Question:
It seems to me that there are a lot of people who just observe these boards and don't necessarily post to participate. I haven't seen a lot of "I'm clear threads" lately so I think it's time for some of us to refresh the boards with some positive news about our psoriasis treatments that have worked and continue to work.
So.......If you were classified as severe and are now clear, remain clear, and or close to clear please post below. I know a lot of you will want to congratulate those who have cleared but please Pm or start a new thread for them. I think a thread of successes would be good for those who just read.
I'll start mine off in the next post. I hope others will join me.
I started uvbnb at my derms 4X per week in July of 2004, cleared 30% plaque using an agressive approach in about 8 weeks. I have maintained at 0 to 1% coverage with a home uvbnb unit that I got in November 04. Psoriasis remains clear, under control, and my skin is great.
I also retained some psychological services during that time which i found helpful. I also have worked on my diet and try to be a little healthier although it is difficult for me since I have a tough schedule.
Other drugs tried include; topicals, steroids, cyclosporine, and enbrel.
I got P when I was 32 and was severe for 3-4 years before I got it under control.
I'm clear. Ran the psoriasis gammut. Life style & diet adjustments, OTC's, topicals, lights...nothing helped the last flare. Derm suggested Amevive I didn't think the studies showed enough of a success rate and I also had PA. Decided on Enbrel. Used it for 9 months and I am totally clear. I stopped it in Dec because I had the flu and because I was clear I thought it was the wisest thing to do. I feared a flare as some people have reported it happens after stopping some treatments. Thank the P God it didn't happen to me. My skin is clear and my PA is nearly non existant. I know that these aren't necessarily usual results, but I'm sure glad they happened to me and wish they would happen to everyone here.
Annie
Two months of NBUVB treatments @ three times a week. From severe to clear! I have scarring that needs to clear yet, but the leisions are gone except a few tiny ones on the tops of my feet. I'll treat them agressivly with clobetasol. I saw my Drem today and he cut me back to two days a week.
WOO HOO!
I'm clear.
I started Remicade in August 2004, was clear by October 2004, and remain clear today (P and PA)!
I still have an infusion every 6-7 weeks.
Jessie is around 5%. She did 5 months of UVBNB 3x a week. She went from 95% to 10% and we have been using Protopic and the sun to help her out now.
M
This is a great thread! Someday I hope to be clear. Heck i don't need to be clear, I just want to stop itching! so I can sleep
This is a great thread! Someday I hope to be clear. Heck i don't need to be clear, I just want to stop itching! so I can sleep
You know it really is a good thread because sometimes with all that itching we feel that it (psoriasis) will never end. Well, this is hope to you and many others that might just read that it can be done. It might take a lot of hard work and effort but it is possible.
Where are the others, I know there are some that are clear and maintaining on enbrel, quite a few I think. Sally, Jen, Chaim???? Fox? Anyone else. People out there need some hope and there is hope, don't forget it.
I'm almost 100% clear and getting better daily! I've been using UVB for about 2 or 3 months. I was close to 40% covered (maybe more) and now I have about 2 quarters worth of psoriasis on my body.
I CAN'T BELIEVE SALLY HASN'T REPLYED,,,,, :eek: :eek: :eek:
My flare has been quiet,,,shoooooooo,,,I don't want to wake it up!!!!!!!! I'm not saying anything.......... ;)
I just felt it would be redundant, since most of you have already read about how I became clear using my own adapted version of Dr. Pagano's diet, but even more importantly, to me, the powder from the slippery elm bark........and the American saffron tea. I feel the diet is important and in checking out many of diets recommended by the different auto-immune disease groups, it isn't that far off the mark from those very same advisements.....BUT! even tho I think that a healthy, daily regimen can be to our advantage in suppressing the inflammations of the various diseases.......I still give slippery elm and American saffron tea the full benefits of MY clearing.....
to read the whole story click on link
I know psoriasis is tough but is this group really that bad off?
I know psoriasis is tough but is this group really that bad off?
heehee,,,,I am, but keep going,,,,like the enigerizer bunny! :) :)
I started NBUVB 9 weeks ago. I was about 15 % covered with plaque type psoriasis and pustular psoriasis on my fingertips. I am now 1%. My fingernails are even improving. My current light dosage is 2.7 mjoules 3X/wk. In the past I have tried psoriatane 2X which worked but the side effects were not fun. MTX 2X, can you spell nauseau LOL. PUVA 4X,worked every time but the psoralens and my stomach didn't get along. Two of the 4X I did PUVA as part of studies, once to see if accutane helped, it didn't, and once to see if UVB could accelarate the process. I had the most bizzarre tan you can imagine, my right side was sinificantly darker than the left. This was back in the old days at wellman labs in Mass general hospital with Dr. Momtaz (RIP, he was a very nice man) A typical session in the A box could last 30 or 40 minutes and it got pretty hot. I've also done every topical known to man. I've also tried various diets without too much luck.
NBUVB has been the best treatment I have received so far. No meds, and fast excellent results. I may start doing the happy dance at any moment.
Cheers,
Nick
Want a dance partner Nick? Nothing like good results with little side effects.
Annie
Well now, some people for some reason would feel threatened by my response , won't they? :confused: Not in the mood to be a punching bag today, so all I can say is if you're new and interested you can look up my protocol in the thread "For those that have Pm'd me"
I've been on Enbrel since Nov '04, though 2 times I had to take a few weeks off becuase of major sinus infections. I would say I'm about 95% clear. I go to the Derm in 2 weeks and I think he will be very pleased. I have a few tought spots on my elbows, knees and heels which are much improved, but still there, and a few scars which I am hoping will fade. I am now on 1 shot @ 50 mg once a week - gee how I so don't like those premix shots! If I can get myself completely clear, I may be able to go to a shot every other week, but I'm not sure my PA would like that very much.
Dear jgirl and others
I hope that you did not take my posting personally (I've tried diets without too much luck) What I chronicled is my experience. I can think of several reasons why diet may not have worked for me, duration, infection and stress are three possibilities. Regardless of methods, I respect your attitude toward this disease. It is clear that you are proactive about it and wish to fix the problem in the least invasive way. I absolutely do not want anyone to feel as if I am taking a swipe at them. If anyone ever feels as if I am saying something that is hurtful, PM me and we'll work it out if possible.
Peace, please.
Nick
Dear Nick,
I am hurt. You ignored my dance request.
Annie
Hey Nick, Nick...Mr. Ski bunny... :p
YOU win the delightful honor of while not being into alternatives, knowing how to respect us. So thanks :) Unfortunately, some people who do not believe in these methods like to come on alternative based threads and "debate" but we all know the truth of the matter is they are threatened by alternatives for whatever reason, probably something personal, and for some reason resent us for even discussing the matter, and will do anything they can to try to disprove the methods , even though they clearly haven't TRIED them and don't intend to. Some are people honestly aren't looking for an answer to p, they're just people who like to come on and debate and argue as sport (at our expense), That's why I posted that. I don't believe I've seen you do this; if so it's been awhile and I forgot. So keep on tearing up slopes and "don' worry about me", it wasn't at all geared towards you. :p
J stands for Jen
I have only been categorized as severe during one period in my life, and 30 UVB treatments 10 weeks 3x per cleared me nicely.
Good thread Brad, with a lot of interesting testimonials.
hello all,
im happy for all of you that are clear. i wish yous the best
have a good day all
richard :D
After battling with this stubborn illness for over a decade, and using many many different therapies (Enbrel, Amemive, Cyclosporine, BB UVB...etc) - I've finally found a regimen that was successful!!!!!!
1. Home NB UVB light box X 7 days a week
2. Remicade Infusions
3. Low dose of MTX
I think what was different from all I have attempted before, was the COMBINATION of these effective therapies. Attacking the psoriasis from every angle, I went to (I'm guessing...) 50% coverage to CLEAR in about a 2 months
Who knows how long this remission will last, but I'm going to enjoy every minute of it in the mean time! (too bad winter is on the away)
~Massiel
I think this is a good thread. We need to keep it going.
After 41 years of fighting PPPP, I am doing great. By accident, I have found that an antibiotic works nicely for me. My hands and feet are looking and feeling great.
I can't begin to tell of all the things I have tried over the years. And we moved a lot so I have seen a gazillion doctors. The important thing is,,,,I never gave up.
If you quit trying,,,,you will never find what will help you.
So.......If you were classified as severe and are now clear, remain clear, and or close to clear please post below. I know a lot of you will want to congratulate those who have cleared but please Pm or start a new thread for them. I think a thread of successes would be good for those who just read.
I'll start mine off in the next post. I hope others will join me.
Answers:
I started uvbnb at my derms 4X per week in July of 2004, cleared 30% plaque using an agressive approach in about 8 weeks. I have maintained at 0 to 1% coverage with a home uvbnb unit that I got in November 04. Psoriasis remains clear, under control, and my skin is great.
I also retained some psychological services during that time which i found helpful. I also have worked on my diet and try to be a little healthier although it is difficult for me since I have a tough schedule.
Other drugs tried include; topicals, steroids, cyclosporine, and enbrel.
I got P when I was 32 and was severe for 3-4 years before I got it under control.
Answers:
I'm clear. Ran the psoriasis gammut. Life style & diet adjustments, OTC's, topicals, lights...nothing helped the last flare. Derm suggested Amevive I didn't think the studies showed enough of a success rate and I also had PA. Decided on Enbrel. Used it for 9 months and I am totally clear. I stopped it in Dec because I had the flu and because I was clear I thought it was the wisest thing to do. I feared a flare as some people have reported it happens after stopping some treatments. Thank the P God it didn't happen to me. My skin is clear and my PA is nearly non existant. I know that these aren't necessarily usual results, but I'm sure glad they happened to me and wish they would happen to everyone here.
Annie
Answers:
Two months of NBUVB treatments @ three times a week. From severe to clear! I have scarring that needs to clear yet, but the leisions are gone except a few tiny ones on the tops of my feet. I'll treat them agressivly with clobetasol. I saw my Drem today and he cut me back to two days a week.
WOO HOO!
Answers:
I'm clear.
I started Remicade in August 2004, was clear by October 2004, and remain clear today (P and PA)!
I still have an infusion every 6-7 weeks.
Answers:
Jessie is around 5%. She did 5 months of UVBNB 3x a week. She went from 95% to 10% and we have been using Protopic and the sun to help her out now.
M
Answers:
This is a great thread! Someday I hope to be clear. Heck i don't need to be clear, I just want to stop itching! so I can sleep
Answers:
This is a great thread! Someday I hope to be clear. Heck i don't need to be clear, I just want to stop itching! so I can sleep
You know it really is a good thread because sometimes with all that itching we feel that it (psoriasis) will never end. Well, this is hope to you and many others that might just read that it can be done. It might take a lot of hard work and effort but it is possible.
Where are the others, I know there are some that are clear and maintaining on enbrel, quite a few I think. Sally, Jen, Chaim???? Fox? Anyone else. People out there need some hope and there is hope, don't forget it.
Answers:
I'm almost 100% clear and getting better daily! I've been using UVB for about 2 or 3 months. I was close to 40% covered (maybe more) and now I have about 2 quarters worth of psoriasis on my body.
Answers:
I CAN'T BELIEVE SALLY HASN'T REPLYED,,,,, :eek: :eek: :eek:
My flare has been quiet,,,shoooooooo,,,I don't want to wake it up!!!!!!!! I'm not saying anything.......... ;)
Answers:
I just felt it would be redundant, since most of you have already read about how I became clear using my own adapted version of Dr. Pagano's diet, but even more importantly, to me, the powder from the slippery elm bark........and the American saffron tea. I feel the diet is important and in checking out many of diets recommended by the different auto-immune disease groups, it isn't that far off the mark from those very same advisements.....BUT! even tho I think that a healthy, daily regimen can be to our advantage in suppressing the inflammations of the various diseases.......I still give slippery elm and American saffron tea the full benefits of MY clearing.....
to read the whole story click on link
Answers:
I know psoriasis is tough but is this group really that bad off?
Answers:
I know psoriasis is tough but is this group really that bad off?
heehee,,,,I am, but keep going,,,,like the enigerizer bunny! :) :)
Answers:
I started NBUVB 9 weeks ago. I was about 15 % covered with plaque type psoriasis and pustular psoriasis on my fingertips. I am now 1%. My fingernails are even improving. My current light dosage is 2.7 mjoules 3X/wk. In the past I have tried psoriatane 2X which worked but the side effects were not fun. MTX 2X, can you spell nauseau LOL. PUVA 4X,worked every time but the psoralens and my stomach didn't get along. Two of the 4X I did PUVA as part of studies, once to see if accutane helped, it didn't, and once to see if UVB could accelarate the process. I had the most bizzarre tan you can imagine, my right side was sinificantly darker than the left. This was back in the old days at wellman labs in Mass general hospital with Dr. Momtaz (RIP, he was a very nice man) A typical session in the A box could last 30 or 40 minutes and it got pretty hot. I've also done every topical known to man. I've also tried various diets without too much luck.
NBUVB has been the best treatment I have received so far. No meds, and fast excellent results. I may start doing the happy dance at any moment.
Cheers,
Nick
Answers:
Want a dance partner Nick? Nothing like good results with little side effects.
Annie
Answers:
Well now, some people for some reason would feel threatened by my response , won't they? :confused: Not in the mood to be a punching bag today, so all I can say is if you're new and interested you can look up my protocol in the thread "For those that have Pm'd me"
Answers:
I've been on Enbrel since Nov '04, though 2 times I had to take a few weeks off becuase of major sinus infections. I would say I'm about 95% clear. I go to the Derm in 2 weeks and I think he will be very pleased. I have a few tought spots on my elbows, knees and heels which are much improved, but still there, and a few scars which I am hoping will fade. I am now on 1 shot @ 50 mg once a week - gee how I so don't like those premix shots! If I can get myself completely clear, I may be able to go to a shot every other week, but I'm not sure my PA would like that very much.
Answers:
Dear jgirl and others
I hope that you did not take my posting personally (I've tried diets without too much luck) What I chronicled is my experience. I can think of several reasons why diet may not have worked for me, duration, infection and stress are three possibilities. Regardless of methods, I respect your attitude toward this disease. It is clear that you are proactive about it and wish to fix the problem in the least invasive way. I absolutely do not want anyone to feel as if I am taking a swipe at them. If anyone ever feels as if I am saying something that is hurtful, PM me and we'll work it out if possible.
Peace, please.
Nick
Answers:
Dear Nick,
I am hurt. You ignored my dance request.
Annie
Answers:
Hey Nick, Nick...Mr. Ski bunny... :p
YOU win the delightful honor of while not being into alternatives, knowing how to respect us. So thanks :) Unfortunately, some people who do not believe in these methods like to come on alternative based threads and "debate" but we all know the truth of the matter is they are threatened by alternatives for whatever reason, probably something personal, and for some reason resent us for even discussing the matter, and will do anything they can to try to disprove the methods , even though they clearly haven't TRIED them and don't intend to. Some are people honestly aren't looking for an answer to p, they're just people who like to come on and debate and argue as sport (at our expense), That's why I posted that. I don't believe I've seen you do this; if so it's been awhile and I forgot. So keep on tearing up slopes and "don' worry about me", it wasn't at all geared towards you. :p
J stands for Jen
Answers:
I have only been categorized as severe during one period in my life, and 30 UVB treatments 10 weeks 3x per cleared me nicely.
Good thread Brad, with a lot of interesting testimonials.
Answers:
hello all,
im happy for all of you that are clear. i wish yous the best
have a good day all
richard :D
Answers:
After battling with this stubborn illness for over a decade, and using many many different therapies (Enbrel, Amemive, Cyclosporine, BB UVB...etc) - I've finally found a regimen that was successful!!!!!!
1. Home NB UVB light box X 7 days a week
2. Remicade Infusions
3. Low dose of MTX
I think what was different from all I have attempted before, was the COMBINATION of these effective therapies. Attacking the psoriasis from every angle, I went to (I'm guessing...) 50% coverage to CLEAR in about a 2 months
Who knows how long this remission will last, but I'm going to enjoy every minute of it in the mean time! (too bad winter is on the away)
~Massiel
Answers:
I think this is a good thread. We need to keep it going.
After 41 years of fighting PPPP, I am doing great. By accident, I have found that an antibiotic works nicely for me. My hands and feet are looking and feeling great.
I can't begin to tell of all the things I have tried over the years. And we moved a lot so I have seen a gazillion doctors. The important thing is,,,,I never gave up.
If you quit trying,,,,you will never find what will help you.
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