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Psoriasis and other chronic illnesses

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Psoriasis and other chronic illnesses
Fred Offline
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 66,958
Threads: 3,888
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#11
Mon-06-11-2017, 16:27 PM
(Mon-06-11-2017, 10:54 AM)Turnedlight Wrote: I had not read that about the pig parasite before - I wonder how the trials went? Maybe because it's another treatment based on a natural product i.e. something which you can't patent, it has had trouble getting funding?

They did start: Coronado commence study of Pig parasite for psoriasis treatment

But the trials are showing: "No Study Results Posted" and "Recruitment Status Terminated" (Last updated September 15, 2016)
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artemie Offline
Be careful about reading health books, you might die of a misprint

100 + Member I Just Cant Stop !
Posts: 681
Threads: 9
Joined: Jun 2017
Gender: Female
Location: Netherlands
Psoriasis Score: 4
Treatment: Diet started 22th july 2019
#12
Mon-06-11-2017, 18:04 PM
hi there KP,

Don't give up! Funny that you mention giving up on (possibly endless) researching. This, I've also done and it just sucked all the energy right out of me, made me feel very down. So it definitely had an effect on me. So, maybe just go easy on the researching... I still research, but try to not do it too long, as it sometimes feels so hopeless and especially seeing "cures" I *already* tried and didn't work.
It sucks but you're in the right place here, with some amazing people.

Hugs!
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Kpthenut Offline Author
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 209
Threads: 5
Joined: Sep 2017
Gender: Female
Location: Shropshire
Treatment: Steroid cream
#13
Mon-06-11-2017, 18:14 PM
(Mon-06-11-2017, 18:04 PM)artemie Wrote: hi there KP,

Don't give up! Funny that you mention giving up on (possibly endless) researching. This, I've also done and it just sucked all the energy right out of me, made me feel very down. So it definitely had an effect on me. So, maybe just go easy on the researching... I still research, but try to not do it too long, as it sometimes feels so hopeless and especially seeing "cures" I *already* tried and didn't work.
It sucks but you're in the right place here, with some amazing people.

Hugs!

Thank you. I am very down today and tearful, depression and on my shoulder today so probably researching isn't a good idea. Maybe I wait and see what my appointment brings in December xx
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Fred Offline
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 66,958
Threads: 3,888
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#14
Mon-06-11-2017, 21:50 PM
I'll just add, be careful of information overload.
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Fred Offline
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 66,958
Threads: 3,888
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#15
Tue-07-11-2017, 20:39 PM
KP I forgot to mention. Have a look at this thread Dermatology Life Quality Index (DLQI)

Take a copy and fill it in to take with you on your dermatology appointment.
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Kpthenut Offline Author
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 209
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Joined: Sep 2017
Gender: Female
Location: Shropshire
Treatment: Steroid cream
#16
Tue-07-11-2017, 20:45 PM
(Tue-07-11-2017, 20:39 PM)Fred Wrote: KP I forgot to mention. Have a look at this thread Dermatology Life Quality Index (DLQI)

Take a copy and fill it in to take with you on your dermatology appointment.

Fab, will do. Thanks Fred
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Fred Offline
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 66,958
Threads: 3,888
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#17
Tue-07-11-2017, 21:17 PM
(Tue-07-11-2017, 20:45 PM)Kpthenut Wrote:
(Tue-07-11-2017, 20:39 PM)Fred Wrote: KP I forgot to mention. Have a look at this thread Dermatology Life Quality Index (DLQI)

Take a copy and fill it in to take with you on your dermatology appointment.

Fab, will do. Thanks Fred

When filling it in go up a little Wink
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AmandaL Offline
The Itchy and Scratchy show!

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Location: Paisley
Psoriasis Score: 24
Treatment: Stelara
#18
Wed-08-11-2017, 00:01 AM
Hi KP I have crohns so can relate to your frustration. I am currently on stelara but I believe that has only just been approved for crohns so not to sure on the uc aspect.

Which oral meds have you tried out of interest? Does your Gastro and dermatology team work together?
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Kpthenut Offline Author
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 209
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Joined: Sep 2017
Gender: Female
Location: Shropshire
Treatment: Steroid cream
#19
Wed-08-11-2017, 01:23 AM
(Wed-08-11-2017, 00:01 AM)AmandaL Wrote: Hi KP I have crohns so can relate to your frustration. I am currently on stelara but I believe that has only just been approved for crohns so not to sure on the uc aspect.  

Which oral meds have you tried out of interest? Does your Gastro and dermatology team work together?

Big hugs. Thank you for your comments. I haven't see a dermatologist sin 1979/80. I've been able to manage with GP input.

I've had P since I was 3/4 54 years. I'm used to plaque but have a nasty flair up of inverse. I have my first dermatologist appt. in December. I have no idea about what treatment would be best for me. How are you finding stelera. 

Bigarm
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Turnedlight Offline
100 + Member I Just Cant Stop !

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Location: Uk
Treatment: Skyrizi
#20
Wed-08-11-2017, 09:59 AM
I have a theory which I have read a little bit about also, which is that as well as a person feeling low or depressed because they have psoriasis and are feeling perhaps embarrassed, worried about appearance and or in pain from it, that the same inflammation that's affecting the skin is also acting on the brain directly. They did think the brain was 'safe' because they thought it was separated by a 'barrier' but I believe they have since decided there is a pathway for inflammation. So low moods etc might possibly be another expression of the inflammatory disease.
My long rambling thoughts anyway. I find it a more likely explanation for myself than being told it's because I'm stressing about how I look or whatever because quite frankly I'm not that bothered about appearances. Plus of course the lack of sleep when your skin/ joints are bad mess up your head too.
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