Fun with Domperidone (or something)

So, a couple weeks I posted about the Reglan fiasco in terms of trying to find a medication to help with the stomach motility.  I clearly lost that round.  A little over two weeks ago I started taking the domperidone which seemed to have some promise. 

Unfortunately it appears it just took a while to build up to a level of revolt in my bloodstream. 

It started with some random itching last Thursday afternoon, I figured I might be having a reaction to the detergent on the gowns at the radiology place I got the ultrasound at (ultrasound was normal, btw).  So I hopped in the shower when I got home thinking that would be it.

Not so much.  The itching turned into a big hive-y mess where I could barely reach it across my shoulders, neck, etc.  It was just lovely.  I did the usual ‘what am I allergic to’ rundown and the domperidone was the only new variable in the equation.  The detergent got ruled out as the itchies got progressively worse through Monday, when I finally got ahold of my GI’s nurse.  

They suggested that I stop taking it (really? *ahem*), and follow up as planned next week.  They also didn’t suggest anything for next steps, except ‘we like to see how you’re doing on the medication at the next visit’.  Umm…. Newsflash?  I just told you and we’re stopping it.  What’s next on your list without making me wait another week plus?  Yes, I’m not a happy camper about that part.

Back to the digestive enzymes and other supplements for now.  I’ve also found a new chiropractor in the area (well, an hour away) so fingers are crossed that helps things also.  

So, official score = GP meds: 2 – Me: 0

edited to add: Since stopping the domperidone I've noticed that my face is a little thinner and I've lost about five pounds. I believe it was causing a milder allergic reaction the whole time and contributing to swelling in multiple parts of my body.  Ack.

Jen

Medications – Nausea / Vomiting

One of my least favorite aspects of being sick is the all too often encountered duo of nausea and vomiting.  It feels horrible and for me eventually leads to pulled muscles and ER trips for IV fluids and meds.  I spent most of the MLK holiday afternoon a few weeks ago in the ER for this.  I can think of a few places I would have enjoyed more.  

There were two major benefits to my recent trip to the ER and some other good info.  

1. First, it got my stomach calm enough to keep liquids down so I was only there for a couple hours. 
2. Second, and more important in the long term, the ER doc told me about the oral rapid dissolve form of Zofran that is available.  I was intrigued and relieved that there was an alternative to the pills that were clearly not being absorbed properly in my stomach.  I’m happy to report that the dissolving tablets feel like they’re working a little better.
3. Third, more as a point of interest because I didn’t know it exists, the ER doc also told me about a suppository form of Phenergan.  Personally, I’m a little squeamish about this method of delivery, but when the options are go to the ER or find a non-oral route… the decisions sometimes make themselves.

I’ve also found the old standby, ginger ale, to be helpful as a restart fluid.  I’ve been mixing it with juice or Gatorade to create the illusion of a flavor variety.

Oh, shoveling also seems to aggravate this, so mother nature can keep diverting the snow around DC for the rest of the winter. I thought my days of throwing up in bushes were over. ;)  

Jen

Medications - Gastroparesis

A few weeks ago my GI doc did an upper endoscopy to take a look at my stomach and see what was going on.  I had fasted for about 12 hours prior to the test per instructions, but not everything had cleared my stomach.  Hence, my working suspicion of a pseudo diagnosis, Gastroparesis.  The doc sent me home with a prescription for Reglan and a faint hope that it would be helpful.  

Reglan is a prokinetic drug, meaning that it is meant to induce the contraction of the stomach muscles that aren’t working due to nerve damage (I’ll leave the ranting about wanting to know how exactly I acquired stomach nerve damage for another post).

It was definitely short lived.  Within 48 hours of starting Reglan I had started having tremors in my arms and legs and became violently ill.  I believe they call that ‘not tolerating’ the medication.  Sounds much more pleasant in doctor speak.  I was laid up for a week while my system recovered from the reaction. 

To summarize…. Reglan 1, Me 0.

This all occurred right before the Christmas holiday toward the end of December.  My GI then referred me to one of his colleagues in his office who has the ability to prescribe Domperidone which is also a prokinetic.  Domperidone is actually supposed to have fewer side effects; most notably the neurological side effects should be far fewer with it since it does not cross the blood brain barrier. 

The issue is that for whatever reason, the FDA has not approved domperidone for general sale in the US so docs have to jump through hoops and get approval to prescribe this medication, then it has to be purchased from specialized pharmacies.  Oh, since it’s not FDA approved, no insurance company is going to pay for it.  

I've been taking the domperidone for about a week now and I'm not sure whether I think it's doing much in terms of motility.  Whether it's coincidence, placebo effect or just good luck, the nausea has been a little better so I'm not having to pop Zofran a couple times a day.  It hasn't really caused any too bothersome side effects, so I'll take it for a few weeks and see what else it might be capable of.  

What other strategies or medications have you found helpful?

Jen