Guest guest Posted March 22, 2008 Report Share Posted March 22, 2008 My sister was diagnosed with PSC about 10 years ago. She was pretty stable until about 2 months ago. She has had a dramatic change with increased nausea and itching and just recently the loss of muscle strengh in her legs and a bit in her arms. She is 74 and has been told she would not be a candidate for a transplant. Does anyone know of any other approachs that could help her improve her strength and over all well being? (She did get a stent about a month ago but the improvement didn't last very long.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2008 Report Share Posted March 22, 2008 Hi; Loss of muscle mass in liver disease could be due to numerous factors. One factor could be low vitamin D status, see for example: Pérez-López FR (2007) Vitamin D and its implications for musculoskeletal health in women: an update. Maturitas. 58: 117-137. http://www.ncbi.nlm.nih.gov/pubmed/17604580 Vitamin D deficieny is common in PSC, particularly in later stages. So one approach would to be have your sister tested for nutrient and vitamin deficiencies, and give supplements accordingly. End-stage liver disease can be accompanied by significant protein- energy malnutrition, and some researchers suggest supplementing with branched-chain amino acids to help yield a sufficient protein supply: Stickel F, Inderbitzin D, Candinas D (2008) Role of nutrition in liver transplantation for end-stage chronic liver disease. Nutr. Rev. 66: 47- 54. http://www.ncbi.nlm.nih.gov/pubmed/18254884 Protein is a major constituent of muscle, and so protein insufficiency could lead to loss of muscle mass. Best regards, Dave (father of (22); PSC 07/03; UC 08/03) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2008 Report Share Posted March 23, 2008 thats sad to hear that but Im a quite young patient diagnosed with PSC 3 years ago and expriencing removal operations in different organs of my digestive tract, I never could do anything with my weight loss and loss of my muscle strength, but as I saw supplements helped me a little and excercising would help. sometimes my thighs get numb it's really serious I really unnderstand your sister , that was my suggestion. Melvyn (20 yrs, Tehran, PSC 2005) (whipple and cholecyctecomy operations) > > My sister was diagnosed with PSC about 10 years ago. She was pretty > stable until about 2 months ago. She has had a dramatic change with > increased nausea and itching and just recently the loss of muscle > strengh in her legs and a bit in her arms. She is 74 and has been told > she would not be a candidate for a transplant. Does anyone know of any > other approachs that could help her improve her strength and over all > well being? (She did get a stent about a month ago but the improvement > didn't last very long.) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2008 Report Share Posted March 23, 2008 thats sad to hear that but Im a quite young patient diagnosed with PSC 3 years ago and expriencing removal operations in different organs of my digestive tract, I never could do anything with my weight loss and loss of my muscle strength, but as I saw supplements helped me a little and excercising would help. sometimes my thighs get numb it's really serious I really unnderstand your sister , that was my suggestion. Melvyn (20 yrs, Tehran, PSC 2005) (whipple and cholecyctecomy operations) > > My sister was diagnosed with PSC about 10 years ago. She was pretty > stable until about 2 months ago. She has had a dramatic change with > increased nausea and itching and just recently the loss of muscle > strengh in her legs and a bit in her arms. She is 74 and has been told > she would not be a candidate for a transplant. Does anyone know of any > other approachs that could help her improve her strength and over all > well being? (She did get a stent about a month ago but the improvement > didn't last very long.) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2008 Report Share Posted March 23, 2008 thats sad to hear that but Im a quite young patient diagnosed with PSC 3 years ago and expriencing removal operations in different organs of my digestive tract, I never could do anything with my weight loss and loss of my muscle strength, but as I saw supplements helped me a little and excercising would help. sometimes my thighs get numb it's really serious I really unnderstand your sister , that was my suggestion. Melvyn (20 yrs, Tehran, PSC 2005) (whipple and cholecyctecomy operations) > > My sister was diagnosed with PSC about 10 years ago. She was pretty > stable until about 2 months ago. She has had a dramatic change with > increased nausea and itching and just recently the loss of muscle > strengh in her legs and a bit in her arms. She is 74 and has been told > she would not be a candidate for a transplant. Does anyone know of any > other approachs that could help her improve her strength and over all > well being? (She did get a stent about a month ago but the improvement > didn't last very long.) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2008 Report Share Posted March 23, 2008 Thanks for your suggestions. She just had blood work done yesterday and her protein level was OK and I know they checked a number of other things as well and all seemed within the normal range. They are waiting for the results from cultures but that will take another couple of days. Right now her doctor wants her to stay in the hospital for observation. She's so weak right now she can't even roll over in bed so I hope they can find out something soon. Vicki (Keena's sister) > > Hi; > > Loss of muscle mass in liver disease could be due to numerous factors. > One factor could be low vitamin D status, see for example: > > Pérez-López FR (2007) Vitamin D and its implications for > musculoskeletal health in women: an update. Maturitas. 58: 117-137. > http://www.ncbi.nlm.nih.gov/pubmed/17604580 > > Vitamin D deficieny is common in PSC, particularly in later stages. > > So one approach would to be have your sister tested for nutrient and > vitamin deficiencies, and give supplements accordingly. > > End-stage liver disease can be accompanied by significant protein- > energy malnutrition, and some researchers suggest supplementing with > branched-chain amino acids to help yield a sufficient protein supply: > > Stickel F, Inderbitzin D, Candinas D (2008) Role of nutrition in liver > transplantation for end-stage chronic liver disease. Nutr. Rev. 66: 47- > 54. > http://www.ncbi.nlm.nih.gov/pubmed/18254884 > > Protein is a major constituent of muscle, and so protein insufficiency > could lead to loss of muscle mass. > > Best regards, > > Dave > (father of (22); PSC 07/03; UC 08/03) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2008 Report Share Posted March 23, 2008 Thanks for your suggestions. She just had blood work done yesterday and her protein level was OK and I know they checked a number of other things as well and all seemed within the normal range. They are waiting for the results from cultures but that will take another couple of days. Right now her doctor wants her to stay in the hospital for observation. She's so weak right now she can't even roll over in bed so I hope they can find out something soon. Vicki (Keena's sister) > > Hi; > > Loss of muscle mass in liver disease could be due to numerous factors. > One factor could be low vitamin D status, see for example: > > Pérez-López FR (2007) Vitamin D and its implications for > musculoskeletal health in women: an update. Maturitas. 58: 117-137. > http://www.ncbi.nlm.nih.gov/pubmed/17604580 > > Vitamin D deficieny is common in PSC, particularly in later stages. > > So one approach would to be have your sister tested for nutrient and > vitamin deficiencies, and give supplements accordingly. > > End-stage liver disease can be accompanied by significant protein- > energy malnutrition, and some researchers suggest supplementing with > branched-chain amino acids to help yield a sufficient protein supply: > > Stickel F, Inderbitzin D, Candinas D (2008) Role of nutrition in liver > transplantation for end-stage chronic liver disease. Nutr. Rev. 66: 47- > 54. > http://www.ncbi.nlm.nih.gov/pubmed/18254884 > > Protein is a major constituent of muscle, and so protein insufficiency > could lead to loss of muscle mass. > > Best regards, > > Dave > (father of (22); PSC 07/03; UC 08/03) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2008 Report Share Posted March 25, 2008 > My sister was diagnosed with PSC about 10 years ago. She was pretty stable until about 2 months ago. She has had a dramatic change with increased nausea and itching and just recently the loss of muscle strengh in her legs and a bit in her arms. She is 74 and has been told she would not be a candidate for a transplant. Does anyone know of any other approachs that could help her improve her strength and over all well being? (She did get a stent about a month ago but the improvement didn't last very long.) I'm very sorry to hear about the changes your sister has experienced. Is muscle weakness a PSC or IBD thing? I didn't know that. Is it possible something else is causing this? Your sister's age fits w/ degenerative disc disease and spinal stenosis. The loss of strength or 'weakness' could be due to compression on nerves or the spinal cord from DDD. I was told it's fairly common as you age, esp in your 60's - 70's. Even though it is less common in my age group (I'm 38), I have it in both my neck/cervical and lower back/lumbar and have the 'weakness' and fatigue in my arms and legs, a loss of strength more notable on my right side, and some other problems b/c of it (numbness, pain, lessened mobility, stiffness, & aching). If the loss of strength isn't a psc/ibd thing after all and it is possible your sister has DDD compression (and it isn't too severe yet), conservative treatments can help a lot (meds, physical therapy, and such). If it is severe, there are other options. It is best diagnosed by MRI (doesn't always show up -or show up well enough- on a regular x-ray). Just in case it's a possibility w/ your sister, I thought I'd mention it. As for the increased nausea and itching, I'm just very sorry for these changes... and, even more sorry that your sister was told she was not a candidate for transplant. Would they reconsider if a living donor could be found among family or friends? The bishop out here in Sacramento (CA) where I live was in his elder years when he had his transplant (living donor) due to PSC. I wish you and your sister the best. Meghan, mom to 13yo Wyatt-psc, ibd, fap, a-i hives, gerd Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2008 Report Share Posted March 25, 2008 > My sister was diagnosed with PSC about 10 years ago. She was pretty stable until about 2 months ago. She has had a dramatic change with increased nausea and itching and just recently the loss of muscle strengh in her legs and a bit in her arms. She is 74 and has been told she would not be a candidate for a transplant. Does anyone know of any other approachs that could help her improve her strength and over all well being? (She did get a stent about a month ago but the improvement didn't last very long.) I'm very sorry to hear about the changes your sister has experienced. Is muscle weakness a PSC or IBD thing? I didn't know that. Is it possible something else is causing this? Your sister's age fits w/ degenerative disc disease and spinal stenosis. The loss of strength or 'weakness' could be due to compression on nerves or the spinal cord from DDD. I was told it's fairly common as you age, esp in your 60's - 70's. Even though it is less common in my age group (I'm 38), I have it in both my neck/cervical and lower back/lumbar and have the 'weakness' and fatigue in my arms and legs, a loss of strength more notable on my right side, and some other problems b/c of it (numbness, pain, lessened mobility, stiffness, & aching). If the loss of strength isn't a psc/ibd thing after all and it is possible your sister has DDD compression (and it isn't too severe yet), conservative treatments can help a lot (meds, physical therapy, and such). If it is severe, there are other options. It is best diagnosed by MRI (doesn't always show up -or show up well enough- on a regular x-ray). Just in case it's a possibility w/ your sister, I thought I'd mention it. As for the increased nausea and itching, I'm just very sorry for these changes... and, even more sorry that your sister was told she was not a candidate for transplant. Would they reconsider if a living donor could be found among family or friends? The bishop out here in Sacramento (CA) where I live was in his elder years when he had his transplant (living donor) due to PSC. I wish you and your sister the best. Meghan, mom to 13yo Wyatt-psc, ibd, fap, a-i hives, gerd Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2008 Report Share Posted March 25, 2008 > My sister was diagnosed with PSC about 10 years ago. She was pretty stable until about 2 months ago. She has had a dramatic change with increased nausea and itching and just recently the loss of muscle strengh in her legs and a bit in her arms. She is 74 and has been told she would not be a candidate for a transplant. Does anyone know of any other approachs that could help her improve her strength and over all well being? (She did get a stent about a month ago but the improvement didn't last very long.) I'm very sorry to hear about the changes your sister has experienced. Is muscle weakness a PSC or IBD thing? I didn't know that. Is it possible something else is causing this? Your sister's age fits w/ degenerative disc disease and spinal stenosis. The loss of strength or 'weakness' could be due to compression on nerves or the spinal cord from DDD. I was told it's fairly common as you age, esp in your 60's - 70's. Even though it is less common in my age group (I'm 38), I have it in both my neck/cervical and lower back/lumbar and have the 'weakness' and fatigue in my arms and legs, a loss of strength more notable on my right side, and some other problems b/c of it (numbness, pain, lessened mobility, stiffness, & aching). If the loss of strength isn't a psc/ibd thing after all and it is possible your sister has DDD compression (and it isn't too severe yet), conservative treatments can help a lot (meds, physical therapy, and such). If it is severe, there are other options. It is best diagnosed by MRI (doesn't always show up -or show up well enough- on a regular x-ray). Just in case it's a possibility w/ your sister, I thought I'd mention it. As for the increased nausea and itching, I'm just very sorry for these changes... and, even more sorry that your sister was told she was not a candidate for transplant. Would they reconsider if a living donor could be found among family or friends? The bishop out here in Sacramento (CA) where I live was in his elder years when he had his transplant (living donor) due to PSC. I wish you and your sister the best. Meghan, mom to 13yo Wyatt-psc, ibd, fap, a-i hives, gerd Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2008 Report Share Posted March 25, 2008 Hi Vicki; I hope that Keena is doing better, and that blood work has revealed something that can be easily corrected for your sister. I've been puzzling over this for the last few days, and the only thing I can think of as an explanation for your Keena's sudden loss of muscle strength and movement difficulties is excess copper. Copper accumulation is not uncommon in PSC: Gross JB Jr, Ludwig J, Wiesner RH, McCall JT, LaRusso NF 1985 Abnormalities in tests of copper metabolism in primary sclerosing cholangitis. Gastroenterology 89: 272-278. http://www.ncbi.nlm.nih.gov/pubmed/4007418 Copper accumulation occurs in 's disease and can lead to weakness and difficulty moving arms and legs, and many other symptoms: http://www.nlm.nih.gov/medlineplus/ency/article/000785.htm I thought I should mention this as a remote possibilty to consider if other tests have not yet identified the cause? Best regards, Dave (father of (22); PSC 07/03; UC 08/03) > > Thanks for your suggestions. > She just had blood work done yesterday and her protein level was OK > and I know they checked a number of other things as well and all > seemed within the normal range. They are waiting for the results from > cultures but that will take another couple of days. Right now her > doctor wants her to stay in the hospital for observation. She's so > weak right now she can't even roll over in bed so I hope they can > find out something soon. > > Vicki (Keena's sister) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2008 Report Share Posted March 25, 2008 Hi Vicki; I hope that Keena is doing better, and that blood work has revealed something that can be easily corrected for your sister. I've been puzzling over this for the last few days, and the only thing I can think of as an explanation for your Keena's sudden loss of muscle strength and movement difficulties is excess copper. Copper accumulation is not uncommon in PSC: Gross JB Jr, Ludwig J, Wiesner RH, McCall JT, LaRusso NF 1985 Abnormalities in tests of copper metabolism in primary sclerosing cholangitis. Gastroenterology 89: 272-278. http://www.ncbi.nlm.nih.gov/pubmed/4007418 Copper accumulation occurs in 's disease and can lead to weakness and difficulty moving arms and legs, and many other symptoms: http://www.nlm.nih.gov/medlineplus/ency/article/000785.htm I thought I should mention this as a remote possibilty to consider if other tests have not yet identified the cause? Best regards, Dave (father of (22); PSC 07/03; UC 08/03) > > Thanks for your suggestions. > She just had blood work done yesterday and her protein level was OK > and I know they checked a number of other things as well and all > seemed within the normal range. They are waiting for the results from > cultures but that will take another couple of days. Right now her > doctor wants her to stay in the hospital for observation. She's so > weak right now she can't even roll over in bed so I hope they can > find out something soon. > > Vicki (Keena's sister) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2008 Report Share Posted March 25, 2008 Hi Vicki; I hope that Keena is doing better, and that blood work has revealed something that can be easily corrected for your sister. I've been puzzling over this for the last few days, and the only thing I can think of as an explanation for your Keena's sudden loss of muscle strength and movement difficulties is excess copper. Copper accumulation is not uncommon in PSC: Gross JB Jr, Ludwig J, Wiesner RH, McCall JT, LaRusso NF 1985 Abnormalities in tests of copper metabolism in primary sclerosing cholangitis. Gastroenterology 89: 272-278. http://www.ncbi.nlm.nih.gov/pubmed/4007418 Copper accumulation occurs in 's disease and can lead to weakness and difficulty moving arms and legs, and many other symptoms: http://www.nlm.nih.gov/medlineplus/ency/article/000785.htm I thought I should mention this as a remote possibilty to consider if other tests have not yet identified the cause? Best regards, Dave (father of (22); PSC 07/03; UC 08/03) > > Thanks for your suggestions. > She just had blood work done yesterday and her protein level was OK > and I know they checked a number of other things as well and all > seemed within the normal range. They are waiting for the results from > cultures but that will take another couple of days. Right now her > doctor wants her to stay in the hospital for observation. She's so > weak right now she can't even roll over in bed so I hope they can > find out something soon. > > Vicki (Keena's sister) > Quote Link to comment Share on other sites More sharing options...
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