I have had AIH with cirrhosis for many years and was told about 2 years ago that I also have PBC. I have recently started feeling very sick from the time I wake up. I feel as if food would help but it doesn't. I have been taking Ranitidine since an ulcer was discovered in my stomach during a regular gastroscopy but a week later, after another gastroscopy, I was told it had healed with the tablets but to go on taking them. That was only a month ago. It can't be gallbladder as I had mine removed years ago.
Could it be the PBC which is causing it? Does anyone else have this sick feeling? If so what do you do to alleviate it? I'm using Gaviscon occasionally but don't like to use it too often and have been cutting down on fats with no benefit.
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Koinonia
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Nausea can be a sympton with PBC. If you feel nauseous try having some dry biscuits (ie Rich Tea) to see if they can alleviate your sympton. I know if you do actually eat if you feel nauseous (I've always felt a bit nauseous when it has been the start of my monthly cycle (I am 52 next month, still got a cycle but it started to get a bit eratic a few years ago so I expect I am in the menopause stages), find eating does actually help alleviate). I say dry biscuits as I recall when I was pregnant many years ago both times I wsa nauseous and sick for the first few months and I did find dry biscuits at morning alleviated it somewhat.
I don't think using Gaviscon a good idea if you are taking Ranitidine as it is also known as Zantac and used for the same thing. I remember many years ago my dad had both these medications but not at the same time. Could it be the Rantidine is causing your nausea at present? I dont' know what the side-effects can be from your meds.
Little and often tends to be the norm for a lot of people with PBC. I find myself with probably ageing as I was like this pre-PBC diagnosis in 2010 that I can eat rather greedily breakfast time and also noon but as the day wears on I start to taper off and by evening meal time I never find myself that hungry so don't eat bit then. I dont' actually eat after the evening meal, I actually find this better for me especially now with having this PBC (my sympton is still itching but it is different from 2010 as it isn't as intense or severe as it was back then).
There might be some suggestions in the PBC Foundation binder. You can see it online if you are a member.
Hi Gritty, Thank you for your useful comments. I LOOKED UP THE SITE YOU GAVE ME--IT'S SCARY LIKE SO MANY OF THEM! The ranitidine (tablet form) was prescribed by a Hep after they discovered an ulcer during my gastroscopy but I used to take it years ago with no side effects. I rarely take the Gaviscon which was prescribed by my GP for heartburn etc.
The itching is also worse at the moment so I suppose it is all related to the PBC!! I eat small and often and have tried recently to eat plainer food.
I haven't looked in the PBC binder yet as I have been very busy but will do so later today Thank you. I wish you well.
I think like all medications, some side-effects stated may affect some taking but not others. I think a lot of the information these days is more like a statement from the company, manufacturers, etc to cover themselves due to the changing world we now live in.
Have you tried calcium and Vitamin D tablets when you have heartburn at all? I bought some last year when I had a short bout of heartburn in the evening and just took one. In the UK they are the same formulation as our Rennies for indigestion and heartburn but they don't have the colours and flavourings in them and they are far cheaper as you can just buy a basic drum in the supermarket. Personally I don't think a bad thing the odd time these calcium with Vitamin D due to the fact with PBC we can have bone problems and also Vitamin D deficiency.
I did read last year that eating an apple is good for dyspesia and indigestion and it does work for heartburn I have found.
Yes this itch is a real bug-bear at times. Funnily enough mine wasn't so bad last night but I've started to take my urso again like I did in the early days, 300mgs with breakfast and 300mgs around 9p.m. I've tried various ways of taking urso but did once find taking all at morning as I've read is perfectly OK to do so (was once mentioned in Bear Facts) I started to itch badly later morning, something I never do normally so I think urso can also contribute to itching as well so doesn't make for good combination with PBC and urso! But the urso has made a difference for me so I just take them.
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sorry to hear your suffering but just to let you no u can use both ranitidine and zantac drs give theywo on scrip ranitidine works long term gaviscon is
As I don't know anything about Ranitidine, I looked it up. I've pasted a link to the site I read, below ... but there may be other, far better sites.
From my quick read of the site, it suggests that nausea is one of the possible side-effects, so you should probably go back to your GP and tell him/her what's going on. The site also suggests that if you need an antacid for the pain, to ask the GP for advice on which one - so I agree: stop the Gaviscon until you have checked with the doctor. Also, the site advises that anyone with liver conditions should have discussed whether Ranitidine is appropriate with the GP, so again, check that with him/her. There's also a lot about making sure it is fully dissolved in water before taking.
I was keen to check, as I have taken Omeprazole [which is possibly completely different], for my tummy issues, and I know that taking it for a long time can cause certain vitamin shortages. This is not mentioned as an issue with the Ranitidine, but it may be something else to ask about when you see the Doc.
Headline news 2 mths ago warn of taking that family of antics as it I ncreased the onset of dementia by 44%. Look it up. I I wouldn't take it if I were you!
Were you replying to me or to Koinonia? Only your reply has come to to me, and I think both of us will want to be sure which drug you are referring to.
Do you mean the Ranitidine that Koinonia has been taking was said to speed up dementia .... or is it the Omeprazole that I mentioned that you mean?
Would love to know, just to be sure. Thanks for your info, though!
sorry to but in but just thought to tell you i was on ranitidine for yrs and it can cause memory loss so not goox for livdf mydaugbtef wastaking thdm over the counter ones had to have a routins blooxs for something else her liver readings were higb she came off the tablets all redults normal 3mths later
Peridot, I am so sorry I have mixed up your reply with Gritty's and got myself in a muddle.!! Thank you so much for your advice---I've often read your sensible,helpful replies to others but don't often send any as I don't think I have much to offer. Would you be kind and read my reply to Gritty as it is for you too.
Don't worry about how you have posted, I think we can all gather information from each other and then make up our own minds with certain issues.
I think you'll be surprised that you do have something to offer to the site. At the end of the day only us with PBC in our case know exactly how the itch feels and how we all try to deal with it in our own way and by others posting about their own issues, we can all understand how each of us feel.
I'm the opposite, I've had PBC since 1999 and developed the overlap of AIH in 2010. I have progressed to severe fibrosis/early cirrhosis stage but will undergo more tests soon to confirm severity and or progression as some recent tests yielded conflicting results. Sorry to hear that you feel so sick. My first advice would be, have you contacted your doctor?
The reason I am saying this is because recently (2 weeks ago today to be exact) I switched liver doctors. I was so sick to my stomach with chronic diarrhea, weight loss, I was home-bound, couldn't eat, food smells bothered me, I was not happy, very frustrated to say the least. I scheduled a consult with a doctor who came from transplant and joined the hepatology department to take a look at my file as a second opinion (yes, we can do this).
I met with her close to an hour and she explained so many things in great detail I never knew (and I pride myself in trying to read as much as I can about PBC). She eliminated one medication and it's been two weeks since I haven't had any GI distress. I was afraid to say anything because I thought it was just coincidence, but no my symptoms have cleared 90%. I still can't eat much, but I'm not a big eater. The medication was supposed to control diarrhea but in my case it was toxic and my body reacted, obviously I didn't need it. I suffered with this for 9 months. I kept calling doctors, emailing them, scheduling visits, but no one saw a correlation until this doctor thought let's try this because she felt I did not need it and I am on a lot of medications anyway (15). My goal is to eliminate a few more I don't need besides the lifesaving ones.
Just so you all know, in my case, the medication prescribed was Xifaxan (Rifaximin), 550 mg 2 tablets daily. We are all different so not everyone reacts that way. My fellow PBC friend broke out in hives with an allergic reaction and can't take it so we all react differently. I know for many this medication works great so please don't change your regimen based on my experience. There are many people who can't take URSO either. URSO is what we have for now and I'm glad I can take it.
Finally what I am trying to say is please go back to your doctor, insist, I am the biggest pain in their butts (very respectfully of course!) and I am sure my file reflects it, but I don't give up. Could it be that medication for your ulcer? Maybe, maybe not? I wish I had some better advice to give you. Yes, PBC can make us sick, but AIH can be worse (according to what I've been told since I have both) so make sure your AIH has not flared up since you've had that longer. I wish you the best.
Hello Della, Thank you for your post.I'm sorry you have the Duo and hope the medics will be able to sort it all out for you after all your "pestering". I have a very good relationship with both my GP and Hep so don't need to keep on at them. I have already cut my dose of Ranitidine in halves and made an Appt. to see my GP on Thursday.
Hello to all of you. I have been reading posts for a couple of months now, waiting for a diagnosis. I am in the U.S. I have seen two gastroenterologists, had a liver biopsy, and then, because there was no definitive diagnosis - the biopsy slides were sent to three different pathologists for their opinion. The final one who specializes in liver diseases decided I had PBC. I think my local gastro guy thinks it's really Autoimmune Hepatitis or an overlap. The question was how to treat me. The local doctor decided he should follow the liver specialist's recommendation and I started on the generic form of ursodiol 500 this past week. I'm taking a pretty high dose, I think, because it's based on weight. I was ok the first two days on the medicine but by day three I had a raging headache and have had one ever since.Also on day three, I began sweating profusely, as if I was going through menopause again. Once was plenty. I am reading that many of you are complaining of being hot at night. Do you think it's related to the ursodiol? Do you remember when it started? I stopped the medicine for a day and a half and started it back up again today and I think I feel the flushing starting again. I wanted to know for sure if it was related to the medicine before I called the doctor. I cannot tolerate being hot and sweaty. It makes me crazy.
I looked on line for side effects of the drug. Sweating is listed as one but rare and there was some mention of your body getting used to it after a bit. Has anyone had this experience? I want to be compliant but it's a matter of quality of life.
Hi Littysgirl, I'm sorry to hear your experience with Urso. I take 1000mg per day(4x250) and I take them in the evening 'cos I read a report by a professor who recommended it and my Hep was happy so long as I took them!!! I haven't had any side effects from Urso but others may have so I hope you get more replies.
Thank you so much for replying. I am taking 4 pills of 500 and the doctor had written to take two in the morning and two at night. I'll try taking them all at night and see if that helps. I only took two yesterday. I didn't have the perspiration that drove me crazy last week but the itching came at the end of the day. I have found that putting lotion on the area that itches the most does help - that and distracting myself with an activity.
I was told that it's so many milligrams per pound. I'm a large person and needed to take 2000 milligrams a day. I have become accustomed to the dosage and the complaints I had a year ago are gone. I take two in the morning, after breakfast, and two before going to bed. I am not aware of any side effects any more.
hi sorry im butting in ive been on urso for around 3yr always take together 1000mg and take at morn liver consult i seen in march suggest i take at night better response apparently
hi just read post i am ohaving major sweats night times are horrific and no its meno been there done that but after a barage of tests and scans for something terminal or tropical the results came back as don t no whats causing them put it down to my fibromyalgia thank u o shall be looking into the link myself x
i have just googled this lime u i am often having a sick feeling especially thru thr night and early morn and do feel like food would help i have been on omezaprazole for yrs i also have fibromyalgia as well as pbc
As this is an old discussion thread (about a year old) most people may not be tuning into it - I got your link as you 'replied' to a comment of mine above. ...It's a complicated system, as if we reply in the wrong place the person we are trying to talk to doesn't always know we've contacted them.
I would talk to the trained advisors at the 'PBC Foundation' as they may be able to help with regard what might help with the fibromyalgia (I've heard that tiny doses of amitryptilene can help with it), as a lot of people with PBC seem to get it.
Also check with them about the Omeprazole. I'm sure you should not be taking it for so long, it can cause stomach acid, indigestion and can inhibit the absorption of certain vital vits and minerals. My current GP told me NOT to take it, ever again, and I think she was annoyed that a previous GP in the practice had given it too me and let me take it for so long.
Can you check with a different GP in your practice? But do talk to the 'PBC F' people: link at the top of the page leads to their website, with phone and email contact details: they are really lovely and helpful.
Are you taking any new medications? I think flushing is a side effect of many medicines, maybe not one of the most prevalent ones, so you might have to read further to find it. I saw another post mentioning the omezaprazole. I took that for a long time and am now on pantaprazole (only because Medicare stopped covering the other one. I think they're both in the same drug family) I don't think that would cause flushing, especially if you've been on it a while. The other poster was correct in saying that the stomach acid drugs do affect how you absorb certain vitamins from your food so you need to weigh the benefits versus the negative aspects. I'm concerned about the affect it might have on my bones, but I have Barrett's Esophagus so I need to control reflux. I have found a balance that seems to be working by taking the pantoprazole only every other day. That was my idea and my doctor says it's fine as long as I don't have any stomach symptoms.
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