Psoriasis

Gael23

mighty magpie wrote: »

Anyone here tried Estilar? In a spray bottle and comes out like shaving foam?

I've been using it since sunday on my back (20-30 small areas) each night and the results are amazing, 4 days in out of a prescribed 4 weeks. Skin is so smooth and redness is down hugely.

I think it is similar to dovobet but with better results in testing from what i've read.

It’s the same drug as Dovobet and that’s not good for your skin long term. These really only mask the symptoms on the surface. I’ve learned over years that you really need to treat it internally as well

Phil1969

mighty magpie wrote: »

Anyone here tried Estilar? In a spray bottle and comes out like shaving foam?

I've been using it since sunday on my back (20-30 small areas) each night and the results are amazing, 4 days in out of a prescribed 4 weeks. Skin is so smooth and redness is down hugely.

I think it is similar to dovobet but with better results in testing from what i've read.

Yes, I tried it, and had similar results as you mentioned, however I quickly noticed my P would just pop up elsewhere instead. I started using on my legs then my forearms got a lot worse within a few weeks.

I have P for over 30 years, and tried all sorts of medications, and the only things that seem to work are the sun and cutting out dairy and processed foods which is very difficult to do long term.

hbhook

Have been using Enstilar. It did a great job on my hands but there are still a couple of areas that won't clear up as well as on my elbows. I just use it every other day now for the last while. I find it works well for those spots that just appear randomly elsewhere.

Gael23

Been struck down with a mother of a throat infection so have to stop Humira until it’s gone. Could really do without it

ckeire

I developed scalp psorisis only about 6 months ago. (I did have a bit at back of head as a child but nothing then until 6 months ago). It started behind ears and seemed to spread. Very itchy and the various treatment shampoos did nothing much to help.
Then - I was online reading about the great properties of Onions... so I blitzed half an onion with warm water, smeared over head, covered with a shower cap for half an hour, washed out (with a mild shampoo).
My scalp felt less itchy and inflamed. Repeated this later that week and then once more.
I can say that my scalp psorisis is gone. Now maybe it was coincidence and who knows maybe it will return at some stage but it definitely helped.
I would be interested if anyone else tries this how it goes. Please let me know!
(ps, the onion smell is actually not tooo bad! and definitely worth it)

banoffe2

have Ps under the back my neck and up a little bit of the scalp and behind the ears,luckily had a good break from it, back again - could be triggered by stress. no GP available over Xmas - my own fault I thought it would clear up!

Pharmacist would only give me anti histamine to stop the itch and it sure helps, she looked at it and confirmed it was ps, my GP also confirmed this years ago, I have never gone down the road of dermatologist, Pharmacist also recommended Emulsifying Ointment which I already have, I found an unfinished tube of Eumovate Ointment 0.5% its an anti inflammatory steroid, tying the hair up to leave some air to it.
Reading all the posts here , there appears to be no magic potion yet! Glad I had some bacic stock to tide me over the hols, I also have the prescribed shampoo.

Gael23

banoffe2 wrote: »

have Ps under the back my neck and up a little bit of the scalp and behind the ears,luckily had a good break from it, back again - could be triggered by stress. no GP available over Xmas - my own fault I thought it would clear up!

Pharmacist would only give me anti histamine to stop the itch and it sure helps, she looked at it and confirmed it was ps, my GP also confirmed this years ago, I have never gone down the road of dermatologist, Pharmacist also recommended Emulsifying Ointment which I already have, I found an unfinished tube of Eumovate Ointment 0.5% its an anti inflammatory steroid, tying the hair up to leave some air to it.
Reading all the posts here , there appears to be no magic potion yet! Glad I had some bacic stock to tide me over the hols, I also have the prescribed shampoo.

Check that all those tubes of cream have not passed their expiry date before you use them.
GP practices are back open today so just make an appointment for as soon as you can. It’s not the end of the world if you have to wait a couple of days,

CtrlAltDelete

Gael23 wrote: »

Been struck down with a mother of a throat infection so have to stop Humira until it’s gone. Could really do without it

Did your consultant advise that or did you make the decision yourself ? Using Humira for over 4 years now and havent stopped at all. Havent really been sick but did get a dose of actual flu maybe 2 years back and continued to use the Humira. I would rather deal with prolonged flu that takes longer to kick than to invite my skin to deteriorate .

Gael23

CtrlAltDelete wrote: »

Did your consultant advise that or did you make the decision yourself ? Using Humira for over 4 years now and havent stopped at all. Havent really been sick but did get a dose of actual flu maybe 2 years back and continued to use the Humira. I would rather deal with prolonged flu that takes longer to kick than to invite my skin to deteriorate .

Yes you should stop your injection while your on an antibiotic. It’s something to do with the reaction of antibiotic on your immune system. Both my consultant and GP instructed me to stop

CtrlAltDelete

I have been on antibiotics a couple of times and was never told that. Didnt do me any harm anyway thankfully.

Kurtosis

Gael23 wrote: »

Yes you should stop your injection while your on an antibiotic. It’s something to do with the reaction of antibiotic on your immune system. Both my consultant and GP instructed me to stop

Mod note

Gael23, please remember that medical advice (like the highlighted text above) is not permitted on boards. Please PM me if you need clarification.

The above advice may not be correct and may depend on several factors. The product licence for Humira says "There may be a need for dose interruption, for instance before surgery or if a serious infection occurs." This may relate to factors to do with each person, their history of infections, the current infection, and any treatment for the current infection. As per the product information, it's important to inform your doctor if you have an infection but you shouldn't stop your medicines without discussing or being instructed to do so by your doctor.

rubadub

I had a terrible bout of itching. My eurax cream did not do much, in the end I good 100mg of diphenhydramine, an antihistamine and it calmed it.

I think it might be due to using biological detergent for clothes. I have changed back to non bio.

In searching I saw an article making out like its a myth due to some study (i.e. that bio causes skin issues). I think it does make a difference though.

I also found this stuff

Laundry Powder for sensitive skin and eczema - 100% natural, no fragrances or irritant
https://skinsalve.co.uk/products/laundry-powder?variant=1062385357

qo2cj1dsne8y4k

I’ve found over Christmas that drinking flares up my joints really bad. I wouldn’t usually be a big drinker but I’ve defi noticed the effects of it.

rizzee

Grace Thoughtless Mortal wrote: »

I’ve found over Christmas that drinking flares up my joints really bad. I wouldn’t usually be a big drinker but I’ve defi noticed the effects of it.

Yep, I believe its the yeast in the alcohol. Doing a dry January and getting at least 3.5-4l water daily and it's been steadily getting better.

Gael23

rubadub wrote: »

I had a terrible bout of itching. My eurax cream did not do much, in the end I good 100mg of diphenhydramine, an antihistamine and it calmed it.

I think it might be due to using biological detergent for clothes. I have changed back to non bio.

In searching I saw an article making out like its a myth due to some study (i.e. that bio causes skin issues). I think it does make a difference though.

I also found this stuff

Laundry Powder for sensitive skin and eczema - 100% natural, no fragrances or irritant
https://skinsalve.co.uk/products/laundry-powder?variant=1062385357

It definitely does make a difference. Im bad when it comes to clothes detergent, I usually buy whatever one is on special offer.

rubadub

Gael23 wrote: »

I usually buy whatever one is on special offer.

I was using tesco non bio liquid. I figure it should rinse easier than a powder. I also add an extra rinse cycle at the end. I am now wondering if when it is finished I should do an entire new wash with no powder and extra rinse, i.e. another prolonged rinse. A test would be to take a tshirt out, then do the second rinse/wash cycle out with an identical t shirt still there. Let them both dry the same way and see can you detect a difference in smell, i.e. is there any remnant smell of the detergent.

Also I do not measure it and must be heavy handed as I saw the bottle said 24 washes or something and I do not get that.

rizzee wrote: »

Yep, I believe its the yeast in the alcohol.

I would put it down to the dehydrating effect of the alcohol, and it generally being a toxin. If yeast was an issue you should be in bits from bread. I get the worst flare ups drinking spirits which have absolutetly zero yeast in them. Most mainstream beers are filtered very well these days so have only trace amounts in them -only the cloudy beers would have significant amounts.

Gael23

rubadub wrote: »

I was using tesco non bio liquid. I figure it should rinse easier than a powder. I also add an extra rinse cycle at the end. I am now wondering if when it is finished I should do an entire new wash with no powder and extra rinse, i.e. another prolonged rinse. A test would be to take a tshirt out, then do the second rinse/wash cycle out with an identical t shirt still there. Let them both dry the same way and see can you detect a difference in smell, i.e. is there any remnant smell of the detergent.

Also I do not measure it and must be heavy handed as I saw the bottle said 24 washes or something and I do not get that.

Thats just a little extreme! Maybe an extra rinse of you feel the need.
Always use less than the quantity they state on the container. I used the Tesco colour one before and had no issues with it. Some of them dont leave a smell on the clothes but that doesn't bother me

don corleone

eeloe wrote: »

I’m seeing Prof.Brian Kirby, in St.Vincents Private, so far i’ve only seen him once, and at this point in time i’m 99% clear of psoriasis.

Best €250 I’ve ever spent.

Hi EEloe

Im sure you've been asked this already so sorry if im asking you to repeat yourself, I had a look through the thread but couldnt find the info I needed.

So Im really interested in this Stelara treatment. Ive had p for 20 years and it has had a huge negative impact on my life as Im sure is the same for most people.

What I am looking to find out is how to go about getting on this course of treatment?
Is it a referral from a GP to see Prof Kirby and go from there?
Is it something you can request or does he have to prescribe Stelara for you based on an assessment of some sort?
Do you know if this type of treatment improves the condition long term or is it usual for the p to return as soon as treatment stops?
You mention 250 euro to see Prof Kirby, do you then pay for the Stelara too?

The only thing that has ever cured me was the UV treatment in the Mater hospital but after I stopped the treatment it comes back fairly quickly. It is not sustainable for me to be going to the hospital 3 mornings a week so if there is an alternative Ill do whatever it takes to get it if it works. Your before and after pictures have given me hope that Stelara could be what Ive been waiting for all this time.

Thanks for any help you can give me on this.

eeloe

don corleone wrote: »

Hi EEloe

Im sure you've been asked this already so sorry if im asking you to repeat yourself, I had a look through the thread but couldnt find the info I needed.

So Im really interested in this Stelara treatment. Ive had p for 20 years and it has had a huge negative impact on my life as Im sure is the same for most people.

What I am looking to find out is how to go about getting on this course of treatment?
Is it a referral from a GP to see Prof Kirby and go from there?
Is it something you can request or does he have to prescribe Stelara for you based on an assessment of some sort?
Do you know if this type of treatment improves the condition long term or is it usual for the p to return as soon as treatment stops?
You mention 250 euro to see Prof Kirby, do you then pay for the Stelara too?

The only thing that has ever cured me was the UV treatment in the Mater hospital but after I stopped the treatment it comes back fairly quickly. It is not sustainable for me to be going to the hospital 3 mornings a week so if there is an alternative Ill do whatever it takes to get it if it works. Your before and after pictures have given me hope that Stelara could be what Ive been waiting for all this time.

Thanks for any help you can give me on this.

Hey.

I'm currently 4 months and a couple of days in to my Stelara treatment, and as you can see from the pictures i posted, i had it quite bad.

Right now, i'm 99.5% clear of psoriasis, i have the tiniest patch of dry skin on my left elbow, and that's it...and to be honest, i think it's just that, dry skin, and not psoriasis.

The original 250 was Prof.Kirby's private consultation fee, i went private because i couldn't wait any longer on the public system to see the dermatologist in Waterford(currently waiting 4.5 years, and i still have another 1.5 years to go until my appointment time there).

The Stelara itself is on the high tech medical scheme, so if you have a medical card it's free....on you can get it on the drugs payment scheme, which you cost you 134 per calendar month you need the treatment(after the loading doses it's only every 12 weeks) so a worst it will cost you about 536 per year. still a lot of money, but trust me, when you have skin this clear, it's worth every penny.

IF you have private health insurance, you can claim an ammount of the consultation fee back through that.

The dermatologist you go to will pick the treatment for you, and they will want you to exhaust other avenues first, like UV(which you've already done) other steroids, and of course MTX(Methotrexate, a horrible horrible drug that i wish they didn't prescribe to anyone, it's torture) and then they will put you on a biologic if you haven't been put in remission by any of the other treatments.

don corleone

eeloe wrote: »

Hey.

I'm currently 4 months and a couple of days in to my Stelara treatment, and as you can see from the pictures i posted, i had it quite bad.

Right now, i'm 99.5% clear of psoriasis, i have the tiniest patch of dry skin on my left elbow, and that's it...and to be honest, i think it's just that, dry skin, and not psoriasis.

The original 250 was Prof.Kirby's private consultation fee, i went private because i couldn't wait any longer on the public system to see the dermatologist in Waterford(currently waiting 4.5 years, and i still have another 1.5 years to go until my appointment time there).

The Stelara itself is on the high tech medical scheme, so if you have a medical card it's free....on you can get it on the drugs payment scheme, which you cost you 134 per calendar month you need the treatment(after the loading doses it's only every 12 weeks) so a worst it will cost you about 536 per year. still a lot of money, but trust me, when you have skin this clear, it's worth every penny.

IF you have private health insurance, you can claim an ammount of the consultation fee back through that.

The dermatologist you go to will pick the treatment for you, and they will want you to exhaust other avenues first, like UV(which you've already done) other steroids, and of course MTX(Methotrexate, a horrible horrible drug that i wish they didn't prescribe to anyone, it's torture) and then they will put you on a biologic if you haven't been put in remission by any of the other treatments.

Thanks so much for that information. Sounds like I need to get in to see Prof Kirby as a first step anyways. I’ll get onto my GP this week.

Thanks again

eeloe

Any questions don’t hesitate to ask, or PM me.

This group was a god send when I was really struggling around May/June last year when I was really flared up.

Gael23

don corleone wrote: »

Thanks so much for that information. Sounds like I need to get in to see Prof Kirby as a first step anyways. I’ll get onto my GP this week.

Thanks again

I’m struggling a bit at the moment but I have lots of other issues going on but I got a new quality of life when I went to Prof Kirby first. You might be waiting a while to see him but he’s the best out there

rizzee

How's everyone doing? Took 5 weeks off the beer, had a few pints Saturday and feeling the effects coming on since yesterday morning. Very dry and flakey. Had a tattoo session on 16/01 and small raises/patches starting to appear there since yesterday, was healing perfect until then. Another session on 15/02 so I'll get extra hydrated and fingers crossed.. Eyebrows/Hairline is completely red today too. Extra conscious. Guess I'm going to have to knock the booze on the head.

eeloe

Are you getting any treatment at all at the moment rizzee?

Honestly, giving up the drink is one of the best things i've ever done, about 5-6 years off it now and i feel so much better because of it! in saying that, it had zero effect on my psoriasis tho.

Doing pretty good here, had my follow up appointment with Prof.Kirby last week, he was shocked at how quickly and how well the stelara has cleared me up. Don't need to see him for another 6 months tho, which is pretty decent, blood tests have been pushed back to twice a year too.

rizzee

eeloe wrote: »

Are you getting any treatment at all at the moment rizzee?

Honestly, giving up the drink is one of the best things i've ever done, about 5-6 years off it now and i feel so much better because of it! in saying that, it had zero effect on my psoriasis tho.

Doing pretty good here, had my follow up appointment with Prof.Kirby last week, he was shocked at how quickly and how well the stelara has cleared me up. Don't need to see him for another 6 months tho, which is pretty decent, blood tests have been pushed back to twice a year too.

Nothing at all; Just have the usual routine of silcocks base in the shower, Elave/E45 Shampoo (they have their own branded one now so I've been trying that out) and Nizoral once a week. The OH got me a tub of goats milk cream (or something along the lines!!) so i'm trying that as a moisturiser too.

I'm in a set routine with exercise too and I've definitely felt the positives with that, there must be something in the drink (yeast/alcohol) that's doing something.

I'm also seeing a specialist for one of my kidneys that isn't performing 100% so hopefully after some test results I'll have a better idea - I must actually see if this would link in with psoriasis but I doubt it. I've an appointment tomorrow to talk through some test results so I'll see how that goes.

Glad you're getting cleared up, the transformation is amazing! Now go get some more ink :pac:

eeloe

Hopefully you can get some answers soon, i would suggest a dermatologist tho, it has literally been life changing for me.

I'm kinda worried about getting more tattoos, as the last one i got last may broke out in psoriasis straight away, and only fully healed when i got on stelara in september.

My wife actually got on to my artist, and got me a voucher for Christmas, and i'm kinda ****ting it about making an appointment with him incase it flares again!

Gael23

rizzee wrote: »

How's everyone doing? Took 5 weeks off the beer, had a few pints Saturday and feeling the effects coming on since yesterday morning. Very dry and flakey. Had a tattoo session on 16/01 and small raises/patches starting to appear there since yesterday, was healing perfect until then. Another session on 15/02 so I'll get extra hydrated and fingers crossed.. Eyebrows/Hairline is completely red today too. Extra conscious. Guess I'm going to have to knock the booze on the head.

I’m struggling a bit.
The Humira is working for my bowels but doesn’t seem to be hitting my Psoriasis. Seeing both my Drrmatologist and Gastroenterologist in March so hopefully they will both agree to switch me to Stelara. Then there’s just my kidney specialist to sign off on it.
Have you even been seen by a dermatologist? It’s something anyone with Psoriasis should do at least once.

rizzee

Gael23 wrote: »

I’m struggling a bit.
The Humira is working for my bowels but doesn’t seem to be hitting my Psoriasis. Seeing both my Drrmatologist and Gastroenterologist in March so hopefully they will both agree to switch me to Stelara. Then there’s just my kidney specialist to sign off on it.
Have you even been seen by a dermatologist? It’s something anyone with Psoriasis should do at least once.

I hope you get sorted soon!

Yes I've had X2 6 or 8 week UV treatments in Drogheda hospital 4-5+ years ago. Also have prescription for Dovobet although I try limit the usage as I find the body becomes used to it and it doesn't work.

@eeloe, I understand the worry, fingers crossed it has played its course and will stay away! I'm grateful it's just an extra layer over the skin so know the tattoo itself is fine

Gael23

rizzee wrote: »

I hope you get sorted soon!

Yes I've had X2 6 or 8 week UV treatments in Drogheda hospital 4-5+ years ago. Also have prescription for Dovobet although I try limit the usage as I find the body becomes used to it and it doesn't work.

@eeloe, I understand the worry, fingers crossed it has played its course and will stay away! I'm grateful it's just an extra layer over the skin so know the tattoo itself is fine

UV treatment didnt work for me, have had 40 treatments.
Devote does work but it has harmful side effects.

eeloe

so how's everyone doing this week?

Well i hope?