Any one else.: Hi, sorry I haven't posted for... - PBC Foundation

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Any one else.

Alley27 profile image

Hi, sorry I haven't posted for a while. Sometimes I think I'm completely on my own in this. I have a couple of questions if I may.

Has anyone else been on mycophenolate mofitil and had a really bad acid upset stomach. This did not start at the beginning of treatment but has come on slowly.

Does anyone else have bad constipation on the combination of urso, mycophenolate and budesonide.

I just want other insights because I'm struggling. Can't see my gp either because I can't get an appointment.

Currently I am suffering swollen, bloated abdomen, constipation, nausea, headache, no appetite..I can't eat...only very soft things but, everything causes nausea...

I have rang my consultant secretary every day for the last 3 days and still no response but, I will keep ringing. Tomorrow I'm going to try again to get a gp appointment...but probably none available..

Its a vicious circle...I had bloods done on 14th May and as far as I know they were OK or someone would have contacted me. I don't have access to my test results but I am going to insist that I do.

It's just so maddening. I have had to buy ensure food drinks because I can't eat.

On the funny side, because if we don't laugh, we would cry...I know I need to lose this steroid weight, but I know there is a better way than this...

Anyone else experience anything like this. I have AIH and PBC overlap x

Thanks 😊

21 Replies

Hi Alley, many of symptoms you describe are very familiar to me, like heartburn, nausea, and other stomach issues, but, they started well before I was even diagnosed with PBC and before Urso. It could be a coincidence, but, of course, you should see your GP as soon as possible. It's getting harder to schedule doctors in the US as well, at least in the state I live. What is the average wait time to see a GP in your area?

Alley27 profile image
Alley27 in reply to iagra

Good morning iagra, I have just managed to book an appointment with my local General practitioner this morning. It's a phone appointment but if he feels that he needs to examine me, he will see me. It takes up to 12 months lately to get to see my hepatolagist. When I was diagnosed in 2012 I was so ill that I had to stay in hospital for 6 weeks. I hope that today I get to see this doctor because I know something is not right xx

iagra profile image
iagra in reply to Alley27

Thanks for reply, Alley. All the best to you!

Sorry the only thing I can relate to is the constipation on Urso.....for me Inulin from Holland and Barrett has been a life saviour . It made me very windy to start with but now 2 years later I just add it to orange juice at night and I'm as regular as clockwork . Sorry I can't help further, hope someone else can help in the other things.

Alley27 profile image
Alley27 in reply to Buddy2017

Hi buddy thank you for your reply. I am using fiberegel, it's the same thing only I can't use it while this nauseous x

Alley we all are here in this PBC health awareness path together here, It helps to tell what you are experiencing. Keep writing, somebody will have same diagnosis and will be able to help. Keep looking for a doctor who specializes in pbc. A nutritionist and endocrinologist could help too. What you eat has everything to do with how you feel. I went through a period of nausea and vomiting for weeks back in December. I checked myself into a hospital and nothing was wrong. Then it went away. Unexplained. I take Ursodoil daily for Over 20 years. I take good self care usually but sometimes I eat junk for emotional eating. Yoga daily saves my life I think, hand weights are there but I don’t feel like using them. I eat a salad daily, flax cereal daily, vit c, d, e, k, calcium, fiber, no meat, low sugar, olive and coconut oils only, I was diagnosed 20 years ago and recently diagnosed with osteopenia, pancreatic cysts, spleen cysts, Annual MRI and ultrasound says they are stable. I guess that means not to worry til they become cancerous. Same with liver replacement. We are all trying to avoid that but some have had transplant and they have lots of symptoms that go with that.

I don’t take the two extra drugs you are taking. But I get access to blood tests. My alt, aph are always high indicating probable billiary damage. I stay in stage 1 though according to abdominal mri and ultra sound. . Recently I had knee sprains and acl and meniscus tears. Surgeons recommended knee replacement but I’m worried I won’t be able to ride horses with it. I’m so tired in the afternoons I don’t want to do anything. I think most of us feel that way. I hope others respond to this and tell what they do to help themselves when doctors say they can’t do anything else. Hand in there and keep writing Alley!

Alley27 profile image
Alley27 in reply to Jlruggie

Hi and thank you for your reply. I am 10 years in with thus now. I also get tired in the afternoon 😴 it must be a thing. I eat chia pudding with fruit or avocado on wholemeal toast for breakfast. I eat lots of veggies and salad plus fruit. I eat fish occasionally but I don't eat meat. I take all the vitamins you mentioned and drink lots of water. I walk a lot and garden plus yoga once per week. I also have an allotment where I grow most of my own vegetables. I also meditate because it helps centre

Hi.Sorry your going through this.

First the nurse in me says, if you haven't had a bowel motion for longer than your normal and your unwell, nausea, vomiting and pain then you should probably go to hospital incase its an obstruction in your bowel.

The PBC me says the above and I had this too.

So my constipation is worsening since urso, then I started plaquenil for arthritis and by last Christmas I was in serious bother. Taking 10 sennakot with no real results. I was then started on methotrexate for arthritis and nausea was awful, constipation worse and pain in lower and upper abdo. So methotrexate stopped and I was referred to gastrologist. Had scopes etc and bowel fine but have stomach inflammation.

Anyway dr. feels I have hypotonic bowel and started me on resolor. It works on neuro transmitter in brain. I'm on it 3 weeks with a slight improvement, apparently it take a while to work.

I too couldn't eat and was so uncomfortable . The nausea has settled too after a month of been sick. I still have to take a truck load of laxatives to make me go but dr. says with the resolor I will gradually need less and then only need resolor.

The important thing is you need to get your bowel moving again.

Hope this helps. Take care. Nelly

Alley27 profile image
Alley27 in reply to Nellies47

Thank you Nellie's 47. I have an appointment with my gp by phone call some time today and hopefully I'll get an appointment. The sickness has stopped but the nausea and acid stomach is still there. I have a little more energy today because my son has been feeding me green shakes and smoothies. I can't eat solid food though because it feels as if something is idea what this is but, if I have no satisfactory answers or way forward today, then I will go to emergency room and I will also speak to pals. Take care.

butterflyEi profile image
butterflyEi in reply to Alley27

Hope you have a productive call with the GP

Nellies47 profile image
Nellies47 in reply to Alley27

Great to hear you have a plan. Nausea is so debilitating. Hope you feel better soon.

Hi everyone, an update.

Had a telephone appointment with a gp on Thursday. He was a new gp, who I have not spoken to before.

I was given some stronger anti acid tablets, which the side effects are many including, liver issues, causes lupus, affects the bones by causing osteoporosis...well....I already have osteoporosis thanks to steroids, I already have liver issues 😉 for the lupus, my father had lupus.

I also had a phone call from consultant secretary yesterday and I got to see my consultant this morning.

I had a fibroscan, was told no cirrhosis yay🥰 but there is some inflammation due to fatty deposits. I will be getting bloods done on Monday to find out what's going on.

I asked how come I have this now when for 12 years no fatty liver...I never drink alcohol by the way. Plus, I eat lots of vegetables, pulses, fruit, salad, nuts and fish. I rarely have any take aways, I usually make my own, slimming world way.

He also is arranging for me to have a camera down my throat, to make sure there's nothing bad going on.

I have a nodule on my thyroid gland, measuring almost 5 cm. I can only just swallow my tablet's. Imagine the difficulty I would have, swallowing a camera. He mentioned a liver biopsy which I have refused, I will never agree to one, unless they knock me out. Also for the camera because I can't swallow them, I have tried.

Good news but not good if you get what I mean xxxx I now have to change my diet again and to be fair, I am so fed up but, I will do it, although I can't imagine how I can do more than I am so any suggestions would be appreciated thank you 😊 x

recipes profile image
recipes in reply to Alley27

Hi, I am also having trouble with my stomach , feels raw and inflame like acid reflux all the way down into lower bowels. I have had this pain and discomfort for a long time but I had 2 back surgery about the time I found out I have pbc and it was hard to tell what was causing the pain but I could tell something was wrong with my gI track. I am also own urso and my blood work looks ok but I am very uncomfortable. I also now have osteoporosis and my primary dr. wants me to take prolia shots but I am afraid to because of the autoimune pbc. What I have read these shots will weaken our immune system causing infection in different parts like heart linning, skin, abdominal,urinary tract and etc. Would you care to tell me what you are going to take for osteoporosis. I know I need the urso but I think the urso is what is causing lots of my trouble. I know this is not a pick me up letter and I am sorry for that

Alley27 profile image
Alley27 in reply to recipes

Hi recipes, you asked me what I am going to take for osteoporosis. Currently I take nothing specific and my diagnosis was in 2019. I do take calci d, which I get on prescription and I take extra calcium with vit k2, Boron, magnesium, D3, manganese and zinc. My gp also suggested I use hrt, but that just piles weight around my stomach area. So not sure what next steps are for me with this.

Like you I am concerned about taking things because of my liver. I have also seen what some of these medication for osteoporosis can do. Plus the stomach issues I have.

I want to see an endocrinologist and discuss my options. I also have hashimotos disease, with a 5cm nodule on my thyroid. It is visible externally, in my throat.

My liver consultant suggests I see an endocrinologist but, my Gp is slow to arrange. I will ask my consultant to refer me privately if my Gp keeps sitting on his laurels.

I hope you find a way forward with your bone issue. The best thing to do would be to speak to your doctor about any concerns you have. The Royal, Osteoporosis Society or similar, if you live outside the UK, will be able to give you information too.

Take care xx

I'm so sorry you're having such pain and issues from URSO and other meds. You want to insist on a referral to a dietician to assist with getting your gut on track. It does take some time to discover the right balance. At the beginning of my journey after ending up on the ER, one doctor suggested I incorporating Probiotics into my routine. I use a non-alkaline in the morning and an alkaline type in the late afternoon before dinner. Since I wasn't able to eat much either, the doctor suggested I incorporate more real fiber 'slowly' back into my diet. This actually worked for me.

Watching what and when I eat it makes a difference to my 'no pain' world without heart burn, diarrhea, etc. I hate to say it, but putting 'real food' no processed has also helped. Trust me, as much as organic is wonderful, it's very expensive so do some minor meal planning to make it easier for my shopping list incorporating what's in season for veggies. I have also reduced my fat intake and dairy too since it can be a contributor to me (but everyone is unique). Trust me, I miss ice cream but have found non-dairy & vegan (believe it or not) that work for me and can make food replacements for cheese that actually work. As you can tell, I do like to cook so having these physical issues has been a challenge but working through it.

I hope this helps and good luck with your journey. Remember to breath and know you are not alone but your path must be figured out by YOU because there are no two people alike and that's what makes you unique and special!!!!

Update......I decided to wait to update while things sink in. Last Saturday I actually got a face to face appointment with my consultant. I had a lovely chat with him but told him directly that I felt something else is going on. I had a fibroscan, no Cirrhosis 😊 but, there is inflammation because of fatty deposits.

I had a fibroscan 18 months ago in an emergency and there was no fatty deposits. I started the mycophenolate just over 2 years my instinct tells me that it's something to so with my medication but also, the weight I have gained through taking steroids for the last 10 years. I have inly had 2 years without steroids in that time.

So what now....does anyone have any ideas in terms of diet, what else I can do to help this. I follow slimming world as it is, I am dairy free and eat fish, rather than meat, nothing sweet and definitely no pastries or fat overload.

I have felt rather down as a result of this last upheaval in terms of liver disease.

As for my gut issues they are certainly related. I am waiting on an endoscopy to find out what is going on. I still have no appetite but I am eating a little more than I was 2 weeks ago.

Regarding medication. He wants to take me off immune suppressants and keep me on steroids only.... sorry but 5hats not happening. Steroids are bad for my bones long-term. They have already caused osteoporosis so not happening.

Take care everyone ❤

Hi Alley, shorty after being diagnosed with PBC years ago, my GP prescribed Lactulose. Not for constipation, but due to chemicals not being filtered out by diseased liver. These chemicals (especially aluminum(?)), will end up moving to the brain, causing what I call sheer stupidity… forgetting how to do something as simple as using a calculator for example. Worse case, the aluminum can lead to death. On Lactulose, I notice a huge difference - my brain clears and I’m running on full cylinders. Lactulose is a laxative. It should battle any constipation faced. It takes a few days for you system to adjust to it but after that, you may find it works daily for you. The bonus would be that it clears out all the mind fog in your brain. Supposedly, it is the only medication that is able to pull the chemicals from your body that a sick liver can no longer do. Best of luck to you. 😃

kalyhan profile image
kalyhan in reply to kalyhan

Also, based on your updates Alley, in the US, any cameras used (I have severe esophageal varicies) and liver biopsies done, the patient is knocked out with a light sedative. I am is the US though, so maybe that’s not the case is the UK?

gwillistexas profile image
gwillistexas in reply to kalyhan

Same here.

Alley27 profile image
Alley27 in reply to kalyhan

Thank you for your reply. In the UK we can be put out for endoscopy but we can also have them done awake. Liver biopsy is usually done awake too with local anaesthesia x

Alley27 profile image
Alley27 in reply to kalyhan

Thank you for your reply. They put me on lactulose at 15 ml per day on Friday. This is to do with the issue of the constipation but I do feel a little less foggy. It took 3 days of taking it before I went to the loo. I have a fuzzy headache this morning too. I seem to get this when my liver is unhappy. I also still have nausea but, I am no longer taking mycophenolate. The consultant took me off it. I am still taking budesonide and I have found that if I plan on cooking for dinner, I can only eat that one meal so, I include lot's of cruciferous and other bright vegetables. Its not a choice its necessary. I can eat 2 light snacks in a day but if I do this, I can't eat dinner. I have got to listen to my consultants, but we have to listen to our bodies as well. I have to include fruit too and for this, I make myself fruit smoothies and add a little protein powder. It's not ideal but, I am trying my best to get the nutrition my body needs.

Take care x

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