Posts: 28,484
Threads: 117
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
(Sat-25-05-2024, 19:22 PM)Trampledrosie Wrote: (Fri-24-05-2024, 16:27 PM)Caroline Wrote: Hello Rosie,
Welcome to Psoriasisclub !
Normally I am much faster in my reactions and I had seen your arrival on the forum already very quickly. But I am currently living a very busy time, so past week I hardly have been on the forum.
Quite a nasty form of psoriasis you have.
Did you already discuss the possibility of biologics, specifically for your kind of the disease?
Cheers,
Caroline Hi Caroline! Thanks!
It is quite nasty. So far I have tried a number of steroid creams, uvb light (didn’t work), now puva light which has helped the bottoms of my feet a little but it is spreading up the sides and now the doctor said the tops of my feet and ankles) broke out in bumps and crazy itchiness this past week) look more like eczema! My legs have also started itching like crazy. Tried numerous Cerave and Cetaphil creams, bleach soaks, salt soaks, nothing helped. So she said only use betaderm and Vaseline, cold compresses and cool water soaks for now. She is going to continue puva until my regular dermatologist sees me. I don’t want to take methotrexate (my partner tried that for his PRP and it came back with a vengeance as soon as he stopped) but retinoids and biologics are the next steps I guess. So frustrating. I will have a look at the biologics threads on here!
Hi Rosie,
Personally I think that most steroids finally will not work, as they are only targeting the result, the symptoms of the disease. The disease basically has nothing to do with your skin, but is an internal immune reaction that finally expresses on the skin.
That is why Dave’s MTX treatment, though a terrible medication, works for him, it suppresses the reaction of the immune system and that makes that his psoriasis disappears.
Unfortunately identical are the PUVA treatments. They only work for the symptoms and only temporary. With the additional result that your skin even gets worse because of the hard radiation. I am sorry to say that, but it is necessary to realise that.
So, finally you have to do something to get control of your immune system to get results. Now that often finally means that you will have to go to immune suppressors or biologics, which are basically also immune suppressors, but more selective.
Immune suppressors are there in pills, like Acetretin, methotrexate, ciclosporine and Dimethylfumarate (where to my idea, that is not a real immune suppressor)
And the injections which are in the mean time a great scala of biologics (there are several thread about them). Not all biologics will work for you, but I vaguely can remember myself that there are a few that specifically work for PPP. (I will try to search my data if I can find that)
Posts: 71,229
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Joined: Aug 2011
Gender: Male
Location: France
Psoriasis Score: Zero
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PQOLS: 1
Treatment: Bimzelx / Coconut Oil
(Sun-26-05-2024, 20:08 PM)Caroline Wrote: And the injections which are in the mean time a great scala of biologics (there are several thread about them). Not all biologics will work for you, but I vaguely can remember myself that there are a few that specifically work for PPP. (I will try to search my data if I can find that)
Here is one: [post=240994] Targets interleukin 36
Posts: 28,484
Threads: 117
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
(Sun-26-05-2024, 20:17 PM)Fred Wrote: (Sun-26-05-2024, 20:08 PM)Caroline Wrote: And the injections which are in the mean time a great scala of biologics (there are several thread about them). Not all biologics will work for you, but I vaguely can remember myself that there are a few that specifically work for PPP. (I will try to search my data if I can find that)
Here is one: [post=240994] Targets interleukin 36
Yesss. That one ! Thanks.
Posts: 9,829
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Location: GA
Psoriasis Score: 3
Treatment: Clobetasol Topical
Sun-26-05-2024, 21:28 PM
(This post was last modified: Sun-26-05-2024, 21:29 PM by Kat.)
I do think steroids can help. I say that as I was on oral steroids for another condition and my psoriasis cleared up quite a bit! And the topicals that help usually have steroids. But yes they treat the symptoms and only keep things going well for a very short time but I just wanted to mention that I think they are helpful and of course NOT for long term use. For me it seems to take a combination, also why I mention it. Also it seems no treatment is a "cleared forever so stop taking" fix as the psoriasis usually will return. Some work for a short while, others work longer but it depends on the person it seems.
I did not however have any luck with photo or laser therapy. I noticed zero improvement and even got burned with the laser photo therapy which certainly wasn't helpful.
It's great there are so many choices available and we all seem to have different things that work for us.
Posts: 312
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Gender: Female
Location: Canada
Psoriasis Score: 4
PQOLS: 30
Treatment: Betaderm, moisturizer, light therapy
I am going to give up the light therapy. Also going to get some good coconut oil and try on one isolated spot. Waiting for my regular dermatologist to see me. Tomorrow is 3 yrs since my last cancer radiation so hesitant about anything that will suppress my immune system any more than it is.
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(Tue-28-05-2024, 01:28 AM)Trampledrosie Wrote: I am going to give up the light therapy. Also going to get some good coconut oil and try on one isolated spot. Waiting for my regular dermatologist to see me. Tomorrow is 3 yrs since my last cancer radiation so hesitant about anything that will suppress my immune system any more than it is.
Understandable. It seems to be a trade off for most treatments  "x" treatment can help "this" condition but may cause "that" condition.
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Just a thought, it’s probably a long shot but have you had testing for metal allergies?
The reason I ask is because I know I’m allergic to nickel (common allergy), chromium and cobalt.
I recently had an outbreak of dishydrotic eczema (pompholyx) on my hands and after a few weeks worked out it was my cobalt allergy - I had been taking lady vitamins and they contain b12.
Another name for b12 is cobalamin - ie cobalt containing, something I never knew before.
Anyway, I’m not saying you’re the same, but things you are allergic to can crop up in funny places.
Also I have read that ppp has a higher incidence of metal allergy.
Who knows, probably not of much use to you but it may be worth exploring..
Posts: 312
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Joined: May 2024
Gender: Female
Location: Canada
Psoriasis Score: 4
PQOLS: 30
Treatment: Betaderm, moisturizer, light therapy
(Tue-28-05-2024, 10:20 AM)Turnedlight Wrote: Just a thought, it’s probably a long shot but have you had testing for metal allergies?
The reason I ask is because I know I’m allergic to nickel (common allergy), chromium and cobalt.
I recently had an outbreak of dishydrotic eczema (pompholyx) on my hands and after a few weeks worked out it was my cobalt allergy - I had been taking lady vitamins and they contain b12.
Another name for b12 is cobalamin - ie cobalt containing, something I never knew before.
Anyway, I’m not saying you’re the same, but things you are allergic to can crop up in funny places.
Also I have read that ppp has a higher incidence of metal allergy.
Who knows, probably not of much use to you but it may be worth exploring.. Thanks for your response. I have had allergy testing and waiting on a patch test, not sure yet what the difference is yet.
Posts: 312
Threads: 3
Joined: May 2024
Gender: Female
Location: Canada
Psoriasis Score: 4
PQOLS: 30
Treatment: Betaderm, moisturizer, light therapy
(Sun-26-05-2024, 20:32 PM)Caroline Wrote: (Sun-26-05-2024, 20:17 PM)Fred Wrote: (Sun-26-05-2024, 20:08 PM)Caroline Wrote: And the injections which are in the mean time a great scala of biologics (there are several thread about them). Not all biologics will work for you, but I vaguely can remember myself that there are a few that specifically work for PPP. (I will try to search my data if I can find that)
Here is one: [post=240994] Targets interleukin 36
Yesss. That one ! Thanks. God, all these oral and biological treatments sound horrible. Was a bit disappointed that I can only find that one for pustular. Oh my.
Posts: 71,229
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Treatment: Bimzelx / Coconut Oil
(Wed-29-05-2024, 15:09 PM)Trampledrosie Wrote: God, all these oral and biological treatments sound horrible. Was a bit disappointed that I can only find that one for pustular. Oh my.
I've only ever had a problem with Methotrexate which is poison in my opinion. I've tried about 8 different bio's now and apart from having a reaction to one, I've never had any serious problems.
You have to remember all treatments have their bad points as they are messing with your naturel immune system, and though the warnings don't sound nice it's very very rare to get any lasting bad effects.
I'm a big fan of the Bio treatments as they gave me back my life, read some others threads about using bio's and you will find a lot of happy people.
Some others may work for pustular by the way. Give them a go, you can always stop if it doesn't work.
A quote from Wooley's thread. [thread=6094]
Quote:
Ok so I saw my Derm end of Feb (who is a specialist in Palmoplantar Pustular Psoriasis incidentally), and he has said that it looks like my psoriasis (albeit a rare one by comparison) has gone into remission!!!!!
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