Psoriasis

khalessi · 23-05-2021 11:58pm

Are you entitled to a long term illness card for Psoriasis esp if chronic

eeloe · 24-05-2021 9:53am

The DayDream wrote: »

Finally after 20 years of suffering with this I got to see a dermatologist. I went to Dr. Rupert Barry as another poster recommended and found him very good. I am going to be starting on Stelara hopefully after I go back to get blood work done, and he gave me a script for protopic for my face as well.

Even though I havent started the meds yet I have noticed an improvement in my skin already, I think it must be because I was so relieved to get prescribed something that may actually work as opposed to stupid steroid creams that do more harm than good.

It's crazy that I had to take the bus from Donegal to Dublin to get this seen to and that the public system is such a joke you can't even get an appointment for over 2 years. My GP retired and the one took over his office is a complete arsehole it's like pulling teeth to get him to give you anything and he's clueless about psoriasis anyway.

After hearing for so long how psoriasis is incurable and how much the biologics cost I had given up on ever getting relief. I also had a terrible experience around 10 years ago I did manage to get into a derm in Sligo on the public system. After being seen to 2 hours past my appointment time, last in group of about 15, half of whom arrived after me, I was made strip off and sit waiting for the derm while a nurse stared at me (i realized later she was staring at my tattoos not my psoriasis but still). Only to get prescribed the same BS creams at the end of it and so I never went back.

Hopefully this has a much happier ending. The fact that psoriasis is not on the long term illness list is a diagrace it is chronic and incurable what more criteria could there be? We really need to fight for people to be able to access the meda that work not just throw creams at them and fob them off.

I've been on Stelara for 3 years and am basically psoriasis free, fingers crossed for you.

Gael23 · 24-05-2021 11:29am

khalessi wrote: »

Are you entitled to a long term illness card for Psoriasis esp if chronic

No it doesn’t come under the LTI scheme

The DayDream · 24-05-2021 9:30pm

Gael23 wrote: »

No it doesn’t come under the LTI scheme

Which is a complete joke. It doesn't get more long term than psoriasis. Chronic, incurable, exacerbated by stress, doesn't kill you but doesn't go away. How could it be considered anything else but long term?

khalessi · 24-05-2021 9:58pm

The DayDream wrote: »

Which is a complete joke. It doesn't get more long term than psoriasis. Chronic, incurable, exacerbated by stress, doesn't kill you but doesn't go away. How could it be considered anything else but long term?

Agreed and the price of some of the meds are crazy, also if left untreated can have profound effects on health including cardiac health.

dyl2u · 25-05-2021 12:45am

The DayDream wrote: »

Which is a complete joke. It doesn't get more long term than psoriasis. Chronic, incurable, exacerbated by stress, doesn't kill you but doesn't go away. How could it be considered anything else but long term?

Thats the thing though, depending on how severe of a case you have it can cause various other life threatening diseases that could kill you. Not to mention research has shown those who have been diagnosed with moderate to severe psoriasis before the age of 25 have shown to have a higher mortality rate. People forget the inflammation happening internally is going on 24/7 and affects your entire body, eventually over time all that inflammation is going to wear your body down.

YellowLead · 31-05-2021 6:33pm

Broke out in really bad guttate following a strep throat infection. I have had it twice before, also following strep throat. The only cure for me that worked the other two times was a trip abroad to the sun (the sun in Ireland does feck all, not sure why, maybe not enough uvb gets through).

But there might be new creams out there that work for guttate, as I’m worried I might not get abroad until August at least and don’t want to spend the summer looking like i have chicken pox/the plague.

Anyone with bad guttate (all over) used a cream that worked?

Gael23 · 31-05-2021 10:53pm

An attack of guttate caused by strep troath takes ages to go. It will clear up but it takes its time

Sandor Clegane · 02-06-2021 3:37pm

Anyone on here suffer from Psoriatic arthritis?

I had a persistent rash on my inner thigh and scalp area, doctor tried treating it over the phone, thought it was fungal but nothing he was prescribing was working, I eventually went in to see him and said he thinks it's actually a form of psoriasis.

Anyway I got this foam stuff from him and it's after improving it a lot, gone from my scalp and 90% gone from my inner thighs/groin, just a very faint pink now..

But on top of the rashes I've also been having problems with my fingers, my index finger is gone very swollen and is very painful, I can hardly move/bend it, my little finger is also affected but not as bad, he said it could all be connected so when I goggles it Psoriatic arthritis came up.

Have another appointment with him to try and sort something out because my finger is unbearably sore, very swollen and hard and making everyday things and tasks extremely difficult.

Anyone else experience anything similar?

brevity · 02-06-2021 6:28pm

Sandor Clegane wrote: »

Anyone on here suffer from Psoriatic arthritis?

I had a persistent rash on my inner thigh and scalp area, doctor tried treating it over the phone, thought it was fungal but nothing he was prescribing was working, I eventually went in to see him and said he thinks it's actually a form of psoriasis.

Anyway I got this foam stuff from him and it's after improving it a lot, gone from my scalp and 90% gone from my inner thighs/groin, just a very faint pink now..

But on top of the rashes I've also been having problems with my fingers, my index finger is gone very swollen and is very painful, I can hardly move/bend it, my little finger is also affected but not as bad, he said it could all be connected so when I goggles it Psoriatic arthritis came up.

Have another appointment with him to try and sort something out because my finger is unbearably sore, very swollen and hard and making everyday things and tasks extremely difficult.

Anyone else experience anything similar?

Yea I have it. I was on Tremfya for it. I also had arcoxia. It was ok but it did nothing for my skin which if anything started to get worse.

I’m on Rinvoq now and it’s good. No pain and the psoriasis seems to be clearing up.

eeloe · 03-06-2021 8:50am

The last few months, i've been having some issues with my fingers, mainly my pinkies and a couple of knuckles on others, and i was hoping it was down to training and not actually psoriatic arthritis....now that i think of it, i have a feeling it could be PA!

Philipmcnill · 14-06-2021 3:11pm

Tremfya works perfect for Psoriasis but need liver tests before. Anyone know if this is safe to take a Pfizer vaccination with Tremfya?

suttonboi1 · 14-06-2021 7:43pm

A while since I posted but took my 7th shot of Imraldi last Thursday, 10 weeks since my first double dose. Progress seems to be ok, drastic improvement days 5-10 from taking the shot then some regression until I take my next one 14 days later but overall improving in the two week cycle. P nearly clear from my arms and legs apart from some pigmentation of the skin which I was told by the consultant will clear in a few weeks. Still a reasonable bit on my hips and back but definite improvements.

Great to be able to wear shorts and T-shirt’s comfortably for the past few weeks.

nibtrix · 14-06-2021 8:39pm

Philipmcnill wrote: »

Tremfya works perfect for Psoriasis but need liver tests before. Anyone know if this is safe to take a Pfizer vaccination with Tremfya?

It’s probably something you should talk about with your doctor, or the nurse helpline if there is one at your consultants.
From what I have seen online there is no issue with taking any of the approved Covid vaccines while on a biologic treatment, as they are not live vaccines. Most sources suggest the mRNA vaccines such as Pfizer are better for those who are immuno-compromised due to medication.
I am not a medical professional so please do your own research or speak to your doctor.

I am on an interleukin inhibitor similar to Tremfya (Secukinumab) and on methotrexate and both my GP and consultant advised I get the vaccine. They also advised that there is a chance the vaccine will be less effective due to my lowered immune response.

Gael23 · 17-06-2021 11:44pm

Was with Prof Kirby today. First thing he commented in that he doesn’t often see someone with Psoriasis wearing shorts.
Re Tremfaya, talk to your doctor on that one

honeyjo · 18-06-2021 3:40pm

I have Psoriatic Arthritis. It started with a sore ankle and a swollen left pinkie in 2019. I saw Prof Mullen in TUH who diagnosed me.
I'm on Cocentyx (Secukinamb) two injections once a month.

Speak to your GP and get a referral.

senordingdong · 19-06-2021 3:15pm

eeloe wrote: »

The last few months, i've been having some issues with my fingers, mainly my pinkies and a couple of knuckles on others, and i was hoping it was down to training and not actually psoriatic arthritis....now that i think of it, i have a feeling it could be PA!

I ignored mine presuming it was from training, but I'm exploring dietary causes for a few months before I settle into prescriptions.

brevity · 19-06-2021 4:42pm

Intermittent fasting is supposed to be good for autoimmune disorders.

Might give it a go if the Rinvoq stops working.

https://www.youtube.com/watch?v=vhmtoAYVRSo

Sandor Clegane · 20-06-2021 5:36pm

senordingdong wrote: »

I ignored mine presuming it was from training, but I'm exploring dietary causes for a few months before I settle into prescriptions.

Are you still able to train with it? I do a bit of weight training and it's not impeding me much yet, but it does effect my grip, I can't make a fist with my right hand, my index finger just will not curl fully, also starting to get a bit of pain im my other hand now.

senordingdong · 21-06-2021 7:37pm

Sandor Clegane wrote: »

Are you still able to train with it? I do a bit of weight training and it's not impeding me much yet, but it does effect my grip, I can't make a fist with my right hand, my index finger just will not curl fully, also starting to get a bit of pain im my other hand now.

At this point I am. But my right elbow is bad and so I can't fully extend my right arm. There is now a clear difference in my two triceps as a result of the limitations on my right arms movements.

On the other hand my fingers are getting better from tinkering with my diet.

Intermittent fasting has been known to show improvements but I'm not sure there's a consensus on the mechanism behind this.

Fionn · 24-06-2021 1:44am

I've been doing Intermittent Fasting for a year or so, I have a low carb meal every 24 hours on a daily basis 7 days a week.
My psoriasis has improved somewhat in the last two months or so, been out in the sun too which helps a little.

I think I also had arthritis in one ankle, when I'd get out of bed in the mornings my left ankle was swollen and very painful to walk on, I couldn't do any exercise because of it, that was about 8 or 9 months ago, now ankle is back to normal at the moment (fingers crossed) and I can average a 10 K walk daily with no ill effects.

Both my shoulders feel arthritc to some degree but I'm thankful for the ability to get out and exercise, the other benefit of the low carb diet and the IF is before I started(jan/Feb 2020) I was over 13 St, now im just under 11 St and feel good, I lost almost 3 inches off my waist

mrslancaster · 26-06-2021 7:30pm

senordingdong wrote: »

At this point I am. But my right elbow is bad and so I can't fully extend my right arm. There is now a clear difference in my two triceps as a result of the limitations on my right arms movements.

On the other hand my fingers are getting better from tinkering with my diet.

Intermittent fasting has been known to show improvements but I'm not sure there's a consensus on the mechanism behind this.

Agree that adjusting diet can help. Cutting out grains & potatoes made a difference for me years ago when I had mild scalp psoriasis. If I eat bread now my scalp gets itchy.:mad:

mick4_2000 · 26-06-2021 7:45pm

I just want to say i had very bad psoriasas on my scalp to the point the couch and the car would be destroyed it went on for years and was a massive confidence knock i was always self conscious. Everytime i went to the barber they would talk about it and it drove me nuts.

Anyway i tried loads of everything but the thing that completely got rid of it for me 4 or 5 years ago and it had never come back is MooGoo Shampoo. I use it everyday and to say it has completely changed everything would be an understatement. https://moogoo.ie/milk-shampoo

Id advise anyone give it a shot its only a normal shampoo

Gael23 · 27-06-2021 12:41pm

mick4_2000 wrote: »

I just want to say i had very bad psoriasas on my scalp to the point the couch and the car would be destroyed it went on for years and was a massive confidence knock i was always self conscious. Everytime i went to the barber they would talk about it and it drove me nuts.

Anyway i tried loads of everything but the thing that completely got rid of it for me 4 or 5 years ago and it had never come back is MooGoo Shampoo. I use it everyday and to say it has completely changed everything would be an understatement. https://moogoo.ie/milk-shampoo

Id advise anyone give it a shot its only a normal shampoo

I’ve tried that but it’s very expensive stuff

YellowLead · 27-06-2021 12:44pm

Gael23 wrote: »

I’ve tried that but it’s very expensive stuff

Did it work for you?
I think if something works, it’s worth the investment.

wonga77 · 27-06-2021 12:54pm

Tried it and several of their products but it didn't work for me at all

mick4_2000 · 01-07-2021 5:14pm

wonga77 wrote: »

Tried it and several of their products but it didn't work for me at all

I use the shampooo it's about €13 per bottle and I have it for 2 months I'd say if not more and I use it every morning.

When I was bad I'd have paid €100 per bottle or more.

Mine was gone before the first bottle was finished.

khalessi · 01-07-2021 5:38pm

wonga77 wrote: »

Tried it and several of their products but it didn't work for me at all

SImilar with me, I find a product like Moo Goo it works for a while and then stops so I have to find something else.

markmoto · 01-07-2021 8:39pm

Anyone having Psoriasis, did you notice it gets worse in the winter?

YellowLead · 01-07-2021 9:49pm

markmoto wrote: »

Anyone having Psoriasis, did you notice it gets worse in the winter?

Sunshine is the only cure that has ever worked for me. Two weeks abroad and it vanishes.

markmoto · 02-07-2021 8:27am

YellowLead wrote: »

Sunshine is the only cure that has ever worked for me. Two weeks abroad and it vanishes.

Vit. D is the natural cure. Sun is the best option. Supplement won't be as good as sun but if you take D3 as supplement take it with bile salt.

nibtrix · 02-07-2021 9:26pm

markmoto wrote: »

Anyone having Psoriasis, did you notice it gets worse in the winter?

Apart from the sun/vitamin D issue mentioned, dry air from central heating also contributes to psoriasis, or so I’ve found at least

siblers · 15-07-2021 6:30pm

Any suggestions on a EU based site which stocks tar shampoo that ships to Ireland? Polytar is now very expensive due to Brexit unfortunately

Capasal has tar but never found it much use.

Thanks

patnor1011 · 15-07-2021 7:04pm

Colloidal silver. That is what sorted it out for me quite fast. Cost is negligent as it is easy to make your own.

Larsso30 · 15-07-2021 7:08pm

I get it very bad on my hands and feet (I associate it with stress at this point). My go to was dovobet but costs a fortune, got a natural salve from mother earth skin care after meeting them at a craft fair in arklow shopping centre one day. There in Facebook, I really recommend it. Very good especially when it starts to flare up

patnor1011 · 15-07-2021 7:10pm

double post can be deleted

mrslancaster · 15-07-2021 7:21pm

https://boards.ie/discussion/comment/117616379#Comment_117616379

What's that and how do you make it? Tried many different shampoos over the years for psoriasis flaky scalp, currently using TGel Therapuetic bought in Boots.

c.p.w.g.w · 15-07-2021 7:28pm

https://boards.ie/discussion/comment/117520421#Comment_117520421

I recently went keto(well 8 months)...

Had scalp Psoriasis, but it's all gone, no more itch, plaque deposites...seems to be cleared up completely

patnor1011 · 17-07-2021 5:56am

https://boards.ie/discussion/comment/117616445#Comment_117616445

If you google it you can find much more than I can write in here. All you need is distilled water, some fine silver (has to be 999 fine no sterling) and cell phone charger. Or send me a pm when you will be in limerick next time and I can give you some to try.

mrslancaster · 23-07-2021 10:08pm

https://boards.ie/discussion/comment/117622867#Comment_117622867

Thanks Patnor will do if heading down limerick way. will check out google too

Hippodrome Song Owl · 28-07-2021 5:31pm

I had surgery yesterday and so had one shot of IV antibiotics and now on a course of antibiotic tablets - but have only taken one tablet so far. Just Augmentin, nothing fancy. However, in the 24h since my surgery my large patch of psoriasis has more or less disappeared. This is a large area running from my elbow to nearly wrist and covering my whole arm width. It's been there for years. Constantly itchy, raised and scaly plaques and fresh bits at the edges that bleed. And it has just disappeared. Has anyone ever experienced something like this before?

Gremlinertia · 30-07-2021 6:12pm

I'd not heard of anything like this my first suggestion would be to keep a daily photo diary of it for your specialist, documenting this feels like it would be important

3d4life · 31-07-2021 5:33pm

@Hippo, were you fasting prior to surgery ?

Hippodrome Song Owl · 01-08-2021 10:18pm

https://www.boards.ie/discussion/comment/117687751#Comment_117687751

I was fasting for 12 hours.

Hippodrome Song Owl · 01-08-2021 10:21pm

https://www.boards.ie/discussion/comment/117684171#Comment_117684171

I don't have a skin specialist. I also don't have photos of what it was like before though.

Still holding up after 5 days. Just finished the antibiotics so we'll see if it stays gone! If it had gradually healed I wouldn't have been so surprised but it basically disappeared in 24h.

siblers · 01-08-2021 10:23pm

https://www.boards.ie/discussion/comment/117674795#Comment_117674795

Sounds like you've guttate psoriasis

brevity · 30-08-2021 9:15pm

https://youtu.be/mKROHry8jQE

Salbe, Natural Chinese Herbal Cream https://www.amazon.co.uk/dp/B08R7FBB7W/ref=cm_sw_r_cp_api_glt_fabc_Y1EAHNAE7MGJ4ZGR42NF

i follow this guy on YouTube and he seems to know his stuff regarding dietary and medical conditions. He talks a lot about Keto and Intermittent fasting. He recommended a cream for psoriasis, it comes under a different brand on the Amazon UK site but seems to be the same product.

I haven’t tried it myself but could be work a shot for those stuck. It’s cheap enough…

siblers · 09-09-2021 10:02pm

I'd be very reluctant using those creams, they could easily have steroids in them

Strumms · 09-09-2021 10:15pm

My Dad has had it for decades, he uses coal tar shampoo for years (Polytar) and he swears by it, he uses it as a kind of all over shower gel hair and body... there is a small tube of ointment he’d use on his hands and arms but I can’t recall the name I’ll try and find.

Gael23 · 26-09-2021 3:45pm

Anyone got experience of having tonsillitis and then getting a severe Psoriasis outbreak?

I got tonsillitis so bad that I ended up in A&E 2 weeks ago and now my psoriasis had broken out; it’s intensely itchy too

Psoriasis

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