Urso and itching

[Rottiemommy]

Hi everyone. I have a quick question. Was anyone’s itching still bad even after taking Urso? My doctor thinks because I’m on Urso and my numbers are going down I should not be itching anymore. It is worse than ever but she won’t beleive me.

Thanks

[Ktltel]

Hi,

If you are expressing a concern to your doctor and he/she doesn't believe you....... you have a bigger problem.

Find a doctor who listens to your concerns and one who understands this disease. I personally haven't had the PBC itch yet. I believe you though. I've read other posts expressing similar concerns.

Stella❤

[Rottiemommy in reply to Ktltel]

Sad part is she won’t officially diagnose me with PBC. I think after today’s apt I will request a new doctor.

Thanks for your reply.

[Sandymh in reply to Rottiemommy]

Hi again. You need to be referred to someone who specialises in the liver x

[PBC2002 in reply to Rottiemommy]

Tell the doc to do blood work and test you for the anti mitochondrial antibody (AMA). If that’s not done, and it should be, get a new doc.

[PBCRobert Partner]

Hi.

Just to clarify, Urso is given to slow down the progress of PBC (damage to the liver). When it works, bloods (or liver tests or even LFTs) will normalise (or nearly).

Urso is not given for symptoms. Yes, there are a small number who feel their symptoms improve but generally that is not what Urso does.

If you have joined the Foundation, you will see our lay version of the EASL Guideline, which shows clearly PBC management has 2 separate parts: disease management (Urso) and symptom management (not Urso).

I hope that helps,

Robert.

[Sandymh in reply to PBCRobert]

Hi Robert. I was pleased to read your post as I did not realise that Urso was only to slow down progress and not for symptoms.

Sandra

[butterflyEi]

Hi Rottiemommy

I was diagnosed in 2006 but had presented to my GP in 1996/7 with symptoms which were put down to depression. From what I have read over the years it is not uncommon for those of us with PBC to find it difficult to get a diagnosis. I was lucky that once being diagnosed my symptoms seemed to disappear and I got on with life. I was dismissed by the then consultant back to the care of my GP and of course this meant I went unmonitored. In 2014 the so called itch of PBC returned with avengence and I had to seek medical help. The GP tinkered with me for about 2 years until I asked to be referred to a specialist however there was a long wait so in desperation I booked a private consultation with a hepatologist who turned out to be the most caring doctor I have ever met.

I was started on cholestyrame 2 sachets a day, it made it better but I was still in extreme discomfort. Rifampicin was added and yet still later Sertraline was added. At last I have some peace in my life although the "itch" is still in the background and ever present.

I cannot see from your profile which country you are from but in the UK the waiting list for appointments is long so if you are able to research your locals hospitals first to find a hepatologist it will cut out some of the wait in case you are referred to a GI specialist first. Gastroenterology covers a wider part of the body and although most should be well qualified to deal with liver problems a Hepatologist is more liver savvy or should be.

One over the counter (in the UK) medication I was prescribed by the GP which worked in part for a short while is an antihistamine called Certraline 2 tablets twice a day. Of course I cannot recommend that you do anything without speaking to your doctor but it is something to bear in mind. I know all to well how miserable life is when the itch is out of control. I also try very hard not to scratch (not easy) so when you do present to the doctor there is nothing for them to see hence their attitude I guess.

As a topical application some report that E45 itch cream works for them, I use a 2% menthol cream, sometimes placing ice over the area will take out some of the heat and confuse the skin long enough for just a moment or two respite.

I see Robert our Administrator has pointed you in the direction of the EASL guidelines in lay form can I add that there is a section for professionals that you can print off and give to your doctor.

And just to add (and I apologise for my long post) my blood results are usually only just above normal and I still have the itch. For some of us our blood results are good and our livers not damaged and yet our symptoms can be horrendous and for others with the same parameters they have no symptoms.

I may have rambled on a bit but I do not believe that my story is unique many of us across the various forums report similar difficulties with the medical profession and in between there are some wonderful medicos out there.

Let us know how you get on.

best wishes

[Jen11804 in reply to butterflyEi]

I also was prescribed cholystyramine. I was taking two packets a day. It really helped. I weaned myself off after about a year and luckily I’m not bad now. I think when my levels went down and I was taking urso regularly my itch really subsided. I know everyone is different but this worked for me. 😊

[Sandymh]

Hi. I was diagnosed Nov 2010 due to intense itching. I've been on Urso and Colestyramine ever since. My itching continued often severe, sometimes milder but never free if. Other drugs gave been suggested by my Gastroenterologist, but I refuse to take them as I dont see the point is possibly causing myself more health problems that can be associated by takjng the new drugs.

Colestyramine s not the most pleasant to take (a fine powder that does not dissolve) which I take in fresh orange juice at breakfast. I can't face taking it in the afternoon too so I have Colesevelam tablets for that dose. I take Urso after evening dinner. Phenergan tablets at night to help me sleep. My itch is at its lowest this past few weeks than its ever been since 2010. Speak to your Dr about medication for your itch. Urso can cause or incease itching. Urso alone does not ease my itch. I hope you remain well and able to get yours under control.

Sandra x

[PBC2002]

Hi, my itching STARTED after taking Urso. Itchy and swollen lips. I stopped for a week and it went away. I just started Urso again this week, and I’m itchy AGAIN. i have a call in to the GI. I do take Claritin or Zyrtec to help with the itching. Hoping the GI will give me another med

[Jen11804 in reply to PBC2002]

You may need another generic brand of urso. I have heard of people not tolerable of urso and who had to take different

[Rottiemommy]

THANKYOU for all your posts. I saw the doctor yesterday for my biopsy results. I do not have PBC or any liver issues at all. Even though all my blood tests showed I have it and all the itching, the doctor gave me a hug and said I can’t help you. The dermatologist also said he couldn’t help me because the itching is liver related. So I requested to see a liver specialist here in the US. The doctor said she would set it up for me. I’m stuck and itching so bad I’m bleeding. So I just wait again and find ways at home to give me temporary relief.

Sorry if this seems sad I just am very frustrated as this happens all the time.

[Sandymh in reply to Rottiemommy]

How frustrating and worrying for you. Just a thought...are you on any regular medications that might be causing you to itch. Hopefully a Hepatologist may have answers and be able to help you.

Sandra

[Jen11804 in reply to Rottiemommy]

Before I started cholestyramine I too was scratching to the point of bleeding I used to dance and honestly had to go to class in long sleeves because it looked like I had a disease on my arms I scratched and broke out so bad.

But now couple years later. I weaned myself off this med and after my levels going down it’s like everything subsided

[marlene124]

My itching also getting worse and I am on Urso for 4 years.

[littysgirl]

I can’t say for sure, but I have been itching like crazy for about two weeks. The fact that it’s hot and humid here makes it worse. I don’t know if it itches more because of the weather or whether I can tolerate it even less than normal because I’m always hot. When I went to the doctor last week. For some reason, my liver function tests were significantly higher than they were last time so maybe they are connected. The doctor just felt that the change in numbers was a fluctuation that happens and he wasn’t concerned and my numbers were not that high, it’s just that last time they were great, in the low normal range which made me feel happy. I will throw this out to you. Last night I was just so crazy from scratching. I have a bandage on my leg right now from my calf to my ankle which is making everything worse, hotter, itchier. Just to try to do anything, I took

a Xyzal pill. It is a 24 hour, over the counter allergy pill. I hate to say this out loud because I’m afraid I will jinx it, but the itching stopped. Did the anti-histamine make the difference? I don’t know. But if you can tolerate taking an allergy pill, you might consider it.

[Evaibrahim60]

Hi Rottie, Iwas diagnosed in 2001 was on Ursofalk from then till this last January. The doctor kept saying it’s doing good for you. April 2016 start itching horribly and tried all the cortisol creamer to get rid of it and it wasn’t doing much at all. Stoped the Ursofalk last January and the itch isn’t even 1% of what it was before. The funny thing is the liver condition causes the itch and the medication to controlled could cause the itch so we usually not sure where it’s coming from only our own experience will determine which is which? I know that in some cases the biopsy isn’t accurate. If they wanted an accurate one they should take from different parts of the liver! Anyway My last hep doctor is redignosing and wouldn’t know anymore til 23/10. I hope you find the medical care you need soon.

[PBC2002]

I began itching when i started taking Urso. It went away after a couple of weeks.