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Psoriasis

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  • Registered Users Posts: 1,305 ✭✭✭nibtrix


    suttonboi1 wrote: »
    Do you know how you managed to get vaccinated early considering your consultant said category 7 which hasn’t started yet?

    I think there was a quoting error there, the first sentence was from my post.

    I think this is probably a example of a consultant/department who decided these medications were in cohort 4, rather than 7.


  • Registered Users Posts: 8,509 ✭✭✭brevity


    I was due to get mine on Tuesday but because of the pause around the AstraZeneca vaccine it was cancelled. No idea when I'll be getting it now.


  • Moderators, Music Moderators Posts: 3,726 Mod ✭✭✭✭eeloe


    suttonboi1 wrote: »
    Have you always been on a 12 week rotation?

    I am on 40mg every two weeks now again. Was the same a few years back when I was on it for 2 years, rotation never changed even though I was fully clear. Different medication I know but thought my Derm might have pushed out the injection interval but never did.

    I was on 12 weeks for the first 18months to 2 years...and then towards the end of last year i moved to 8 weeks.

    I was always floating around 95kg, and the limit for 45mg is 100kg. Since i can't really do my preferred exercise, all i've been able to do for the last 6 months really is just weight lifting, and i've gone to 100-102kg depending on the day, so i think the 90mg dose will really bring be back to the level of clearance i had when i started first.


  • Registered Users Posts: 16,702 ✭✭✭✭dahat


    nibtrix wrote: »
    I think there was a quoting error there, the first sentence was from my post.

    I think this is probably a example of a consultant/department who decided these medications were in cohort 4, rather than 7.

    Not sure how I was moved up the Cohort but I’d imagine it was based on information from my consultant as nibtrix posted.


  • Registered Users Posts: 15 Delldweller


    Hiya. I said I would post back after starting
    Tremfya in December
    It’s been unbelievable the change
    My psoriasis is mostly gone
    I went shopping in a t shirt and shorts this week for first time in 20 years
    No pain which seems to have increased my energy levels.
    Wife remarked that I was walking differently as I was relaxed and not minding raw areas
    I was on the fence about biologics until I found this thread. I do realise that they don’t work for everyone but I’d shout to my old self. Try it


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  • Registered Users Posts: 43 suttonboi1


    Hiya. I said I would post back after starting
    Tremfya in December
    It’s been unbelievable the change
    My psoriasis is mostly gone
    I went shopping in a t shirt and shorts this week for first time in 20 years
    No pain which seems to have increased my energy levels.
    Wife remarked that I was walking differently as I was relaxed and not minding raw areas
    I was on the fence about biologics until I found this thread. I do realise that they don’t work for everyone but I’d shout to my old self. Try it

    Great news. It’s amazing both the physical and mental benefits it brings. I came off Humira last year for Covid reasons when my skin was fully clear and had been for over a year. When it came back it just put me in such a bad place mentally and physically. It has such an impact on so many aspects of your life.

    I started back on an Humira biosimilar last week and I am already seeing improvements which has been amazing. Looking forward to a few weeks / months down the line to when I can get back in T-shirt’s and shorts.


  • Registered Users Posts: 32,381 ✭✭✭✭rubadub


    Psychedelics as a novel approach to treating autoimmune conditions


    Case Report: Resolution of Rheumatoid Arthritis in a Patient Consuming Psilocybin Mushrooms
    He was given a diagnosis of rheumatoid arthritis and offered low-dose prednisone and advised to start methotrexate. The patient declined the methotrexate but took prednisone for two weeks.

    Shortly after that he consumed some psilocybin mushrooms and was surprised to observe that his joint pain and swelling completely resolved for about 24 hours. In addition, his seasonal allergy symptoms also completely resolved. When he had another flare of joint pain several years later, he took four doses of psilocybin mushrooms of 2 grams each over a two-week period and again had complete resolution of his symptoms. That was one year prior to the writing of this paper. Subsequently he has been using psilocybin mushrooms periodically and he has not experienced any signs or symptoms of rheumatoid arthritis since then.

    "Classic hallucinogens" (e.g. magic mushrooms, LSD, cacti) are gaining popularity for the treatment of depression. Mushrooms are being legalized in some US states for medicinal use. People are also using minimal "microdoses" for depression and just general alertness. This means taking a small dose so low there is no normal influence of the drug, it would be like having a shot glass of beer.

    For many years they have been known as a treatment for "cluster headaches", there were online groups of growers who would send them out free to sufferers.

    There might be some classic hallucinogen analogs which are still legal here.


    Psychedelics and Immunomodulation: Novel Approaches and Therapeutic Opportunities
    Thus, these compounds emerge as very promising candidates in many diseases with chronic inflammatory etiology and pathology, such as atherosclerosis, psoriasis, rheumatoid arthritis, systemic lupus erythematosus, type I diabetes, multiple sclerosis, schizophrenia, depression, and Alzheimer’s disease.


  • Registered Users Posts: 16,702 ✭✭✭✭dahat


    So how many mushrooms do I need to pick when they are in season?


  • Registered Users Posts: 509 ✭✭✭The DayDream


    Dunno about microdoses but i can tell you my experience wirh regular doses of shrooms or lsd: does nothing for psoriasis other than your mind will certainly be elsewhere for a while.

    As for depression I would say I could see it being effective as for a day or two the lingering after effects often had me still feeling that positive 'at one with the cosmos' feeling, but it always wore off and I went back to being a miserable git with an itchy painful epidermis.

    The little shrooms that grow out of the cow shíte in Ireland you need a couple hundred to trip on so id say a microdose is maybe 50? You can make tea with it also. I always found the big ones like you get in america a lot more reliable and potent. Be aware they dont agree with everyones stomachs, they are a poison after all but microdoses should be okay for most people I'd imagine.


  • Registered Users Posts: 1,002 ✭✭✭Dufflecoat Fanny


    Dunno about microdoses but i can tell you my experience wirh regular doses of shrooms or lsd: does nothing for psoriasis other than your mind will certainly be elsewhere for a while.

    As for depression I would say I could see it being effective as for a day or two the lingering after effects often had me still feeling that positive 'at one with the cosmos' feeling, but it always wore off and I went back to being a miserable git with an itchy painful epidermis.

    The little shrooms that grow out of the cow shíte in Ireland you need a couple hundred to trip on so id say a microdose is maybe 50? You can make tea with it also. I always found the big ones like you get in america a lot more reliable and potent. Be aware they dont agree with everyones stomachs, they are a poison after all but microdoses should be okay for most people I'd imagine.

    Jesus man 50 is not a microdose thats a big dise


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  • Moderators, Science, Health & Environment Moderators, Social & Fun Moderators, Regional West Moderators Posts: 60,017 Mod ✭✭✭✭Gremlinertia


    Mod note - since this isn't a legal treatment here yet i'll have to ask you to refrain from discussing them for now.


  • Registered Users Posts: 43 suttonboi1


    So I took my third shot last Thursday Day 8, after two shots on the first day. Up until Day 8 I was seeing some improvement, scaling had all but stoped and my skin wasn’t itchy.

    On Saturday however, Day 10, I noticed so slight scaling and my skin was starting to itch, this has gotten worse over the last 5 days or so. So it looks like my skin really started to improve rapidly, but has not started to regress.

    Very strange and very down heartening. Not really sure why or how this happened, has put me in a bit of a mood for the last few days. Another week to my next shot so hoping that will kick off some improvement again.

    Does anyone else have experience of this starting out on Humira or a Biosimilar?


  • Registered Users Posts: 23 shanley2011


    nibtrix wrote: »
    I think there was a quoting error there, the first sentence was from my post.

    I think this is probably a example of a consultant/department who decided these medications were in cohort 4, rather than 7.

    Was the vaccine done at your go or consultant?


  • Registered Users Posts: 1,305 ✭✭✭nibtrix


    Was the vaccine done at your go or consultant?

    My consultant (rheumatologist) said they were only putting people on rituximab not sure I have the right spelling there!) in cohort 4, and any other meds MIGHT put you in cohort 7 but they hadn’t yet gotten around to creating that list. That was 3 weeks ago or so.

    I sent an email to my GP the same day, got a phone call from them 2 days later and got the jab 2 days after that. As far as they were concerned I was definitely cohort 4. When I went in it was mostly 80+ getting second doses so they had finished most of their 70+ at that point.


  • Registered Users Posts: 12,095 ✭✭✭✭Gael23


    Got the Pfizer vaccine yesterday.
    Not feeling 100% but nothung dreadful either


  • Registered Users Posts: 346 ✭✭Bojill


    Gael23 wrote: »
    Got the Pfizer vaccine yesterday.
    Not feeling 100% but nothung dreadful either

    It's the second one you need to watch out for.
    It hit me the morning after, but only lasted a few hours.


  • Registered Users Posts: 8,509 ✭✭✭brevity


    I got the moderna one a week ago. Was tired that night and had a pain in my arm for a day or so.


  • Registered Users Posts: 349 ✭✭hbhook


    Could you detail your experience with Tremfya? My sister was recommended it in the last 18 months or so and it has changed her life. Thanks.


  • Registered Users Posts: 1,002 ✭✭✭Dufflecoat Fanny


    ive been using a cream on my shin for the last few days and its stopped scabbing over and the swelling is gone. It's Dr Clare healing cream it has calendula cream, comfrey cream, lavender essential oil, tea tree essential oil and st. johns wort oil in it. 11.50 for 60ml tub. hopefully this is the one for me.


  • Registered Users Posts: 8,509 ✭✭✭brevity


    hbhook wrote: »
    Could you detail your experience with Tremfya? My sister was recommended it in the last 18 months or so and it has changed her life. Thanks.

    It didn’t really work for me. I have been on Humira, Stelara and now Rinvoq.

    Rinvoq seems to be working well for me


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  • Registered Users Posts: 6,215 ✭✭✭khalessi


    For the likes of Humira or other biologics,

    how often do you administer them and do you inject yourself?

    I am thinking of going on biologics but was wondering about the schedule of administration.


  • Registered Users Posts: 1,305 ✭✭✭nibtrix


    khalessi wrote: »
    For the likes of Humira or other biologics,

    how often do you administer them and do you inject yourself?

    I am thinking of going on biologics but was wondering about the schedule of administration.

    They’re all slightly different. Most are self-administered and you have a choice of using either a syringe or an injection pen, and they will teach you how to use it. Some are taken every 2 weeks, some weekly, some monthly.

    There are a few biologics which are given by infusion in the hospital/clinic, but I don’t think they are usually the first type that they would put you on.

    You’ll have to talk to you consultant and see which they recommend.

    Edited to add: I used Humira first, every 2nd week, started with syringes (as I like the illusion of control :-) ) and switched to pens - they are much easier. It worked really well for me but I had to go off it for a while as I had pneumonia, and when I went back on it wasn’t as effective. Switched to Enbrel taken weekly (injection pens) but it never worked well for me.
    Currently on Cosentyx taken monthly, it’s taken a long time and an increased dosage to be effective, but it’s definitely working now.
    I taken the biologic for psoriatic arthritis as my psoriasis itself isn’t that bad.


  • Moderators, Music Moderators Posts: 3,726 Mod ✭✭✭✭eeloe


    nibtrix wrote: »
    They’re all slightly different. Most are self-administered and you have a choice of using either a syringe or an injection pen, and they will teach you how to use it. Some are taken every 2 weeks, some weekly, some monthly.

    There are a few biologics which are given by infusion in the hospital/clinic, but I don’t think they are usually the first type that they would put you on.

    You’ll have to talk to you consultant and see which they recommend.

    Edited to add: I used Humira first, every 2nd week, started with syringes (as I like the illusion of control :-) ) and switched to pens - they are much easier. It worked really well for me but I had to go off it for a while as I had pneumonia, and when I went back on it wasn’t as effective. Switched to Enbrel taken weekly (injection pens) but it never worked well for me.
    Currently on Cosentyx taken monthly, it’s taken a long time and an increased dosage to be effective, but it’s definitely working now.
    I taken the biologic for psoriatic arthritis as my psoriasis itself isn’t that bad.

    Not all of the biologics come in a pen form, some are syringe only.

    I'm currently on Stelara which was originally administered every 12 weeks.


  • Registered Users Posts: 12,095 ✭✭✭✭Gael23


    khalessi wrote: »
    For the likes of Humira or other biologics,

    how often do you administer them and do you inject yourself?

    I am thinking of going on biologics but was wondering about the schedule of administration.

    They are all different. I’m in Humira which is supposed t9 be every 2nd week but I take it weekly. A nurse will assist you the first few times until you are comfortable doing it yourself.


  • Registered Users Posts: 21 Phil69


    Has anyone found any types of food to make their Psoriasis worse? I have started to take out a few food groups to see if it helps any and I wondered if anyone has any success with it. I was Stelara but never felt comfortable with it so I am looking to try another approach.

    BTW, I thought I posted about this earlier in the week but my post seems to disappeared or maybe it did not post properly ;)


  • Registered Users Posts: 4,444 ✭✭✭wonga77


    A few years back I cut out a load of stuff from my diet trying to narrow down the search for a trigger food.
    I didn't feel any better physically but my scalp psoriasis which had about 75% cover completely disappeared. It didn't improve anywhere else on my body though. I gradually introduced stuff back into my diet and the one thing that I found triggered it was white bread. I did eat a fair bit of bead/ deli rolls, pastries etc. Cut them out and use spelt bread instead.
    Scalp psoriasis is now down to 1 tiny little dot the size of a 2 cent coin which I can live with.
    It didn't improve it anywhere else but the scalp clearing up was an amazing feeling


  • Registered Users Posts: 32,381 ✭✭✭✭rubadub


    Phil69 wrote: »
    Has anyone found any types of food to make their Psoriasis worse?
    I have tried giving up potatoes, bread & rice and have had big improvements. 6 weeks ago my arms were so bad I was worried about getting a vaccination, where they would actually be able to inject. Now I can wear a t shirt. I was fasting a few days too, and dieting in general.

    I am also doing UVB light treatment at home, but was having no real success until changing my diet & calorie intake.

    I am only treating my upper body with light. My legs were improving and then last week I drank a lot and ate chips, and my legs were really bad in the next few days and have since healed a lot again.


  • Registered Users Posts: 2,368 ✭✭✭Fionn


    I'm trying a gluten free diet at the moment to see if that has any impact. I haven't drank alchohol in months and months, but for me drink isn't a trigger, I've also given up foods with high carbs like white bread, rice, spuds and everything sweet like cakes biscuits etc. for over a year now, no real improvement in my psorisis.

    I'm also on intermittant fasting, usually doing OMAD (one meal a day)

    After this I may consider red meat and maybe dairy.


  • Registered Users Posts: 21 Phil69


    Thanks wonga77, rubadud and Fion for your replies.

    Interesting about the white bread wonga77, I have cut out all gluten now but not sure if that is the culprit I think white bread is a good suspect for being one of the main triggers. Thanks for the reply.

    rubadud, do you think potatoes, rice and bread are all a trigger? I have left potatoes and rice in my diet but took out the bread, I hoping potatoes are not an issue as eat a fair few of them ;). I think fasting definitely helps. Thanks for the reply.

    Fion, I suspect gluten to be one of the main triggers but also suspect a few others too like dairy, meat and processed foods. I have always done fasting, I am not sure if it has ever made much difference altho my psoriasis is not as bad it used to be. Thanks for the reply.

    Anyway, decided to cut out gluten, dairy, meat, poultry, processed foods of any kind. I am also taking a 2000 IU of vitamin D3. I have been doing all of this for about 10 days now, started vit d3 about 3 weeks ago. I am already seeing some improvement in my legs and a few other patches. I will definitely update you guys at the end of the month to see my results after 1 month.

    Thanks Phil


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  • Registered Users Posts: 2,368 ✭✭✭Fionn


    yeah been on Vit D3 for over a year now and been taking
    L-Glutamine Powder the same length of time.

    Going to give the Glutin free thing a month before I move on to something else, see if I can detect what might be causing this.

    I'm convinced, that this condition is connected somehow to what we take into our bodies as opposed to a skin problem.

    There was a time that I didn't have psoriasis, so need to figure out what changed!!

    :)


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