Hello

[mataribot]

I'm sure most of us would rather not take the medications, but it's better than the disease

I think it's good for us to have a young 39 year old on the forum to keep Fred in check
I won't tell anyone your real age your secret is safe with us

55

Hmm, I see that "55" scrolling across the bottom of your post!

I'm on quite a few meds, so hate adding another one but yes, I'd probably stick my finger in a light socket if the doc told me it would help at this point. I hope it works, if not then (per doc) we try something else. I'm not sure why Acitretin was his first choice, I only know that even with insurance, it sure ain't cheap!

Keep Fred in check??? Is that even a possibility?

It's cheaper than 20,000 to 60,000 USD cost of biologics and safer than Methotrexate. That combined with age and type of psoriasis is probably the reason he chose the drug, but not definitive. Well, I hope you get some relief soon! A lot of us know how it feels.

[Kat]

Welcome Kat. I hope your treatment goes well and we can learn how you are going in future posts. I found the light treatment successful as have others so I hope you have relief very soon.

Thank you!

[Kat]

I'm sure most of us would rather not take the medications, but it's better than the disease

I think it's good for us to have a young 39 year old on the forum to keep Fred in check
I won't tell anyone your real age your secret is safe with us

55

Hmm, I see that "55" scrolling across the bottom of your post!

I'm on quite a few meds, so hate adding another one but yes, I'd probably stick my finger in a light socket if the doc told me it would help at this point. I hope it works, if not then (per doc) we try something else. I'm not sure why Acitretin was his first choice, I only know that even with insurance, it sure ain't cheap!

Keep Fred in check??? Is that even a possibility?

It's cheaper than 20,000 to 60,000 USD cost of biologics and safer than Methotrexate. That combined with age and type of psoriasis is probably the reason he chose the drug, but not definitive. Well, I hope you get some relief soon! A lot of us know how it feels.

Thank you! I have/had Erythrodermic Psoriasis. The reason I put "had" is from what I've read, it's when you have a particular flare up. But that was what he diagnosed and the reason for antibiotics as I had infections. He said it was rare. But all I started on was a topical and antibiotics, and from what I've read, I meet some of the symptoms for Erythrodermic with the fiery red, but it's not widespread. Mostly my ears, neck, upper back. Some on my face, elbows and a spot on my knee and stomach. I am just getting to the point of being able to ask questions. I didn't know what to ask about to be honest.

I've only recently, as in the past week, been looking at the medicines that treat psoriasis. Doc did say that if this (Acitretin and UVB) doesn't work the next step is very expensive so I'm guessing biologics. But hopefully, this will work, I'll get clear and we'll figure out how to keep me that way. It's great to find a place where people understand and also where I'm getting educated so that I DO know what questions to ask next visit.

[Caroline]

Indeed if the next step is biologics than you are speaking of 20.000 a year, but there is one cheaper step in between, the DMF's, about 2.000 a year, so tenfold cheaper, 70% chance of positive result and relatively harmless compared with the others as long as you keep a careful view on your lymphocytes.
If that did not work you can try other biologics. As far as I have a view on this forum, stelara is the most obvious one, ask Fred. Then there are also the range of ....MAB's, the monoclonal antibodies.

So there is still a long horizon, which hopefully you do not have to reach.

Caroline

[Troll]

Belated Hello Kat

[Kat]

Belated Hello Kat

Hello Troll

[jiml]

I'm on quite a few meds, so hate adding another one but yes, I'd probably stick my finger in a light socket if the doc told me it would help at this point. I hope it works, if not then (per doc) we try something else. I'm not sure why Acitretin was his first choice, I only know that even with insurance, it sure ain't cheap!

Keep Fred in check??? Is that even a possibility?

It's cheaper than 20,000 to 60,000 USD cost of biologics and safer than Methotrexate. That combined with age and type of psoriasis is probably the reason he chose the drug, but not definitive. Well, I hope you get some relief soon! A lot of us know how it feels.

Thank you! I have/had Erythrodermic Psoriasis. The reason I put "had" is from what I've read, it's when you have a particular flare up. But that was what he diagnosed and the reason for antibiotics as I had infections. He said it was rare. But all I started on was a topical and antibiotics, and from what I've read, I meet some of the symptoms for Erythrodermic with the fiery red, but it's not widespread. Mostly my ears, neck, upper back. Some on my face, elbows and a spot on my knee and stomach. I am just getting to the point of being able to ask questions. I didn't know what to ask about to be honest.

I've only recently, as in the past week, been looking at the medicines that treat psoriasis. Doc did say that if this (Acitretin and UVB) doesn't work the next step is very expensive so I'm guessing biologics. But hopefully, this will work, I'll get clear and we'll figure out how to keep me that way. It's great to find a place where people understand and also where I'm getting educated so that I DO know what questions to ask next visit.

Kat I hope you don't mind if I continue here but this may help others

Kat wrote

Yeah, I step into a chamber of light tubes, put on some shades and hit the button. I'm up to a whopping minute treatment now. At this rate, I'll never get a tan. I think the tanning bed started me out (years ago) at 15-20 minutes for first visit. But tanning booth didn't put out the heat that this thing does.

Jim wrote
I'm not sure but I think tanning studios use weaker tubes and different wavelength UV I have in the past when desperate used tanning studios. But I would rather use the hospital booths.
Have you asked them how long your longest treatment will be?

Kat wrote
Well, I asked on my first visit and was told they couldn't tell me as it varies too much from person to person and condition to condition. I just finished my ... 16th visit.

You were saying you have had 16 treatments and are only up to one minute that seems very short, are you seeing any benefit?
And what time did they start you on?

[Kat]

You were saying you have had 16 treatments and are only up to one minute that seems very short, are you seeing any benefit?
And what time did they start you on?

They started me at 10 seconds. It was a very long trip for 10 seconds! I have seen some improvements but they are small. My leg is clear, my elbows, stomach and back are better and my scalp, neck and ears vary... they seem better some days and not much better on others. I still have a LOT of itching and scales on scalp, ears and neck but I do think it is less than when I started the light treatment and the acitretin it just hasn't been a big improvement there yet. I have been able to move my score down from 21 to 15 so that's good. It's just being a really slow process.

[jiml]

You were saying you have had 16 treatments and are only up to one minute that seems very short, are you seeing any benefit?
And what time did they start you on?

They started me at 10 seconds. It was a very long trip for 10 seconds! I have seen some improvements but they are small. My leg is clear, my elbows, stomach and back are better and my scalp, neck and ears vary... they seem better some days and not much better on others. I still have a LOT of itching and scales on scalp, ears and neck but I do think it is less than when I started the light treatment and the acitretin it just hasn't been a big improvement there yet. I have been able to move my score down from 21 to 15 so that's good. It's just being a really slow process.

That's good that you are monitoring your score and yes it will be a slow process .
Working on what you have said they are just giving you an additional 2 seconds a day, is that every other day or at what frequency are you being treated,

It's so long since I had the treatment I can't remember all the detail but I think my maximum was around 10 minutes.
Perhaps as you get used to it they will crank it up in bigger steps
I do remember sporting a great tan and I always asked for my treatment to begin in April or May so I was clear for part of the summer

[Kat]

You were saying you have had 16 treatments and are only up to one minute that seems very short, are you seeing any benefit?
And what time did they start you on?

They started me at 10 seconds. It was a very long trip for 10 seconds! I have seen some improvements but they are small. My leg is clear, my elbows, stomach and back are better and my scalp, neck and ears vary... they seem better some days and not much better on others. I still have a LOT of itching and scales on scalp, ears and neck but I do think it is less than when I started the light treatment and the acitretin it just hasn't been a big improvement there yet. I have been able to move my score down from 21 to 15 so that's good. It's just being a really slow process.

That's good that you are monitoring your score and yes it will be a slow process .
Working on what you have said they are just giving you an additional 2 seconds a day, is that every other day or at what frequency are you being treated,

It's so long since I had the treatment I can't remember all the detail but I think my maximum was around 10 minutes.
Perhaps as you get used to it they will crank it up in bigger steps
I do remember sporting a great tan and I always asked for my treatment to begin in April or May so I was clear for part of the summer

I go every Monday, Wednesday and Friday. Doc ordered 3x per week and they require one day off between treatments. I may be over one minute, I didn't ask. The "voice" started by telling me my treatment would be 30 seconds or less. I know she (nurse) said the first treatment was 10 seconds. Now the "voice" says "your treatment will be approximately one minute long" but it may not change until it's up to 2 minutes or more. The computerized voice comes on once the treatment begins. It hasn't been enough to notice any tanning, but I had gotten some sun over the summer so it will probably take much longer before it would be really noticeable. Even if I did get a bit of a tan, winter is coming up so it will all be gone by next summer.