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just diagnosed

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just diagnosed
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
#81
News  Sun-20-11-2016, 01:22 AM
(Sat-19-11-2016, 23:56 PM)JohnB Wrote: 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

Thanks a lot, Jim, Bill, Caroline!
We do understand the risk. And we will be very careful... (we - my husband and I, we both have engineering background and some knowledge of physics - in regard to radioation )
Also need to mention - I have seen three doctors, two of them were dermatologists knowing about my carcinomas, one - the GP, they all said, that the phototherapy is the only recommended treatment for me for now, no oral medication required, just put sunscreen on my face... Jar
Two Carcinomas will be removed in December and i will never allow my face to be at risk - will cover it by any possible way, just want to get better for now from PS, it is hard that i learned about having carcinomas and required surgeries on the same time when i got PS.
Hard times. Hard to make right decision, but i need to move on. I cannot afford to quit the job  (i would be happy to quit, but money talks, right?)
Thank you so much for sharing your experiences and opinions - they are priceless...

Best regards,
svp
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
#82
Sun-20-11-2016, 01:57 AM
What ever you do. Do stay in touch and let us know how it works for you .....
We are really very friendly and dont be put off because we sounded negative, we still want to hear from you and will be pleased to chat about your decision and will support whatever you do.....this is a place you can come anytime where the members are in the same boat as you are ....many have found a treatment that suits them whereas some are still searching ....but we have the disease that binds us as a community ....so I hope we haven't put you off and you will return with news of your treatment and how successful it is for you
Jim Thumb

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
#83
Sun-20-11-2016, 02:39 AM
Yes, continuity of story is what makes this forum so valuable. I have just finished a 20 minute sun treatment and I am glad I dont have to think about phototherapy sessions or equipment. It is funny how limits are set for phototherapy, yet small amounts of sun are recommended on a continuing basis. The skin has repair mechanisms, but you want those mechanisms to recover after exposure and you dont want to overload them with too much exposure. Out of interest, in the US, dermatologists recommend avoiding the sun and taking d3 supplements.

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
#84
Sun-20-11-2016, 03:08 AM
(Sun-20-11-2016, 01:57 AM)jiml Wrote: What ever you do. Do stay in touch and let us know how it works for you .....
We are really very friendly and  dont be put off because we sounded negative, we still want to hear from you and will be pleased to chat about your decision and will support whatever you do.....this is a place you can come anytime where the members are in the same boat as you are ....many have found a treatment that suits them whereas some are still searching ....but we have the disease that binds us as a community ....so I hope we haven't put you off and you will return with news of your treatment and how successful it is for you
Jim  Thumb


Oh, Jim, you made me crying...
I am so glad I found this wonderful community with so friendly people, but i see i have to take hard decisions by my own.
I will be here with any updates i have.
And again, thank you all so much for the warm wellcoming, huge support and your priceless sharings - it helped me a lot to accept my new reality and also to ask right questions about the options when i saw my doctors - you gave me solid base of knowledge about the condition and available treatments.
  ilpc
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
#85
Sun-20-11-2016, 03:23 AM
Thank you and good luck and come back often  Bigarm
It's past 2am here I had better get some sleep   Thumb light
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
#86
Sun-20-11-2016, 03:33 AM
(Sun-20-11-2016, 02:39 AM)Bill Wrote: Yes, continuity of story is what makes this forum so valuable. I have just finished a 20 minute sun treatment and I am glad I dont have to think about phototherapy sessions or equipment. It is funny how limits are set for phototherapy, yet small amounts of sun are recommended on a continuing basis. The skin has repair mechanisms, but you want those mechanisms to recover after exposure and you dont want to overload them with too much exposure. Out of interest, in the US, dermatologists recommend avoiding the sun and taking d3 supplements.

Cheers,

Bill

Hey, Bill
Sessions are about 35 seconds to start, and increase only for few seconds on every next time (instructions are attached to the device).
In total it suppose to take  month and a half (according to my derma doc).
Are you so lucky to live in some sunny area, happy for you if so...
Winter is so ugly here :(((
offtop: what is d3 - vitamin D?
I start to take A and D now, i can see some improvment
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
#87
Sun-20-11-2016, 03:49 AM
(Sun-20-11-2016, 03:23 AM)jiml Wrote: Thank you and good luck and come back often  Bigarm
It's past 2am here I had better get some sleep   Thumb light

I will Bigarm
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
#88
Sun-20-11-2016, 05:30 AM
If you have a diagnosed deficiency by a medical practitioner (not a naturopath- these guys are to be avoided if you want to be treated successfully), then you have a starting point. Some topical treatments are vitamin d analogues, so with a large surface area you could absorb excessive amounts. Phototherapy, although a creepy apparatus if you dont have lots of sunshine as I do, is just another treatment with its own set of pros and cons.

All the best,

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
#89
Sun-20-11-2016, 05:59 AM
(Sun-20-11-2016, 05:30 AM)Bill Wrote: If you have a diagnosed deficiency by a medical practitioner (not a naturopath- these guys are to be avoided if you want to be treated successfully), then you have a starting point. Some topical treatments are vitamin d analogues, so with a large surface area you could absorb excessive amounts. Phototherapy, although a creepy apparatus if you dont have lots of sunshine as I do, is just another treatment with its own set of pros and cons.

All the best,

Bill

No, no naturopaths ever, only the professional medical docs.
i got  some new cream from my derma doc, did not try it yet, but he insisted on phototherapy only, cause the cream cannot cover the entire body being affected...I want to try Dead sea salt baths .
PS - Some parts of me are getting better - hands do not look so ugly as before, just red a bit , some spots are even gone - on my arms, but legs still look terrible...
Will update here when and if i have any improvement

Thanks
Caroline Offline
You must hurry if you ever want to catch a chicken...
*
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
#90
Sun-20-11-2016, 09:25 AM
May I encounter that...

I have had the best results with a doctor, a medical practitioner, he is originally a GP but he specialised in researching psoriasis and it's causes..
Later in life he started to place the patient, and not the money, in the centre, meaning that he started looking at the patient in a more natural way, with everything around it, as nature itself is. Nothing is at its own, everything has a relation to other things. From that natural view he gradually understood how "man" lives and grows and interacts with everything around. And he understood that a disease is never alone on its own (unless you bump your toe Tongue ).
He recently cured himself from heart fibrillations, just by researching literature, finding important things that are related to heart diseases and now with a little pill everyday his fibrillations are gone. A cardiologist would have done an ablation.
So it does not mean that every natural doctor is insane, they have a very much broader view towards the patients, of course be aware of charlatans.
Also a natural doctor needs to have a degree and an oath...
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