Guest Post: Hyperemesis Gravidarum Across the Pond

I’m pleased to bring you a guest post from Amanda, a UK hyperemesis gravidarum survivor and a fellow mommy blogger.  Amanda suffered from undiagnosed Hyperemesis Gravidarum during her first pregnancy in 2011, and had to fight until 21 weeks to get treatment for it. This, alongside other complications, has left her and her whole family terrified of another pregnancy, despite the desire for a larger family. Her experience has made her passionate about raising awareness of HG and she writes about it regularly on her own blog, The Family Patch, as well as supporting the work of Pregnancy Sickness Support, the UK’s only national charity dedicated to raising awareness of Hyperemesis Gravidarum.

 She is also currently writing a book on Hyperemesis, based heavily on research and the personal accounts of women who have suffered from HG in the UK.

With the recent news about the Duchess of Cambridge, Kate Middleton, being diagnosed with and treated for Hyperemesis Gravidarum, the condition seems to have received a much needed boost of media coverage.

And so many of us in the HG community have been wondering what treatment she is getting, which may be easier for us in the UK than those of you in the US, as our healthcare systems differ in some rather large ways when it comes to this. Something I know from experience…

During my own pregnancy the majority of the information I found was from the US and some of it just didn’t relate to my experience over here. And yet, it was a US blogger (the wonderful owner of this blog) who listened to my plea when at 20 weeks I was still being refused treatment and then told me to get right back to the doctors and get the medication I needed.

Despite the differences in our healthcare systems, the experience of Hyperemesis Gravidarum is the same no matter where you are in the world. We all feel for poor Kate, just as we all feel compassion and empathy for any single woman we hear of who is facing the hell of a Hyperemesis pregnancy. It is a universal thing, and something that brings us all together as a community.

And yet, without an understanding of the ways in which our treatment options differ, it can be challenging to offer support and share the information and knowledge we may have. So let’s look at some of the major differences…

First of all, healthcare is free in the UK to anyone and everyone. The National Health Service (NHS) offers the opportunity to see a doctor (General Practitioner or GP) or midwife whenever you need it, free of charge.

This is something we often do not appreciate enough. We are very lucky in this respect, but it does sometimes have its downsides, including the fact that you can often see a different GP every time you visit your GP surgery (what we call the doctor’s office). Within the first 20 weeks of my pregnancy I saw five different GPs.

There are, of course, some real perks to free healthcare, including free prescriptions during pregnancy. Which means once prescribed anti-emetics, there is no paying for them. But it does mean that some women struggle to get prescriptions for the more expensive medications, if the GP decides a cheaper drug is a better option (even if this has proven to be less effective).

And then there is the fact that IV hydration at home is just not a possibility here in the UK. I have heard of a couple of women with severe cases of HG being treated at home, but generally it is not an option. The NHS just does not have the means to do this. So any woman needing IV hydration must travel to her nearest hospital with with the facility to do this and, usually, be admitted for an overnight stay. Although, having said this, some hospitals are starting to offer day-admissions.

We also do not have Zofran pumps here in the UK, which I know are relatively common in the US. In fact, we even have a different name for Zofran – here it is called Ondansetron. It took me a long time to make that connection when switching between US and UK support groups!

I’m sure there are other differences I may have missed, but these seem like the big ones. I hope it has helped shed some light on the way HG is treated in the UK, and the fact that despite these differences, often it is the struggle to get recognition of the severity of our sickness and the treatment we need that is universal and gives us far more in common than separates us.

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How much does Zofran cost?

medications-cure-tablets-pharmacy

In preparation for my upcoming fight with hyperemesis gravidarum, I went ahead and had my full Zofran script filled.  I dropped it off yesterday and then picked it up (part of it anyway) today.  No, I’m not pregnant yet.  We are going overseas for a couple of weeks, though, and I’m stealing the motto from the Boy Scouts.  I’m going prepared.  I wanted a few days worth of Zofran to pack into my travel kit, which basically will contain all of my first level HG defense items.  Unisom, PrimaBella band, B6, pepcid, ginger, etc.

Yes.  I will be a walking pharmacy.

So at any rate, while I was getting the script filled, I asked the pharmacists assistant if she could tell me how much this would have cost without insurance.  I was morbidly curious.

She tapped a bit at her computer.  Tapped a bit more.  Got a weird look on her face and tapped a few more times.

“Ma’am,” she said, “It’s just over $2000.”

I said, “Oh, s***.”

And the promptly apologized for cursing.  She explained that she had been pretty surprised when I handed her the script.  Usually doctors only write for 8 pills at a time or 8 pills per month.  That’s all most insurance is willing to cover.

Imagine?  Having hyperemesis gravidarum and only being allowed 8 pills at a time?  That’s 2 days.  Not enough to do diddly for you.  What a cruel, cruel joke.  The sad part is, I know women in the online community who deal with this.  Regularly.

$2000.  For a 25 day supply.  And that’s the generic.  The full prescription is for 100 pills of 8mg ODT Zofran (aka Ondansetron).  You do the math on this one. Thank God for our medical insurance.

In only slightly related news, I received more shocking information this week.  Shocking in a good way.  My sublingual B6 arrived!  The local health food store was finally able to find it.  They ordered it, and I picked it up last night.  Success!  It, thankfully, did not cost $2000.

B6 for Hyperemesis Gravidarum

The B6/Unisom combo (home-made diclectin) will be my very first line of defense against hyperemesis gravidarum in addition to the Zofran/Ondansetron.  I know that sublingual B6 exists.  I’ve heard it talked about on the helpher forums, I have imaginary internet friends who have taken it.  Why then, is it so hard to get locally?

I started by trying to get it from from my local big chain pharmacy.  As I expected, no luck.  The pharmacist’s assistant told me that all the vitamins are over on the shelves, which they’re not since I get prescription folic acid and I know for a fact that prenatals and other vitamins are available via prescription only.  Also, there was no sublingual B6 there since I already looked.  The pharmacist looked at me like I had three heads and proceeded to grill me about why I can’t just take a pill.  When I elaborated further, he suggested… wait for it… ginger.

Yes, Genius.  I just handed you a prescription for a month’s supply of Zofran, which is around $35 for the generic PER PILL (thank GOD for insurance).  My prescription is for 4 pills per day for 30 days.  Do you really, honestly think we (insurance and I) would be shelling out $4200 a month if ginger was likely to be a viable option?  All I wanted was some info on whether or not sublingual B6 could be ordered.  That’s.  It.

Clearly the chain store can’t help me with this.  Next stop, my local health food store.

My local health food store has a huge selection of vitamins.  It’s where I generally go to get all of my vitamins.  In this case, though, they’re coming up short.  They’ve got various sublingual B complexes, which on the surface sound great!  B12, B6, Folic Acid all in one little tab is a great idea.  Until I flip over the bottle and read the content.  It’s all tiny amounts of B6.  If I’m looking at taking 100-15o mg/day, 5 mg isn’t going to get me very far.

They looked into ordering it for me, but this has turned into a major ordeal.  I checked in a week after they were supposed to have ordered it, and they hadn’t ordered it.  They placed the order right then, and a few days later, they called me saying it had come in.  When I got it home and looked a little closer, it turns out it wasn’t sublingual at all, just plain Coenzymated B6. So I took it back.

When they started looking into it, their book appeared to be incorrect.  They’d ordered what appeared to be the right thing.  The numbers matched.  It’s just that the bottle didn’t specify that it was sublingual.  They said they would call the company for more info and then call me back.

A week went by.

I ran out of my multivitamin (New Chapter Every Woman’s One Daily – wonderful and non-puke inducing, expensive but worth it), so while I was in picking up a new bottle, I dropped by the supplement counter to see if they’d heard back on whether or not I could take the B6 sublingually.  After much standing around and waiting, it turned out that they hadn’t called yet.

He did call them the next day and left me a voice message saying that the 100 mg, which I bought, is not sublingual but the 25 mg is sublingual and would I like to go ahead and order that.

I’ve tried to call them several times this week and hit voicemail every time.

At this point, my frustration level is pretty high.  Why is it so hard to get sublingual B6?  I’d like to get it locally so I don’t have to fool with shipping, but this is just getting ridiculous.

I just want my vitamins already.

Update:  It took a few weeks, but my local health food store finally came through for me!  Yippee!

Disclaimer: I received no compensation for the products I mentioned in this post. These are simply what worked for me. Links are not affiliate links.