Advise on medication for GI issues - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Advise on medication for GI issues

Buttsy profile image
26 Replies

Good Morning everyone,

I am currently experiencing a lot of chest discomfort , wind ,etc due to acid reflux , GERDs and dysmotility.

I am currently on Raberprazole 20mg twice a day and I take Gaviscon, but these don’t seem to be elevating my symptoms, the gastroenterologist wrote to my GP and said I could try Esomeprazole ,I go back to see GP on Tuesday so need to decide if I want to try this PPI and change my current prescription.

I would appreciate it ,if anyone takes this medication and could give me some feedback as to whether it helps them with symptoms?

Also does anyone takes digestive enzymes? If so do they help ? I was considering discussing this with my GP .

Happy Father’s Day to the Fathers on the forum. A good day to everyone.

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Buttsy
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26 Replies
homeat42 profile image
homeat42

Hello Buttsy

Your question is due to have a very, very; varied response. The response will be mainly asking you questions about what conditions you have or think you have. Or! I don`t have that ; but I have this" and you`ll learn nothing. Where you are ( country wise realy does make a difference to the outcome of your conditions and the replies you get to your question. Reply with your diagnosed conditions if you can. Based on this ( I have to say; wonderful website) you will get a wonderful response. Be prepared to be overwhealmed and non the wiser. Just be patient. Gaviscon is the Gold standard in the UK for oesophageal reflux. I found this out a couple of months ago when I attended an ILD group. Why non of this information is not Nationwide and Worldwide standard; it amazes me.

Buttsy profile image
Buttsy in reply to homeat42

Home at42,

Thanks for your response I was asking for opinions on PPI Esomeprazole on treating GERDs and dysmotility as I am diagnosed with this aswel as underactive thyroid, Raynauds , fibromyalgia and probable early limited systemic sclerosis.ANA anti centromere positive .

I have been prescribed Raberprazole 20mg twice daily and Gaviscon 4 times a day, but I am still suffering constantly.As I mentioned before the Gastroenterologist said Esomeprazole may work better, so just seeing if anyone is using this medication and if it helps their symptom ?

What is the ILD group ?

Thank you

homeat42 profile image
homeat42 in reply to Buttsy

Ok Buttsy; "thanks" is an ok reply usually, but try not to use that again please. Your question was quite specific and not difficult to understand at all. Not sure why ,with your follow up reply and your obvious knowledge of your conditions; you asked the question in the 1st place. We've all been in your place. I do think you need to do some homework yourself on your specified conditions. We are all so different as human beings in our physical makeup. It would help if you actually tried to help yourself; before questioning the replies you get. Interstitial Lung Disease is very unpleasant, but not the killer we were told years ago. It does seem that you are fixated on Gerd. Ppl; take the lowest dose that works for you. My advice is 20mg 1 hour before bed. I had to stop 40mg because of chemotherapy.

homeat42 profile image
homeat42 in reply to homeat42

It's iteresting that what I actually want to post is not posted

Buttsy profile image
Buttsy in reply to homeat42

Hi homeat42,

I am sorry ,my reply was incorrect.

I wasn’t questioning your advise at all.I

Ithought you were asking for more information on my conditions so people could offer better advise, that is why I didnt just reply with thanks.

I do try to help myself and have done a lot of research but sometime getting some insight from others is very helpful.

Thanks

CarolMcl profile image
CarolMcl in reply to homeat42

Rude!!

pino99 profile image
pino99

Hi Buttsy,

I've been on esomeprazole for over a decade due to scleroderma related GERD much as you describe. It works very well for me at the lowest dose of 20 mg without any noticeable side effects and combined with some lifestyle measures such as no alcohol, being careful with fatty food and chocolate, it keeps all symptoms at bay. I hope your issues are resolved soon.

Buttsy profile image
Buttsy in reply to pino99

Hi Pino99,

Thank you, I appreciate your reply.

Sosie profile image
Sosie

Hi,

I have come across people on various forums who have said they get good symptom relief from esomeprazole. You may need a much higher dose than someone who does not have scleroderma.

I have never come across anyone taking digestive enzymes for GERD. My mother takes them for pancreatic cancer and my understanding is that they simply replace the digestive enzymes that her pancreas is no longer able to produce. I am not sure how they would make any difference to GERD symptoms. Also, they are in very short supply in the UK currently.

I hope you get some improvement in symptoms soon.

Buttsy profile image
Buttsy in reply to Sosie

Morning Sosie ,

Yes I understand the enzymes are in short supply and I did realise on more research that they wouldn’t help me in relation to Gerds .

I appreciate your reply. Thank you

Sosie profile image
Sosie

You’re welcome. I take omeprazole for my GERD and occasional gastritis. I usually take 40mg in the morning and 40mg in the evening, although I have been put on up to 120mg per day in the past. I see a scleroderma specialist and they told me doses are quite normal for people with lcss, which I have (anti centromere positive also).

I have been diagnosed over 12 years now and omeprazole is definitely my friend! 😊

mesally profile image
mesally

Hi there are you using Gaviscon advance as I understand it's the most appropriate?I use this alongside Lansoprazole. Have to say it's a bit of a nuisance, but it does stop the worst of the coughing which plagues me due to reflux

Buttsy profile image
Buttsy in reply to mesally

Hi Mesally,

Yes I am using Gaviscon advance 4 times a day, along with the Raberprazole. The Gaviscon does calm it but I find I still wake up in the night due to acid reflux even though my head is elevated.

Thanks for taking the time to respond.

Buttsy profile image
Buttsy

Hi sosie,

I am pleased you found your friend !

I will keep looking for mine.

LadyTrundle profile image
LadyTrundle

I have been taking omeprazole for decades at the dosage you are taking. I have only recently learned how to take it correctly! And that was by chance picking up a leaflet before my GI appointment that was running late!

Ie, 40 mins before breakfast and 40 mins before the evening meal. It takes that long for the drug to be processed ready to react with the enzymes in the food, which is how it is activated.

It works well for me

I also swear by having a pillow wedge under my mattress so my head and upper body is raised slightly.

I took digestive enzymes for several months a few years ago when I was getting lots of bloating, burping and projectile vomiting any time I ate meat or fish. It really helped rebalance my inner’s then. Now I only take it on the rare occasion I have a steak or something.

Buttsy profile image
Buttsy in reply to LadyTrundle

Morning LadyTrundle,

Unfortunately due to taking levothyroxine first thing in the morning before breakfast,I can’t take the Raberprazole at that time because they can interfere with the absorption of the levothyroxine.so I take it in between breakfast and dinner. Maybe I need to adjust my timing.

I think I need to discuss this as well with Doctor as this may be adding to the problem, thanks for sharing your knowledge .

Interesting to hear about your experience with digestive enzymes, as I suffer with bloating and burping to.

Thank you

Partner20 profile image
Partner20 in reply to Buttsy

If it makes the timings easier you can take your levo at night, which many of us have to do if we have other meds that we needed to take in the morning. The protocol is, as you know, to take it on an empty stomach, which simply means 4 hours or so after your last food and drink. I have to do it this way myself.

Buttsy profile image
Buttsy in reply to Partner20

Hi Partner20,

Thank you ,for your response, I may need to try that.

Halfwayuphill profile image
Halfwayuphill

Hi Buttsy

I have been taking various ppi’s for years for this problem and I have dysmobility too. A few years ago my reflux got worse and Professor Denton suggested I changed to esomeprazole as my oesophageal spasms were also happening more often. My spasms hardly happen now as a result. He did say they find it very useful in treating Scleroderma related reflux etc. No better person to know I should think!

Hope it helps

Buttsy profile image
Buttsy in reply to Halfwayuphill

Morning Halfwayuphill,

That’s reassuring to hear that it works for you and yes also that it was recommended by Professor Denton.

Thanks for sharing ,I appreciate it.

trunchalobesity profile image
trunchalobesity

I have SIBO and poor gut motility and GERD

I take for reflux lansoprazole twice a day nizatadine at night and ha is on top up as required

To empty my bowel I take movicol twice a day.

To empty stomach metoclopramide and erythromycin.

I take the following antibiotics each for two weeks in rotation, coamoxiclav, Rifaximin and ciprifaxin.

With POIs I have lung involvement and cannot afford to aspirate stomach acid.

My bed has a king size wedge under the entire matrixes to raise the head.

Best wishes

Buttsy profile image
Buttsy in reply to trunchalobesity

Morning Trunchalobesity,

Thanks for your response and all the information it is appreciated ,and best wishes to you too.

strongmouse profile image
strongmouse

Hello Buttsy, I've been taking omeprozole for a number of as I get acid reflux. (Gastro Oesaphgeal Reflux Disorder known as GERD). All medicines can have side effects, but I find I tolerate this well. I had to first have an endoscopy which I had with mild sedation. It makes a difference for me having it especially as it can aggravate the asthma. Hope you GP can give you good advice.

I'm about to start some specific digestive enzymes as my pancreas isn't producing enough.It is a matter of making sure that they have properly investigated what is happening. That is treating the problem and NOT just the sympton.

Definitely discuss with GP.

Buttsy profile image
Buttsy in reply to strongmouse

Morning Strongmouse ,

I agree yes the problem needs to be treated.

Thanks for you reply.

cheeselover342 profile image
cheeselover342

Lots of interesting answers! About 4 years ago I was prescribed 40mg Esomeprazole once a day and I must say personally, I find it much more effective that Omeprazole. I have also been prescribed Gaviscon Advance up to 4 times a day, as necessary, which is very effective. I seem to tolerate both well.

Buttsy profile image
Buttsy in reply to cheeselover342

Hi Cheeselover 342,

Thanks for sharing your experience.

I have now been prescribes Esomeprazole.

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