Domperidone

[hoping]

This SjS just keeps on giving.  Have not only neurological, but digestive, and now urinary system involvement.

Saw PA at GIs office.  She wants me to go on Reglan or Domperidone for gastroparesis.  Stomach is not fully emptying as noted on my upper GI test.  Want to help with gastric motility, but wanting me to get an okay from neuro. on which he'd most prefer.  Told her I'd prefer Domperidone.  She wants to see me back in 2 mo. to review what neuro. said.  I'd prefer just ordering the drug now.  Also wants an EKG, which I recently had one.  All these hoops just to get a med which might help me!

For those of you on Domperidone, does it work?  Side effect profile better than Reglan?  I already get spasmodic muscle jerking from transverse myelitis.  Where do you order it from and how much does it cost?

Karin

[rnathans]

Domperidone is much better than reglan- no nasty side effects. I took it for a number of years but don't need it anymore.You can order it on line from overseas. Do a search for G-Pact- a gasstroparesis support group to find out the website. I don't have it anymore.

I had neuro and bladder symptoms and then developed gastroparesis. Mine became very severe and I was eventually treated with cytoxan which turned things around. If domperidone is not sufficient ( you lose a dangerous amount of weight) then you should consider immune suppression.

[Linda196]

While Domperidone is essentially a well tolerated drug, I would caution everyone that any drug has the potential to cause side effects, and one of the most commonly reported one with this drug is dry mouth.

Because it's meant to speed up the passage of everything in the gastric tract, it's also important to be sure that there is no interference with other medications...especially anything that is absorbed quickly from the stomach, because these drugs may not remain in the stomach long enough to be properly absorbed.

[hoping]

I am on Imuran 150mg and rheumy was hesitant to try any other agent just yet.  I suggested Cytoxan to rheumy but he said if that doesn't work and I have ill effects from it (I imagine cancer) that opens the door to holding him liable.  The threat of lawsuits is just so big I guess.  Neurologist thought any of the other immunosuppressants would be worth trying, but only after having been on Imuran for a good six mo.  I don't really want to wait six mo. but might not have a choice.

I have lost 50lbs. over the last year or so.  Is this from gastroparesis?  No one seems to have an answer for me.  Know that now I am eating smaller amounts because too much causes more reflux.

Thanks Linda.  Really helpful info.  Seems like EVERYTHING causes dry mouth.  Thank God for Evoxac.

Karin

[rnathans]

Now I am not a doctor and everyone is different BUT unless you are quite overweight, 50 pounds is alot to lose and probably is from the gastroparesis. I was told that for major systemic complications like gastroparesis only a strong immunosuppressant like cytoxan will turn the tide ( and you don't stay on it forever).

If you are severely debilitated, becoming underweight or suffering from poor nutrition ( there are blood tests that will show this) I would consider getting a 2nd opinion and/or finding someone who is not afraid to try cytoxan if needed.

I was so sick and had lost 60 pounds and I am very grateful for the treatment I received.

[anita]

Hi Karin,

I have taken Domperidone for many years and find it to be well tolerated.  I get it from Canada Pharmacy.  They have a website (canadapharmacy.com) and phone (800-891-0844).  Not available in the US, but you still need a prescription to obtain it from Canada.  Please note that all Canadian pharmacies outsource to Europe or India for some of their generic medicines.  I personally pay a little more to Canada Pharmacy to obtain their generic vs. one they starting sending from India (Vomistop).  However, you must ask for it, otherwise they will automatically send you the Vomistop from India.  Make sure to take 20-30 minutes before a meal...but ask your doctor (all that prescribe anything) about other medicines that need time to absorb in the stomach.  I will tell you that it typically comes in 100's or 500's.  I always order the 500 and it only lasts about 2 months (but I'm on the highest dose) and runs about $130.

I was a bit surprised the doc didn't order an empty test which measure the percent of food leaving the stomach over 1 1/2 hours.  They put a little radioactive stuff in the scrambled eggs so it shows on the nuclear medicine machine and watch it leave the stomach (taking pictures every minute or so).  Mine was discovered when the GI had me swallow the camera to take pictures of the small intestine...and the camera never left the stomach (took 6 hours of pictures in the stomach...lol).  But he still followed up with the empty test to confirm.

Hopefully someone is treating the reflux with Nexium, Previcid, etc.  If not talk to your GI.   Gastro-paresis interferes with proper digestion and absorption, so it could explain weight loss.  Small frequent meals are better when you have gastroparesis...so is a mechanic soft diet...grinding it all up since the stomach isn't moving like it should.  Ask your GI about diet changes.

Good luck,
Anita

[hoping]

Thanks for all the helpful info.  I am so bloated right now, I look and feel pregnant. 

Will ask about those tests.  And will press for Cytoxan.  This gastroparesis along with the urinary cystits and major neuropathy should warrant its use.

Karin