Psoriasis

brevity

Depends on your test. If you are sensitive to the light then they are very careful with you.

You have to remember that's its not just the time its the intensity. I got what you could call sunburn a number of times by it.

Different strokes for different folks.

Gael23

Call Me Jimmy wrote: »

I can't get rid of residual redness. I can get it to not be flaking and not look infected but it just won't go anywhere near normal skin tone. I don't get it. Surely even by chance some of the time during the skins regenerative cycle it should synthesise the right stuff just so i can have normal skin for a day.

****ing had it up to here.

Are you talking about your face or your whole body? Most of the time for me it goes eventually but does take quite a while. A few years ago I bought a clarins anti redness cream for men to use on my face and that helped a little.

Call Me Jimmy

Just face around my nose. It's just always there. Gonna try leafy greens in diet

mighty magpie

I started with around 10-20 seconds first session. Increased 15% each time if recall correctly

Gael23

Call Me Jimmy wrote: »

Just face around my nose. It's just always there. Gonna try leafy greens in diet

Have you tried a mens facial scrub? It might help lift off the damaged top layer of skin and then apply plain moisturiser.Im talking about the face washes you get in a supermarket, nothing special. For me using the Protopic for the past year and a half seems to take care of most of the redness but I know using all natural stuff like you do is really the way to go

Gael23

Had th PUVA test today. Took ages but don't think it will take that long in the future. the nurses told me to use Diprobase ointment and wash with Elave body wash. I also never have Baths so having one for it was strange!

rubadub

bucketybuck wrote: »

I can't remember how long my first session was, but it wasn't 10 seconds. By the end I was in for nearly 15 minutes as far as I can recall.

brevity wrote: »

You have to remember that's its not just the time its the intensity. I got what you could call sunburn a number of times by it.

Yeah its the intensity, I would go sunbathing with no sunscreen for say 20mins on the sunniest day of the year, when the seasons are tailing off I would go longer.

I have a 9W UVB bulb, you can see manuals online for treatment. Recommended times vary depending on skin type. Then you increase fixed amounts.

My longest treatment is 5mins. This is on my chest, I hold it a few inches away so it shines on several patches at once, this lowers the intensity of the lght hitting the skin. While behind my ears I only do 2mins, as I hold it so close.

Some areas are already used to the light, as they are exposed more, e.g. my arms would be in the sun during the year, while my legs rarely would be.

The controlled sunburning is called "Minimal Erythema Dose (MED) " which is the minimum dose which will cause you to get mild sunburn. They actually will set out to induce mild sunburning to figure out this dose.

If you treat your skin with coal tars prior to UVB you can get good results without going so far as giving yourself mild sunburn. Also I apply sudocrem or other zinc creams right after UVB to reduce sunburning, esp. when I know I have had a dose which is likely to cause it.


http://beatpsoriasis.com/forms/dermalight80.pdf

The optimum dose for all indications corresponds to the factor 0.7 - 0.9 MED (=minimal erythema dose). In order words, for treatment to be successful it is important to perform irradiation to a level just below the erythema limit (i.e. until a slight reddening of the skin becomes visible, which however does not become fully discernible until after around 6 to 12 hours).
The MED varies from patient to patient and depends on the skin type (see table 1).
Your doctor will tell you in which class (1 - 6) you belong.
For the sake of simplicity we have based the following descriptions on skin type 2 (applies to the majority of Central Europeans).
For the therapy success it is essential to pre-treat your skin or scalp, i.e. to remove scale.

Guide values for skin type 2, first exposure :
approx. 60 seconds for each irradiated area of the body;
approx. 5-6 minutes for the entire hair-covered scalp.

The duration of the first exposure for hair-covered scalp depends on the extent of the hair covering and its thickness. The purpose of the comb is to part the hair and allow the UV radiation to get through to the scalp (see Chapter 4.3. THERAPY
RECOMMENDATION).

soupyryan1

Hey guys sorry about this but i have ti ask it as there is so much info on this thread its hard to find what I need.
I am 18 and i have had psoriasis for 4 years now. Its all over my legs and I just cant get rid of it. At the moment it is extremely flared up and I'm like a snake shedding skin. Its really weepy and the steroid creams just don't work anymore, they are so expensive i just cant afford them now. has anyone come across a cure that would even stop it being weepy and shedding skin all the time. getting desperate right now.

Gael23

soupyryan1 wrote: »

Hey guys sorry about this but i have ti ask it as there is so much info on this thread its hard to find what I need.
I am 18 and i have had psoriasis for 4 years now. Its all over my legs and I just cant get rid of it. At the moment it is extremely flared up and I'm like a snake shedding skin. Its really weepy and the steroid creams just don't work anymore, they are so expensive i just cant afford them now. has anyone come across a cure that would even stop it being weepy and shedding skin all the time. getting desperate right now.

There is no "cure" as such, its about finding a way to best manage it. In my experience the steroid creams do work but yes they are expensive.
My advice to you is see your GP, they will examine your plaques and suggest a way forward, even possibly refer you to a dermatologist. To go private and get seen quickly will be expensive, or you can wait and get seen public for free.

Moisturisers help stop it shedding but with the weeping you describe, I think you will need medical treatment before anything like that will be any benefit to you. Im thinking an antibiotic to start but without seeing it, its impossible to say for sure.
Unfortunately, almost anything you use comes with a price tag but if the cost of treatment is a genuine problem for you then it might be worth discussing applying for a medical card with your GP.

brevity

soupyryan1 wrote: »

Hey guys sorry about this but i have ti ask it as there is so much info on this thread its hard to find what I need.
I am 18 and i have had psoriasis for 4 years now. Its all over my legs and I just cant get rid of it. At the moment it is extremely flared up and I'm like a snake shedding skin. Its really weepy and the steroid creams just don't work anymore, they are so expensive i just cant afford them now. has anyone come across a cure that would even stop it being weepy and shedding skin all the time. getting desperate right now.

The weeping would be a concern IMO. Could be an infection so I would do my best at trying to get to the doctor. If he or she isn't listening, go to another doctor. Get the drug payment scheme card for prescriptions.

In the meantime, try and take a lukewarm bath with dead sea salts, you can get them in health food shops, this may help with the irritation.

Find a moisturiser that doesn't aggravate your skin. Aveeno with Shea butter works well for me. Use a very basic shower gel like Sanex.

Get a tub of petroleum gel, the correct name escapes me, check in boots, lather your legs in this and wrap with cling film. It will help with the sensitivity and reduce the itch. (If this sounds weird, don't worry, I'm in work with mine wrapped up because I have a bad flare up as well)

Hopefully this helps.

NEDDURC

soupyryan1 wrote: »

Hey guys sorry about this but i have ti ask it as there is so much info on this thread its hard to find what I need.
I am 18 and i have had psoriasis for 4 years now. Its all over my legs and I just cant get rid of it. At the moment it is extremely flared up and I'm like a snake shedding skin. Its really weepy and the steroid creams just don't work anymore, they are so expensive i just cant afford them now. has anyone come across a cure that would even stop it being weepy and shedding skin all the time. getting desperate right now.

I've never had it that bad so not sure how much help I'd be here...

I do agree with ryanf1 though. You probably should go to gp first. I'd imagine you might get antibiotic and steriods to try to calm it down.

In the mean time....maybe try bathing...then moisturise with lots of aqueous cream (cheap) or a really soothing moistuiriser, then maybe apply coal tar if you have any of that (might help slow it down or calm it down). That should at least help the flaking....

Vahevala

Does anyone know where I could get Eumovate cream? It is out of stock everywhere.

Gael23

Had my first proper PUVA session today. Lasted all of 5 seconds which I'm not really happy about. I don't see how that level of exposure can be of any benefit. On Monday they did a test patch with 8 squares on my back and that showed I'm very sensitive to light.
Sounds silly but our family Dog died 2 hours after my treatment so needless to say my stress levels are on the high side and have been for the last 2 days with him. Stress being my no.1 trigger, its going to hold me back a little

brevity

ryanf1 wrote: »

Had my first proper PUVA session today. Lasted all of 5 seconds which I'm not really happy about. I don't see how that level of exposure can be of any benefit. On Monday they did a test patch with 8 squares on my back and that showed I'm very sensitive to light.
Sounds silly but our family Dog died 2 hours after my treatment so needless to say my stress levels are on the high side and have been for the last 2 days with him. Stress being my no.1 trigger, its going to hold me back a little

Sorry about your pet Ryan. It's rotten timing alright.

The short sessions are very frustrating at the start but stick with them. When you see the results it makes it all worthwhile.

Gael23

brevity wrote: »

The short sessions are very frustrating at the start but stick with them. When you see the results it makes it all worthwhile.

I just don't see how such short sessions can serve any benefit, the purpose of this is to get me off steroid creams, which cant happen with 5 seconds of exposure.

NEDDURC

ryanf1 - I suppose it's like getting fit. Your instinct is to go on a long run straight away. But all that gets you is most likely injured and sore.

The most important part is the consistency of doing in and building up pretty slowly. It's sort of training your skin. Getting it used to the light and building that up then. I presume you'll have to go maybe 3 times a week for 6-10 weeks.

Zombienosh

NEDDURC wrote: »

I've never had it that bad so not sure how much help I'd be here...

I do agree with ryanf1 though. You probably should go to gp first. I'd imagine you might get antibiotic and steriods to try to calm it down.

In the mean time....maybe try bathing...then moisturise with lots of aqueous cream (cheap) or a really soothing moistuiriser, then maybe apply coal tar if you have any of that (might help slow it down or calm it down). That should at least help the flaking....

be careful with aqueous cream as it has SLS in it, you can get a non SLS version its called baby aqueous, or just use elave.

Gael23

NEDDURC wrote: »

ryanf1 - I suppose it's like getting fit. Your instinct is to go on a long run straight away. But all that gets you is most likely injured and sore.

The most important part is the consistency of doing in and building up pretty slowly. It's sort of training your skin. Getting it used to the light and building that up then. I presume you'll have to go maybe 3 times a week for 6-10 weeks.

Its 2 sessions per week for I'm not sure how long. Im going to have to use Dovobet today because this weeks ones haven't helped in any way and I just feel if I had longer it might have done something. Also its easier to stay committed to it if you see results.

brevity

ryanf1 wrote: »

I just don't see how such short sessions can serve any benefit, the purpose of this is to get me off steroid creams, which cant happen with 5 seconds of exposure.

They will build you up to longer sessions, if they give you sessions that are too long then you will get burnt.

huskerdu

ryanf1 wrote: »

I just don't see how such short sessions can serve any benefit, the purpose of this is to get me off steroid creams, which cant happen with 5 seconds of exposure.

It is a 6-8 week course of treatment. It will work over time. Its not a quick fix.
Sorry if that is disappointing . I can understand that you are keen to see results, but you have to see it through.

I was told by my consultant that the risk of skin cancer is taken very seriously. You can only have 10 courses of PUVA treatment in your lifetime because of the risk.

I have type 1 skin ( actually the consultant notes in my chart say REALLY, REALLY type 1). I started at 5 seconds and saw no results for the first few weeks, but it was worth it in the end,

Good luck. I hope it gives you the relief that you deserve.

brevity

I went to the dermatologist today, this flare up is getting worse and worse, and he is going to try and put me on Humira (injections into the soft tissue). I have a few preliminary tests to do to see if I will be OK on it, but he's fairly confident that it should clear it up.

Looking at the leaflet he gave me it seems heavy duty stuff and I will be on it for the foreseeable future.

Anyone here taking it?

from little acorns

I've had psoriasis around ten years now. I'm female, 30 years old. Mine is extremely severe and widespread, both guttate and plaque, all over my body. When it gets really bad (as it has recently) it starts to affect my face and scalp.

I avoid steroid creams as much as possible, but it's gotten to the stage where I had to do something. So I got a prescription for Dovonex. However when I went to collect it at the weekend, the pharmacist advised me to hold of a couple of weeks, if I could, and to try a range called Moogoo (I had never heard of this before.) She said that some of her customers with psoriasis have been getting amazing results from it. It was very pricey - I think about €15 each for the shampoo and conditioner - I said that I'd try those first before spending more money on the skin products.

This was only a few days ago. The results were instant with the first wash. I got two full days with absolute minimal flakiness on my scalp (a small bit at the end of the second day, but barely noticeable.) My ears have been extremely red and flaky - much improved. I even felt like I noticed a slight improvement with my face and body. Oh and as well as all of this - my hair is so soft and smooth and shiny and manageable! (I have highlights, so I'll be interested to see how the shampoo and conditioner affects them, but so far so good ... and anyways, that's a minor concern!)

I was so impressed that I was back the next day for the body wash and irritable skin balm. I have only used the body wash twice and I have had to start taking photos to record the visible difference in my skin already. My arms are absolutely covered in patches, but whereas they were angry reddish-purple and flaking lots, already the dryness and flakiness has subsided a lot, and they are fading to dusky pink patches. In fact, it looks just as it has looked in the past when I temporarily got rid of the psoriasis through steroids or UV treatment. My skin feels so smooth, I keep stroking it. I've been using the body wash on my face too, it makes it feel so clean and fresh!

Funnily enough, the irritable skin balm is the one that the pharmacist really recommended, and the one that is raved about online. I've been using it on my face, and patch-testing it on my body ... I can't say I've noticed as big a difference yet - but, in fairness, it HAS only been a couple of days.

In my opinion the shampoo, conditioner and body wash are well worth investing in. From all the reviews I've read online, the worst that's said is that they are nice but didn't improve their skin much and that it's no miracle product, while the best reviews insist that it IS a miracle produce ... basically, I didn't find any actual negative reviews. So even if it doesn't help your skin, it's unlikely to make it worse. As for the skin balm - I'll continue to use it, and see if it helps.

For the record, I have absolutely no affiliation to Moogoo and only heard of the brand for the first time a few days ago - but I think I'm officially converted. Will report back in a couple of weeks, hopefully my skin will continue to improve in the meantime, fingers crossed!

Foggy Jew

Please let us know how you are getting on, Acorns. Also - do you know if Moo Goo is widely available? Like High Street chemists, etc. Its great to read positive posts. Best of luck. X

huskerdu

Foggy Jew wrote: »

Please let us know how you are getting on, Acorns. Also - do you know if Moo Goo is widely available? Like High Street chemists, etc. Its great to read positive posts. Best of luck. X

I have bought MooGoo in 2 local chemists and seen it in one city centre chemists but a lot of others don't stock it.

I bought it in the chemist beside SuperValu in Ballinteer and a chemist in a small row of chops on Dundrum Road close to the junction with Bird avenue if that is any help to anyone,

Call Me Jimmy

thanks for that. is the body wash called 'milky wash'?

from little acorns

Foggy Jew wrote: »

Please let us know how you are getting on, Acorns. Also - do you know if Moo Goo is widely available? Like High Street chemists, etc. Its great to read positive posts. Best of luck. X

There is a list of stockists on the website, I can't post the link because I haven't enough posts, but if you Google Moogoo Ireland you'll find it. There are plenty of them, but they seem to be mostly smaller pharmacies. I asked about it in a couple of other places, and they'd never even heard of it.

from little acorns

Call Me Jimmy wrote: »

thanks for that. is the body wash called 'milky wash'?

Yup that's the one!

That and the shampoo and conditioner are very expensive, but they are massive bottles, and I find I use far less of them than normal products. So that's helping me justify the price a little bit. Besides - if it continues to work - it'll certainly work out cheaper than steroid creams etc!

Call Me Jimmy

The price doesn't come into it for me, if it works it works. I've been looking for things to use for actual cleansing as opposed to moisturising/treating the skin. I've ordered a couple things. Had to use nizoral shampoo coz my hairline got bad but that's not a long term treatment.

I will keep ye's posted

Gael23

Call Me Jimmy wrote: »

The price doesn't come into it for me, if it works it works. I've been looking for things to use for actual cleansing as opposed to moisturising/treating the skin. I've ordered a couple things. Had to use nizoral shampoo coz my hairline got bad but that's not a long term treatment.

I will keep ye's posted

Have you ever used Elave body wash?

from little acorns

Call Me Jimmy wrote: »

The price doesn't come into it for me, if it works it works. I've been looking for things to use for actual cleansing as opposed to moisturising/treating the skin.

Well, that's the thing, isn't it? I've been told that I should use the various emollient ointments, silcocks base, etc, as a shower gel. But they simply do not work that way, they just sit on the skin and slide off. I shower daily, but I never feel clean after attempting to wash myself with them. Bad enough being flaky and patchy in work, without feeling not quite clean as well. :eek: This stuff makes me feel properly squeaky clean, and definitely try it on your face as well as your body, honestly it feels amazing afterwards.

I'm going to stop. I'm really starting to sound like I work for them now, and I honestly don't. It's just a very long time since I've found anything that actually works for me. And like I said, my psoriasis is very severe and widespread, so I can't help getting excited when I find something that really seems to be helping with it.