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Psoriasis

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  • Registered Users Posts: 7,703 ✭✭✭Raoul


    I just randomly saw this thread on the front page. I was diagnosed with Psoriasis recently. I maybe had it for a long time but never really noticed, just had some dry elbows the odd time but passed no remarks. Then last year, I had a major operation due to a major illness and I had lots of dry skin, particularly in the perianal region and after colonoscopies and a couple of other procedures I went to a dermatologist who told me I have psoriasis. I also have a nail with it that I was treating for a fungal infection.

    I didn't know the athritis connection until I was just reading this thread and now I am a bit worried as I would often have sore and stiff knees, I get pains in my fingers sometimes, even from just typing or holding my phone and I have a tendon injury I could never seem to get rid of in my elbow that can be very sore when doing exercise. I also get a really stiff back from sitting for long periods of time or sometimes lying. Now I am worried this could all be linked to the psoriasis.



  • Registered Users Posts: 761 ✭✭✭Foggy Jew


    Enstillar. Great stuff. I was suffering badly - very thick scaling on thighs, butt & midriff. I was leaving a trail of flakes in my wake as I walked. A month into using Enstillar, all scales are gone & all that remains is a bit of discolouration. I don’t have to hoover my bed before getting into it these nights. Also, Betnovate scalp lotion. Amazing stuff. I wore a black tee-shirt last week for the first time in 15 years. I really loved wearing a black tee-shirt. 😊

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



  • Registered Users Posts: 4 WhoKnowsAnyMore


    Hi All

    I recently got referred to I.d.a.c.i.o, for injections for Psoriasis. Does anyone have any experience with them / the drug?

    I have found them very rude and pushy on the phone, they persist in calling me to determine when I will be starting the drug, but I would prefer to wait a bit longer.

    Does anyone know why they are so keen to start me on this drug, is it commission based for them, and me delaying the starting time is costing them a sale?

    Thanks

    Post edited by WhoKnowsAnyMore on


  • Registered Users Posts: 8,504 ✭✭✭brevity


    I've never had to deal with the company directly and I've been on a few biologics.

    Normally the high tech script is sent to my pharmacy and I inject myself.

    There might be a queue for people trying to get the drug and they are ringing around to see who needs it. My pharmacist said that there is a shortage of all drugs at the moment.



  • Registered Users Posts: 4 WhoKnowsAnyMore


    Thanks, brevity

    I'm not sure, this seems to be related to when to schedule a nurse to visit to demonstrate how to use the injection pen. But the agent appears very rude and taken aback that I am not ready to start just yet. I think its a home care service called T.C.P operating for I.d.a.c.i.o

    If you don't mind me asking - Have you used this biosimilar before? Are the infection/cancer risks a real cancer or is it greatly overstated?

    Thanks



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  • Registered Users Posts: 8,504 ✭✭✭brevity


    No worries.

    I have been on Humria which seems to be the same as Idacio (Adalimumab). It worked great for a while but stopped working and i switched to Stelara, Rinvoq, Cozentex and I am now on Skyrisi. Which isn't doing anything for me...

    It can affect your immune system but once you get regular blood tests you will be fine. If you feel sick go to your doctor.

    You will be fine.



  • Registered Users Posts: 4 WhoKnowsAnyMore


    Thanks, brevity

    I'm sorry to hear that the medication has stopped working for you, hopefully you can find one soon that starts to work as well as Humira did for you.



  • Registered Users Posts: 7,722 ✭✭✭YellowLead


    I was prescribed eumovate but they don’t have it in stock in about 4 different pharmacies I tried. Anybody know anywhere in Dublin or surrounding counties that has it?



  • Registered Users Posts: 1,215 ✭✭✭black & white


    Could be Psoriatic Arthritis, go and see your GP, he might be able to tell straight away or maybe refer you to a Rheumatologist. The only advoce I can give is to do it as soon as possible. I left it way too long to go and am paying the price for it now.



  • Registered Users Posts: 4 WhoKnowsAnyMore


    Hi black & white

    Not the OP - but If you don't mind me asking, what damage was done by leaving it too long, and how long did you leave it in weeks, months, or years?

    I am waying up starting a biosimilar at the moment, so just curious how long before damage is irreversible.

    Thanks



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  • Registered Users Posts: 1,215 ✭✭✭black & white


    the stiffness in my ankles, shoulders, wrists and knees means I don’t have much movement in any of them. Problems with walking, standing for anything more than 15/20 minutes, sleeping on my sides, balance is effected as I can’t move quickly enough to counter.

    not trying to scare anyone, that’s just my reality and one of the reasons is that I left several years pass before I did anything.

    I’m currently on Remicade, before that I have used Enbrel, Cosentyx, Humira, Cinzia and Simponi. I eventually developed a resistance to all of them. This is over a period of 20 years, for the 15 years or so before that, I was on tablets, can’t remember which but there was at least 4/5 different ones.

    I’ve had PA as well as Ankylosing Spondylitis since the late ‘80’s.

    Best of luck to you.



  • Registered Users Posts: 809 ✭✭✭Earendil


    Hi folks,

    family member emigrated recently and there's few unopened/boxed cans of Enstillar there if anyone could use them.

    Just ping me a msg if interested.



  • Registered Users Posts: 1 nivag-joe


    Hi folks,

    I had a consult with a dermatologist, it has been suggested that I start a biologic for Psoriasis and Psoriasis Arthritis. have had Psoriasis for about 10 years, not sure I have PA just some joint pains and back ache.

    I'm unsure about this after reading about these drugs online. Something I have come across reading this forum is vaccines. I did not get the covid vaccine [health anxiety reason, not an anti vacc]. I did have covid last year. I don't get flu or pneumonia vaccines either due to same anxiety.

    How important is it to have all these vaccines if i am to start a biologic. I'm terrified to start this injection and my health anxiety is off the charts currently, I just don't see a major reward.

    Any advice or comments would be greatly appreciated.

    Post edited by nivag-joe on


  • Registered Users Posts: 8,504 ✭✭✭brevity


    The biologics affect your immune system so it is important you get the vaccines. Maybe not the COVID one since you have already had COVID. But I would ask your doctor.

    While I was on Stelara I had 4 COVID Vaccine injections. They put me on an at risk list and I was contacted to attend the appointments.

    You would have to weigh up the pros and cons and how it suits your lifestyle. They don't put you on these things for fun, it's largely a last resort when the creams and light therapy has stopped working.

    When the biologics work, they are life changing.



  • Registered Users Posts: 104 ✭✭grizzcol2


    Hi Folks

    I was diagnosed years ago with psoriasis - wasnt that bad - patches on elbows and knees..over the last few years starting getting it on the nails and then in the last 6 months started getting some joint pain - primarily in the knees...

    was at a dermatologist - she's prescribed Enstillar for the patches on the body - so far so good - funnily enough the pain in the knees appears to have gone as well - dont know if thats related to the steriods in enstillar?

    But she's referred me to a Rheumatologist - and if diagnosed with Psoriatic Arthritis might have to go on something like Methotrexate 

    from reading some of this thread wouldnt appear to be the choice of many due to side effects - that fair to say?



  • Registered Users Posts: 1,215 ✭✭✭black & white


    brevity is correct, your immune system will be affected, some Dr's prescribe Methodrexate to raise your immune system so maybe yours will. Re vaccines in general, I have been told the only one is cannot get is for Yellow Fever so it does prevent travel to some exotic countries.



  • Registered Users Posts: 8,504 ✭✭✭brevity


    Is it the bottle of liquid?

    I have used it quite a bit but cannot say it's done much for me.

    It can sting a bit on the more inflamed parts of the scalp.



  • Registered Users Posts: 690 ✭✭✭Newbie20


    Sorry I haven’t read back so this might have been mentioned plenty of times but I got Phototherapy in 2018 and it was the best thing I ever did. It cleared me completely. I got a second course of it this summer even though it hadn’t come back anywhere near as bad, but my arms were the most affected area and I had got used to being able to enjoy wearing t-shirts. I just finished there a couple of weeks ago and am currently free of psoriasis again. I’m hoping to get another few years out of it if I’m lucky.



  • Registered Users Posts: 41 bren1916


    As above I believe it (enstillar) is by prescription only. By way of update, I actually passed the bottle on to my sister (her scalp was really bad) and it almost cleared it up immediately (she had been trying all sorts of products for years).



  • Registered Users Posts: 7,722 ✭✭✭YellowLead


    Mine is long gone after trips abroad to the sunshine. I only ever get it after strep throat infections - it appears and then nothing clears it until I hit the sun. I was just desperate for a few months in winter/spring there to see if anything else could help.



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  • Registered Users Posts: 32,379 ✭✭✭✭rubadub


    I see a guy on etsy selling homemade UVB LED lamps, with timers attached. These would not get very hot like the regular bulbs


    https://www.etsy.com/ie/shop/uvclinic?ref=l2-about-shopname


    The commercial ones are still very expensive, just like the flourescent bulb ones are often very expensive.

    https://kernelmedical.com/product/led-durable-laser-phototherapy-handheld-led-308-nm-light-source-skin-diseases/


    The laser and LED seem comparable https://www.frontiersin.org/articles/10.3389/fmed.2023.1275912/abstract



  • Registered Users Posts: 8,504 ✭✭✭brevity


    I have been on Skyrizi now for about 9 months and it hasn’t done a thing for me. At my last appointment my dermatologist put me on methotrexate and I have been on that for about 10 weeks I suppose. No changes there either. My psoriasis is very itchy and sore now which is disappointing considering the amount of biologics I have been on. Skyrisi is the 5th or 6th one…

    I cut out the drink and the majority of junk foods to hopefully help things but nothing’s working.

    I’m also taking this probiotic https://www.hannasillitoe.com/products/multi-strain-biotic but it’s early days yet.

    I have an appointment in December so we’ll see what happens then.



  • Registered Users Posts: 8 tenya


    hi. Been reading a lot of the comments and see enstillar seems to be the most effective.

    My husband has very bad psoriasis on his head (non on the body) and has tried many different treatments and nothing seems to be working (for long) anyways..

    He was using dermovate scalp for some time which seem to work at first but then stopped working again..

    Would a GP prescribe enstillar or does he need to see a dermatologist? We live rurally..



  • Registered Users Posts: 68 ✭✭tallaghtjoe


    GP could prescribe it. Not sure if its for scalp (maybe it is), but GP should explain that.

    Enstillar is effective while using it, but when stop using it, like all the others the psorisis still comes back. My experience anyway.



  • Registered Users Posts: 8 tenya


    thanks for your reply..

    Yes that’s the problems with steroids, isn’t it…

    But I read some comments on here how someone spaced out the usage so didn’t use daily but weekly or something and still got results with that ..

    will see if the gp will even prescribe it



  • Registered Users Posts: 1,215 ✭✭✭black & white


    I use Nizoral Shampoo once or twice a week and it definitely helps, you can get it in your local chemist and it's about 20 Euro a bottle.



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