Guest guest Posted May 27, 2005 Report Share Posted May 27, 2005 I would be happy to talk to Dr. Harpavat about anything this group wants me to. She is a wonderful doctor and very friendly. I will wait to hear from the newsletter editors to hear if they are interested in the study or an article from her. After Memorial Day I will give her a call to ask if there is any updated literature available regarding her findings. I know that Suzanne is in her 18th month of participation, and the participation period is 24 months. PSC never came up when discussing this with Dr. H., she just talked about UC and the increased incidence of osteoporosis in children with IBD. Joanne, I didn't know that Todd was dx'd with osteoporosis. I wonder how many others in the group have been dx'd (or those the love), it would be interesting to share this with Dr. H. I don't know how to do a survey, perhaps someone could help me set it up? BTW, Suzanne is off to her third formal dance in a month (all different dates) - she has these boys running in circles! She is still on cortenemas, into her 4th week of usage, trying to avoid oral steroids. She confided that she would rather use enemas for 4 months than go on the steroids again. Through the UC flair up her liver enzymes have remained normal. Have other people in the group (or those they love) experienced the same thing - an IBD flair up not impacting the liver enzymes, or do they usually coincide? Thanks ... LINDA (Mom of Suzanne, 16; UC 1/04, PSC 3/04) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2005 Report Share Posted May 27, 2005 Several years ago my son was diagnosed with osteoporosis. They said at 15 he had the body of a little old lady. They put him on actenol but before they could repeat his bone densities he developed bleeding varices so had to come off of the med. has both chron's and PSC. Martillduq@... wrote: I would be happy to talk to Dr. Harpavat about anything this group wants me to. She is a wonderful doctor and very friendly. I will wait to hear from the newsletter editors to hear if they are interested in the study or an article from her. After Memorial Day I will give her a call to ask if there is any updated literature available regarding her findings. I know that Suzanne is in her 18th month of participation, and the participation period is 24 months. PSC never came up when discussing this with Dr. H., she just talked about UC and the increased incidence of osteoporosis in children with IBD. Joanne, I didn't know that Todd was dx'd with osteoporosis. I wonder how many others in the group have been dx'd (or those the love), it would be interesting to share this with Dr. H. I don't know how to do a survey, perhaps someone could help me set it up?BTW, Suzanne is off to her third formal dance in a month (all different dates) - she has these boys running in circles! She is still on cortenemas, into her 4th week of usage, trying to avoid oral steroids. She confided that she would rather use enemas for 4 months than go on the steroids again. Through the UC flair up her liver enzymes have remained normal. Have other people in the group (or those they love) experienced the same thing - an IBD flair up not impacting the liver enzymes, or do they usually coincide?Thanks ...LINDA(Mom of Suzanne, 16; UC 1/04, PSC 3/04)__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2005 Report Share Posted May 31, 2005 Marti Not that you asked...but if actenol doesn't work, it may not be a total loss. I don't believe the early studies showed that it was superior to other approaches, just that it could add to bone density. Dosing might be an advantage. I couldn't tolerate it either, for different reasons. I had excellent results with large doses of Vit. D and Calcium. Also free weights have been shown to add density. For me, when I was prednisone dependent, it was following my natural tendencies to be an avid gardener. I managed to back the bones back into the normative range when they were 1 & 2 deviations from the norm (fairly bad). The gastro about did a flip when he saw the results of 4-5 years of this. Good luck. All the Bestjd, 44UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3ston City, ILkrmpotich@... Re: Bone Density Several years ago my son was diagnosed with osteoporosis. They said at 15 he had the body of a little old lady. They put him on actenol but before they could repeat his bone densities he developed bleeding varices so had to come off of the med. has both chron's and PSC. Marti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2005 Report Share Posted May 31, 2005 We tried several different calcium with D tabs and so far hasn't found one he tolerates. just this week joined a gym to try to buld up some muscle mass. Maybe it will help the bones too. was told if he worked in the garden he would have to wear gloves to avoid potential exposure to diseases in the soil. Did your Dr tell you this? MartiJD & MARLENE KRMPOTICH wrote: Marti Not that you asked...but if actenol doesn't work, it may not be a total loss. I don't believe the early studies showed that it was superior to other approaches, just that it could add to bone density. Dosing might be an advantage. I couldn't tolerate it either, for different reasons. I had excellent results with large doses of Vit. D and Calcium. Also free weights have been shown to add density. For me, when I was prednisone dependent, it was following my natural tendencies to be an avid gardener. I managed to back the bones back into the normative range when they were 1 & 2 deviations from the norm (fairly bad). The gastro about did a flip when he saw the results of 4-5 years of this. Good luck. All the Bestjd, 44UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3ston City, ILkrmpotich@... Re: Bone Density Several years ago my son was diagnosed with osteoporosis. They said at 15 he had the body of a little old lady. They put him on actenol but before they could repeat his bone densities he developed bleeding varices so had to come off of the med. has both chron's and PSC. Marti Discover Yahoo! Stay in touch with email, IM, photo sharing more. Check it out! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 How long since transplant? My husband Dr. told him he isn't allowed to do any gardening for the first 4 months and then after that wear mask and gloves. His Dr. also prescibed Androgel (testosterone) to help build muscle mass. You might want to ask Dr. about that. Good Luck and Take Care Tina Marti wrote: We tried several different calcium with D tabs and so far hasn't found one he tolerates. just this week joined a gym to try to buld up some muscle mass. Maybe it will help the bones too. was told if he worked in the garden he would have to wear gloves to avoid potential exposure to diseases in the soil. Did your Dr tell you this? MartiJD & MARLENE KRMPOTICH wrote: Marti Not that you asked...but if actenol doesn't work, it may not be a total loss. I don't believe the early studies showed that it was superior to other approaches, just that it could add to bone density. Dosing might be an advantage. I couldn't tolerate it either, for different reasons. I had excellent results with large doses of Vit. D and Calcium. Also free weights have been shown to add density. For me, when I was prednisone dependent, it was following my natural tendencies to be an avid gardener. I managed to back the bones back into the normative range when they were 1 & 2 deviations from the norm (fairly bad). The gastro about did a flip when he saw the results of 4-5 years of this. Good luck. All the Bestjd, 44UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3ston City, ILkrmpotich@... Re: Bone Density Several years ago my son was diagnosed with osteoporosis. They said at 15 he had the body of a little old lady. They put him on actenol but before they could repeat his bone densities he developed bleeding varices so had to come off of the med. has both chron's and PSC. Marti Discover Yahoo!Stay in touch with email, IM, photo sharing & more. Check it out! Discover Yahoo! Get on-the-go sports scores, stock quotes, news more. Check it out! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 mike is a year post transplant and just had a bone density scan - he is showing some signs of bone loss - so they've put him on calcium/magnesium with vitamin d - and told him to get back to the gym.... hmmm, wouldn't mind him getting a blast of testosterone though.....(did I say that?) have a good one folks... Patti " if you don't know where you're going, any road will take you there " > >Reply-To: >To: >Subject: Re: Bone Density >Date: Wed, 1 Jun 2005 07:26:47 -0700 (PDT) > >How long since transplant? My husband Dr. told him he isn't allowed >to do any gardening for the first 4 months and then after that wear mask >and gloves. His Dr. also prescibed Androgel (testosterone) to help build >muscle mass. You might want to ask Dr. about that. Good Luck and Take Care >Tina > > >Marti wrote: >We tried several different calcium with D tabs and so far hasn't found one >he tolerates. just this week joined a gym to try to buld up some >muscle mass. Maybe it will help the bones too. was told if he worked >in the garden he would have to wear gloves to avoid potential exposure to >diseases in the soil. Did your Dr tell you this? >Marti > >JD & MARLENE KRMPOTICH wrote: >Marti > >Not that you asked...but if actenol doesn't work, it may not be a total >loss. I don't believe the early studies showed that it was superior to >other approaches, just that it could add to bone density. Dosing might be >an advantage. I couldn't tolerate it either, for different reasons. I had >excellent results with large doses of Vit. D and Calcium. Also free weights >have been shown to add density. For me, when I was prednisone dependent, it >was following my natural tendencies to be an avid gardener. I managed to >back the bones back into the normative range when they were 1 & 2 >deviations from the norm (fairly bad). The gastro about did a flip when he >saw the results of 4-5 years of this. Good luck. > >All the Best > >jd, 44 >UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3 >ston City, IL >krmpotich@... > > Re: Bone Density > > > >Several years ago my son was diagnosed with osteoporosis. They said at 15 >he had the body of a little old lady. They put him on actenol but before >they could repeat his bone densities he developed bleeding varices so had >to come off of the med. has both chron's and PSC. >Marti > > > > >--------------------------------- >Discover Yahoo! >Stay in touch with email, IM, photo sharing & more. Check it out! > >--------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 AMEN SISTER!!!haha* * wrote: mike is a year post transplant and just had a bone density scan - he is showing some signs of bone loss - so they've put him on calcium/magnesium with vitamin d - and told him to get back to the gym....hmmm, wouldn't mind him getting a blast of testosterone though.....(did I say that?)have a good one folks...Patti"if you don't know where you're going, any road will take you there">>Reply-To: >To: >Subject: Re: Bone Density>Date: Wed, 1 Jun 2005 07:26:47 -0700 (PDT)>>How long since transplant? My husband Dr. told him he isn't allowed >to do any gardening for the first 4 months and then after that wear mask >and gloves. His Dr. also prescibed Androgel (testosterone) to help build >muscle mass. You might want to ask Dr. about that. Good Luck and Take Care >Tina>>>Marti wrote:>We tried several different calcium with D tabs and so far hasn't found one >he tolerates. just this week joined a gym to try to buld up some >muscle mass. Maybe it will help the bones too. was told if he worked >in the garden he would have to wear gloves to avoid potential exposure to >diseases in the soil. Did your Dr tell you this?>Marti>>JD & MARLENE KRMPOTICH wrote:>Marti>>Not that you asked...but if actenol doesn't work, it may not be a total >loss. I don't believe the early studies showed that it was superior to >other approaches, just that it could add to bone density. Dosing might be >an advantage. I couldn't tolerate it either, for different reasons. I had >excellent results with large doses of Vit. D and Calcium. Also free weights >have been shown to add density. For me, when I was prednisone dependent, it >was following my natural tendencies to be an avid gardener. I managed to >back the bones back into the normative range when they were 1 & 2 >deviations from the norm (fairly bad). The gastro about did a flip when he >saw the results of 4-5 years of this. Good luck.>>All the Best>>jd, 44>UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3>ston City, IL>krmpotich@...>> Re: Bone Density>>>>Several years ago my son was diagnosed with osteoporosis. They said at 15 >he had the body of a little old lady. They put him on actenol but before >they could repeat his bone densities he developed bleeding varices so had >to come off of the med. has both chron's and PSC.>Marti>>>>>--------------------------------->Discover Yahoo!>Stay in touch with email, IM, photo sharing & more. Check it out!>>---------------------------------> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 testosterone would be nice. He is 19 and looks 15. His voice hasn't dropped he doesn't shve and he is frequently mistaken for a girl which is hard on the ego. I just got a call from the transplant team that 's white count has dropped to .7 so they are going to have to take him off his Celcept all together. Has that happened to anyone else? He is 2 and 1/2 months posttx Marti --- Tina Finn wrote: > How long since transplant? My husband Dr. > told him he isn't allowed to do any gardening for > the first 4 months and then after that wear mask and > gloves. His Dr. also prescibed Androgel > (testosterone) to help build muscle mass. You might > want to ask Dr. about that. Good Luck and Take Care > Tina > > > Marti wrote: > We tried several different calcium with D tabs and > so far hasn't found one he tolerates. just > this week joined a gym to try to buld up some muscle > mass. Maybe it will help the bones too. was > told if he worked in the garden he would have to > wear gloves to avoid potential exposure to diseases > in the soil. Did your Dr tell you this? > Marti > > JD & MARLENE KRMPOTICH > wrote: > Marti > > Not that you asked...but if actenol doesn't work, it > may not be a total loss. I don't believe the early > studies showed that it was superior to other > approaches, just that it could add to bone density. > Dosing might be an advantage. I couldn't tolerate it > either, for different reasons. I had excellent > results with large doses of Vit. D and Calcium. Also > free weights have been shown to add density. For me, > when I was prednisone dependent, it was following my > natural tendencies to be an avid gardener. I managed > to back the bones back into the normative range when > they were 1 & 2 deviations from the norm (fairly > bad). The gastro about did a flip when he saw the > results of 4-5 years of this. Good luck. > > All the Best > > jd, 44 > UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC > 2004, Stage 3 > ston City, IL > krmpotich@... > > Re: Bone Density > > > > Several years ago my son was diagnosed with > osteoporosis. They said at 15 he had the body of a > little old lady. They put him on actenol but before > they could repeat his bone densities he developed > bleeding varices so had to come off of the med. > has both chron's and PSC. > Marti > > > > > --------------------------------- > Discover Yahoo! > Stay in touch with email, IM, photo sharing & more. > Check it out! > > --------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 Marti Yes I was told by my primary care doc that the single best thing you could do was "stress" the bones, and so far the best at doing this in a controlled way is lifting weights, so is right on track. I must confess, I never really pressed much iron, but as I say in the past I have gardened with the fever of an obsessed man. In terms of the calcium, I think it is helpful to try different strengths and different times of administration. What works for one....... you know the rest. Another plus of calcium is it tends to quiet the gut and promote constipation, which in the case of UC/Chrons can be a good thing. I too was always reminded of the dangers of immunosuppression via prednisone & oportunistic diseases like you are talking about. Other than the flu (always got it 2-3 times per winter & 2-3 times as long as most anyone else), I never had these problems. I even had several doctors exhaustivly work me up (and over) some years back when they thought (insisted really) I had an opertunistic infection including anything from "Rabbit fever" to limes disease. It was not! It WAS called a refractory colon, which had to go. All the Bestjd, 44UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3ston City, ILkrmpotich@... ----- Quote Link to comment Share on other sites More sharing options...
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