any hope in any where?
Question:
> I just finished nearly 4 months of UVA treatment(PUVA) and it has worked > better than anything I have tried to date. Got about 80% clear and am now > just waiting for the new genetic drug that is due out soon while just > maintaining with a combo of devonex and temovate applied twice daily for 5 > days then rest for 2 days and it seems to be maintaining where I am. I > highly recommend the PUVA if the UVB did you some good. I tried UVB last > year and saw no improvement after 16 weeks at 3 times a week.
my only trouble with puva was I couldn’t keep the medicine downn
Response:
>They may be downplaying it because it is seen as a budget-buster by many >health organizations.
But that would not justify an outright *lie* by the doctor about its effectiveness …
Response:
I just finished nearly 4 months of UVA treatment(PUVA) and it has worked better than anything I have tried to date. Got about 80% clear and am now just waiting for the new genetic drug that is due out soon while just maintaining with a combo of devonex and temovate applied twice daily for 5 days then rest for 2 days and it seems to be maintaining where I am. I highly recommend the PUVA if the UVB did you some good. I tried UVB last year and saw no improvement after 16 weeks at 3 times a week.
– Hide quoted text — Show quoted text -> is there any hope in any where could prevent P from coming back again > and again? I have been carrying these disease for a long time, and > I am very sick of it. > I accepted UVB treatment in the March and I was much better in the > summer. But now, P is coming back again, and this time is worse, and > I never had it on my hand before, this time it shows. Now my husband > said I should go to see Demotologist again, you know my trouble is I > don’t believe them. The only thing they can do is to prescribe some > useless steriod cream. I have tied tons of different medicines(chinese > herb, steriod cream, UVB, some tape… etc). I am very frustrated, I believe > most people in this group have the same feeling like me. I just feel > helpless and hopeless. I am a full time working Mom with two little > babies (2 and 1), I don’t even have time to see Doctor. Has anybody > have any easy and simple way to control P? I need some help to get > through this winter. > Queen
Response:
> I can’t wait another year. It’s a quality of life issue > for me. Too many spots…….hrrmmm.
Exactly. Everybody has their own comfort level with risks and side effects, and it appears every patient also responds differently to treatment. What works for one person may not work for another. I only pray that MTX works for me, because the new treatments (Remicade, Enbrel, monoclonal anti-bodies, etc) are currently running something like $15K/year, and something tells me Mr Bush’s health care plans aren’t going to force any pharmaceutical companies to lower their prices any time soon. > I don’t understand why you people are talking like this.
If you don’t understand it then why are you even bothering to comment? The fact that your condition hasn’t got you down doesn’t mean that the next person is similarly happy and well-adjusted. > I’ve just finished > an experimental treatment that cleared my P nearly completely for many > weeks – that’s never happened in the past 40 years.
It took you 40 years to find something that worked and now you claim to be confused why some of us are feeling stressed? > It’s one of several new > treatments that are coming onto the market in the next year or two. If they > are too expensive for you now they probably won’t be in a few years.
By which time I could easily be in a wheelchair. Yes, I have PA (like upwards of 300,000 others). For some of us this is Very Serious. > Clearly a new age is dawning where more and more people will have access to > these new, effective treatments.
"Eventually" is nice for people who aren’t watching their joints corrode into a mass of scar tissue and bone spurs. "Eventually" is also nice for people whose biological clocks aren’t telling them that they’re running out of time to find a life partner who isn’t grossed out by flakes and cracks and bleeding. > I suggest that anyone that can hold out for another year avoid using > cyclosporin, MTX, strong steroids, and retinoids. Just wait for the new > drugs that will be easier on your bodies.
If I could hold out for another year I would. I can’t. At the moment I can still walk with crutches, and I’m in no hurry to move on to that wheelchair. So bug off. — Nathan Engle Computer Support, IUB Psych Dept "Some Assembly Required"
Response:
Yes I know…….unfortunately…….very poor……have to wait until insurance will pay. – Hide quoted text — Show quoted text – > Then if you got lots of bucks you can get Remicade now. It’s not certified > for Psoriasis but your doctor can give it to you anyway. But your insurance > may not pay. You could do that with Embrel also – but it’s in short supply > and there is a waiting list. > I can’t wait another year. It’s a quality of life issue for me. Too many > spots…….hrrmmm. > > I don’t understand why you people are talking like this. I’ve just > finished > > an experimental treatment that cleared my P nearly completely for many > > weeks – that’s never happened in the past 40 years. It’s one of several > new > > treatments that are coming onto the market in the next year or two. If > they > > are too expensive for you now they probably won’t be in a few years. > > Clearly a new age is dawning where more and more people will have access > to > > these new, effective treatments. > > I suggest that anyone that can hold out for another year avoid using > > cyclosporin, MTX, strong steroids, and retinoids. Just wait for the new > > drugs that will be easier on your bodies. > > > > is there any hope in any where could prevent P from coming back > again > > > > and again? > > > Sure. Some people go into remission, sometimes for > > > completely unexplainable reasons. Not often, but it > > > does happen. > > > > I have been carrying these disease for a long time, and > > > > I am very sick of it. > > > I’m now into my 5th decade coping with it. I know it > > > isn’t much consolation, but the 3rd and 4th decades are > > > easier than the first 2… > > > > I accepted UVB treatment in the March and I was much better in the > > > > summer. > > > I generally clear up some in the summer anyway. > > > > But now, P is coming back again, and this time is worse, and > > > > I never had it on my hand before, this time it shows. > > > I have it on my face (among other places). > > > > Now my husband > > > > said I should go to see Demotologist again, you know my trouble is I > > > > don’t believe them. The only thing they can do is to prescribe some > > > > useless steriod cream. > > > There are other alternatives that make those steroid > > > creams look downright attractive. Several weeks ago I > > > started MTX (a chemotherapy drug) for arthritis, and one > > > of the side effects appears to be that my scalp and face > > > and eyebrows are clearing up. Nothing so far with the > > > finger or toenails, but those take a long time to grow > > > out (especially with MTX which is a cell-growth inhibitor). > > > > I have tied tons of different medicines(chinese > > > > herb, steriod cream, UVB, some tape… etc). I am very frustrated, > > > > I believe most people in this group have the same feeling like > > > > me. I just feel helpless and hopeless. > > > Personally I just feel resigned to it. Except for scraping > > > away the flakes I had pretty much stopped fighting it. > > > Now I may have some relief, but MTX is Harsh with a > > > capital H. If that’s what it took to keep my skin clear > > > it wouldn’t be a good enough reason by itself. > > > > I am a full time working Mom with two little > > > > babies (2 and 1), I don’t even have time to see Doctor. > > > I know what you mean. I don’t have the kids, but my > > > arthritis still slows me down. The worst of it are > > > the days (increasingly frequent recently) when I just > > > can’t get my meds down, never mind all the physical > > > therapy they tell me I should be doing but that I can’t > > > possibly work in either. > > > > Has anybody have any easy and simple way to control P? I > > > > need some help to get through this winter. > > > All I can tell you is what I do – take it one day at a > > > time, call on your emotional support providers to do their > > > job, and allow yourself to have "downtime" when you need > > > it. > > > > Queen > > > — > > > Nathan Engle Computer Support, IUB Psych Dept > > > "Some Assembly Required"
Response:
They may be downplaying it because it is seen as a budget-buster by many health organizations.
– Hide quoted text — Show quoted text -> I’ve been wondering the same thing. As soon as I mentioned therapy other than > the normally accepted ones (mtx, neoral…) she just shrugged me off like a > nuissance. She wasn’t rude or anything but she just said: The results I’ve > seen are better for arthritis than for psoriasis with these 2 drugs. I’m not > impressed. > I’d like to get a 2nd opinion but the derms all know each other and I don’t > want mine to know I’m talking to someone else. Besides, it takes about 6 > months to get a referral in this area. > >I asked my derm about Remicade & Embrel and she said she has not seen very > >good results for psoriasis with these drugs. > Fran, > That’s an odd comment. Has our derm actually seen any patients using > Remicade or Enbrel, or was she just acting snooty to an uppity > patient? > We’ve seen a great many very positive reports here. I’ve heard of few > people who were unresponsive, the problem is that for some, > side-effects prevent its use. However, our samples here are selected > and a bit thin, so it’s possible that someone with really good > information might know about failures. > Frankly, tho, I think your derm was just making noises out of > ignorance. > J.
Response:
Then I would suggest you talk to another doctor. I was cleared of P as were others in the study I was in. The nurse involved said the results were very good for those who obviously were getting the drug as opposed to the placebo. It’s possible some of those who were not seeing an effect were getting the drug and not the placebo – but I doubt it.
– Hide quoted text — Show quoted text -> I asked my derm about Remicade & Embrel and she said she has not seen very > good results for psoriasis with these drugs. > >I suggest that anyone that can hold out for another year avoid using > >cyclosporin, MTX, strong steroids, and retinoids. Just wait for the new > >drugs that will be easier on your bodies. > That’s what I’ve been saying, too, for about two years already. grrr. > And, Remicade and Enbrel are out there today for off-label use on > psoriasis. > OTOH, one of the leading researchers was suggesting that maybe > something like neoral (cyclosporin) would be good to knock down > psoriasis for the first 30 days or so, before going onto one of the > new biologicals, just as mtx is still used with Remicade and Enbrel > (that’s right, isn’t it?). > OTOH, all the current biologicals are immune system (down-)regulators, > and while they do seem to promise better relief than anything > previously, and more safely, they are far from a cure, they still > offer serious side-effects to many, and are certainly expensive and > inconvenient. Progress, yes, and hope, but … > … but we still do not really know what causes psoriasis in the first > place, and there is a reasonable chance that these treatments are > actually misconceived, could even cause further problems a year or > three downstream. Luckily, they’ve all been in test for enough years > that this possibility, of downstream problems, is getting pretty > remote. We’ve all lucked out in this. > So again, yes there is hope, and in the worst case, there are new > treatments which can help us hold on for another three to five years, > until a new generation of research turns out something better. > Ah, I just hope I live long enough to see this problem WIPED OUT. > That’s not quite in sight yet, it looks like it won’t be in the next > twenty years, but I’d bet money (if I could collect) that it will be > inside of one hundred. The real hope is that between this generation > of new treatments and the next, that at least we’ll get it under > sufficient control that nobody has to have it take over their life. > I have a hope that combinations of the biologics will prove more > effective and less costly than any one alone (like quarter-doses of > three different ones, once they’re all fully humanized). Then, if > they can supply them in patches instead of hypos, well, we’d just > about be there. Add maybe a little research to prove that diet > (and/or internal flora and/or insulin levels) are really factors and > how best to control them, and a visit to the derm might actually be > worth something. > Boy, I’m just telling you, compared to even ten years ago, there is a > ton of hope around today and more every day. > J.
Response:
>I suggest that anyone that can hold out for another year avoid using >cyclosporin, MTX, strong steroids, and retinoids. Just wait for the new >drugs that will be easier on your bodies. > That’s what I’ve been saying, too, for about two years already. grrr.
Yes, all the studies, regulatory requirements, and Immunex’ frustrating delays in building up manufacturing capacity for their own product has been as frustrating as waiting for that casserole in the oven to finish baking when you are famished. Sometimes it seems like the mathematical conundrum of continually halving the distance between two points. You can get them closer and closer but you never actually seem to see them meet. 03 baby, 03 is gonna see this stuff approved for P at the local pharmacies – but paying the prices for it…. that’s another matter. > And, Remicade and Enbrel are out there today for off-label use on > psoriasis. > OTOH, one of the leading researchers was suggesting that maybe > something like neoral (cyclosporin) would be good to knock down > psoriasis for the first 30 days or so, before going onto one of the > new biologicals, just as mtx is still used with Remicade and Enbrel > (that’s right, isn’t it?).
I would have blown a gasket from high pressure before Neoral would have helped me, so I had to stop using it without getting much benefit. The way my doctor talked about it, Neoral sounded like putting mothballs in the gas (petrol) tank. You can get a helpful kick out of it, but it aint doing your overall system a lot of good in the long run – YMMV. > OTOH, all the current biologicals are immune system (down-)regulators, > and while they do seem to promise better relief than anything > previously, and more safely, they are far from a cure, they still > offer serious side-effects to many, and are certainly expensive and > inconvenient. Progress, yes, and hope, but …
True. we may not see a cure in our lifetimes. But I’d much rather be comfortable while I wait for one. I’ve tried one of the new biologics – great comfort, no serious problems. > … but we still do not really know what causes psoriasis in the first > place, and there is a reasonable chance that these treatments are > actually misconceived, could even cause further problems a year or > three downstream. Luckily, they’ve all been in test for enough years > that this possibility, of downstream problems, is getting pretty > remote. We’ve all lucked out in this.
Yeah, we with P can look ahead to the people with A who have been taking these drugs for years in trials. If they start keeling over (unlikely) then I’ll go back to Dovonex. > So again, yes there is hope, and in the worst case, there are new > treatments which can help us hold on for another three to five years, > until a new generation of research turns out something better. > Ah, I just hope I live long enough to see this problem WIPED OUT. > That’s not quite in sight yet, it looks like it won’t be in the next > twenty years, but I’d bet money (if I could collect) that it will be > inside of one hundred. The real hope is that between this generation > of new treatments and the next, that at least we’ll get it under > sufficient control that nobody has to have it take over their life.
Certainly if I could have changed things I’d have chosen to be born now, instead of the 50s. But we are seeing an exponential increase in biologic knowledge in the past 5 years. Also, lots of people with money to invest are putting it into drug research since the dot.bomb thing fizzled. > I have a hope that combinations of the biologics will prove more > effective and less costly than any one alone (like quarter-doses of > three different ones, once they’re all fully humanized). Then, if > they can supply them in patches instead of hypos, well, we’d just > about be there. Add maybe a little research to prove that diet > (and/or internal flora and/or insulin levels) are really factors and > how best to control them, and a visit to the derm might actually be > worth something.
Get a good diet, exercise, and save money. If you are at your proper weight you can save on the cost of the biologics since the dose depends on that factor. > Boy, I’m just telling you, compared to even ten years ago, there is a > ton of hope around today and more every day.
Don’t forget there are already some people who have been styling with Embrel or Remicade for their P for a couple of years now. For them the feeling-good train has arrived! – Hide quoted text — Show quoted text -> J.
Response:
Then if you got lots of bucks you can get Remicade now. It’s not certified for Psoriasis but your doctor can give it to you anyway. But your insurance may not pay. You could do that with Embrel also – but it’s in short supply and there is a waiting list.
– Hide quoted text — Show quoted text -> I can’t wait another year. It’s a quality of life issue for me. Too many > spots…….hrrmmm. > I don’t understand why you people are talking like this. I’ve just finished > an experimental treatment that cleared my P nearly completely for many > weeks – that’s never happened in the past 40 years. It’s one of several new > treatments that are coming onto the market in the next year or two. If they > are too expensive for you now they probably won’t be in a few years. > Clearly a new age is dawning where more and more people will have access to > these new, effective treatments. > I suggest that anyone that can hold out for another year avoid using > cyclosporin, MTX, strong steroids, and retinoids. Just wait for the new > drugs that will be easier on your bodies. > > > is there any hope in any where could prevent P from coming back again > > > and again? > > Sure. Some people go into remission, sometimes for > > completely unexplainable reasons. Not often, but it > > does happen. > > > I have been carrying these disease for a long time, and > > > I am very sick of it. > > I’m now into my 5th decade coping with it. I know it > > isn’t much consolation, but the 3rd and 4th decades are > > easier than the first 2… > > > I accepted UVB treatment in the March and I was much better in the > > > summer. > > I generally clear up some in the summer anyway. > > > But now, P is coming back again, and this time is worse, and > > > I never had it on my hand before, this time it shows. > > I have it on my face (among other places). > > > Now my husband > > > said I should go to see Demotologist again, you know my trouble is I > > > don’t believe them. The only thing they can do is to prescribe some > > > useless steriod cream. > > There are other alternatives that make those steroid > > creams look downright attractive. Several weeks ago I > > started MTX (a chemotherapy drug) for arthritis, and one > > of the side effects appears to be that my scalp and face > > and eyebrows are clearing up. Nothing so far with the > > finger or toenails, but those take a long time to grow > > out (especially with MTX which is a cell-growth inhibitor). > > > I have tied tons of different medicines(chinese > > > herb, steriod cream, UVB, some tape… etc). I am very frustrated, > > > I believe most people in this group have the same feeling like > > > me. I just feel helpless and hopeless. > > Personally I just feel resigned to it. Except for scraping > > away the flakes I had pretty much stopped fighting it. > > Now I may have some relief, but MTX is Harsh with a > > capital H. If that’s what it took to keep my skin clear > > it wouldn’t be a good enough reason by itself. > > > I am a full time working Mom with two little > > > babies (2 and 1), I don’t even have time to see Doctor. > > I know what you mean. I don’t have the kids, but my > > arthritis still slows me down. The worst of it are > > the days (increasingly frequent recently) when I just > > can’t get my meds down, never mind all the physical > > therapy they tell me I should be doing but that I can’t > > possibly work in either. > > > Has anybody have any easy and simple way to control P? I > > > need some help to get through this winter. > > All I can tell you is what I do – take it one day at a > > time, call on your emotional support providers to do their > > job, and allow yourself to have "downtime" when you need > > it. > > > Queen > > — > > Nathan Engle Computer Support, IUB Psych Dept > > "Some Assembly Required"
Response:
I’ve been wondering the same thing. As soon as I mentioned therapy other than the normally accepted ones (mtx, neoral…) she just shrugged me off like a nuissance. She wasn’t rude or anything but she just said: The results I’ve seen are better for arthritis than for psoriasis with these 2 drugs. I’m not impressed. I’d like to get a 2nd opinion but the derms all know each other and I don’t want mine to know I’m talking to someone else. Besides, it takes about 6 months to get a referral in this area. – Hide quoted text — Show quoted text ->I asked my derm about Remicade & Embrel and she said she has not seen very >good results for psoriasis with these drugs. > Fran, > That’s an odd comment. Has our derm actually seen any patients using > Remicade or Enbrel, or was she just acting snooty to an uppity > patient? > We’ve seen a great many very positive reports here. I’ve heard of few > people who were unresponsive, the problem is that for some, > side-effects prevent its use. However, our samples here are selected > and a bit thin, so it’s possible that someone with really good > information might know about failures. > Frankly, tho, I think your derm was just making noises out of > ignorance. > J.
Response:
>I asked my derm about Remicade & Embrel and she said she has not seen very >good results for psoriasis with these drugs.
Fran, That’s an odd comment. Has our derm actually seen any patients using Remicade or Enbrel, or was she just acting snooty to an uppity patient? We’ve seen a great many very positive reports here. I’ve heard of few people who were unresponsive, the problem is that for some, side-effects prevent its use. However, our samples here are selected and a bit thin, so it’s possible that someone with really good information might know about failures. Frankly, tho, I think your derm was just making noises out of ignorance. J.
Response:
I can’t wait another year. It’s a quality of life issue for me. Too many spots…….hrrmmm. – Hide quoted text — Show quoted text – > I don’t understand why you people are talking like this. I’ve just finished > an experimental treatment that cleared my P nearly completely for many > weeks – that’s never happened in the past 40 years. It’s one of several new > treatments that are coming onto the market in the next year or two. If they > are too expensive for you now they probably won’t be in a few years. > Clearly a new age is dawning where more and more people will have access to > these new, effective treatments. > I suggest that anyone that can hold out for another year avoid using > cyclosporin, MTX, strong steroids, and retinoids. Just wait for the new > drugs that will be easier on your bodies. > > is there any hope in any where could prevent P from coming back again > > and again? > Sure. Some people go into remission, sometimes for > completely unexplainable reasons. Not often, but it > does happen. > > I have been carrying these disease for a long time, and > > I am very sick of it. > I’m now into my 5th decade coping with it. I know it > isn’t much consolation, but the 3rd and 4th decades are > easier than the first 2… > > I accepted UVB treatment in the March and I was much better in the > > summer. > I generally clear up some in the summer anyway. > > But now, P is coming back again, and this time is worse, and > > I never had it on my hand before, this time it shows. > I have it on my face (among other places). > > Now my husband > > said I should go to see Demotologist again, you know my trouble is I > > don’t believe them. The only thing they can do is to prescribe some > > useless steriod cream. > There are other alternatives that make those steroid > creams look downright attractive. Several weeks ago I > started MTX (a chemotherapy drug) for arthritis, and one > of the side effects appears to be that my scalp and face > and eyebrows are clearing up. Nothing so far with the > finger or toenails, but those take a long time to grow > out (especially with MTX which is a cell-growth inhibitor). > > I have tied tons of different medicines(chinese > > herb, steriod cream, UVB, some tape… etc). I am very frustrated, > > I believe most people in this group have the same feeling like > > me. I just feel helpless and hopeless. > Personally I just feel resigned to it. Except for scraping > away the flakes I had pretty much stopped fighting it. > Now I may have some relief, but MTX is Harsh with a > capital H. If that’s what it took to keep my skin clear > it wouldn’t be a good enough reason by itself. > > I am a full time working Mom with two little > > babies (2 and 1), I don’t even have time to see Doctor. > I know what you mean. I don’t have the kids, but my > arthritis still slows me down. The worst of it are > the days (increasingly frequent recently) when I just > can’t get my meds down, never mind all the physical > therapy they tell me I should be doing but that I can’t > possibly work in either. > > Has anybody have any easy and simple way to control P? I > > need some help to get through this winter. > All I can tell you is what I do – take it one day at a > time, call on your emotional support providers to do their > job, and allow yourself to have "downtime" when you need > it. > > Queen > — > Nathan Engle Computer Support, IUB Psych Dept > "Some Assembly Required"
Response:
I asked my derm about Remicade & Embrel and she said she has not seen very good results for psoriasis with these drugs. – Hide quoted text — Show quoted text ->I suggest that anyone that can hold out for another year avoid using >cyclosporin, MTX, strong steroids, and retinoids. Just wait for the new >drugs that will be easier on your bodies. > That’s what I’ve been saying, too, for about two years already. grrr. > And, Remicade and Enbrel are out there today for off-label use on > psoriasis. > OTOH, one of the leading researchers was suggesting that maybe > something like neoral (cyclosporin) would be good to knock down > psoriasis for the first 30 days or so, before going onto one of the > new biologicals, just as mtx is still used with Remicade and Enbrel > (that’s right, isn’t it?). > OTOH, all the current biologicals are immune system (down-)regulators, > and while they do seem to promise better relief than anything > previously, and more safely, they are far from a cure, they still > offer serious side-effects to many, and are certainly expensive and > inconvenient. Progress, yes, and hope, but … > … but we still do not really know what causes psoriasis in the first > place, and there is a reasonable chance that these treatments are > actually misconceived, could even cause further problems a year or > three downstream. Luckily, they’ve all been in test for enough years > that this possibility, of downstream problems, is getting pretty > remote. We’ve all lucked out in this. > So again, yes there is hope, and in the worst case, there are new > treatments which can help us hold on for another three to five years, > until a new generation of research turns out something better. > Ah, I just hope I live long enough to see this problem WIPED OUT. > That’s not quite in sight yet, it looks like it won’t be in the next > twenty years, but I’d bet money (if I could collect) that it will be > inside of one hundred. The real hope is that between this generation > of new treatments and the next, that at least we’ll get it under > sufficient control that nobody has to have it take over their life. > I have a hope that combinations of the biologics will prove more > effective and less costly than any one alone (like quarter-doses of > three different ones, once they’re all fully humanized). Then, if > they can supply them in patches instead of hypos, well, we’d just > about be there. Add maybe a little research to prove that diet > (and/or internal flora and/or insulin levels) are really factors and > how best to control them, and a visit to the derm might actually be > worth something. > Boy, I’m just telling you, compared to even ten years ago, there is a > ton of hope around today and more every day. > J.
Response:
>I suggest that anyone that can hold out for another year avoid using >cyclosporin, MTX, strong steroids, and retinoids. Just wait for the new >drugs that will be easier on your bodies.
That’s what I’ve been saying, too, for about two years already. grrr. And, Remicade and Enbrel are out there today for off-label use on psoriasis. OTOH, one of the leading researchers was suggesting that maybe something like neoral (cyclosporin) would be good to knock down psoriasis for the first 30 days or so, before going onto one of the new biologicals, just as mtx is still used with Remicade and Enbrel (that’s right, isn’t it?). OTOH, all the current biologicals are immune system (down-)regulators, and while they do seem to promise better relief than anything previously, and more safely, they are far from a cure, they still offer serious side-effects to many, and are certainly expensive and inconvenient. Progress, yes, and hope, but … … but we still do not really know what causes psoriasis in the first place, and there is a reasonable chance that these treatments are actually misconceived, could even cause further problems a year or three downstream. Luckily, they’ve all been in test for enough years that this possibility, of downstream problems, is getting pretty remote. We’ve all lucked out in this. So again, yes there is hope, and in the worst case, there are new treatments which can help us hold on for another three to five years, until a new generation of research turns out something better. Ah, I just hope I live long enough to see this problem WIPED OUT. That’s not quite in sight yet, it looks like it won’t be in the next twenty years, but I’d bet money (if I could collect) that it will be inside of one hundred. The real hope is that between this generation of new treatments and the next, that at least we’ll get it under sufficient control that nobody has to have it take over their life. I have a hope that combinations of the biologics will prove more effective and less costly than any one alone (like quarter-doses of three different ones, once they’re all fully humanized). Then, if they can supply them in patches instead of hypos, well, we’d just about be there. Add maybe a little research to prove that diet (and/or internal flora and/or insulin levels) are really factors and how best to control them, and a visit to the derm might actually be worth something. Boy, I’m just telling you, compared to even ten years ago, there is a ton of hope around today and more every day. J.
Response:
I don’t understand why you people are talking like this. I’ve just finished an experimental treatment that cleared my P nearly completely for many weeks – that’s never happened in the past 40 years. It’s one of several new treatments that are coming onto the market in the next year or two. If they are too expensive for you now they probably won’t be in a few years. Clearly a new age is dawning where more and more people will have access to these new, effective treatments. I suggest that anyone that can hold out for another year avoid using cyclosporin, MTX, strong steroids, and retinoids. Just wait for the new drugs that will be easier on your bodies.
– Hide quoted text — Show quoted text -> is there any hope in any where could prevent P from coming back again > and again? > Sure. Some people go into remission, sometimes for > completely unexplainable reasons. Not often, but it > does happen. > I have been carrying these disease for a long time, and > I am very sick of it. > I’m now into my 5th decade coping with it. I know it > isn’t much consolation, but the 3rd and 4th decades are > easier than the first 2… > I accepted UVB treatment in the March and I was much better in the > summer. > I generally clear up some in the summer anyway. > But now, P is coming back again, and this time is worse, and > I never had it on my hand before, this time it shows. > I have it on my face (among other places). > Now my husband > said I should go to see Demotologist again, you know my trouble is I > don’t believe them. The only thing they can do is to prescribe some > useless steriod cream. > There are other alternatives that make those steroid > creams look downright attractive. Several weeks ago I > started MTX (a chemotherapy drug) for arthritis, and one > of the side effects appears to be that my scalp and face > and eyebrows are clearing up. Nothing so far with the > finger or toenails, but those take a long time to grow > out (especially with MTX which is a cell-growth inhibitor). > I have tied tons of different medicines(chinese > herb, steriod cream, UVB, some tape… etc). I am very frustrated, > I believe most people in this group have the same feeling like > me. I just feel helpless and hopeless. > Personally I just feel resigned to it. Except for scraping > away the flakes I had pretty much stopped fighting it. > Now I may have some relief, but MTX is Harsh with a > capital H. If that’s what it took to keep my skin clear > it wouldn’t be a good enough reason by itself. > I am a full time working Mom with two little > babies (2 and 1), I don’t even have time to see Doctor. > I know what you mean. I don’t have the kids, but my > arthritis still slows me down. The worst of it are > the days (increasingly frequent recently) when I just > can’t get my meds down, never mind all the physical > therapy they tell me I should be doing but that I can’t > possibly work in either. > Has anybody have any easy and simple way to control P? I > need some help to get through this winter. > All I can tell you is what I do – take it one day at a > time, call on your emotional support providers to do their > job, and allow yourself to have "downtime" when you need > it. > Queen > — > Nathan Engle Computer Support, IUB Psych Dept > "Some Assembly Required"
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Kim’s encouragement is always well written and helpful. I will add one thing that I was told about in this very forum about 14 months ago. Try using a coal tar treatment with your light treatment. Be patient, as it takes a long time to show results, 3-4 months for me. I was actually 99% clear for a while. Now, 14 months later it is losing some of its effectiveness but I just came back from my derm yersterday and she was very pleased, especially knowing what I used to look like. I’m about 90% clear now. I’ve added a low UVB treatment to my program, only 30 seconds for each of the four sides of by body (2 minutes total). I’m lucky enough to have a light box at home. My derm wrote me a prescription and my insurance paid for 80% of it. I want to see what happens using a low does before I go up much higher. My derm said that 1+1 equals 3 when you add coal tar and UVB. We’ll see. But you have to be careful that you don’t cause skin damage. We’re all just trying to buy some time until the real good (new) treatments come out and are proven effective and safe. No need to cause some damage that is worse, like skin cancer. I encourage you to try this treatment. If I wasn’t told about it in this forum, I wouldn’t have tried it at all. I’m really glad I did. A lot of the coal tar products are resonably priced. Get the largest container you can and use it 2, 3 even 4 times a day for 3-4 months. If you don’t start to see results in month 3, it may not be working for you. I use Cutar because it only cost $99 for a gallon (I used about a gallon so far) and it smells ok. I am wondering if changing brands will increase my effectiveness. Anyone else use an over-the-coutner coat tar lotion that is reasonably priced? Good luck, Ed
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> is there any hope in any where could prevent P from coming back again > and again?
Sure. Some people go into remission, sometimes for completely unexplainable reasons. Not often, but it does happen. > I have been carrying these disease for a long time, and > I am very sick of it.
I’m now into my 5th decade coping with it. I know it isn’t much consolation, but the 3rd and 4th decades are easier than the first 2… > I accepted UVB treatment in the March and I was much better in the > summer.
I generally clear up some in the summer anyway. > But now, P is coming back again, and this time is worse, and > I never had it on my hand before, this time it shows.
I have it on my face (among other places). > Now my husband > said I should go to see Demotologist again, you know my trouble is I > don’t believe them. The only thing they can do is to prescribe some > useless steriod cream.
There are other alternatives that make those steroid creams look downright attractive. Several weeks ago I started MTX (a chemotherapy drug) for arthritis, and one of the side effects appears to be that my scalp and face and eyebrows are clearing up. Nothing so far with the finger or toenails, but those take a long time to grow out (especially with MTX which is a cell-growth inhibitor). > I have tied tons of different medicines(chinese > herb, steriod cream, UVB, some tape… etc). I am very frustrated, > I believe most people in this group have the same feeling like > me. I just feel helpless and hopeless.
Personally I just feel resigned to it. Except for scraping away the flakes I had pretty much stopped fighting it. Now I may have some relief, but MTX is Harsh with a capital H. If that’s what it took to keep my skin clear it wouldn’t be a good enough reason by itself. > I am a full time working Mom with two little > babies (2 and 1), I don’t even have time to see Doctor.
I know what you mean. I don’t have the kids, but my arthritis still slows me down. The worst of it are the days (increasingly frequent recently) when I just can’t get my meds down, never mind all the physical therapy they tell me I should be doing but that I can’t possibly work in either. > Has anybody have any easy and simple way to control P? I > need some help to get through this winter.
All I can tell you is what I do – take it one day at a time, call on your emotional support providers to do their job, and allow yourself to have "downtime" when you need it. > Queen
– Nathan Engle Computer Support, IUB Psych Dept "Some Assembly Required"
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Your not alone Queen Ma, it is a constant struggle for all of us. Whenever I use uvb treatment my P comes back worse than before. For the present, we can only hope to control it, and the definition of CONTROL varies from person to person.Good luck and hang in there. We are told help is on the way in the form of new kinds of treatment. Hope it comes soon. dennis g
– Hide quoted text — Show quoted text -> is there any hope in any where could prevent P from coming back again > and again? I have been carrying these disease for a long time, and > I am very sick of it. > I accepted UVB treatment in the March and I was much better in the > summer. But now, P is coming back again, and this time is worse, and > I never had it on my hand before, this time it shows. Now my husband > said I should go to see Demotologist again, you know my trouble is I > don’t believe them. The only thing they can do is to prescribe some > useless steriod cream. I have tied tons of different medicines(chinese > herb, steriod cream, UVB, some tape… etc). I am very frustrated, I believe > most people in this group have the same feeling like me. I just feel > helpless and hopeless. I am a full time working Mom with two little > babies (2 and 1), I don’t even have time to see Doctor. Has anybody > have any easy and simple way to control P? I need some help to get > through this winter. > Queen
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>is there any hope in any where could prevent P from coming back again >and again? I have been carrying these disease for a long time, and >I am very sick of it. >I accepted UVB treatment in the March and I was much better in the >summer. But now, P is coming back again, and this time is worse, and >I never had it on my hand before, this time it shows. Now my husband >said I should go to see Demotologist again, you know my trouble is I >don’t believe them. The only thing they can do is to prescribe some >useless steriod cream.
That’s actually not true, as the UVB treatment showed. And if that’s all your dematologist offers, then you should find a new dermatologist. There is still no cure, but there are many, many treatments other than steroids and there are certainly ways to control the disease. The problem is that none of them work for everyone, so you need to work with a derm who is expert enough to find what is best for you. A lot of times that involves a mix of things that includes medicines with avoiding things that might be triggering outbreaks, like stress or certain kinds of detergents and foods (triggers vary from person to person as well). And there are also completely new meds going through FDA testing that aren’t cures, but offer a lot more hope than the sort of steroid based things you are used to. Psoriasis involves your immune system being activated when it shouldn’t be and these new meds involve injections that are targeted at stopping that from happening. They aren’t permanent cures, but people have had long remissions using them in testing and they are signs that researchers really are getting closer to the real cause and a real cure. Hang in there. There are links to a bunch of places with more info about things like treatments in the group FAQ, which has a link in my .sig And while seeing a doctor is tough with kids, but it’s also something you should do for your kids as well as yourself. You’ll be happier with them if you can get your disease under control and you’ll be better able to answer questions they might have when they get older. Oh, and talk with your doctor about how having kids limits your treatment options so he doesn’t mean well by telling you to do something that you just can’t manage when there are other – better for you- options available. best Kim The Psoriasis Newsgroup Resource FAQ can be found at http://www.psoriasisfaq.com but will also be coming soon (twice a month) to a newsgroup near you…
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is there any hope in any where could prevent P from coming back again and again? I have been carrying these disease for a long time, and I am very sick of it. I accepted UVB treatment in the March and I was much better in the summer. But now, P is coming back again, and this time is worse, and I never had it on my hand before, this time it shows. Now my husband said I should go to see Demotologist again, you know my trouble is I don’t believe them. The only thing they can do is to prescribe some useless steriod cream. I have tied tons of different medicines(chinese herb, steriod cream, UVB, some tape… etc). I am very frustrated, I believe most people in this group have the same feeling like me. I just feel helpless and hopeless. I am a full time working Mom with two little babies (2 and 1), I don’t even have time to see Doctor. Has anybody have any easy and simple way to control P? I need some help to get through this winter. Queen
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