I'm on domperidone for gastroparesis(but that doesn't help the nausea). I used to take prochloroperazine but it stopped working so have been swapped to Cyclizine which is completely useless. (I take peppermint tea+ginger tea when I can but it is of little use in extreme cases). A friend suggested Ondansetron - has anyone used this+what did you think about it? (I'm on warfarin+ lots of other meds so homeopathic remedies aren't always an option,it needs to be medically proven+safe). Any advice would be gratefully received. Thanks!
What do you take for extreme nausea?: I'm on... - LUPUS UK
Hi there, don’t know personally but my Dad has been taking Ondansetron for well over a year so I asked him. Like you Cyclazine was useless so he was moved to Ondansetron instead, he said tbh it didn’t do much either and he is still struggling. Sorry. That said everyone is different so it may be worth giving it a go. Hope you get on ok. Take care.
Thank you for your help Froggie70. My GP says it's really only for chemotherapy/radiotherapy or post-op nausea so she is unsure about prescribing it for me. Thankfully she's going to look into it further and I'm hoping I can at least try it. Did your Dad get it for any of the above reasons or was it lupus-related or just something else entirely? I really feel for your Dad as I completely understand how utterly debilitating it is and I hope he improves. Thanks again.
Hi. He has undiagnosed severe nausea. Been through loads of tests (stomach, autonomic nervous system although not gastro paresis). Has been like this for over 10 years although it is getting worse and more frequent. Thank you for your good wishes, I’ll certainly pass this on. I hope you feel better soon and take care 🤗
Yes. I have APS and gastroparesis.
This medicine helps me. ( 8 mg )
Hoping INR is in the correct target range. ( my gastroparesis comes back if I’m too low.)
Thank you very much KellyinTexas. It's good to know that it works for you.I'm just praying that the GP will prescribe it as she's reluctant and says it's only for chemo/radiotherapy/post-op nausea.
My INR is all over the place constantly (and I've had APS for 16 years!).
That’s because it’s more “brain centered” instead of “gut centered” according to my doctors.
But we can sometimes go into gastroparesis because our brains ( or neuronal cells that are differentiated to communicated to gut- ie- cells that do not always connect effectively with our guts.
This can be from small nerve damage from clotting, in the case of APS ( micro clotting to bowels- ) caused ileus after ileus. “Hyper profusion to bowels” was determined to be causing the problems.
I’m on methscopolomine bromide - and it seems to help. ( strangely it can cause gastroparesis in some cases ..)
The INR game is always a crazy one. Nothing is very stable is it?
Hoping you have a good team- this is just my story with bowels- I was found to have APS after surgeries-, etc. I started developing larger DVT’s so panel was run.
Hoping you are better …. So sorry for the terrible time you are having.
Last year I was on Myclophenate Mofetil 2 mgm daily,as well as numerous medications.I felt nauseous most of the time.
Iwas prescribed Prochloperazine.the sort that go under the tongue
It sort of worked,butI lived n Cornflakes and muller rice,that was so thatI could take my medication. my bloods were ok consultant was happy.
I was prescribed Metachlorpramide ( I think ) I was violently sick,so itwas back to the prochloperazine.
To cut a long story short I had to come off. Myclophenate for a few weeks.
I ended up being on Myclophenate 1.5 daily.
I don’t suffer from nausea any more.my appetite is very poor still.i don’t l enjoy eating.
I keep taking all my medication,asimscared what will happen if I stop taking it.
PLEASE NOTE I’m not a Dr,I’m not telling you what to do for your health.
Perhaps you could ask GP for a different anti emetic perhaps you could let us know if you find a solution.
Thank you very much for your reply Oshgosh. It's so debilitating isn't it? I don't think GPs appreciate how much it impacts on everyday life. I'm hoping the GP will prescribe Ondansetron next and I'll let you know if it helps at all as I really feel for you and can completely relate to your situation. I guess you've tried peppermint tea and or ginger tea (I hate ginger but the tea is actually ok!)? You even get ginger lozenges from the chemist but I haven't tried them. I'm now wearing acupressure wristbands to see if they will help but I'm not sure yet. Anything is worth a go as long as it doesn't interact with any of your other meds and your GP/Pharmacist says it's ok.
Thanks for your reply.!I’ve lost over 3 stone in 2 years because of the nausea/appetite loss.The consultants like the weight loss as it corresponds with what they say.to do. But it hasn’t improved my lung disease .1 positive was buying new clothes. Husband said just buy some” clothes that fit. So I bought 4 dresses . I’ve gone from an 18 to a 14. I try lemonadeand proper ginger ale sometimes. It helps a bit. I’m hope you find something that helps you feel more comfortable
I feel sorry for my husband/ family . The odd occasion we go out , I’m pushing a starter round the plate, while they are eating 3 courses .
I get ondansetron for nausea of gastroparesis but no longer need it apart from when I have Iloprost infusions. Sticking to homemade clear soups, soya milkshakes made with fortified Ensure plus twice a daily and making sure I empty bowels daily with Linaclotide makes a massive difference. I refuse medications like Metoclopramide because I have read some of the main side effects and they scare me.
I’m still losing some weight each week and mostly have little appetite. But as long as I don’t actually feel sick or vomit - I save ondansetron for my Iloprost weeks and in case things get really bad again. I’ve learnt that it’s the wholesome fibrous, indigestible diet which caused my gastroparesis to become so severe. I know most with gp associate this condition with nausea and vomiting undigested food.
But for me personally I’ve learnt that constipation from dysmotility of my overlap CTD is my biggest enemy and I have to do whatever it takes to force bowel transit or else the undigested food builds up again and the pain, nausea and rotten taste comes back and I may well start throwing up undigested food again. Not a risk I can take.
I’m on max dose of Mycophenolate and for me I know it isn’t this as I was much sicker before I restarted it. The nausea didn’t reoccur with the raise in dose either.
Thank you very much for your useful advice 282523. Any ideas are gratefully received as I've reached breaking point. I'm just hoping the GP will prescibe Ondansetron as she's reluctant as it's supposed to be only for chemo/radio/post-op nausea.
OMG that’s what my favourite GP told me too! It’s such a terrible thing to say to us with our much rarer diseases. It made me feel so small and unimportant - particularly as she cited cost as one of the reasons. I mean severe nausea is severe nausea and the cause should be irrelevant.
I told her I was soon to have gastric emptying scan for gp but she seemed unmoved. I later told the director of primary care who is also a GP in a neighbouring practice and he sounded shocked. I think it must have got back to her because she hasn’t spoken to me since and no one from my practice has weighed me or showed concern even though my GES showed severe delayed stomach emptying of 170 minutes and paramedics had been called before Christmas when I was vomiting blood with undigested food from 2 days earlier.
My rheumatologist rolled her eyes with exasperation and wrote to GPs telling them to prescribe me Ondastatron immediately so they have - minimal dose though and not on my repeats 🙄
I don’t really find ondansetron that effective. I find the old school ones like Compazine and Prochlorperazine work better for me. Sorry PC stopped working for you.
In severe cases of gastroparesis they can try erythromycin. Metaclopramide is also used but has some side effects when used long term. Steroids especially dexamethasone works well for severe nausea. I’ve also heard of people using scopolamine patches. These make me ill though. Peppermint capsules really get me going make me more nauseous.
Hope this helps. Sending hugs. ❤️xx
Thank you so much for your useful advice Jmiller623, I really appreciate it! I've made a note of your suggestions and if the GP refuses to prescribe Ondansetron I'll ask about those other things. I'm glad prochlorperazine works for you. Thanks again and hugs back xx
Interesting about steroids as I get two depomedrome IM a year and afterwards my nausea and gastroparesis symptoms always improve for a few weeks at least. Same when I occasionally get erythromycin for other infections.
Please be careful. Ondansetron is a "three star" alert drug and most GPs can't prescribe it now. The reason for this is that it can cause Long QT syndrome which is basically an arrhythmia that can be fatal in some cases. If you are also taking Hydroxychloroquine then taking ondansetron on top of that can be dangerous. I can empathise with you because I had severe gasteroparesis for years. It was caused by POTs syndrome and lupus. I constantly looked 8 months pregnant and was often admitted for dehydration.
I tried all anti emetics but had reactions to all of them. I eat Tesco ginger nut biscuits for nausea. I've found that they are the best. I also have their lemonade but flat.
I switched to a low FODMAP diet and haven't had a gasteroparesis since and I also saw a dietician who gave me lots advice on a lowfodmap diet and a gasteroparesis diet.
It flares up a tiny bit but nothing compared to how it used to.
I really feel for you. I found mine was often worse in the heat.
Thank you very much for your advice and warnings happytulip. It really is a minefield when there are so many serious side-effects plus interactions with other drugs. Maybe instead of the GP, I will ask my lupus consultant as the GP wouldn't even give me a gastro referral. You're so right about the heat. I've been suffering even more this past week or so with the extreme temperatures. I'm not a big fan of ginger but forced myself to try ginger tea as I was so desperate and it wasn't as gingery as I expected so maybe I could try the ginger nut biscuits too, thank you for that. I've tried flat lemonade before but unfortunately it doesn't help me.
I'm glad to hear yours is much more well-controlled now.
Cyclizine Intramuscularly for me, have been getting from surgery every few days recently, but you could always try Metaclopramide as well x
Thank you lottagelady. I didn't know you could get it intramuscularly. I will see what my GP says about that.
I was very unwell awaiting urgent surgery, which hasn't worked, but that's a different story, lol. But my surgery is one of the best in the UK and I was very lucky to have them x
There is nothing worse than nausea I find. I find ginger helps and when I’m bad with nausea I force myself to eat ginger nut biscuits and ginger sweets eg Gin Gins chewy ginger candy which really do help take the edge off the nausea. I hope you get some relief soon. 🙏🏻 hugs 🤗x
Thank you so much Spotty-ewe! I'm not the biggest fan of ginger but do try to drink ginger tea. I'll definitely try the biscuits and those sweeties you suggest, thanks again x
Can you tolerate metaclopramide because that is actually the treatment for a gasteroparesis, it's a medication that encourages gastric emptying which is the cause of your nausea?I can't tolerate it long term because it makes me dizzy but it I can have it at night and the gasteroparesis will clear.
Erythromycin is also a treatment. It's better to treat the cause and not just the symptoms in my view. Have you seen a gastro consultant or had gastro tests to confirm dysmobility? It usually involves eating radioactive scrambled eggs x
I had severe feelings of nausea. Couldn’t keep anything down. Ondanestron was brilliant. Nothing else touched me but a nurse did tell me it was prescribed for chemo patients. Tbh i didn’t
care about that I was so desperate as I had lost 20kgs of weight and just wanted to feel
better again. Whether yr GP will prescribe long term is a different matter. Best wishes
Hi. Haven't read all the replies to your query from 5 months ago so maybe you're sorted by now.Ondansetron is mainly used to counter nausea and sickness caused by chemotherapy - and I know!
I have NET of Pancreatic origin with metastases to Liver. I was put on a 6 month course of chemotherapy pills taken at home to a strict schedule. I was given Ondansetron to take one hour before one of the pills. I sailed through the first month, but the Ondansetron was omitted for the second month; about 3 to 4 hours after taking the this pill, I was violently sick, same the next day, on the third day I managed to get Ondansetron from my GP and wasn't sick again.
What I'm getting round to is that I've started feeling badly nauseous and have tried Ondansetron to absolutely no avail. So it must depend on what's causing the nausea!
The GP has prescribed Cyclizine which does seem to be helping, but only for about 4 or 5 hours.
Some information, I guess. Not a lot of real help, though.