Lantanaprost and Timolol. When i got pregnant at 29 I was told to come off both eye drops as they didn't know what effect it would have on my baby. My pressures were low in the first trimester, and I was given extra appointments to be monitored, by the second trimester my pressures were higher than they had been in decades and i went back on Timolol. After I had my child tests showed that I had lost aprox 10 % field vision in one eye, but my pressures returned to my normal range.

Also, I had trabeculectomy surgery when i was a child and have always used eye drops since.