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Psoriasis

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  • Registered Users Posts: 12,112 ✭✭✭✭Gael23


    I’m struggling quite a bit.

    I got a severe infection in September which put me in hospital and whatever that has done to me I’ve lost control of my Psoriasis. I had something similar but not as bad in the past which settled after a period of time but with Steroids and various creams this just isn’t. Now Prof Kirby wants to add Methotrexte along with my Humira or else switch me to infliximab infusions which would be my preference



  • Registered Users Posts: 1,581 ✭✭✭BohsCeltic


    I used to have this quite bad. I could barely walk. Putting on dovobet helped but very time consuming as it was all over my body.

    I was in hospital for 6 months and didn't have to use anything, it just went, I have some scarring/red mark's on my feet but it's not bad.

    I gave up alcohol and cigarettes too. Maybe that's why it went, plus at the time I was very down.

    I do have some on my head and Nizoral isn't doing much. I'm still waiting to see dermatologist. I have since developed what appears to be Dermatographia but I'll happily take that over psoriasis



  • Registered Users Posts: 55 ✭✭ro23


    Anyone had any joy sourcing Cocois ointment of late? Only thing that works for me when my scalp psoriasis is out of control but can't get it anywhere local and not too much joy online either.



  • Moderators, Science, Health & Environment Moderators, Social & Fun Moderators, Regional West Moderators Posts: 60,169 Mod ✭✭✭✭Gremlinertia


    Absolutewly, would get chesty borderline bronchitis lungs and/or sinus issues then my main skin spots would go mad after. Scaly, weepy and itchy. Only relief to be had was antihistamines, cool showers andlying on a towel with no clothes or air to further irritate



  • Registered Users Posts: 12,112 ✭✭✭✭Gael23


    Haven’t used that in years.

    Have taken 2 doses of Methotrexate nd it’s pretty awful. The diorrhea is quite something



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  • Moderators, Music Moderators Posts: 3,730 Mod ✭✭✭✭eeloe




  • Registered Users Posts: 876 ✭✭✭3d4life


    @Gael23 Many people have GI issues with the oral version.

    For oral, push back if dose over 15mg. ( studies up on Pubmed confim this )

    There is an injectable form 'Nordimet' - easier on the digestive system.

    Still, MTX is a filthy drug :(



  • Registered Users Posts: 7,842 ✭✭✭YellowLead


    For me it’s strep throat that does it - all 3 times I’ve had strep throat in my life it was followed by severe guttate that would appear about 3 weeks later and be all over my body for months leaving marks but would mainly clear in 6 months.



  • Registered Users Posts: 12,112 ✭✭✭✭Gael23


    Im on 10MG MTX. Due to take it tomorrow and I’m up to my neck in work do I can’t afford to be sick on Thursday.

    This mess started for me last September with a strep throat infection that put me in hospital



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


    I have got it from here several times, they only seem to have the 40g in stock. Free delivery if over 38euro

    https://www.inishpharmacy.com/p/cocois-ointment/p-cocois?

    You should be able to get a discount too, I think if you sign up to a newsletter you get one. They are frequently sending me codes for a % discount

    Found it, 10% off https://mailchi.mp/inishpharmacy/signup

    I was surprised to find they did discount dovonex as I thought the price was somehow fixed. I got 15% off it before.



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  • Registered Users Posts: 97 ✭✭Knockieranlady


    I had scalp psoriasis as a child but it disappeared for over 40 years before reappearing last year. I also now have guttate psoriasis and psoriatic arthritis. This week I have started on methotrexate weekly and the Amgevita (Adalimumab) fortnightly injection.

    I have tried all the prescribed creams ointments and lotions and nothing had worked. I bought the Cocois ointment 100g on Amazon, they wouldn’t deliver to Ireland so I only got it this week when my son brought it home from Uk hopefully that will improve my scalp. I found a brilliant little cream on Amazon for the guttate, I’ve been using it for the past three weeks and it has cleared the psoriasis on my arms and is clearing my back it’s called Clotosc and only costs £8.99 for 40g it’s a combination of Coal tar 6% and Salicylic acid 3% I highly recommend it, it’s working for me unfortunately it’s only in 40g tubs but cheap enough to try if you’re not sure. I have found recently that my hair has thinned a lot in the front, I would love any advice on what to do for this, as a woman it’s very embarrassing plus with the scalp psoriasis I haven’t been able to dye my hair and the greying front doesn’t help disguise it either

    sorry for the long winded post but it’s really getting me down lately



  • Registered Users Posts: 97 ✭✭Knockieranlady


    I have exactly this. Pain started in my index finger and then progressed to my knuckles in both hands. The swellings around my knuckles are discoloured. Left hand swelling quite fluid, right hand quite hard. I’ve just started on the injections and methotrexate so hopefully it will improve. X-rays showed no damage yet to the joints just the tendons so hopefully it can be reversed.



  • Registered Users Posts: 1,116 ✭✭✭Sandor Clegane


    Hey all so I got diagnosed with Psoriasis recently, first my dermatologist put me on enstlillar foam and milton baths, it's pretty much cleared all my skin, although I didn't have it bad skin wise, the worst was my groin area, then I had one or two spots on my head, knee and elbow, very small and not noticeable but the cream took it away. He said it was very minor.

    Problem is I got psoriatic arthritis with it, again not bad, fairly mild so far, I'm in no way debilitated I'm actually pain free apart from a couple of minor twinges.

    I went back for a follow up and he recommended Humira to me as a next treatment, at first I thought no big deal but when I got home and did some research I've been terrified ever since, I don't no what to do, the side effects are very extreme, things like cancer risks going up, Neurological problems, MS like symptoms etc...really scary stuff, I honestly don't no if it's worth taking it yet, those risks seem too high for me especially at the stage Im at...I'm wrecked with anxiety, I'm expecting a call off a nurse to show me how to take it but I'm not sure Im ready, don't no what to do really, I'm going to my GP to get some advice too, anyone have any experience with using it?



  • Moderators, Music Moderators Posts: 3,730 Mod ✭✭✭✭eeloe


    I'm on Stelara since 2019, and i was in the same situation as you after i read the side effects, and to be honest my first few weeks i basically told myself i was suffering from all the side effects which was a bit silly of me.


    Stelara has given me my life back, one of the best things i've ever done.



  • Registered Users Posts: 8,529 ✭✭✭brevity


    I had Humira and it’s grand really. I didn’t really notice any issues. It wasn’t prescribed for arthritis though, just Psoriasis. You just have to mind yourself. If you get sick just rest.

    I’ve had a load of the biologic type drugs. Currently on Rinvoq (had Stelara and Cosentyx) and I’m grand for the most part.

    Get the flu jab, if you get sick go to the doctor. You should be fine



  • Registered Users Posts: 1,931 ✭✭✭huskerdu


    I sympathise, I felt the same when I was diagnosed a biologic medication. It feels like a serious decision.

    Remember that The chances of getting the very serious side effects is very low, Lots of people live normal lives while taking biologics with no side effects.



  • Registered Users Posts: 77 ✭✭Bridget Clarke


    Hi. I’m really struggling to get Dovonex over the counter atm. Anyone know of a pharmacy who has it in stock?



  • Registered Users Posts: 12,526 ✭✭✭✭siblers


    Does anyone know of any shampoo similar to Polytar (ones with tar in them) could get Polytar on Amazon but it's about 30 pounds now for one 150ml bottle


    Thanks



  • Registered Users Posts: 1 skinnn


    Yes I had to get tonsil taken out, gutta psoriasis every time I get infection in throat, I can't get coal tar and urea anywhere 😫, does anyone know where can source it , messy stuff but works every time



  • Registered Users Posts: 7,842 ✭✭✭YellowLead


    Have you had the tonsils out and if so do you still get guttate? I’m the same I’ve had really bad guttate all over every time I get strep and it last anywhere between 3 to 9 months - very itchy and I look like i have chicken pox



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  • Registered Users Posts: 12,112 ✭✭✭✭Gael23


    i have been through months of misery following a strep throat infection. Month 10 now and still not in the clear. Been in A&E twice and planned admission two more times.

    Latest from me is that MTX is affecting my Liver so I’m coming off that and Humira and starting Stelara pretty soon.



  • Moderators, Music Moderators Posts: 3,730 Mod ✭✭✭✭eeloe


    Sorry to hear you're having such a bad time!


    Still on stelara here, with no ill effects, which you should be happy to hear, i know that everyone is different, but anyone i've heard on stelara is doing great.

    I had to move from the 45mg dose every 8 weeks out to the 90mg dose every 12, but i may have to start bringing that back in to 11 or 10 weeks, i get a tiny little patch on my leg and one behind my ear at week 11, and it takes a week or two to go away, so if i bring the shots together a bit closer together that should eliminate that.



  • Registered Users Posts: 12,112 ✭✭✭✭Gael23


    I’ll send you a message soon. I dint know my doses yet but I know it’s an infusion first then av i 4 weeks later followed by 8 weekly injections after



  • Registered Users Posts: 18 ronnick


    Hello im new to this. Ive had psoriasis for the last 20 years which is nearly half my life. I don't have massive patches but i do have lots of little patches all over my body including my face. I have stiffness in my knees but not confirmed as arthritis. Within the last year i have developed nail psoriasis and nothing works to clear it for me. Ive been to a dermatologist a few times and now she is recommending that i go on Stelara. I'm scared of the side effects and the lower immunity especially with Covid rampant again. i might get a cold at winter but nothing that knocks me out. I work in a job where i meet lots of different people every day. I know a face mask will help but the thought of having to wear a face mask for the next 40years (if i live that long) is terrifying. I'm due to start in the coming weeks. I've had my flu and pneumonia vaccine.. How are ye finding stelara?



  • Moderators, Music Moderators Posts: 3,730 Mod ✭✭✭✭eeloe


    Honestly, don't even worry about it!

    I've been taking stelara for the last number of years, and i've not got any worse colds or flu's than i used to get.

    The benefits really do out weigh the risks, you'll get your life back when you start Stelara, and you'll wish you started it sooner



  • Registered Users Posts: 8,529 ✭✭✭brevity


    Just echoing what eeloe said, I've been on heaps of biologics and haven't had any major issues. Humira, Stelara and another one that escapes me.

    I'm on rinvoq now it's kept the worst of the psoriatic arthritis away but there are a few patches of psoriasis on my legs.

    I'm gonna start taking some vitamin d soon as I'm worried that the rinvoq will stop working and I've heard that strong doses of vitamin d can help with anti inflammatory conditions.



  • Registered Users Posts: 18 ronnick


    Thanks eeloe and brevity for responding. It's good to get someone's say on this rather than just the docs. It's a big step to take but I don't think I have an option really.



  • Moderators, Music Moderators Posts: 3,730 Mod ✭✭✭✭eeloe


    If you have anymore questions, don't hesitate to PM me, i don't see this thread quite a lot.

    It will genuinely be life changing for you.



  • Registered Users Posts: 547 ✭✭✭Amzie


    Hey I need advise, I had strep throat which in turn has caused me to get guttate psoriasis. I have a small bit of plaque psoriasis anyway. Has anyone had the guttate psoriasis go away or am I stuck with it now ? It’s so itchy and kinda sore in parts too seems to be getting worse not better.



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  • Registered Users Posts: 7,842 ✭✭✭YellowLead


    I have had that three times from strep throat and each time it has gone away. The first time took about 6 months, the next two times took 2-3 months. Nothing really worked for me except a sun holiday, the creams I tried didn’t have much effect except to minimise scaling. But 2 weeks in the sun and it vanished.

    Hang in there!



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