Not feeling great

I was clinically diagnosed with pbc just over 2years ago , although have been ama positive 7years prior to this. I have never taken urso. in October last year I had bloods done and saw a rheumatologist due to backache and joint pains and was told that I have no other autoimmune disorders. I have had an under active thyroid for over 25 years and am on tablets for that. Along with the fatigue I am feeling nauseous on most days. My diet consists or chicken or fish with fresh veg. I haven't eaten gluten for a very long time and am lactose intolerant. My problems with gluten and lactose seemed to coincide with start of the menopause. I am quite light for my height and feel weak. does anyone else have these problems.

35 Replies

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  • Hi, why have you never taken urso? I felt a lot like you do now before I started urso. All is not great now, but it is better. Not being able to eat weakens you. As far as I know urso helps most of us if we can tolerate it.

    Feel better!

    J

  • thankyou. will talk to my gp

  • Can't believe you are not on Urso. May be a good idea to find out about this asap. Good luck x

  • seems like General theme in everyone s replies. thankyou

  • Sounds like you should be on URSO!!!!!

  • thankyou

  • It might be worth having a full vitamin and mineral analysis.

    Although your diet sounds healthy, I do wonder if some areas could be lacking - I assume you have fruit and non-gluten grains, as well.

    PBC can result in difficulty in absorbing the fat soluble vitamins, and we do also get some trace elements from some of the foods you may be avoiding. If your blood tests have ruled out all other medical causes for the nausea and weakness, then other more detailed investigation is needed.

    Also, yes, it sounds possible you should be on urso - it is the only thing, so far, that is known to slow down the progress of PBC. However, why hasn't your PBC consultant advised on this? You need to be seeing a good hepatologist who can advise on PBC on all counts, including diet and medication.

  • thankyou

  • URSO hasn't been proven to work,

    Has anyone's numbers come down from a liver function test,

    because if not I can't see it doing much good.

  • 1Ruby1,

    My 'numbers' came down significantly once I started taking Urso - they never fully returned to be in the 'normal' range, but it has taken 26+ years for me to progress from Stage 2 (when first diagnosed) to Stage 4. So from my perspective, Urso has done a good job slowing the progression down, which is all it is said to do, after all.

  • thankyou

  • Thank you

    DianneS

    When everybody says

    it works, I wanted to know this piece,

    Wow you have come a long way-------

  • 1Ruby1, I have been on Urso for 4 months and just had my blood work done . My numbers came down dramatically. My AST/ALT are now in the 60's (were in the 100's) and my Alk Phos was over 600 and cut in half into the 300's! Only problem is, I'm losing my hair from the Urso side effects and get dizzy a lot. Currently down to 1 a day now, 300 mgs.

  • Thank you donna01

    That's strange you saying you are losing hair, and have dizzy spells, I have both of these and don't take

    URSO, have had PBC

    for 4 years. Perhaps check with your doc as it might not be URSO,

    I am having tests to see

    why dizzy / hair problem.

  • Hello again 1Ruby1.

    Don't know how old you are but said that hormones can be the cause of hair loss in females. I've always had fine hair anyway so for myself I can't say my hair looks any thinner than it always has really. I am 51 now by the way. I've never had a perm and didn't use any dyes until I was in my later part of my 30s and then it is more often than not a semi-permanent. I buy an herbal one that is said to have less additives. I am currently going through the menopause, started just over 2yrs ago now and so far so good.

    Could the dizzy spells be low blood sugar? I sometimes experience a bit of shaking which I know is due to not enough to eat at times in my case. (No I am not diabetic, can safely say that with having a grandchild insulin dependent and my daughter who at odd times checked mine just for the fun of it, I am definitely not.)

    As far as I know urso isn't responsible for hair loss or causing dizzy spells.

  • Hi Peridot, It is not my blood sugar or thyroid, been checked. Interestingly enough, my gastro stated he has 3 out of 14 patients on Urso suffering hair loss and dizziness. I guess I'm just unlucky ;(

    I found this on medicine.net

    SIDE EFFECTS: Stomach upset, nausea, diarrhea, dizziness, back pain, hair loss, or cough may occur. If any of these effects persist or worsen, tell your doctor or pharmacist promptly.Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects. Many people using this medication do not have serious side effects.Tell your doctor immediately if any of these unlikely but serious side effects occur: weakness, swelling of the ankles/feet, increased thirst/urination, signs of infection (e.g., fever, persistent sore throat), easy bleeding/bruising.A very serious allergic reaction to this drug is rare. However, seek immediate medical attention if you notice any symptoms of a serious allergic reaction, including: rash, itching/swelling (especially of the face/tongue/throat), severe dizziness, trouble breathing.This is not a complete list of possible side effects. If you notice other effects not listed above, contact your doctor or pharmacist.In the US -Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.In Canada - Call your doctor for medical advice about side effects. You may report side effects to Health Canada at 1-866-234-2345.

    medicinenet.com/ursodiol-or...

  • Hello again donna01.

    Interesting as noticed your piece has come from Canada.

    I have taken 3 different urso's since Dec 2010 when I was diagnosed. My first were 300mg tablets known as Urdox and I was fine with those after a few months of initial side-effects. The 300mg were withdrawn summer 2013 and I had to have 150mgs 'doubled up' as I take 600mgs per day. MY first batch of tablets were Destolit, a brand and they seemed OK but then a few months later when I picked up the prescription I was given generics in pharmacy labelled bottles. They were by another company (Galen) and I suffered dreadfully with heartburn for 3 months and had to ask the GP to write a script for the brand I had got on my first batch. I've been on the Destolit ever since, no problems. I have read the leaflets for all the urso I have taken since Dec 2010 and there has been an odd one or two reported side-effects that varied on them but they have nto been extensive. My current one lists diarrhoea or pasty stools as common side-effects, other being or feeling sick and itchy skin.

    I know you can report side-effects here in the UK.

    Sounds like maybe a few with PBC taking urso are finding certain symptons that they have in common that could come under a very rare category.

    I know back in the late 1980s when my daughter had vaccinations, she was given the standard measles here in the UK as the MMR at the time wasn't launched. When my son had his vaccination for measles 2yrs later it was the MMR and my daughter was given it. Although at the time a doctor refused to agree, I only know years later that my daughter did in fact suffer from one of the rarer side-effects of the MMR. She ended up being checked over and had x-rays at hospital the week after having the MMR and I read a patient info leaflet several yrs ago and she did in fact have the very same that no-one informed me about at the time. My son on the other hand was perfectly fine.

  • Hello 1Ruby1.

    Well I saw a big difference after taking urso for just 8wks after starting (I was diagnosed Dec 2010 and was given urso then) with my LFTs (liver function test) and also the GGT.

    I continued to come down with them but then I had a slight climb for 6mths and then they dropped again. I've probably got a wavy line on a graph for the last 4yrs after taking urso for around a year but my LFTs and also GGT are far better now than they were back in 2010 as I have all my blood results from early 2010 to present.

    The point in taking urso isn't it being a cure but it adds a component of bile to our system thus aiding better digestion and with more bile in our system we can continue to break up fats for eg in an attempt to keep our bodies in good shape. With PBC and bile ducts being under attack and said to start vanishing due to the damage the bile simply leaks into the liver. By the addition of urso we are topping ourselves up and it is said to improve the bile flow.

    As far as I know though there has been discrepancies whether or not urso works in PBC, I don't think we can say it works as such as ther eis no cure for PBC as yet.

    Urso is simply improving our bile which in turn causes less strain on the liver and at the same time said to help slow down the progression. There are no guarantees taking urso but at the end of the day I'm now of the opinion that if something is helping then I'd rather give it a good old go than not take anything.

  • I have had Diarrhoea most days

    since I have had this, has anyone

    else had this ?

  • Diarrhoea is a common side-effect of urso apparently.

  • I am not on URSO because have had diarrhoea, since 4 years

    ago, now they are checking me for Croyns

    Disease, and also checking my pancreas

    The liver Specialist

    wants me on URSO.

  • Hello again 1Ruby1.

    If your specialist wants you to take urso there must be a good reason for it. I know I have read on this site that some with at the time undiagnosed PBC who have then been diagnosed and then started urso have stated that they used to go to the toilet a few times a day to empty their bowels but then things altered with urso.

    If these contributors are on the site reading they might just fill you in more. I know there is a difference between going to the loo several times a day and having diarrhoea but someone might just post something that may be of better help to you as I never experienced any bowel problems pre-diagnosis and can't really say I have since. Urso did cause constipation in the early days but I adjusted my diet and haven't taken any over-the-counter or presribed medications as in laxatives.

    Not sure the symptons of Crohm's Disease but my brother's old school pal was diagnosed as a Coeliac about 15yrs ago it would be now. He apparently had constant loose bowels and sticks to a gluten-free diet so he doesn't get the symptons of it as you can if you lapse onto gluten. I know you can have a blood test for coeliac sprue and I had one the year I was diagnosed as I did read that is one of the blood tests that you have as you go on the road to PBC diagnosis. (I once found an NHS map online that medics follow and have to say mine actually did follow that route. Can't say where I found it, think the MIMS site.)

  • Urso has halved my numbers! Not taken the fatigue or woolly head away but looking good so far.

  • thankyou

  • Explain "wooly head" ...dizzy...?

  • I was diagnosed one year ago. Ursodiol brought my numbers down too. Btw, I was very sick (vomiting/diarrhea) the first two months of taking it, but don't experience any side effects now. It's so nice to have a community to check in with!

  • thankyou

  • I was diagnosed two years ago and was given Urso straight away. Prior to diagnosis I had quite a lot of nausea and felt weak but most of the time now the nausea has gone and I feel a lot better. Good luck and speak to your consultant.

  • thankyou

  • I do get nausea even though im on urso especially if I go too long between food or try and do to much without stopping for a rest and a snack.i do have fairly advanced liver damage. Although you are trying to sort it with diet think you should be getting some new blood tests done to make sure is not liver related as it seems to similar to the symptoms lots of people suffer to not be related to pbc.it does seem odd that you are not on urso but don't think there is concrete evidence to say that urso prevents pbc progressing but it can lower lfts.ask for some new blood tests and query the fact no urso.good luck.xx

  • Dianne, when I say wooly head it's like a fog comes down. I find it hard to concentrate and feel as though I am outside of anything that's going on around me. I didn't know that hairless was a side effect of the meds!!

  • Pooche, have you joined the PBC Foundation? If not, its free to join and with that you receive the quarterly magazine The Bear Facts, the Compendium called Living with PBC, and access to the helpline where you can ask anything you may be concerned about. It might help you with any queries or anxieties you have.

    Best wishes

    Posh

  • thankyou. will look into it.

  • There's also a free dvd on PBC available from Liver North in Newcastle, UK. They'll send it out to you. Their newsletters are also online to read like the PBC Foundations. I'll post the link for you now..

    livernorth.org.uk/

    Just click on the PBC dvd and it will take you to details you fill out for them to send to you. I got a copy about 3yrs ago now. No I didn't watch it all, my husband did though.

  • thankyou

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