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Psoriasis

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    #3212
    dePeatrick
    Registered Users Posts: 1,363 ✭✭✭dePeatrick


    I have had scaly patches on my back, face scalp and elbows for ages. Problems with toenails too. Used steroid cream and it seemed to work for a short while and then a waste of time. Eventually tried diet as it seemed to breakout after eating certain foods. Looks very like I am gluten intolerant as I cut out all gluten about 4 months ago and it has almost cleared completely.

    I will wait a while and do a test just to be sure. Just be aware that gluten intolerance also causes lactose intolerance as a side effect so have cut out all lactose products as well.


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    #3213
    senordingdong
    Registered Users Posts: 10,673 ✭✭✭✭senordingdong


    makeorbrake wrote: »
    Yes...because despite the amazing tech that's knocking around these days, they have no earthly idea how to unravel the psoriasis enigma.

    In certain it's diet.
    I think the common dictum is moving away from the 'food pyramid' and the idea that every body is different and we all need specific diets customised to our unique needs and intolerances.


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    #3214
    Shoneen
    Registered Users Posts: 35 ✭Shoneen


    makeorbrake wrote: »
    Yes...because despite the amazing tech that's knocking around these days, they have no earthly idea how to unravel the psoriasis enigma.


    I think one of the problems with finding a cure for Psoriasis is that there's far more money to be made in controlling it than in curing it.

    Like Eczema and other skin ailments, Psoriasis is almost never a directly fatal disease, so sufferers can be paying out for coping medicines for fifty years plus. If a Pharma company were to find a cure for it they could probably charge a heap load of money for it, but it would be a one off hit.


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    #3215
    Shoneen
    Registered Users Posts: 35 ✭Shoneen


    I had been on Humira for 18 months and I was entirely clear of Psoriasis. When Covid came I chose to stop taking the Humira, partially because of the reduced immunity caused by Humira but also due to the fact that my lungs aren't great due to having had pneumonia four times when I was younger.

    When I got to talk to my Dermatologist about it she wasn't entirely on board with the action I had taken, but could see the logic and said that in another six months we'd have better knowledge as to the risks posed by Covid to people who are on biologics. That's great and all, but personally I didn't want to be contributing to the statistics.

    I'm getting back to where I was now previous to going on humira - topicals are next to useless for me so I'm going to try diet. I started drinking Kombucha and eating raw sauerkraut yesterday and have ordered curcumin tablets. We'll see how it goes.


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    #3216
    makeorbrake
    Registered Users Posts: 4,664 ✭✭✭makeorbrake


    Shoneen wrote: »
    I think one of the problems with finding a cure for Psoriasis is that there's far more money to be made in controlling it than in curing it. ...If a Pharma company were to find a cure for it they could probably charge a heap load of money for it, but it would be a one off hit.
    That's likely to be very true. Of all the numerous commercials on US TV for drugs, psoriasis drugs like Humira are advertised far more than others.
    Shoneen wrote: »
    I had been on Humira for 18 months and I was entirely clear of Psoriasis.
    When you went off the Humira earlier this year, did your psoriasis come back? If so, how quickly did it come back and to what level of intensity (relative to what you would have experienced in the past)?


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    #3217
    Shoneen
    Registered Users Posts: 35 ✭Shoneen


    makeorbrake wrote: »
    That's likely to be very true. Of all the numerous commercials on US TV for drugs, psoriasis drugs like Humira are advertised far more than others.


    When you went off the Humira earlier this year, did your psoriasis come back? If so, how quickly did it come back and to what level of intensity (relative to what you would have experienced in the past)?

    I think it took about six weeks for the first signs of it to start coming back. It's been fairly gradual, I went off the Humira at the end of February and it's still not back to being as bad as it was pre-Humira, but it's getting there. I tried controlling it with Enstillar for a while, but I've given up on that now as well as it wasn't really helping.


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    #3218
    Dubl07
    Registered Users Posts: 1,801 ✭✭✭Dubl07


    Shoneen wrote: »
    I had been on Humira for 18 months and I was entirely clear of Psoriasis. When Covid came I chose to stop taking the Humira, partially because of the reduced immunity caused by Humira but also due to the fact that my lungs aren't great due to having had pneumonia four times when I was younger.

    When I got to talk to my Dermatologist about it she wasn't entirely on board with the action I had taken, but could see the logic and said that in another six months we'd have better knowledge as to the risks posed by Covid to people who are on biologics. That's great and all, but personally I didn't want to be contributing to the statistics.

    I'm getting back to where I was now previous to going on humira - topicals are next to useless for me so I'm going to try diet. I started drinking Kombucha and eating raw sauerkraut yesterday and have ordered curcumin tablets. We'll see how it goes.

    I discussed stopping my biologic with my consultant at the outset when we knew little about Covid. He was on board, but when we all discovered that the main Covid damage is due to the cytokine storm caused by the same over-reaction of the immune system as psoriasis, I went back on it with his approval. I'm almost clear again, but I hate this virus and what it's doing to our society.

    All the bored trolls and brats are having a great time, even protesting in Dublin yesterday about wearing masks. They can go and do one as far as I'm concerned.


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    #3219
    senordingdong
    Registered Users Posts: 10,673 ✭✭✭✭senordingdong


    wonga77 wrote: »
    and soak in vinegar for a while when I'm watching tv or youtube.

    Just occurred to me, could that indicate that it was a fungus you had and not psoriasis?


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    #3220
    wonga77
    Registered Users Posts: 4,445 ✭✭✭wonga77


    Ya thats possible, like i said, i was never diagnosed but assumed fungal at first before thinking it may be psoriasis, they would be similar enough in appearance alright. Nothing ever seemed to clear it fully anyway


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    #3221
    rubadub
    Registered Users Posts: 32,381 ✭✭✭✭rubadub


    senordingdong wrote: »
    The probiotic effect from fermented veg, would other probiotic have the same effect? Like a probiotic yoghurt?
    I make probiotic yogurt myself too, fermented for 24hours for max probiotics, it comes out really sharp as more lactose/sugar is fermented out. I had been on it before but not sauerkraut.

    senordingdong wrote: »
    Also, I was under the illusion that UV couldn't penetrate the nail?
    seems you are right, I never heard of that, it must be the dovonex that was doing the main work so, I won't bother with the light in future so. This is part of the problem, I do multiple things at once so cannot pinpoint which is the most beneficial.


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    #3222
    Misguided1
    Closed Accounts Posts: 215 ✭✭Misguided1


    I have Psoriatic Arthritis. I was taking Cosentyx and Methotrexate before Covid (BC) but decided to come off Methotrexate due to immunosuppression and concerns about getting the virus. Psoriasis started to come back but nothing like I expected. A couple of patches here and there but nothing dramatic. My consultant wasn't thrilled when I told him....
    My finger joints aren't great at the moment so I've restarted taking the Methotrexate.

    It's a scary time so stay safe everyone:)


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    #3223
    Gael23
    Registered Users Posts: 12,100 ✭✭✭✭Gael23


    Misguided1 wrote: »
    I have Psoriatic Arthritis. I was taking Cosentyx and Methotrexate before Covid (BC) but decided to come off Methotrexate due to immunosuppression and concerns about getting the virus. Psoriasis started to come back but nothing like I expected. A couple of patches here and there but nothing dramatic. My consultant wasn't thrilled when I told him....
    My finger joints aren't great at the moment so I've restarted taking the Methotrexate.

    It's a scary time so stay safe everyone:)

    I was told under no uncertain terms to keep taking my medication. The risks of stopping outweigh the benefit


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    #3224
    makeorbrake
    Registered Users Posts: 4,664 ✭✭✭makeorbrake


    Gael23 wrote: »
    I was told under no uncertain terms to keep taking my medication. The risks of stopping outweigh the benefit

    risks of stopping? You mean in terms of the re-emergence of the psoriasis or are there other risks?


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    #3225
    eeloe
    Moderators, Music Moderators Posts: 3,728 Mod ✭✭✭✭eeloe


    I’m taking stelara and while I was petrified of Covid, I spoke with my consultant, and we both agreed that stelara hasn’t really lowered my immune system all that much, so I kept on taking it. Even moved it from 12 weeks to 8 as I was having some slight flare ups due to stress and lack of sleep in a new job.

    While you’re on biologics, if you live a healthy lifestyle I can’t personally see them lowering the immune system as much as a higher dose of MTX or some of the chemo drugs.


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    #3226
    Misguided1
    Closed Accounts Posts: 215 ✭✭Misguided1


    eeloe wrote: »
    I’m taking stelara and while I was petrified of Covid, I spoke with my consultant, and we both agreed that stelara hasn’t really lowered my immune system all that much, so I kept on taking it. Even moved it from 12 weeks to 8 as I was having some slight flare ups due to stress and lack of sleep in a new job.

    While you’re on biologics, if you live a healthy lifestyle I can’t personally see them lowering the immune system as much as a higher dose of MTX or some of the chemo drugs.

    Exactly. I stayed on the biologic but came off MTX because of its effects on the immune system. I got very sick last year due to weakened immune system so wasn't willing to risk getting Covid with no ability to fight it.

    I didn't experience any major set-back by being off MTX which was interesting. Not to the extent that I expected anyway...


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    #3227
    Foggy Jew
    Registered Users Posts: 763 ✭✭✭Foggy Jew


    Hi. I've had psoriasis for 12 tears; all on my scalp, torso, bum etc - nowhere visible unless I want someone to see it. But now, the full length of my two arms are beginning to get red, peely & I just know I'm in for massive patches very soon. Is there anyway (she wept piteously) that i can stop it in it's tracks before it takes over? All advice much appreciated.

    It's the bally ballyness of it that makes it all seem so bally bally.



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    #3228
    rubadub
    Registered Users Posts: 32,381 ✭✭✭✭rubadub


    rubadub wrote: »
    Found an Irish online chemist with dovonex for 24.50, its usually 25,

    They sell a max of 2 and you get free delivery if its over 30euro. So not huge savings but saves you travelling outside.

    https://www.inishpharmacy.com/p/dovonex-psoriasis-ointment-60gm/a18725

    400g sudocrem is 10.95 which is a bit cheaper than tesco or supervalu

    Eurax is 10.99 which is cheaper than I usually pay.

    this place has 15% off skin cream products, offer ending today, maximum order of 2 dovonex, €20.82 with the money off. The do cocois and eurax too, probably others that people often use.


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    #3229
    wonga77
    Registered Users Posts: 4,445 ✭✭✭wonga77


    What do people think of dovonex? I find it pretty ineffective, even more so when you compare to dovobet, might just be me


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    #3230
    wonga77
    Registered Users Posts: 4,445 ✭✭✭wonga77


    Foggy Jew wrote: »
    Hi. I've had psoriasis for 12 tears; all on my scalp, torso, bum etc - nowhere visible unless I want someone to see it. But now, the full length of my two arms are beginning to get red, peely & I just know I'm in for massive patches very soon. Is there anyway (she wept piteously) that i can stop it in it's tracks before it takes over? All advice much appreciated.

    Have you been to see anyone about it?
    I have had it for years, bits here and there, everyone seems to have different opinions but for me there are certain foods that trigger it like dairy or too much wheat. Have you any foods that you think might be causing issues?
    Also as it gets worse, which in turn makes you more conscious of it, the stress drives it mad.


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    #3231
    rubadub
    Registered Users Posts: 32,381 ✭✭✭✭rubadub


    wonga77 wrote: »
    What do people think of dovonex? I find it pretty ineffective, even more so when you compare to dovobet, might just be me
    I still find it good. dovobet is just dovonex with steroids in it, which is why I would not go near it.


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    #3232
    Gael23
    Registered Users Posts: 12,100 ✭✭✭✭Gael23


    makeorbrake wrote: »
    risks of stopping? You mean in terms of the re-emergence of the psoriasis or are there other risks?

    If you stop your psoriasis will come back with a vengeance


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    #3233
    wonga77
    Registered Users Posts: 4,445 ✭✭✭wonga77


    rubadub wrote: »
    I still find it good. dovobet is just dovonex with steroids in it, which is why I would not go near it.

    That's why I don't find it as good, maybe its the steroids I need!


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    #3234
    Foggy Jew
    Registered Users Posts: 763 ✭✭✭Foggy Jew


    wonga77 wrote: »
    Have you been to see anyone about it?
    I have had it for years, bits here and there, everyone seems to have different opinions but for me there are certain foods that trigger it like dairy or too much wheat. Have you any foods that you think might be causing issues?
    Also as it gets worse, which in turn makes you more conscious of it, the stress drives it mad.
    My psoriasis is clearly genetic. Multiple uncles, cousins, siblings have it. However, mine differs from theirs, in that theirs is cyclical. Theirs comes & goes. My just comes and stays and spreads. It’s heartbreaking watching it taking hold of my arms, and not bloody thing I can do about it. Ugh

    It's the bally ballyness of it that makes it all seem so bally bally.



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    #3235
    kilburn
    Registered Users Posts: 3,912 ✭✭✭kilburn


    Have Psoriasis over 20 years and light therapy in 2018, totally cleared up and stayed clear for 2 years.

    I also find an anti inflammatory diet helps.


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    #3236
    eeloe
    Moderators, Music Moderators Posts: 3,728 Mod ✭✭✭✭eeloe


    Foggy Jew wrote: »
    My psoriasis is clearly genetic. Multiple uncles, cousins, siblings have it. However, mine differs from theirs, in that theirs is cyclical. Theirs comes & goes. My just comes and stays and spreads. It’s heartbreaking watching it taking hold of my arms, and not bloody thing I can do about it. Ugh

    Book in to see a dermatologist, a GP can only do some much(very little actually) to control it.

    I started stelara 2 years ago this month and it’s literally been life changing.


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    #3237
    Looptheloop30
    Registered Users Posts: 214 ✭✭Looptheloop30


    Starting stelara mid Oct. Held out as wanted to see the craic with the Corona. Patches are getting worse so time to make the move.


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    #3238
    Gael23
    Registered Users Posts: 12,100 ✭✭✭✭Gael23


    Looptheloop30 wrote: »
    Starting stelara mid Oct. Held out as wanted to see the craic with the Corona. Patches are getting worse so time to make the move.

    Just be careful and you’ll be fine.


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    #3239
    makeorbrake
    Registered Users Posts: 4,664 ✭✭✭makeorbrake


    Looptheloop30 wrote: »
    Starting stelara mid Oct. Held out as wanted to see the craic with the Corona. Patches are getting worse so time to make the move.

    I'm on something similar (Guselkumab) - 2 months in. It seems like the feedback I got here was solid - people said to expect results in 3 months. I'm already seeing some of it clearing up. It's been a long time coming - been dealing with psoriasis for over 5 years - and the last year it's been really bad.

    Follow the medical advice your getting. I'm sure it should be fine - they wouldn't administer it unless it was relatively safe to do so. In my case (bearing in mind its a related drug but still not the same drug) they told me when covid started, they were not sure if it would be an issue but when they started me on it a couple of months ago, they said they were satisfied that it's not got a bad interaction in that respect.


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    #3240
    Looptheloop30
    Registered Users Posts: 214 ✭✭Looptheloop30


    That's what I wanted/needed to hear. Thanks


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    #3241
    eeloe
    Moderators, Music Moderators Posts: 3,728 Mod ✭✭✭✭eeloe


    I’m on stelara a little over two years, and I’m happy to report ‘touch wood’ that I have zero psoriasis right now, and haven’t had any covid issues, and hopefully won’t either going forward!

    I could have been lucky, but I started seeing results in weeks, not months.

    was essentially covered at the beginning of September, and by the middle of October I was 90% clear, went to Florida on holidays for Halloween that year and wore shorts and t shirts for the first time ever since I was in school.


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