Finally seen Gastro

I went to gastro this week and was given a higher dose of urso. My ALP has been rising instead of lowering or leveling. She also gave me a higher dose of hydroxyzine for the itching. I have been on vit D for a month now. I still have constant muscle and joint pain. Does anyone know how long it takes for the Vit D to start helping or the urso? The fatigue is really kicking my behind. I can't seem to get anything done, can't remember things and everyone (friends and family) seems to think I am just making things up. I am feeling so frustrated. Hope everyone one is well. Thanks for listening.

Lisa

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  • I found the vitD helped within a few days, that's not to say I was pain free at that time but much better. Whereas my GP said if it was going to help it would be a few months. Have you looked at the side affects of hydroxyzine this can cause sleepiness in some people, maybe that's adding to your fatigue.

  • Hi Candy, I had taken the hydroxyzine (at bedtime) for a month a couple months ago but it didn't seem to help the itching so she told me to try a bigger dose to see if that helped. (only at bedtime) It is crazy I fight the fatigue during the day and then when I try to go to bed at night then I can't seem to sleep. I am hoping the Vit D will kick in soon!

    Thank you

  • Taking the dosage at night may help if it relaxes you and helps the itching. I don't suffer the itching but I know from posts on here that it is awful so perhaps someone can offer other advice on what may help. take care.

  • I have never really experienced problems with fatigue as I retired early (fortunately) so when I need to sleep or rest I am able to make that choice. The loss of memory is frustrating but because we usually look so well with PBC it is hard for friends and family to understand.

    I arranged for myself to be tested for Vitamin D deficiency and was found to be adequate for vitamin D after a month in the sunshine and so have taken a course of vitamin D to boost levels. This made me ask the GP to check my vitamin B this also proved to be very low. My step daughter who is knowledgeable in these matters told me I should also take vitamin K2. Short courses of magnesium are also said to be good but I have not tried that yet.

    I have just finished a loading dose of Vitamin B injections and take my vitamin D via an oral spray (which I prefer to tablets) and have just finished one month supply of vitamin K2. I cannot say I feel hugely better from any of these various vitamins but I may have a little more energy.

    As to the itching, I do not find that the URSO makes any difference to the itch however I am currently using cetirizine (antihistamine) which seems to be adequate.

    Are you a member of the PBC Foundation? If not it is free to join, follow link through the icon above. They have a very good leaflet which you could give to your family which may help them to understand PBC better. Although sadly I do not hold out much hope.

    Trying to find a balance between what suits you and your PBC and our commitment to family and friends is a difficult one, with friends though if they are true friends then they will understand. I hope you find a way through the mire of PBC.

    best wishes

  • Hi butterflyEi, I hope you are doing well. I haven't had my vit b12 checked yet. I am taking vit d at 50000 once a week for at least 5 more months. I was hoping it would help, guess I will have to wait and see. How long were you on urso before you noticed a difference in your liver levels? My girls (9 ,15 and 24) are always talking about how I can't remember anything. Do you have any problems with hair loss? I wondered it could be related to PBC. Thank you for your advice. Take care.

    Lisa

  • Hi Lisa

    I cannot say about the liver levels as there was a period of time of denial - nothing wrong with me - (lol) and latterly on asking the GP my question was dismissed and I am not a pushy sort but I know that I should toughen up!

    As to hair, I have always had thin hair and as I age it seems thinner. Have a look at this livingwithpbc.com/pbc-livin...

    As it shows different women it may give you an idea about hair.

    Hope this of some use.

    best wishes

  • Infortinately yhe aches etc have stayed witj me even though my ltfs stabolised theu are not normal.theu should have explained that the urso helps slow the damage to the liver but does not take away the fayigue.

    Pacing is the best thing i can suggest.

    Ask to see a liver specialist rather than a gastro as they can give more info.get some info from the pbc foundation and show it to your family.THIS is one of the thimgs i fnd most frustratimg ...people just domt get it

    Give them it printed and maybe that will help

    Cazer.

  • Hi cazer..How long did it take for the Urso to help? I have been on it for 6 months and my levels continue to rise. I will check into seeing a liver specialist. Thank you for the advice. Take care.

    Lisa

  • Hi sorry for not replying sooner....urso helped with lfts omproved but mine never went completely back to normal.the itch seems to be worse if i get too hot and the more i do especially at night... keep the covers off feet. I didnt wear socks for a long time.

    Try to pace yourself..

    Dont do too much leave the heavy stuff use flash wipes for bathrooms.no one died from dust so try and ignore it as best you can

    Do the fun things with your friends or family rather than the chores

    Eat smaller portions more often that will help with nausea and stomach.not too much fat.avoid too much orange juice.drink plenty of water

    I usually eat some biscuit or cereal before i get out of bed.

    Dont forget to ask what pain killers they are happy for you to have.no point suffering pain for the sake of it.hope this helps cazer.

  • Hi lisa just been wondering how u are doing and if u have are amy thhe wizer

    Cazer.

  • Hi cazer..I still have the muscle and joint pain so I don't know if that problem is because of the low Vit D.I talked to my GP on Friday and she said I should be feeling better since being on the Vit D. I am going to see her Monday so maybe they will figure out something. I also go back to my rheumy next week. Tramadol is the only thing my rheumy wants me to take for pain because he says the next type would be a narcotic and doesn't really want me taking anything like that. I've been on tramadol for 2 yrs now. The fatigue is still an issue but, I do try and slow things down and nap when kiddos are at school. I have learned I can get a little more done at nite since I have trouble sleeping anyway. I don't think the higher dose of hydroxyzine for itching is helping much. I get more labs dine next month so hopefully they will show the Urso is starting to work. I just try and not let things upset me and not worry about what others think or say. I didn't mean to write a book. Thank you for asking. Hope you are well.

    Lisa

  • Glad u are managing a little better ....i think the only way ive survived living with it is to pace myself and use as many shortcuts as i can.have you a partner ? Get him to do the heavier stuff like changing beds hoovering ....they are so energy sapping.try not to do housework in the same day as other things or if youve got a heavy day coming the next day.

    The pain leg ache you talk about is quite common with all autoimmine conditions...with pbc most people make antimitocondrial antibodies which i dont know if you remember from biology at school are the squiggly bits in the cells so if our own systems are breaking down the mitochondria...the energy making bit then it would seem logical that we have less energy.i also read some research that said the lactic acid that everyone makes when we enercize or do things is not broken as quickly in pbc patients which give us more achiness.

    I hate to say it but i think that your doc barking up the wrong tree with the pains/vit d you probably need it to help prevent osteoporosis but im not sure its going to improve the bone pain.never know you luck though.

    Also what is the tablet for itching..is it an antihistamine?these dont tend to work apart from the fact they can subdue you slightly.i take an antihistamine at night at that just makes me sligjtly more sleepy whicj helps a little.

  • What is the hydrloxyzine?nit heard if that one.questran s usually give for itch in pbc.really tjink ur gp needs to send you to liver specialist as they will know more about it.they dont seem to you enough info.ask about questran but if the doc hasnt heard of it them you could ask to go to a liver unit

    .

    Especially if your ltfs havent settled.i go to queen elizabeths in birmingham even though i live in somerset.this is also good for shutting people up and taking your symptoms seriously if you are going to a proper department.think you should say to doc and rhemy that most people with see a liver specialist.

    Try not to b fobbed off.

    A specialist will do all the relevant blood test and check vit/min levels.also have you had a bone scan? Good luck with docs.

    P.s get a rota written for chores for kids thats what i did .yours may b good anyway but a list is less easy to argue with !!! I have 3boys 1girl they were 9 7 3 and a bump when i was first ill.thats 17 yrs ago 2now finushed uni amd working in lecturing and physio 3rd a contract worker and 17yr old at college..

    We survived to tell the tale but it has been hard!!best wishes cazer

  • Hydroxyzine is used an an antihistamine and several other things. I looked it up when I was first put on it. I go to a gastrointerologist. That is who gave it to me. My gastro didn't say anything when I told her that my GP put me on vit d. I would of thought the gastro would have checked my vit and min levels. I have not had a bone scan. Is that something that is usually done with PBC? I've only had an ultrasound, bloodwork. I did have an endoscopy and a biopsy. I am having another ultrasound next month. My gastro does blood work every 6 months and by GP every 3 months. Hopefully I will find out something when I go back to GP. I also go back to rheumy this week. I am a single mom. Take care

    Lisa

  • Yeah bone scan is to see if lack of absorption of vit etc has caused thinning.

    They are doing right things but i would still push for hepatologist as they have a bit more specific knowledge on rarer diseases.

    Antihistamines possobly help a little with but dont really work.questron is what is used for itch in pbc so thats why i say you could do with seeing liver specialist.look on pbc foundation website and you can always show gp some of this.if next lot of blds no better you need better advice.

    If u can get your girls to do the heavy stuff explain you cant do it all

    I know its hard...teenagers dont like moving do they but dont try and do everthing good luck.x

  • I have heard that if you have PBC, but Ursodiol does not stabilize ALP levels, you might also have Autoimmune Hepatitis. Have you been tested for AIH? I think there is a specific blood test for it. Having one autoimmune disease can put you at higher risk for having another one, and after 6 months I of Urso I don't think its normal for your ALP to be rising. If its going up by a few points, that might not be too bad, but if it is rising by 30 or more, that doesn't sound right.

  • I was tested for hepatitis but I did not have it. Is there a difference in that and AIH? I go back to GP on Monday.

  • There is Hepatitis A, B, and C, but then there is also Autoimmune Hepatitis. Keep us posted. I hope you feel better soon!

  • I will ask my GP about autoimmune hepatitis test. Thank you and I will keep you informed.

    Lisa

  • Also i am almost nocturnal.

    .cant sleep at night exhausred all day.i am in car at mo.

    Hubby driving bit bumpy so will message later with tips on help with itch etc.cazer

  • I have found that sleeping with a humidifier in my room helps the itching. It's not totally gone but it was a remarkable difference and now I am able to sleep most of the night which helps with fatigue during the day. Hope that helps a bit.

  • Hi 7WendyL. I am willing to try anything. Thank you for the advice.

    Lisa

  • I am new to PBC, I have just recently been diagnosed so I do not know all the ins and outs yet. I did not know that PBC can cause forgetfulness. Is this accurate? Because that would explain a lot, and should my doctor have checked my Vit. D, and B levels as well? I was diagnosed by my Gastro Dr. Who I think is AMAZING, and he sent me to a Hepatologist. The Hepatologist did his own set of tests (twice) because he did not believe that they were accurate. He said I was too young for PBC??? Then performed a liver biopsy, but the tissue that he removed was said to be healthy. Except that I have fatty liver he said. He told me he did not know why my AMA was positive, and my levels were so high, nor why I was experiencing all these symptoms (severe fatigue, really severe joint pain, forgetfulness, the itching 😫 etc.) He took me off the Urso, which I was unaware of until I went to refill my Rx. Then he told me he was going to just keep rechecking my levels every few months. I was confused so I went back to my Gastro Dr. and he was just really confused, he put me right back on the Urso. He said that a healthy biopsy does not mean you do not have PBC. That my AMA being positive, my elevated liver enzymes, plus all my symptoms clearly point to PBC. He could have just biopsied a healthy part of the liver since PBC attacks all different areas of the liver? So I guess my question is...is all of this correct? Should they have tested my Vit. Levels as well? Also if this is all accurate how am I supposed to know what stage I am in?

    Another weird thing is my best friends mom, that I grew up around. I knew that she had cirrhosis of the liver. It's all I was ever told about the subject really. She was diagnosed about 8 years ago. She passed away about 4 years ago from what I thought to be liver cirrhosis. Apparently she had PBC as well. This is very scary to me!!! I remember when I was a teenager, an being at her house, and she would constantly be itching, and complaining of her leg pains. Now I am the one itching, fatigue, and with the constant pain! I thought this was a very manageable disease? I have small children, and I am really scared now.

  • It is manageable if the medication works although my doc. said it doesn't work for everyone. I am in the states and was told that if URSO fails there is another medication that was approved by the FDA (a requirement here)- the second med developed to slow down the disease because there is no cure.

    I feel everyone's pain. For people looking at us it is hard to know and feel there is anything wrong with us because who can tell? I have other auto immune diseases one of which is thyroid related and it was then they found low Vitamin D levels so I am taking 50,000 mg of D twice weekly - ALOT!

    I had mild symptoms at the time and found out I was already Stage 2 via a liver biopsy and was put on Orso immediately. It's been 6 months and most of the liver numbers returned to normal. So I am hopeful.

    I have read many notes on this site and many people have lived with this disease for many years and I am hoping I am one of them. In the meantime I intend to live my life and not take anything for granted. Nothing you can do but take the meds. Sure, it gets to me now and then when I get tired or can't sleep or itch or just plain out get depressed. But once things are under control try to get on with it. You have little children you can enjoy and watch grow up - things have changed with this disease and you can go on to live a normal life.

    All my best - J

  • Hello Lisa,

    I was diagnosed with PBC 2010 and im now 47, on urso and besides the tiredness, my problem is the itching, im taking 25 mg of hydroxyzine, i feel its not eorking for me...

    I was given B12 and doesn't take the fatigue completely, but it does improve it. Give the Vitamin D some time, and before you realize your joints will feel better. I try to walk or bike at least least 4x a day, it helps lots for me.... hang in there and stay possitive, dont let the frustration take over....

    Best wishes...

    Rosa

  • How did appt go.x

  • My appt with GP got rescheduled for nxt Monday..I went to rheumy who still says my muscle and joint pain are more than likely caused by the osteo and the PBC..He also took me off of the tramadol since it doesn't seem to be helping but wants me to be off of it til next appt and then will see what to do next. ( that's crazy ) So I can't take anything for any pain now! I am just at a loss for words. Take care.

    Lisa

  • Did u have any luck getting referred to hepatologist or liver unit...they have the latest drugs etc.have u been told u can have paracetemol not ibufropenor asprin.ask about codeine as well.

  • I was told not to take acetaminopen (U.S name). I am going to ask my GP about hepatologist on visit Monday.

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