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Psoriasis Club › HealthHealth Boards › Prescribed Treatments For Psoriasis v
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phototherapy before Stelera

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phototherapy before Stelera
jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#21
Thu-13-09-2018, 10:58 AM
(Thu-13-09-2018, 07:16 AM)Imapsomom Wrote:
(Wed-12-09-2018, 11:50 AM)Fred Wrote:
(Tue-11-09-2018, 22:14 PM)Imapsomom Wrote: but will always make up my own mind in the end.  Big Grin

Wise decision. It's your (or in your case your sons) body and we have to go with what our hearts tell us.

And now you are a member of Psoriasis Club, you too will be adding to patient evidence.  Thumb

I'm thinking of starting a Journal...there have got to be other parents who could learn from us.

That's a great idea I'm sure it will be a great comfort to others that are struggling with young family members to read of your journey Clap Clap
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Fred Offline
I Wanted To Change the World But Got Up Far Too Late.
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Posts: 67,201
Threads: 3,902
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Gender: Male
Location: France
Psoriatic Arthritis Score: 1
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Treatment: Bimzelx / Coconut Oil
#22
Thu-13-09-2018, 12:15 PM
Yes you are welcome to have a journal, a lot of us do.

You have two options:

#1 Start your journal in:
Psoriasis And Psoriatic Arthritis Topics
Prescribed Treatments For Psoriasis
Natural Treatments For Psoriasis

Those sections are in the public domain and anyone can see what you write and even copy it.

#2
[Group Specific]

This section is only seen by Psoriasis Club members with 10+ posts. Some use that section as they don't feel so comfortable sharing with the public.

Some also have locked copies, see here [Group Specific]
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Kat Offline
Take my advice; I don't use it anyway.

100 + Member I Just Cant Stop !
Posts: 9,829
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Joined: Aug 2014
Gender: Female
Location: GA
Psoriasis Score: 3
Treatment: Clobetasol Topical
#23
Fri-14-09-2018, 02:36 AM
I did phototherapy for awhile and it did help but I was also on Acetritin at the time so I'm not sure how much of it was the light therapy and how much the Acetritin to be honest.

There are risks associated with all treatments so I personally feel each individual has to consider the risks and then move forward with what they feel is best for them. Personally I've been a bit leery of everything I've been on so far including topic meds.
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Turnedlight Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
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Location: Uk
Treatment: Skyrizi
#24
Wed-19-09-2018, 18:10 PM
Be careful - I’m very pale and know I burn very easily. I was given only half of the lowest dose on the chart - just a few seconds. I noticed redness but dutifully carried on.
After the second or third session (can’t remember now) I had bad sunburn in places which had never seen the sun before, ie my chest and tummy. Where I got burned, I broke out in P. I was in a mess. It was quite painful on the delicate areas and still reappears there with a flare up so I’m not amused that I had really no choice in doing it.

So, it sounds like this doesn’t happen often, it’s fine for loads of people, but keep your eye out for signs of real sunburn (I believe people report redness straight after uvb but this was red and hot hours later, like having been on the beach.) If you are worried get the nurse to chat to the derm before another session.
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Imapsomom Offline Author
100 + Member I Just Cant Stop !

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Location: Canada
Treatment: Stelara
#25
Thu-27-09-2018, 04:37 AM
In the end we decided to try a round of photo-therapy  before starting on Stelera. I talked with the dermatologist and with the nurse at the Children's Hospital where they administer the photo-therapy for kids and they both said for his age they often get very good results. We will try for 1-3 months. If that doesn't work we will go for Stelera. My son is only worries about suddenly having a tan.
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Caroline Offline
You must hurry if you ever want to catch a chicken...
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#26
Thu-27-09-2018, 07:46 AM
(Thu-27-09-2018, 04:37 AM)Imapsomom Wrote: In the end we decided to try a round of photo-therapy  before starting on Stelera. I talked with the dermatologist and with the nurse at the Children's Hospital where they administer the photo-therapy for kids and they both said for his age they often get very good results. We will try for 1-3 months. If that doesn't work we will go for Stelera. My son is only worries about suddenly having a tan.

Ok..
It is worth trying. Thumb
For me it would seem the last thing to worry about having a tan Big Grin , but I can imagine that for your son that may be different. He is on an age where it feels better to blend in instead of being different. There is one advantage, he may grow stronger out of it realising that being different than the others is not a bad thing.
Good luck for him !
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Imapsomom Offline Author
100 + Member I Just Cant Stop !

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Treatment: Stelara
#27
Thu-27-09-2018, 08:27 AM
(Wed-19-09-2018, 18:10 PM)Turnedlight Wrote: Be careful - I’m very pale and know I burn very easily. I was given only half of the lowest dose on the chart - just a few seconds. I noticed redness but dutifully carried on.
After the second or third session (can’t remember now) I had bad sunburn in places which had never seen the sun before, ie my chest and tummy. Where I got burned, I broke out in P. I was in a mess. It was quite painful on the delicate areas and still reappears there with a flare up so I’m not amused that I had really no choice in doing it.

So, it sounds like this doesn’t happen often, it’s fine for loads of people, but keep your eye out for signs of real sunburn (I believe people report redness straight after uvb but this was red and hot hours later, like having been on the beach.) If you are worried get the nurse to chat to the derm before another session.
Turnedlight I did not see this post before. Thank you, I will be very mindful.
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jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
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Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#28
Thu-27-09-2018, 09:38 AM
(Thu-27-09-2018, 04:37 AM)Imapsomom Wrote: In the end we decided to try a round of photo-therapy  before starting on Stelera. I talked with the dermatologist and with the nurse at the Children's Hospital where they administer the photo-therapy for kids and they both said for his age they often get very good results. We will try for 1-3 months. If that doesn't work we will go for Stelera. My son is only worries about suddenly having a tan.

Good luck I think he will be better with a tan than with spots of Psoriasis, and if it’s not on his face I’m sure he could wear sunblock there so it’s less noticeable

I look forward to hearing how it works for him, as a young man I used to get good clearance with it and was never bothered by the tan . I had even told people that I had just returned from holiday Big Grin
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cbleahen Offline
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Treatment: lotions, potions & phototherapy
#29
Wed-03-10-2018, 11:02 AM
I'm currently doing a round of phototherapy and have had mixed results.  I have skin type 1 (fair, never tans, always burns) and started off with 14 seconds in the booth.  Progressed well (increase of 5 seconds on each treatment, 3 times a week) until I got to 1m12s - got an E3 burn so treatment was stopped for a week and dose reduced by 50%.  Given my fair skin, I will only have another week of therapy as they don't think it's going to help when I can't go much over 1 minute in the booth without burning.  The team have also suggested that I'll have to go on an injection to clear it, although I'm not enthusiastic about that at all and will do my best to live with my P/avoid more drugs! 
I have modified my diet since my diagnosis (linked to strep throat outbreak) - mostly gluten, dairy, sugar and nightshade free.  

Hope phototherapy works for you - having met loads of people in the hospital while waiting for my treatment, it does sound like it's really successful for lots of people.
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jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#30
Wed-03-10-2018, 11:15 AM
(Wed-03-10-2018, 11:02 AM)cbleahen Wrote: I'm currently doing a round of phototherapy and have had mixed results.  I have skin type 1 (fair, never tans, always burns) and started off with 14 seconds in the booth.  Progressed well (increase of 5 seconds on each treatment, 3 times a week) until I got to 1m12s - got an E3 burn so treatment was stopped for a week and dose reduced by 50%.  Given my fair skin, I will only have another week of therapy as they don't think it's going to help when I can't go much over 1 minute in the booth without burning.  The team have also suggested that I'll have to go on an injection to clear it, although I'm not enthusiastic about that at all and will do my best to live with my P/avoid more drugs! 
I have modified my diet since my diagnosis (linked to strep throat outbreak) - mostly gluten, dairy, sugar and nightshade free.  

Hope phototherapy works for you - having met loads of people in the hospital while waiting for my treatment, it does sound like it's really successful for lots of people.

Hi again Cat sorry the phototherapy is not working for you and hope you can get clear with diet, if you can't ask your dermatologist about the treatment I'm on or Skilarence as it's available in Ireland and is not as harsh as injecting Methotrexate or a biological ( if it doesn't work you can stop without having damaged your body)
Good luck why not start your own thread of your experiences you can do that here Prescribed Treatments For Psoriasis and just click new thread
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