Hi all. I havnt been on for a while I’m busy caring for my mum who is Palliative so needs 24 hour care.
I am wondering when I was diagnosed with PBC my AST was 150 that was 18 months ago. I was put on URSO and felt worse so stopped taking them which I told my consultant and he said we could do a trial of leaving off the URSO and try and lose weight and do monthly bloods and see what happens. ( my weight had increased quickly) so 4 months later my weight has stayed the same dispite really trying to lose and bloods have gone up every month. My AST is 226. I’m not sure if this is classed as really high?and slightly worried it’s gone up every month. Consultant says we have time to do trials as it’s very slow to progress and if things don’t get better will need alternative medication. Is AST of 226 and ALT 61 really high I’m not sure? I don’t want to take medication really. I’m wondering if I should ask for another fibroscan as well as last one was about a year ago and scored 5 and he said I would have yearly scans.What are others scores with there AST in comparison? I also hurt all over with a lot of pain especially on insides of elbows, feels liked badly bruised bones and painful legs and fatigue has worsened. I know we can’t talk about Blood results but just wondering what others readings are and how they feel.
Thank you 😊 Sheree xx
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Dibby1971
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If Urso doesn't agree with you would you not try something else? Untreated PBC is not good.
I can't remember what my AST was and is. Above normal and still slightly above. My ALP (the important one in PBC) is now below 200, which is the target for me.
Hello thank you. Yes I know I need to take medication, it would be silly carrying on knowing my levels are rising but at least I know now I do need them x Just hate taking them.
I agree with Kakey. Untreated is not good. Urso does come with side effects - many people I guess don’t have issues. I did to the point I collapsed at work and was on medical leave for 7 months because I could not function with the head aches, muscle and joint pain, dizziness, nausea, vomiting, diarrhea and fatigue. I think I had a breakdown. My dr told me this medication was a must and in time I should both adjust to it and learn my boundaries to live with it.
My levels when first diagnosed were ALP 338 (normal is 30-115), ALT 104 (normal is 1-40) and AST 75 (normal is 8-32). In about a year and a half before diagnosis I gained about 15lbs without explanation. I’ve always been very active and ate very healthy. I look back now and I believe it to be connected to these rising/heightened liver levels.
I was prescribed 750mg of urso a day and at first responded - not as well as my doctor had hoped but my levels went down and the weight melted off me too. Mind you I had terrible side effects to Urso and had to adjust my (already quite healthy) diet to strictly whole or homemade foods.
I’m 1.5 years since diagnosis and being on Urso and my levels are going back up. In March 2020 my specialist increased my Urso to 1000mg a day and again at first my levels went down (my ALP was at 190 and hadn’t been that low in over 4 years). Now ALP is back up to 249, and my weight is increasing too. I know I’ve read that Urso tends to make you gain 5lbs on average but the weight should stabilize within a year of taking the medication.
I see my specialist early next week to go over things and decide next steps going forward which I believe will be to apply for Ocaliva as he will deem me a non-responder to Urso. I will still need to take Urso forever but I can say that things are better now. I’m never going to be 100% normal. I have accepted that and am grateful for the days I feel about 75% “normal”. There is medical research behind the need to take urso to slow the progression of this disease. I think cirrhosis or a liver transplant would be a far worse life to endure than extra weight and aches and pains.
Like I said I have had a pretty bumpy road so far with this all but it’s getting better. The added drug I may need scares me as side effects of the disease and urso right now are very much part of every day for me but it’s what I know I need to do to try and live the best I can for me and my family. I have a GP and a hepatologist and they are both wonderful - keep a close eye on my levels every 3 months and it’s hard at first but you have to trust them and take their advice.
I wish you the best. I know you have nothing but worry going through your mind right now - trust your doctors. I’ve realized that no matter how much exercise I get or what I eat or my lifestyle - it’s not going to fix this. The medication and doctors expertise is the help I have to take.
Hello thank you for your reply it really helps. I think I said it wrong so my ALPis 226 and AST 61. I think I will ask to go back on Urso and give it another good go. Consultant said I would have to travel to Birmingham if I need alternative medication. He was happy to leave me having a break from medication. I think I wanted to see if I really needed the tablets but I clearly do as results have gone up every month and it mustn’t carry on like that. Yea you are right I certainly don’t want a transplant as that’s what my Aunty in America needs and she has had PBC 20 plus years. It is horrible and I have Collitis also and now they have found out I have furred up arteries and need aspirin and statins but my GP said to check with Hepotologist first as probably shouldn’t take them.
Anyway I wish you all the best and good health. Thank you again 🤗 God Bless
I looked after my mother for 3 years before her passing, miss her still dreadfully, she lived at home with us. I know how easy it is to put on weight, sharing tea and biscuits in the afternoon, sitting with your loved one not being able to get the exercise needed to keep the balance of weight and food intake. In the end the way I lost 20 kilos was to cut out bread, pasta and rice, no naughty little treats. Loads of salad and vegetables with lots of protein to keep me full, once I had lost the weight I introduced slowly the diet I was used to but at much smaller portions.
As you have concurred with a PBC diagnosis medication is needed to slow the rate of progression, over the years I have read so many of us hate taking the tablets, so you are not alone in that. I wonder if slowly taking URSO and increasing the dose until you reach the required dose would help you, then you can see if you are an URSO responder or not. I see further down you mention going to Birmingham so I am wondering if your specialist feels you would need to take Ocaliva which is, I understand, prescribed from specialist centres. I see further down you also have other conditions which may respond in part to dietary changes. My mother was diagnosed with ulcerative colitis and had to have the operation to remove part of her bowel. There are apparently different types of colitis. I am on statins and have been for probably about 20 years (family history of heart disease) my hepatologist knows this and it is not a problem.
But as Katienharley says and I quote "no matter how much exercise I get or what I eat or my lifestyle - it’s not going to fix this. The medication and doctors expertise is the help I have to take. "
I know that Prof.Jones from Newcastle has said that if you have a diagnosis of PBC you need medication.
Getting the balance of everything right to give you your best life is so very important and you really do have a lot to cope with.
My experience with not taking Urso caused me to skip stage 3 right into stage 4 fairly quick. I'd advise to go back on it, your body will eventually get used to taking the Jessi, it just takes time. Then your pain could be due to very low vitamin D which is common in PBC. I was diagnosed in November 2012, stage 4 work all the bells & whistles. Plus I'm not a doctor, I just have a great Healthcare Team
Urso is essential and I suspect you are suffering from PBC not the effects of taking Urso
You must take it
It’s a lifesaver and you must steel yourself and not talk yourself out of it. It is very low toxidity and often it is the fillers in the capsule that are affecting you . Take it with food and ease it out during the whole day.
Don’t be put off and once you’re used to it you will see a difference. Do not persuade yourself it’s making you ill unless it absolutely is.
Urso is one of the only drug s that can slow your PBC down so chin up and take it . it is a blessed drug and thank goodness we have it
Different brands of Urso use different fillers in manufacturing . I tried about 6 brands until I got one that didn't upset my stomach terribly. So talk to your docs and pharmacists about changing brands. My doc puts the brand name on my Urso RX.
Thank you all I have read each reply and also my partner who is very concerned I havnt been taking the medication. I feel I must go back on my Urso and with thanks to you all I can see how important it is. I speak with my Consultant again on the 11th so I will probably wait till then to check that’s what he thinks is best as well. This has really helped me as I do have a lot going on but these replies have really given me confidence to try again xx Thank you and I wish all of you the very best x 🙏❤️
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