osteoporosis

[Guest guest]

I recently had a bone density test and the results

came back abnormal. My dr now wants to run an

endoscopy to determine whether I can take one of the

new osteoprosis medications. I have had psc now for

13 years, any supplements, avoidances to help reverse

this trend? Does the existence of osteoporosis

indicate a change in psc condition from one stage to

another.

Thanks

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[Guest guest]

Phil,

It just means that your body is having trouble absorbing the vitamins

you need. Vitamins A, D, E, and K are all " fat soluable " . They have to

be taken with fat and metabolized as part of the fat processing in your

body. When you've had PSC for a long time, your body has trouble taking

up these vitamins. Many PSCers are on supplements for these as well as

calcium. You want to be careful to clear how much of each of these you

should be taking w/ your dr. - too much Vit. A, especially, can be

harmful. They also have had me on folic acid and B12 for years because

I was deficient in both and they're essential (folic acid for colon and

heart health and B12 for the nervous system).

I'm not sure what having osteoporosis means for the stage of your

disease or how fast it is advancing...Sorry. Maybe your doctor can tell

you more? Have you been on prednisone for extended periods - taking it

can make the bone situation MUCH worse, much quicker.

HTH,

Deb in VA

[Guest guest]

Make sure your vit D-25 blood level is over 30.

The best but most expensive OP treatment is probable Forteo, and the

second best (also expensive) is probably IV Boniva

The scope is probably to rule out esphageal problems before starting

oral biphosphninates (fosamax or actoneal or oral boniva)

Just my two cents worth

Von

[Guest guest]

Hello all. My husband was dx in 1994 with PSC. Until 2 years ago had no symptoms, just regular blood work checks. He has also had 5 ERCPs, 3 resulting in pancreatitis and stents/balloon dilations. He is 3000 mg Ursodiol a day, along with Calcium, high blood pressure meds, water pills, and has been told he is in early stage liver failure. His liver enzymes are barely outside of normal range but has now developed diabetes. He was on prednisone for nearly 10 years before being taken off of them last year. However, he has had both his knee's surgically repaired and more recently had an MRI that showed tears in ligaments in his ankle without any injury to have caused it. He has mild bone density loss (bone scan). He also has symptoms of IBD but not diagnosed. He does notice that his joints hurt when the IBD symptoms flare. When liver failure starts to progress what are some of the next symptoms? Is eczema linked to IBD? I am

aware of the ascites, right abdominal pain, itching and jaundice. Any other symptoms that are connected? How about forgettfulness, mood changes, memory issues, fatigue? One other question: a lot of research I have read about post-liver transplant survival rates is 75-80% chance of surviving 3-5 years. Is that until it happens all over again? Anyone out there know of likelihood of living to normal maturity after receiving a transplant for PSC? We also have recently suffered the loss of our 8 year old son (6 months ago) so these symptoms are also grief related. Thank you for sharing your stories. (WA) Husband Tom dx 1994 PSCjumputah wrote: Make sure your vit D-25 blood level is over 30.The best but most expensive OP treatment is probable Forteo, and the second best (also expensive) is probably IV BonivaThe scope is probably to rule out esphageal problems before starting oral biphosphninates (fosamax or actoneal or oral boniva)Just my two cents worthVon

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[Guest guest]

Any other symptoms that are connected? How about forgettfulness, mood changes, memory issues, fatigue? YES I HAVE ALL OF THESE SYMPTOMS...MY LIVER DR IN MIDLAND MI. HAS PUT ME ON "XIFAXAN 200MG" 3 X DAY, THAT HAS HELPED SOMEWHAT. I COULD BE TALKING TO MY FRIEND AND JUST STOP CAUSE I CANT REMEMBER WHAT I WAS SAYING... MOOD CHANGES HAS GOTTEN REAL BAD WHEN MY ASCITE IS ACTING UP, I HAVE DONE THINGS I NEVER WOULD HAVE DONE BEFORE...MY DR INCREASED MY PAXIL. FATIGUE ALL THE TIME THIS LAST WEEK-END I WAS SO TIRED I SLEPT 3 DAYS AWAY.. HOPE THIS HELPS JEANNE Mattich wrote: Hello all. My husband was dx in 1994 with PSC. Until 2 years ago had no symptoms, just regular blood work checks. He has also had 5 ERCPs, 3 resulting in pancreatitis and stents/balloon dilations. He is 3000 mg Ursodiol a day, along with Calcium, high blood pressure meds, water pills, and has been told he is in early stage liver failure. His liver enzymes are barely outside of normal range but has now developed diabetes. He was on prednisone for nearly 10 years before being taken off of them last year. However, he has had both his knee's surgically repaired and more recently had an MRI that showed tears in ligaments in his ankle without any injury to have caused

it. He has mild bone density loss (bone scan). He also has symptoms of IBD but not diagnosed. He does notice that his joints hurt when the IBD symptoms flare. When liver failure starts to progress what are some of the next symptoms? Is eczema linked to IBD? I am aware of the ascites, right abdominal pain, itching and jaundice. Any other symptoms that are connected? How about forgettfulness, mood changes, memory issues, fatigue? One other question: a lot of research I have read about post-liver transplant survival rates is 75-80% chance of surviving 3-5 years. Is that until it happens all over again? Anyone out there know of likelihood of living to normal maturity after receiving a transplant for PSC? We also have recently suffered the loss of our 8 year old son (6 months ago) so these symptoms are also grief related. Thank you for sharing your stories. (WA) Husband Tom dx 1994 PSCjumputah <jumputah (AT) yahoo (DOT) com> wrote: Make sure your vit D-25 blood level is over 30.The best but most expensive OP treatment is probable Forteo, and the second best (also expensive) is probably IV BonivaThe scope is probably to rule out esphageal problems before starting oral biphosphninates (fosamax or actoneal or oral boniva)Just my two cents worthVon Sucker-punch spam with award-winning protection.Try the free Yahoo! Mail Beta.

[Guest guest]

Alison,

So sorry for your situation, especially the loss of your son.

I'm on prednisone for Autoimmune Hepatitis and my bone density test showed

some bone loss. So I just started Fosamax Plus D to prevent osteoporosis.

You may want to check with your husband's hepatologist to see if he should

start that. I also take 1000 mg calcium per day.

My main symptoms of PSC: nausea, fatigue, itching. I'm in stage 2 PSC.

-Marie

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mtagline

[Guest guest]

Hi ;

So sorry to hear about your husband's early stage liver failure, and

the tragic loss of your son. Please accept my condolences. This must

be very difficult for you both.

Some of the signs to look for as liver failure starts to progress are

listed in our brochure:

http://www.pscpartners.org/PSCBrochure.pdf

Although many patients report few, if any, symptoms, some of the

symptoms of PSC include the following:

• Pruritus or intense itching: particularly on soles of hands or

feet, though it can occur anywhere, including in eyes and mouth.

• Fatigue: feeling run down, unable to get enough sleep, flu-like

tiredness.

• Pain: in right side or middle of abdomen towards rib cage. Pain may

be of any intensity and may last for indefinite period.

• Jaundice: yellowing of eyes and skin caused by excess bilirubin

that liver cannot process.

• Chills and fever: signs of bacterial infections in bile ducts

requiring immediate medical attention.

Additionally, signs that PSC has progressed to cirrhosis, and that

liver transplantation may be indicated, include:

• Ascites: buildup of fluids in abdomen.

• Encephalopathy: personality changes, intellectual impairment, and

sleep disturbances caused by buildup of neurotoxins, such as ammonia,

in blood.

• Varices: swollen veins in gastrointestinal tract prone to bleeding.

When gastrointestinal bleeding occurs, medical attention should be

sought immediately, since this condition can be life-threatening.

• Splenomegaly: swollen spleen.

• Reduction in ability of blood to form clots: increase of

prothrombin time or International Normalized Ratio (INR).

• Impaired kidney function: increased serum creatinine levels.

A dreaded complication is cholangiocarcinoma. There may be additional

complications resulting from nutritional (e.g. fat-soluble vitamin)

deficiencies. Long-standing inflammatory bowel disease may result in

osteoporosis, and colon cancer.

But despite all this, survival rates for PSC patients undergoing

liver transplantation seem to be better than all other liver disease

groups; see Figure 6 of this article:

http://www.niddk.nih.gov/fund/other/PSCSept2006.pdf

While the disease can recurr, there is a lot of controversy about the

incidence of recurrence ... the above article gives a range from 1 -

33% ... " the variation related in part to differences in diagnostic

criteria, duration of follow up, and rigor with which the

diagnosis is sought. "

" Overall, the long-term outcome of liver transplantation for PSC has

been excellent, with 10-year survival in Europe being as high as 79%. "

I hope this information helps.

Best regards,

Dave

(father of (21); PSC 07/03; UC 08/03)

> When liver failure starts to progress what are some of the next

symptoms? Is eczema linked to IBD? I am aware of the ascites, right

abdominal pain, itching and jaundice. Any other symptoms that are

connected? How about forgettfulness, mood changes, memory issues,

fatigue?

>

> One other question: a lot of research I have read about post-

liver transplant survival rates is 75-80% chance of surviving 3-5

years. Is that until it happens all over again? Anyone out there

know of likelihood of living to normal maturity after receiving a

transplant for PSC?

>

> We also have recently suffered the loss of our 8 year old son (6

months ago) so these symptoms are also grief related.

>

[Guest guest]

Thank you so much, as well as to others who have responded. I have suspected there is progression, but with the death of our son, it has been hard to differentiate between symptoms possibly related to PSC or "just" grief. He has not had an ERCP for 5 years, which, at that time showed large blockages (75%) in both right and left ducts and a narrowing in the common duct, and blockages throughout the liver. However, I am wondering if our dr. is using terminology I am not understanding: "blockages" translates into chirrossis? Some of you have also indicated you are in a certain stage of PSC, we have never been told a number to establish staging. wrote: Hi ;So sorry to hear about your husband's early stage liver failure, and the tragic loss of your son. Please accept my condolences. This must be very difficult for you both. Some of the signs to look for as liver failure starts to progress are listed in our brochure:http://www.pscpartners.org/PSCBrochure.pdfAlthough many patients report few, if any, symptoms, some of the symptoms of PSC include the following:• Pruritus or intense itching: particularly on soles of hands or feet, though it can occur anywhere, including in eyes and mouth.• Fatigue: feeling run down, unable to get enough sleep, flu-like tiredness.• Pain: in right

side or middle of abdomen towards rib cage. Pain may be of any intensity and may last for indefinite period.• Jaundice: yellowing of eyes and skin caused by excess bilirubin that liver cannot process.• Chills and fever: signs of bacterial infections in bile ducts requiring immediate medical attention.Additionally, signs that PSC has progressed to cirrhosis, and that liver transplantation may be indicated, include:• Ascites: buildup of fluids in abdomen.• Encephalopathy: personality changes, intellectual impairment, and sleep disturbances caused by buildup of neurotoxins, such as ammonia, in blood.• Varices: swollen veins in gastrointestinal tract prone to bleeding. When gastrointestinal bleeding occurs, medical attention should be sought immediately, since this condition can be life-threatening.• Splenomegaly: swollen spleen.• Reduction in ability of blood to form clots:

increase of prothrombin time or International Normalized Ratio (INR).• Impaired kidney function: increased serum creatinine levels.A dreaded complication is cholangiocarcinoma. There may be additional complications resulting from nutritional (e.g. fat-soluble vitamin) deficiencies. Long-standing inflammatory bowel disease may result in osteoporosis, and colon cancer. But despite all this, survival rates for PSC patients undergoing liver transplantation seem to be better than all other liver disease groups; see Figure 6 of this article:http://www.niddk.nih.gov/fund/other/PSCSept2006.pdfWhile the disease can recurr, there is a lot of controversy about the incidence of recurrence ... the above article gives a range from 1 - 33% ... "the variation related in part to differences in diagnostic criteria, duration of follow

up, and rigor with which thediagnosis is sought.""Overall, the long-term outcome of liver transplantation for PSC hasbeen excellent, with 10-year survival in Europe being as high as 79%."I hope this information helps.Best regards,Dave (father of (21); PSC 07/03; UC 08/03)> When liver failure starts to progress what are some of the next symptoms? Is eczema linked to IBD? I am aware of the ascites, right abdominal pain, itching and jaundice. Any other symptoms that are connected? How about forgettfulness, mood changes, memory issues, fatigue? > > One other question: a lot of research I have read about post-liver transplant survival rates is 75-80% chance of surviving 3-5 years. Is that until it happens all over again? Anyone out there know of likelihood of living to normal maturity after receiving a transplant for PSC? > > We also have recently

suffered the loss of our 8 year old son (6 months ago) so these symptoms are also grief related. >

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