Psoriasis

bren1916 · 11-12-2022 1:25pm

I’ve had relatively mild psoriasis for 35 years, mostly knuckles and elbows until early October where I had a massive flare up from head to toe. Couldn’t get an appointment with a dermatologist (even privately) until next February so used beta cap for scalp and enstillar at for scaling (both excellent products). Happy to report it has almost all cleared now after 10 weeks as remainder of patches are almost faded away. Just wanted to put this out there for anyone in similar position as it really can affect ur mental health when no help from specialists in this country. Hope this helps someone.

Delldweller · 07-03-2023 9:36pm

Just checking in.

the Tremfya working amazingly

back swimming in the pool.

life changer.

thanks for the help again 😀👍🏻

YellowLead · 14-03-2023 11:59am

https://www.boards.ie/discussion/comment/119983239#Comment_119983239

Is the enstillar via prescription only?

I have guttate again following strep and the itch is driving me insane, never mind the constant need to cover every visible inch of my body in thick clothings so nobody can see, it’s even all over my hands! At least I can use make up on my face to sort of hide it there. I’ve had a few visits to a sun bed (the only thing that ever worked for me in the past was natural strong sunlight) and I think it’s made a small difference, patches are flattening and getting lighter in places.

wonga77 · 14-03-2023 12:41pm

enstillar is prescription only. I thinks its about as good as whats out there over the counter these days

YellowLead · 14-03-2023 12:46pm

Hard to get anything with steroids in them otc. Boots used to do dovonex, can’t find it on their website but maybe they just have it in the stores behind the counter. Dovonex is sold out online for any of the Irish pharmacies.

wonga77 · 14-03-2023 5:48pm

I find the dovobet gel stuff to be kinda useless. Haven't seen dovonex for ages

brevity · 14-03-2023 8:54pm

Im on Rinvoq tablets for Psoriasis and Psoriatic arthritis but it's not as effective as it used to be. My dermatologist has said that I might have to try something different. I've been on a long list of biologics.

In the meantime I have been using this stuff.

https://smilesandjoys-care.com/products/original-psoriasis-eczema-natural-herbal-cream-2?variant=32711352549516&utm_source=05%2F03%2F2022%20E150%203%20times%20Domain%20Others&utm_medium=campaign-email&utm_campaign=March%205%20-%20Getting%20ready%20for%20spring%20%2801GTRP51F0VNJ5ACA6D35FTM9T%29&_kx=QoLJiQQUIUiCNjrKyTB7LS3_TbH5g_1B9fj6ixRoXnE%3D.XpyuJv

I have used it on a few spots and it does clear it up. I was quite surprised as I have tried heaps of creams that did nothing.

Worth a shot if you are struggling to clear stubborn bits. You need to use it 2 or 3 times a day. Try it on a small spot first.

wonga77 · 14-03-2023 9:45pm

Is that the pink stuff? Ive tried it or something very similar before

brevity · 14-03-2023 10:34pm

https://www.boards.ie/discussion/comment/120359354#Comment_120359354

Yea. I got it on Amazon before but i think they changed the formula for that particular brand.

This one has a kind of distinctive smell.

It's reasonablely priced and I have found it does help. It only really works on the smaller patches I've found.

bren1916 · 20-03-2023 6:04pm

https://www.boards.ie/discussion/comment/120356831#Comment_120356831

Hi yes, it's prescription - I only used about 20% of both, passed them to my sister & her condition has almost cleared up now too. No idea why it worked but obviously either 'turned off' the body's capacity to produce psoriasis or was co-incidence (fact it's helped clear sisters issue points to former). For reference, I hadn't used any creams of lotions in probably 15yrs as I found them all fairly useless. I did however, find stopping smoking and drinking Guinness helped reduce inflammation.

YellowLead · 20-03-2023 6:16pm

https://www.boards.ie/discussion/comment/120380372#Comment_120380372

Thanks for the info :)

brevity · 15-04-2023 4:20pm

~~Humira~~

~~Stelara~~

~~Tremfya~~

~~Rinvoq~~

Skyrisi next...will see how it goes.

YellowLead · 15-04-2023 4:27pm

I’m still riddled with it - sun beds have made a small difference but not much. Booked a few days in Portugal next weekend - the sun always works for me, it’s the only thing that ever has (though I’ve never tried immunosuppressants or biologicals)

ferdiasfriend · 17-04-2023 1:53pm

I have had psoriasis for about 20 years now. It slowly spread from scalp to limbs and a bit on my trunk. I used Exorex for a while and that eases it. As its a non steroid lotion it can be used for longer term in beween steroidal creams or lotions. Currently i am using Enstilar but it only clears up while i keep using it.

From last saturday I have started sea swims once a week to see if that works. Its feckin freezing though

tallaghtjoe · 17-04-2023 4:41pm

I spoke with a dermatologist before Christmas. I have decided not to do the injections and stay using enstillar. Not sure whether thats the right decision or not. She said if I go with the injections I will need to continue this for the rest of my life, this kind of turned me off. I would rather have the option of using something or not. Some days Im just not in the humour to apply the cream, so not sure what Id be like with injections. Dermatologist said I need to take a break of using Enstillar every # of weeks to allow skin to rest. Anyone else told this? Enstillar is fine while using it but it does come back quite rapidly when relax using it.

Just a little rant on what really bugs me, people telling me that they know someone who also has psorisis, but its much worse than mine! 😣 they literally see my face, the rest of me is covered!!

YellowLead · 17-04-2023 5:07pm

That’s annoying alright :(

The type I have is guttate- I’ve had it 4 times in my life and each time it was following strep throat and each time it went away (after varying numbers of months).

But everybody (apart from doctors and dermatologists) keeps telling me oh my mam or whoever gets that and it’s 100% from stress. For some reason they think I invented the strep throat cause despite being diagnosed, and they also don’t believe the sun helps it (I know it doesn’t work for everyone) they think I’m some kind of alternate medicine person.

I suppose I’m lucky being fake that make up tends to hide the worst of it on my face - but on the other hand it’s hard to be fully covered up in clothes all the time, that’s easier on men and they tend to expose less skin naturally. Not easy for any of us!

brevity · 17-04-2023 7:02pm

Stress probably doesn't help but I find infuriating when people say that. Like what's the cure for stress? Not many people have the opportunity to deal with stress effectively.

It's an autoimmune disease. Your body is attacking itself. It needs proper treatment.

There are loads of anecdotal stories that certain things work but it's not going be the same for everyone. A lot of people mention gut microbiome and probiotics and how diet can play a big role in keeping it at bay. Again, not a possibility for everyone. It's a big commitment and it can take a long time to see and improvement. I know for me, sugar is a huge trigger.

riddles · 24-04-2023 3:14pm

Hi

Has anyone seen success in symptom reduction in going gluten and reducing or eliminating dairy?

Thanks,

Nickmorr · 04-05-2023 11:27pm

Hi,

I am new to boards and to this forum. I have had guttate psoriasis for around 30yrs now since I was a kid. Have tried everything over the years apart from biological injections or tablet form drugs. Have been to a dermatologist and he is recommending biological injection, such as Humira or Ustekinumab.

I would like to know if anyone here has been on any form of biological treatment. I am lucky that my psoriasis doe not cause much pain or discomfort but I am covered from head to toe most of the time with some clearance in summer when I get exposure to sun,so the sound of the biological treatment is tempting if it was to work.

My concerns are that I am a realitivley young an active person and I worry of the long term side affects and how it may affect my body.

Any advice or opinions would be greatly appreciated.

Nickmorr · 04-05-2023 11:32pm

Hi,

I am not sure about gluten, but I don't eat dairy at all and I am still covered in psoriasis, maybe it would be worse if I did, I really don't know.

YellowLead · 04-05-2023 11:37pm

I went to Portugal for a couple of days a few weekends ago - the sun nuked the psoriasis on the exposed parts and now they are white instead of pink. I know from experience that will even out when my tan fades. Hoping we get decent sun here this summer as I need to lie out on it to get my lower legs exposed and my back if I can. I know it is not healthy to expose myself to the sun, but I am desperate to get rid of the red spots which cover my entire body, it’s awkward for work and for dating.

andy6 · 05-05-2023 12:04am

I have 'late onset' psoriasis, only diagnosed last year in my 60's. Looking back, I always had scaly elbows and flaky skin. Long story short, I lost two family members also my house (to the bank) so I really know its stress related. I waited 6 mths to see private dermatologist and started straight on biologics. Am now on my 4th in a year, amgevita, first 1, 2 and 3 all gave me fungal infections. My ears were the worst, I couldn't hear, had to go to the Eye & Ear. Am due back this month to weigh up the pros & cons of staying on this one, not as effective but at least no fungal infections, groin n scalp are in bits but the rest is healing. its all a bit hit n miss. Good to have this forum

Hippodrome Song Owl · 05-05-2023 12:28am

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

Just to update this - my psoriasis, which had covered most of my lower arm for years, has not come back in the 21 months since it disappeared more or less overnight following an iv shot of antibiotics prior to surgery.

rubadub · 17-05-2023 11:24am

https://www.boards.ie/discussion/comment/120481331#Comment_120481331

Some sunbed places have ones which boost vitamin D more, so are likely bulbs that output more in the wavelength that we use, and more like the 311nm narrowband UVB lights used for treatment. Normal sunlight will contain these wavelengths but also unwanted ones. It would be like eating oranges to get vitamin C but you area also ingesting unnecessary and possibly damaging sugar along with it, when you might want a vitamin C tablet, or change to a fruit with lower sugar levels.

I posted before about how I made up 2 of my own UVB lights pretty cheaply, a small one with a single 9W narrowband UVB phillips bulb and a larger one which takes 2x36W bulbs. These were far cheaper than buying ones specifically sold as medical lamps, even though the bulb and output is exactly the same. (if considering it there are cheaper narrowband bulbs but I would stick with Philips)

At the moment I am fasting yet again and once again seeing remarkable results, on my 3rd day now. I am again doing this while also using UVB and small amounts of donovex. I am in no doubt now that the fasting is key, I also more convinced than ever that it is sugar and wheat and other carbs in my diet that leads it coming back. After doing fasting and cutting out foods before I got brilliant results, fell off the (sugar) wagon and back on bad foods and it came back. Some patches were very bad on sunday and are now very smooth today, since fasting starting sunday night.

intermittent fasting is also said to benefit.

https://www.dermatologytimes.com/view/intermittent-fasting-helps-reduce-psoriasis-symptoms

rubadub · 23-05-2023 1:38pm

It seems donovex is in short supply. I had a load of old used tubes left over and have been squeezing the last out of them. You can get devices to do this but it can be done without them.

If you see this picture you can see at the very end it is foil folded up on itself. This can be unfolded and made flat. Now you place it on a hard flat surface, I used a sheet of plywood. Now get a wide rolling pin, or bit of heavy metal tube or similar. Place it on the unfolded bit and pressing with all your weight roll it up towards the outlet. Move the rolling pin back down towards the bottom and slow do this over and over. It will gather up towards the top, I would keep the cap on until them. If there is a lot in the tube you can take the cap off and squeeze it out as normal.

If it is really very empty I cut across the top, where the sandy coloured line is in the photo. Now you can do the rolling pin trick again and you may be surprised how much comes out the top. The very top bit can be prised apart and up might be able to get your little finger in the top outlet area and get a little more out.

YellowLead · 23-05-2023 1:42pm

https://www.boards.ie/discussion/comment/120631231#Comment_120631231

I remember it was either in 2020 or 2021 it was made over the counter and you could get it in boots. I can see it’s available in online Irish pharmacies but sold out every time