Sclerosing Cholangitis

[SaffaMum]

I have a very complex & extensive surgical history of the liver. Being severely symptomatic the last few years & surgical intervention has not been an option, I have now been diagnosed with SECONDARY Sclerosing Cholangitis. I am writing to you with the hope of some sort of guidance as I feel I have not been given a satisfactory "next steps" plan of action. I am only 32 with two young children & have no quality of life. I am desperate to try improve this & hoping you could please assist or help me with this! When we lived in London I was seen by the team at Royal Free but have now moved to the Midlands. I have both teams from Derby & Nottingham looking after me but have however not been able to offer me any help, instead I have now been referred to the chronic pain team but this appointment is only for the END of DECEMBER! I was told by my specialist nurse about the liver unit in Birmingham & have now requested a referral. There doesn't seem to be much information or literature available on SECONDARY Sclerosing Cholangitis & wondered if anyone is in the same situation!

[slck]

I am not familiar with secondary sclerosing cholangitis, but my son has primary sclerosing cholangitis, and he is doing well, so let me tell you what he is doing about it. (All his liver function values have returned to normal, as well as his inflammation markers) If SSC is similar to PSC in that it is believed to be an auto-immune condition, then you should consider a strategy of treatment that addresses improving your immune system. My son has been successful with a combination of LDN (Low Dose Naltrexone), diet, and vitamin/supplements. If you do not know about LDN, Google it, and read Dudley Delaney's web site, join the Yahoo LDN User Group, and read materials from the LDN Research Trust. They will all provide you with a lot of information about this very innexpensive drug that has had great success with a wide range of auto immune conditons. Google Dr. Burton Berkson and read his books on LDN and Alpha Lipoic Acid, and it will give you a regimen of vitamin supplements that also improves your immune system. Include in those supplements, items such as milk thistle, selenium, B vitamins, glutathione, n-acetyl cysteine, and alpha lipoic acid that will help to detoxify your liver. Lastly, consider going gluten and dairy free, since there is lots of evidence that both of these contribute to conditions of your gut that enable proteins that should not pass through your intestinal wall to leak into your body and set off auto-immune reactions. Contact me if you need additional information.

[SaffaMum in reply to slck]

Thank you for your reply slck! Pleased to hear your son has improved & managing so well. Did you find that you were supported by the dr's who diagnosed him or was it more a search initiated by yourselves with regards to literate, management, alternative therapies, diet etc. I just feel a bit lost in a vast ocean & not quite sure which way to go! Many thanks again

[slck in reply to SaffaMum]

My son's hepatologist, although a world class specialist was not supportive of use of LDN. He knew little about it, and was more interested in giving him URSO and enrolling him in some clinical trials that he was involved in. My general doctor, who is now my son's primary care doctor is very much supportive of alternative therapies, and is familiar with LDN, and very much reliant on vitamin/supplements and diet as a method of treatment.

With there being no mainstream therapy for auto immune liver conditions such as PSC, I spent a great deal of time researching alternative therapies, and made my son go to my doctor, and suggested LDN as an essential part of my son's regimen. While my doctor was familiar with LDN, and was willing to prescribe it, he was not completely convinced that it would have the great results that ultimately occured. It took about 2 months of gradually increasing his LDN dose (from 1 to 3 mg/day) before his liver function values plummeted to near normal, and several more months before they became totally normal. I ascribe most of his success so far to the LDN, although our doctor thinks that the vitamins, supplements and diet also played a significant role. My son also has ulcerative colitis, and still takes other medications for that, but I believe those are probably unnecessary, since the LDN has re-regulated his immune system.

You need to be proactive in your treatment regimen. I know it is difficult and time consuming, and there are many alternative therapies that are, or appear to be "snake oil" therapies. It is difficult to try to sort them out, but there appears to be so much evidence that diet and supplements have some beneficial effects; and that LDN has a good history of being successful at either halting or rolling back the effects of many auto-immune conditions, with few serious side effects. Read through the sources I previously suggested; follow the links to other resources; and if you still have questions, get back to me, and I will see if I can either answer your questions, or direct you to other resources.

[Hidden in reply to slck]

Hi, I was just about to suggest giving up wheat , been reading up on wheat lectin and the impact it has on your intestinal tract .... Good advice from Sick !

I'm going to make some other dietary changes so tomorrow I I will invest in a bread maker and organic oat flour 😊

[chynablue]

Hi SaffaMum,

Secondary Sclerosing Cholangitis is pretty much the same as Primary Sclerosing Cholangitis - inflammatory lesions that cause scarring in the bile ducts. The difference is that a primary disease starts up on its own (like an autoimmune disease), and a secondary disease is caused by another condition.

For example, if you had extensive surgical history with your liver, then it could be that surgical trauma caused the inflammation and scarring. Therefore the disease would be Secondary to surgical trauma. Or, you might have had a bad liver infection that caused the scarring, in which case the disease would be Secondary to infection.

It might be helpful to read the literature on Primary Sclerosing Cholangitis, but just keep in mind that the cause of your condition might be different.

[SaffaMum in reply to chynablue]

Thank you chynablue! All the information & literature seems so overwhelming! Maybe it's just me but I feel quite unsure of where to from here. I know everyone is different but what should be the first port of call? Has anyone else seeked a second or third opinion & if so how? Many thanks in advance

[chynablue in reply to SaffaMum]

I'm in the US, so I am not sure how second opinions can be scheduled outside the US.

But, I would get a copy of your records so that you know more about what is going on. For example, what is the SSC secondary to? Meaning, what is causing it? Perhaps there is an imaging report that could be helpful. They should have done blood work as well. Its good to know what your numbers are especially when it comes to liver function since you have had such extensive history.

If you can get a little more info, there are many here that will be glad to help you decipher what it all means. I agree that you haven't been given satisfactory info or next steps! Its really scary that they tell you a diagnosis, don't explain really what it means, and you don't get any more info until December? Yikes!

[Hidden]

Dear all,

The British Liver Trust does not recommend the use of homeopathic or herbal remedies for those with any liver problems as these have to be processed by the liver and can actually damage the liver and lead to severe illness.

More research needs to be done on the use and safety of such remedies and therapies.

If you have concerns about any prescribed medication or are considering using complementary or alternative remedies &/or therapies always discuss this with your doctor.

For more information, please see this link to our website;

britishlivertrust.org.uk/li...

Best Wishes,

Rebecca