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just diagnosed

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just diagnosed
Bill Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 1,624
Threads: 6
Joined: Dec 2012
Gender: Male
Location: Queensland
Treatment: Dimethyl fumarate
#71
Sat-19-11-2016, 04:49 AM
Hi SVP,

I am fortunate that I have ample sunshine, and it is very helpful. What medication were you prescribed? Applying topicals over large areas can have systemic consequences.

Cheers,

Bill
svp3058 Offline Author
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 134
Threads: 3
Joined: Nov 2016
Gender: Female
Location: canada
Treatment: not yet
#72
Sat-19-11-2016, 05:19 AM
(Sat-19-11-2016, 04:49 AM)Bill Wrote: Hi SVP,

I am fortunate that I have ample sunshine, and it is very helpful. What medication were you prescribed? Applying topicals over large areas can have systemic consequences.

Cheers,

Bill

Toronto is not too sunny this time of the year...I was prescribed Photo therapy and some cream (just in case i feel itchy, but i don't) stronger that i used before, not sure, did not even buy it yet. And getting light treatment in the clinic is not possible cause i still have to work  (time)
Looking in to Florida for some private location with private backyard at least , prices are too high...I cannot go to  any public resort now - i look too scary with all my rashes:(( Thanks, Bill
Bill Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 1,624
Threads: 6
Joined: Dec 2012
Gender: Male
Location: Queensland
Treatment: Dimethyl fumarate
#73
Sat-19-11-2016, 05:59 AM
You can buy uvb phototherapy equipment, but it would cost a few thousand and you would need to set the lamps into a panel. What is the regulation of phototherapy equipment (311nm Narrowband, Phototherapy) like in Canada? You may be able to access the same equipment at a non-medical facility.

Cheers,

Bill
Bill Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 1,624
Threads: 6
Joined: Dec 2012
Gender: Male
Location: Queensland
Treatment: Dimethyl fumarate
#74
Sat-19-11-2016, 06:12 AM
I have had a look around and there is quite a range available, with basic full length units such as: Full length Canopy with 7x TL01 Philips UVB Phototherapy Narrowband Light Tubes & 2x RUVA Tubes + stand for treatment of psoriasis, vitiligo etc

Good luck.

Bill
svp3058 Offline Author
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 134
Threads: 3
Joined: Nov 2016
Gender: Female
Location: canada
Treatment: not yet
#75
Sat-19-11-2016, 07:05 AM
(Sat-19-11-2016, 06:12 AM)Bill Wrote: I have had a look around and there is quite a range available, with basic full length units such as: Full length Canopy with 7x TL01 Philips UVB Phototherapy Narrowband Light Tubes & 2x RUVA Tubes + stand for treatment of psoriasis, vitiligo etc

Good luck.

Bill

Thanks, Bill
My husband was looking for home light therapy, it looks very expensive, but since we are not going to the South this X-Mas due to me ugly looking skin, we consider this option.
I was told i would need light therapy three times a week for just a few seconds of light (I had one session - the device also made me claustrophobic) - who can afford this being out of work for hours (distance and terrible traffic), i don't know...
Wall
Caroline Offline
You must hurry if you ever want to catch a chicken...
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Forum Helper
Posts: 26,522
Threads: 113
Joined: Nov 2011
Gender: Female
Location: In between the tulips
Psoriasis Score: 3
Psoriatic Arthritis Score: 3
PQOLS: 4
Treatment: Got back to DMF slow release
#76
Sat-19-11-2016, 20:35 PM
(Sat-19-11-2016, 07:05 AM)svp3058 Wrote:
(Sat-19-11-2016, 06:12 AM)Bill Wrote: I have had a look around and there is quite a range available, with basic full length units such as: Full length Canopy with 7x TL01 Philips UVB Phototherapy Narrowband Light Tubes & 2x RUVA Tubes + stand for treatment of psoriasis, vitiligo etc

Good luck.

Bill

Thanks, Bill
My husband was looking for home light therapy, it looks very expensive, but since we are not going to the South this X-Mas due to me ugly looking skin, we consider this option.
I was told i would need light therapy three times a week for just a few seconds of light (I had one session - the device also made me claustrophobic) - who can afford this being out of work for hours (distance and terrible traffic), i don't know...
Wall

Unfortunately it does not look as this is going to work. Indeed going to phototherapy as proposed is not going to work and buying lamps for yourself may lead to on the one side high costs on the other side it is a bit creepy. As far as I know phototherapy is a delicate thing, you should take care not to burn your skin. Also it is limited, you cannot have more than a certain amount of radiation otherwise the risk of skin cancer is increasing too much.
I personally think that phototherapy should be used as a supporting treatment together with something else where it can be used to quickly boost healing, but another treatment like a systemic or biological should do the job.
Phototherapy has never been able to keep Psoriasis away, it always comes back, while in the mean time you get a lot of radiation.
I don't know the options in Canada, but I fear you have to go back en discuss another treatment, this is simply not possible, you also have to live!

@Bill,
As far as I know phototherapy also will not work for vitiligo, the skin will only burn on those places that are affected.
Bill Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 1,624
Threads: 6
Joined: Dec 2012
Gender: Male
Location: Queensland
Treatment: Dimethyl fumarate
#77
Sat-19-11-2016, 21:35 PM
Caroline,

I agree with you that phototherapy should not be a primary treatment, but if used correctly (i.e. as per the prescription) it will provide exactly the same benefit regardless of the location of the unit.

Cheers,

Bill
svp3058 Offline Author
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 134
Threads: 3
Joined: Nov 2016
Gender: Female
Location: canada
Treatment: not yet
#78
Sat-19-11-2016, 23:15 PM
(Sat-19-11-2016, 20:35 PM)Caroline Wrote:
(Sat-19-11-2016, 07:05 AM)svp3058 Wrote:
(Sat-19-11-2016, 06:12 AM)Bill Wrote: I have had a look around and there is quite a range available, with basic full length units such as: Full length Canopy with 7x TL01 Philips UVB Phototherapy Narrowband Light Tubes & 2x RUVA Tubes + stand for treatment of psoriasis, vitiligo etc

Good luck.

Bill

Thanks, Bill
My husband was looking for home light therapy, it looks very expensive, but since we are not going to the South this X-Mas due to me ugly looking skin, we consider this option.
I was told i would need light therapy three times a week for just a few seconds of light (I had one session - the device also made me claustrophobic) - who can afford this being out of work for hours (distance and terrible traffic), i don't know...
Wall

Unfortunately it does not look as this is going to work. Indeed going to phototherapy as proposed is not going to work and buying lamps for yourself may lead to on the one side high costs on the other side it is a bit creepy. As far as I know phototherapy is a delicate thing, you should take care not to burn your skin. Also it is limited, you cannot have more than a certain amount of radiation otherwise the risk of skin cancer is increasing too much.
I personally think that phototherapy should be used as a supporting treatment together with something else where it can be used to quickly boost healing, but another treatment like a systemic or biological should do the job.
Phototherapy has never been able to keep Psoriasis away, it always comes back, while in the mean time you get a lot of radiation.
I don't know the options in Canada, but I fear you have to go back en discuss another treatment, this is simply not possible, you also have to live!

@Bill,
As far as I know phototherapy also will not work for vitiligo, the skin will only burn on those places that are affected.
I don't know...Phototherapy was the only treatment I was recommended by the good dermatologist who treats PS.
I am lost for now - going to his clinic tree times a week - I just cannot do it as i mentioned before. Go to the sun as he suggested - i have two carcinomas on my face, to be removed Dec 1 and Dec 19. He did not mention any danger of light therapy or sunlight knowing about carcinomas (he will operate the second one on Dec 19)...
Also  i can see my PS it is getting a bit better by itself - not so aggressive anymore, and some spots are gone.
As for home phototherapy - we know the risk, and will find the proper way not burn me Smile)
Thanks!
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
#79
Sat-19-11-2016, 23:36 PM
It's difficult for you to get right, but at the end of the day you are the only one who can make a decision, and while I sympathise with your predicament. It's not possible to advise you to do home UV therapy ...but you should be guided by your dermatologist, if he gives you his blessing to use home UV treatment then just be careful ....especially if you have UV damage already and have carcinomas ...

If I was you I would ask for one if the systemic treatments like acetretin as it will probably clear you and be less risky

Jim
JohnB Offline
I wanted to be an Engineer when I grew up, but was told I could'nt do both

100 + Member I Just Cant Stop !
Posts: 4,725
Threads: 36
Joined: Jan 2016
Gender: Male
Location: Lancashire UK
Psoriasis Score: 10
Psoriatic Arthritis Score: Hmm Maybe
PQOLS: 5
Treatment: Otezla/Apremilast & Enstilar occasionally.
#80
Sat-19-11-2016, 23:56 PM
I'm with Jim on the UV. I've had three sessions two off UVB, one off UVA. The UVA type you have to take a tablet two hours before hand to sensitise your skin to the UV. With  me only the first UVB did any good and that only gave me about 5 weeks of change. The reduction in PS was about 50%. Here in the UK we are very closely monitored when we are perscribed UV. We have a lifetime allocation and it amounts to about 4 1/2 sessions (1 session = 2x week for 8 - 12 weeks). There is a risk as with any exposure to UV radiation of developing cancer. I am not saying discount it but you have to be really careful if you are self treating at home.
JohnB
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