Hi everyone! After joining a couple years ago, I still have yet to introduce myself! I’m Liz, I’m 34, and was diagnosed about 5 years ago in the US. Directly after my diagnosis (small duct PSC) we moved to Germany. Urso is the recommended treatment here. I have not tried anything else. I don’t have any symptoms but my MRT has shown a little narrowing. Not so thrilled with that, but continue to stay positive. I also have considered a trial of Vanco, since it is the only way to get it here in Germany.
Anyway! I’m pregnant. This is my second pregnancy. Unfortunately I had a miscarriage at 11+4 in May of this year. My new doctor is suggesting I pause Urso for the first trimester. She says there is no evidence it is harmful, but in her opinion, most medications can be toxic, especially in the first trimester, to the baby.
I wanted to see if anyone else could share their pregnancy stories and treatment. I send everyone lots of love. Let’s be kind to ourselves.
I’m living in Italy but I’m German and maybe I can give you some advice.
(If you want we can comunicate personally. Is German language an option for you?)
There ARE (liver) specialists which are open for Vanco.
First problem: Profond searching the internet / forum is necessary to find them.
Your insurance is a public one (“Krankenkasse”)?
If yes, second problem: Is the doctor willing to accept you as a
“non private” patient and give you “non private” prescriptions?
Because his problem is that his practice has a (fixed) budget defined by the public insurance.
If you exceed it, there will be “questioning” …
And Vanco is extremely expensive in Germany.
In Italy it costs only 1/3 ! Unfortunately you cannot get a prescription for
the Italian brand.
If you will/must pay Vanco by your own, you should find a way
to buy it in Italy. The only brand there is LEVOVANOX 250 with 4 capsules (= 1000 mg)
which cost 18,19 EUR. I know a farmacy which would sell it for 15 EUR.
Later, now I don’t have time, I will write more, my “PSC story” and the effect of
Vanco, Urso, Mesalazin, Bezafibrato and … Plantago ovata (!)
If you have IBD you should try at any case try the Plantago seeds:
Do not harm (even if pregnant), in many cases it helps to normalize
intestine problems and in my case even the liver values (-> leacky gut theory).
And it’s a very economic bargin (ad es. Amazon 1 kg for 10 EUR, and you use ca. 10-15 g/day).
Hi Liz, congratulations on your pregnancy and I hope you are both doing well? I remained on Urso all throughout my pregnancy - was told it was ok by my Gastro/Hepatologist as it was classed as a pregnancy Category B drug and from what he’d seen with other patients. However, this was back in 2014/15 and in Australia - things may have changed since then and I’m sure your specialist would know best taking into account the benefits and risks applicable to your situation. I also take Colazide for my UC but have a foggy recollection we put that on hold while breastfeeding which for me my specialist only allowed for 6 weeks due to the extra toll. My daughter will be 9 next March and is fantastic - super clever, her negotiating skills freak me out … and she had to be born at 34w4d (due to me becoming ill).
I wish you all the best and hope you have a very smooth and uneventful pregnancy! Any questions feel free to reach out.