Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 Oh, MB, the itching the constant, never diminishing itching I wake up and find that I'm bleeding where I've been scratching in my sleep. Mine is triggered by uv light. I even get it under light t-shirts, so I have to wear sun cream under my clothes too. Factor 50 or I might as well not bother. I'm taking an antihistimine too, but if it's no better in 4 weeks I'll be referred to a dermatologist. Love Ze xx>> Zena,> Your pft's are very interesting....some areas that one would expect to be terrible in someone with our disease in your case are close to normal and others....well that's why the doc would like to do the pred. Oh trying to get to a balance between slowing the disease down and allowing us to control our weight. It's a dilemma.> Sorry your having the uticaria too.... do you have alot of itching with it? Hope not!!> > Beth > Age 48 Fibrotic NSIP 06/06> > Change everything. Love and Forgive > > > > > > My latest PFT's> > > I saw my chest physician today, my results are FEV1-67%, FVC-90%, FEV1/FVC-78% , TLCO-23%, VA-82%, KCO-31%, these are slightly down on last month. Ideally my doc would like to increase my pred for a while to slow the progression down, but as my weight isn't shifting that's not likely to happen.> Oh well, back again next month if I'm not in having my heart cath > Sunlight has been bringing me out in uticaria, but she's going to put off me seeing a dermatologist for a while as I'm seeing so many at the moment.> Love Ze xx> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 Ze, just jumping in here, hope you don't mind. Since your PF is likely caused by your auto-immune system being screwy, the prednisone is more likely to help slow the progression. Notice I say " likely " to, not that it definitely will. I know the whole thing is a conundrum, as the weight gain that comes with the pred would likely knock you out of the transplant arena, and if you do take the pred it may slow the progression. My PF is also caused by AI disease, but being that I have so many I'm not eligible for transplant. I refuse to take the Pred until they prove beyond a shadow of a doubt that it helps because the side effects are too much for me. Whatever you decide, we're behind you 100%. Wishing you much luck, and lots of prayers! Babs in Texas -- In Breathe-Support , " Zena " wrote: > > > Nope, as far as my lungs go I have PF (probably nsip, but never had a > biopsy) and bronchiataisis, and now PH, but that one's new! I have also > got dermatomyositis, anticardio lipin-antiphospho lipid syndrome (or > possibly the other way around), raynauds, GERD and various allergies. > > I think that's it, but I lose track until something I've forgotten about > acts up! > > Love Ze xx > > > > > > > > > > > > > > > > > > > I saw my chest physician today, my results are FEV1-67%, > > FVC-90%, > > > > > > FEV1/FVC-78%, TLCO-23%, VA-82%, KCO-31%, these are slightly > down > > > on > > > > > last > > > > > > month. Ideally my doc would like to increase my pred for a > while > > > to > > > > > > slow the progression down, but as my weight isn't shifting > > that's > > > > not > > > > > > likely to happen. > > > > > > > > > > > > Oh well, back again next month if I'm not in having my heart > > cath > > > > [8- > > > > > |] > > > > > > > > > > > > Sunlight has been bringing me out in uticaria, but she's going > > to > > > > put > > > > > > off me seeing a dermatologist for a while as I'm seeing so > many > > at > > > > the > > > > > > moment. > > > > > > > > > > > > Love Ze xx > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 Hi Babs. We already know that pred does help me, but I need to lose 3 stone to be listed. I'm having trouble getting any weight off as it is. It is only my weight that is a barrier to transplant, they're not worried about my other stuff, which surprised me. 'Tis all very annoying! Oh well, at least the weather is warming up so a salad isn't such a bad option! Love Ze xx> > > > > > >> > > > > > >> > > > > > > I saw my chest physician today, my results are FEV1-67%,> > > FVC-90%,> > > > > > > FEV1/FVC-78%, TLCO-23%, VA-82%, KCO-31%, these are slightly> > down> > > > on> > > > > > last> > > > > > > month. Ideally my doc would like to increase my pred for a> > while> > > > to> > > > > > > slow the progression down, but as my weight isn't shifting> > > that's> > > > > not> > > > > > > likely to happen.> > > > > > >> > > > > > > Oh well, back again next month if I'm not in having my heart> > > cath> > > > > [8-> > > > > > |]> > > > > > >> > > > > > > Sunlight has been bringing me out in uticaria, but she's going> > > to> > > > > put> > > > > > > off me seeing a dermatologist for a while as I'm seeing so> > many> > > at> > > > > the> > > > > > > moment.> > > > > > >> > > > > > > Love Ze xx> > > > > > >> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 Hi Irene, I'm on the pred already, I have been on it for donkeys years, everytime they tried to get me off of it I would have a bad time and they put me back on it again. I'm currently on 7.5mg, and I'm having trouble losing the weight at that level, but we know with me that weight gain will occur at 10mg, so both myself and my doc are loathe to put it up at the moment. From what I can gather, the tx team don't want you to be on higher than 10 mg pre op, so that the amount they need to give you post op is more effective. Or something! Love Ze xx>> Hi Ze...> Even though you decided not to take Prednisone and I do understand your reasons for not wanting> to take it...is your dr OK with it for now? or eventually down the road, he will ask you to take it?> For me, I know my docs, would have my head off lol!, if I said I'm not taking the medication. I will> have to give a long list of reasons as to why my answer is "NO".> All the Best in losing the weight!Irene> PF 03/07 Raynaud's Disease 09/07> Crohn's Disease 03/95 Asthma 02/92> > > > My latest PFT's> > > I saw my chest physician today, my results are FEV1-67%, FVC-90%, FEV1/FVC-78% , TLCO-23%, VA-82%, KCO-31%, these are slightly down on last month. Ideally my doc would like to increase my pred for a while to slow the progression down, but as my weight isn't shifting that's not likely to happen.> Oh well, back again next month if I'm not in having my heart cath > Sunlight has been bringing me out in uticaria, but she's going to put off me seeing a dermatologist for a while as I'm seeing so many at the moment.> Love Ze xx > > > __________________________________________________________________> Looking for the perfect gift? Give the gift of Flickr! > > http://www.flickr.com/gift/> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 Hi Irene, I'm on the pred already, I have been on it for donkeys years, everytime they tried to get me off of it I would have a bad time and they put me back on it again. I'm currently on 7.5mg, and I'm having trouble losing the weight at that level, but we know with me that weight gain will occur at 10mg, so both myself and my doc are loathe to put it up at the moment. From what I can gather, the tx team don't want you to be on higher than 10 mg pre op, so that the amount they need to give you post op is more effective. Or something! Love Ze xx>> Hi Ze...> Even though you decided not to take Prednisone and I do understand your reasons for not wanting> to take it...is your dr OK with it for now? or eventually down the road, he will ask you to take it?> For me, I know my docs, would have my head off lol!, if I said I'm not taking the medication. I will> have to give a long list of reasons as to why my answer is "NO".> All the Best in losing the weight!Irene> PF 03/07 Raynaud's Disease 09/07> Crohn's Disease 03/95 Asthma 02/92> > > > My latest PFT's> > > I saw my chest physician today, my results are FEV1-67%, FVC-90%, FEV1/FVC-78% , TLCO-23%, VA-82%, KCO-31%, these are slightly down on last month. Ideally my doc would like to increase my pred for a while to slow the progression down, but as my weight isn't shifting that's not likely to happen.> Oh well, back again next month if I'm not in having my heart cath > Sunlight has been bringing me out in uticaria, but she's going to put off me seeing a dermatologist for a while as I'm seeing so many at the moment.> Love Ze xx > > > __________________________________________________________________> Looking for the perfect gift? Give the gift of Flickr! > > http://www.flickr.com/gift/> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 Hi Irene, I'm on the pred already, I have been on it for donkeys years, everytime they tried to get me off of it I would have a bad time and they put me back on it again. I'm currently on 7.5mg, and I'm having trouble losing the weight at that level, but we know with me that weight gain will occur at 10mg, so both myself and my doc are loathe to put it up at the moment. From what I can gather, the tx team don't want you to be on higher than 10 mg pre op, so that the amount they need to give you post op is more effective. Or something! Love Ze xx>> Hi Ze...> Even though you decided not to take Prednisone and I do understand your reasons for not wanting> to take it...is your dr OK with it for now? or eventually down the road, he will ask you to take it?> For me, I know my docs, would have my head off lol!, if I said I'm not taking the medication. I will> have to give a long list of reasons as to why my answer is "NO".> All the Best in losing the weight!Irene> PF 03/07 Raynaud's Disease 09/07> Crohn's Disease 03/95 Asthma 02/92> > > > My latest PFT's> > > I saw my chest physician today, my results are FEV1-67%, FVC-90%, FEV1/FVC-78% , TLCO-23%, VA-82%, KCO-31%, these are slightly down on last month. Ideally my doc would like to increase my pred for a while to slow the progression down, but as my weight isn't shifting that's not likely to happen.> Oh well, back again next month if I'm not in having my heart cath > Sunlight has been bringing me out in uticaria, but she's going to put off me seeing a dermatologist for a while as I'm seeing so many at the moment.> Love Ze xx > > > __________________________________________________________________> Looking for the perfect gift? Give the gift of Flickr! > > http://www.flickr.com/gift/> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 Some docs eh? Well, my left arm currently looks like mince meat, but I can't bear any cloth on it as that irritates it more, so I can't cover it up easily. I have a cream that includes propolis and that is helping. It just doesn't look too pretty! Love Ze xx > > >> > > Zena,> > > Your pft's are very interesting....some areas that one would expect> to> > be terrible in someone with our disease in your case are close to> normal> > and others....well that's why the doc would like to do the pred. Oh> > trying to get to a balance between slowing the disease down and> allowing> > us to control our weight. It's a dilemma.> > > Sorry your having the uticaria too.... do you have alot of itching> > with it? Hope not!!> > >> > > Beth> > > Age 48 Fibrotic NSIP 06/06> > >> > > Change everything. Love and Forgive> > >> > >> > >> > >> > >> > > My latest PFT's> > >> > >> > > I saw my chest physician today, my results are FEV1-67%, FVC-90%,> > FEV1/FVC-78% , TLCO-23%, VA-82%, KCO-31%, these are slightly down on> > last month. Ideally my doc would like to increase my pred for a while> > to slow the progression down, but as my weight isn't shifting that's> not> > likely to happen.> > > Oh well, back again next month if I'm not in having my heart cath> > > Sunlight has been bringing me out in uticaria, but she's going to> put> > off me seeing a dermatologist for a while as I'm seeing so many at the> > moment.> > > Love Ze xx> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 Some docs eh? Well, my left arm currently looks like mince meat, but I can't bear any cloth on it as that irritates it more, so I can't cover it up easily. I have a cream that includes propolis and that is helping. It just doesn't look too pretty! Love Ze xx > > >> > > Zena,> > > Your pft's are very interesting....some areas that one would expect> to> > be terrible in someone with our disease in your case are close to> normal> > and others....well that's why the doc would like to do the pred. Oh> > trying to get to a balance between slowing the disease down and> allowing> > us to control our weight. It's a dilemma.> > > Sorry your having the uticaria too.... do you have alot of itching> > with it? Hope not!!> > >> > > Beth> > > Age 48 Fibrotic NSIP 06/06> > >> > > Change everything. Love and Forgive> > >> > >> > >> > >> > >> > > My latest PFT's> > >> > >> > > I saw my chest physician today, my results are FEV1-67%, FVC-90%,> > FEV1/FVC-78% , TLCO-23%, VA-82%, KCO-31%, these are slightly down on> > last month. Ideally my doc would like to increase my pred for a while> > to slow the progression down, but as my weight isn't shifting that's> not> > likely to happen.> > > Oh well, back again next month if I'm not in having my heart cath> > > Sunlight has been bringing me out in uticaria, but she's going to> put> > off me seeing a dermatologist for a while as I'm seeing so many at the> > moment.> > > Love Ze xx> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 Hi , I've also been told that you shouldn't have carbs in the evening. Basically the energy from carbs can be used immediately, but it is stored if you don't use it, so you've got time to use the energy if you have them with breakfast or lunch, but if you have high carbs in the evening you don't have time to burn the energy off so it is stored for later. I've been lucky with the bones. I had a bone scan last month and my results are still normal hurrah! Love Ze xx >> Zena,> When I was first diagnosed my doctors felt my only option was a transplant, but they decided to try prednisone in case it stopped the rapid progression I was experiencing. It worked. I hate hate hate the prednisone, hate being chubby , hate the bone loss, moon face, etc.. . BUT I am living a very normal life and enjoying my kids and grandkids tremendously. I still have pajama days on occasion, but prior to the prednisone I was getting out of bed only two or three days a week. This week I spent about 16 hours working on my Masters Degree, hosted a birthday party for my daughter in law ( 26 people), went shopping twice, went to church, and had family over for dinner twice. There is no way I could even begin to do any of that if I wasn't on prednisone. There are many diets that work with prednisone, mainly anything that is low carb, low salt, so you can take it without weight gain. I know this decision is like being between a rock and a> hard place and there are no easy answers. Take care-> > Sarcoid/PF 3/2006 California> > > > > My latest PFT's> > > I saw my chest physician today, my results are FEV1-67%, FVC-90%, FEV1/FVC-78% , TLCO-23%, VA-82%, KCO-31%, these are slightly down on last month. Ideally my doc would like to increase my pred for a while to slow the progression down, but as my weight isn't shifting that's not likely to happen.> Oh well, back again next month if I'm not in having my heart cath > Sunlight has been bringing me out in uticaria, but she's going to put off me seeing a dermatologist for a while as I'm seeing so many at the moment.> Love Ze xx> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 Fingers crossed for you MB Love Ze xx> > > > >> > > > > Zena,> > > > > Your pft's are very interesting. ...some areas that one would> > expect> > > to> > > > be terrible in someone with our disease in your case are close to> > > normal> > > > and others....well that's why the doc would like to do the pred. Oh> > > > trying to get to a balance between slowing the disease down and> > > allowing> > > > us to control our weight. It's a dilemma.> > > > > Sorry your having the uticaria too.... do you have alot of itching> > > > with it? Hope not!!> > > > >> > > > > Beth> > > > > Age 48 Fibrotic NSIP 06/06> > > > >> > > > > Change everything. Love and Forgive> > > > >> > > > >> > > > >> > > > >> > > > >> > > > > My latest PFT's> > > > >> > > > >> > > > > I saw my chest physician today, my results are FEV1-67%, FVC-90%,> > > > FEV1/FVC-78% , TLCO-23%, VA-82%, KCO-31%, these are slightly down on> > > > last month. Ideally my doc would like to increase my pred for a> > while> > > > to slow the progression down, but as my weight isn't shifting that's> > > not> > > > likely to happen.> > > > > Oh well, back again next month if I'm not in having my heart cath> > > > > Sunlight has been bringing me out in uticaria, but she's going to> > > put> > > > off me seeing a dermatologist for a while as I'm seeing so many at> > the> > > > moment.> > > > > Love Ze xx> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
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