Psoriasis

Gael23

My dermatologist hates Dovobet, he is right in his reasons for that but it took him a long time to find something else that worked for me.

bridgettedon

Lady is a tramp wrote: »

Definitely give it a shot! It doesn't just absorb quickly, it absorbs instantly. And you need absolutely TINY amounts of it. My dermatologist prescribed two bottles to do me two months ... I only used the first bottle for around ten days, it was so easy to use and my skin was clear, I didn't even bother phasing it out and my skin was still clear!

As mentioned my psoriasis has returned a good few weeks later, but that's due to other very definite identifiable factors. Whereas with the Dovobet cream and ointment, it returned immediately when I stopped using them.

Of course all treatments are different for everyone, but in my opinion it's well worth a go.

For me the psorasis returns after three or four days of not using the gel.

For a while I was using a fine tooth comb to comb the it from my scalp but I was defintely damaging the scalp so I stopped.

I now try to apply the gel every few days. My doctor told me psorasis thins the skin anyway when I asked her if dovobet was thinning my scalp.

I won't be going on a sun holiday this year so I'm wondering about trying sunbeds for a while. Will speak to my gp about it.

Do health insurance companies fund phototherapy?

Lady is a tramp

bridgettedon wrote: »

I won't be going on a sun holiday this year so I'm wondering about trying sunbeds for a while. Will speak to my gp about it.

Do health insurance companies fund phototherapy?

I don't think any GPs will officially recommend sunbeds, and most will advise against it. My own GP specialises in dermatology and, while he won't "officially" endorse it, he says that if he was in my position and phototherapy wasn't practical/affordable, he'd go with the sunbeds. IF he wasn't going on sun holidays, and he advised taking all usual precautions, and not overdoing it. Certainly not as a regular thing - maybe one or two courses a year, for 4-6 weeks, building up time gradually. Cover freckles/moles with plasters, use sunscreen on areas not affected by psoriasis, etc. And make sure you use the UV goggles! In particular, your face will usually clear before your body, so start using heavy sunblock on your face once that clears up. And remember, while you'll probably end up with a light tan, you should never be doing it long enough that you burn.

As for health insurance, see my earlier post re. Blackrock Clinic, though I'm not sure if this is still the case!

mighty magpie

Got an unrelated hip operation in December so I've been rehabbing a lot since and I've decided to clean up my diet as well as refrained from alcohol since NYE. With all of this I've lost about half a stone and see some improvement in my P.

Few stubborn patches on my shins and elbows have remained more or less the same.

Any P around my eyes/ears has been very good using protopic maybe 1/2 times a week. Had a 4 x 1 inch verticle patch on my back which has went to 10% of what is was (no creams, only moisturiser). A lot of the other smaller patches have started to heal from the inside so i'm left with a ring shape.

I plan to lose another 1/4 stone when I can up the intensity of my training due to the hip and i'm due to start UVB treatment in march/april. Looking forward to the summer.

To sum up, I really think the weight and maybe a high body fat >25/30% can have a lot to do with P coming and staying.

Call Me Jimmy

Good for you!

I had some protopic lying around from a long time ago and its clearing up a patch on my leg that has been there for ~ a year. I know it has a different mechanism to steroids but does anyone know if it will come back if I discontue protopic, experiences?

Gael23

Call Me Jimmy wrote: »

Good for you!

I had some protopic lying around from a long time ago and its clearing up a patch on my leg that has been there for ~ a year. I know it has a different mechanism to steroids but does anyone know if it will come back if I discontue protopic, experiences?

It will after a while but Protopic is a lifesaver for me. I find it leaves me clear for a bit longer than steroids. I use it on my face usually. I'm on Enbrel now by put I'll have a tube of Protopic to hand for a while still.

mighty magpie

I was told protopic for face and scalp only. Any side effects when used on body?

rubadub

Zombienosh wrote: »

I use bottles of Milton, and measure using the cap for the bottle

Dealz have a version of milton by johnson & johnson, for sterilizing baby bottles & teats so should similarly not have any odd chemicals which "floor bleach" might

http://www.dealz.ie/brands/johnson-and-johnson/dr-johnsons-sterilising-fluid-1-litre

it is €1.49, I saw a 1L of milton in tesco was €3.80. They do cheap petroleum jelly too (vaseline)

Lady is a tramp wrote: »

I don't think any GPs will officially recommend sunbeds, and most will advise against it.

Some sunbeds advertise themselves as vitamin D promoting, so I would guess they have bulbs in a different wavelength which would probably be better than regular ones.

wonga77

Gael23 wrote: »

It will after a while but Protopic is a lifesaver for me. I find it leaves me clear for a bit longer than steroids. I use it on my face usually. I'm on Enbrel now by put I'll have a tube of Protopic to hand for a while still.

Is enbrel prescription?

Gael23

mighty magpie wrote: »

I was told protopic for face and scalp only. Any side effects when used on body?

I only use it on my face now but over the years I have used it on my kneesand elbows. I can't see how such a thick ointment would work on the scalp.

wonga77 wrote: »

Is enbrel prescription?

Absolutely. And it has to be prescribed by a Dermatologist, not your GP. It's fairly serious stuff. In my case we were backed into a corner, anything we tried didn't work and I can't have methotrexate due to an unrelated medical issue.

Gael23

http://indo.ie/Yy1lF
Always thought this. Glad I'm not alone.

Dubl07

Gael23 wrote: »

http://indo.ie/Yy1lF
Always thought this. Glad I'm not alone.

Unrelated to P but arnica works Ryan, though I'm unsure about some of the others. I suppose it depends on which substances were trialled and who was funding the trials.

Don't pay too much heed to anyone earning a living from treating P as a lifelong condition who is not prepared to listen and digest what works for you. Vitamin D3 is now protocol although I was laughed out of the room in the early noughties when I said I'd read it was helpful. Even if the only benefit of a given substance is akin to that of a placebo, if it works it's enough for me.

fionny

Does anyone know of a good sun cream I can get for my hols? The usual sun creams irritate the hell out of my skin with the acetate or whatever that nasty stuff is.

Gael23

fionny wrote: »

Does anyone know of a good sun cream I can get for my hols? The usual sun creams irritate the hell out of my skin with the acetate or whatever that nasty stuff is.

Laroche Posay is a really good one but it's also a bit more expensive.

Audioslaven

fionny wrote: »

I was given dithrocream from my gp to use alongside the dovobet as dovobet was controlling things but not improving... the dithrocream is a little harder on the skin and you need to make sure you wash it off but after only 3 weeks im seeing a very notable difference in my skin... its returning to a lighter colours and not thickening up etc...

I believe its one of the "older" school of psoriasis treatments and as it says on the notes it does feel like you have sunburn afterwards some times but I can live with that shortterm if it clears my skin!

Ya I used Dithrocream and it did the job for me and removed my Psoriasis. I was clear for nearly 20 years and it came back about 3 years ago. I used it again and it got rid of it. I get some slight rash on my face but nothing serious. When I got psoriasis, i also used the sun to give it welly as well

rizzee

Hey all. Just said I'd write on this thread.

Age 25 have psoriasis since I was 21. Have good and bad days and have done everything from all the steroid/topic creams, healers(!!!) and had light treatment in Drogheda last Summer.

For my daily routine I use Elave shampoo and silcocks base as a moisturiser and my shower gel, is controls it. I have small dots all around my body but surprisingly most of them aren't flaky, just red rash-looking marks.

I hope to get to the GP again soon and another dose of light treatment as its been pretty bad the last 3 weeks with the flare ups!

fionny

I went to see a rather expensive dermo consultant (180euro) he suggested some parts of what I thought were psoriasis might be excema but said either way treatment the same... said light therapy not worth it for me as its only on arms and legs...

Agreed with existing treatment from GP + gave me a new steroid cream encol or something like that which is stronger... said dovobet would be less effective as id been using it so long...

Fingers crossed it helps and the sun holiday allows me to expose it properly... going to check out that LaRoche Posay suncream hopefully they do bigger tubes of it then 100ml.

screamer

Are all coal tar priducts now gone off the market? I thought poly tar was supposed to be back in 2016 but im struggling to find it in ireland.

rubadub

fionny wrote: »

the dithrocream is a little harder on the skin and you need to make sure you wash it off

What strength are you using?

I got some dithrocream after reading your post and reading up about it. I might have seen the name before but just presumed it was another brand of steroid or vitamin D type cream. Surprised it is not more popular after reading. The big advantage I saw was that the effects were comparable to steroids, but slower to react, but there was no rebound risk.

Comes in 0.1, 0.25, 0.5, 1 and 2%. You are meant to start off low and gradually go higher. So maybe its harsh as you have begun on a strong one.

I diluted mine down to 0.05% with a moisturising cream, just a small amount as its meant to be unstable. I read some studies using it this low on fair skin even though its not commercially available in that strength, in that brand anyway. Diluting it is also much cheaper as there is little price difference between the strengths. I am very careful about mixing it equally.

I have not washed the cream off and have had no burning sensation and no stained clothes. I know the stronger ones can be applied for minutes and then washed off. The weaker ones can be left on overnight and washed off in the morning.

I also read of it being used alongside UVB which I am doing. I does seem to be giving a different effect than UVB alone and is clearing up nicely. I was using zinc oxide based cream (sudocrem or white nappy creams) after the UVB and was getting big flakes developing which just fall off easily with smooth but red skin underneath. I understand dithrocream can also stain the skin which then goes away after several weeks.

Knine

Is it the GP who organizes the light treatment & what does it involve?

Dubl07

Knine wrote: »

Is it the GP who organizes the light treatment & what does it involve?

It's usually a hospital dermatology consultant who refers you to a daycare clinic. They'll do tests on your skin to see how tolerant you are of the prescribed wavelength. You might be referred for PUVA (psoralen and UVA) which could be either medicated baths + light or tablets + light, or you could be referred for UVB - no meds, just light. You strip off, remove all piercings, tie up long hair, put on goggles/protective facemask and step into a light box - for all the world like a tanning booth but rather stronger. In my case it was usually three times a week with the time/intensity ramping up a little each time. Your GP or specialist nurse should be able to talk you through it all in more detail before referring you to a consultant.

Mountainsandh

Just to add, with PUVA, if taking the tablets, your skin is made extra sensitive to sun rays for several hours, and you have to wear covering clothes and sunglasses for that length of time.

So if your job is a bit public/involves a lot of social interaction bear in mind you may have to wear sunglasses even indoors for that 3 times a week.

fionny

rubadub wrote: »

What strength are you using?

I got some dithrocream after reading your post and reading up about it. I might have seen the name before but just presumed it was another brand of steroid or vitamin D type cream. Surprised it is not more popular after reading. The big advantage I saw was that the effects were comparable to steroids, but slower to react, but there was no rebound risk.

Comes in 0.1, 0.25, 0.5, 1 and 2%. You are meant to start off low and gradually go higher. So maybe its harsh as you have begun on a strong one.

I diluted mine down to 0.05% with a moisturising cream, just a small amount as its meant to be unstable. I read some studies using it this low on fair skin even though its not commercially available in that strength, in that brand anyway. Diluting it is also much cheaper as there is little price difference between the strengths. I am very careful about mixing it equally.

I have not washed the cream off and have had no burning sensation and no stained clothes. I know the stronger ones can be applied for minutes and then washed off. The weaker ones can be left on overnight and washed off in the morning.

I also read of it being used alongside UVB which I am doing. I does seem to be giving a different effect than UVB alone and is clearing up nicely. I was using zinc oxide based cream (sudocrem or white nappy creams) after the UVB and was getting big flakes developing which just fall off easily with smooth but red skin underneath. I understand dithrocream can also stain the skin which then goes away after several weeks.

The doctor started me on the .25 I think, It still burns my skin like a good bout of sun cream but heals up fast afterwards. I have one month left in that strength on my script and I might go up to .5 then, I dont mind the burn and to be honest if I left it on for a shorter time then washed it off mores the better...

I dont find it stains either but I think the higher strengths are where that becomes an issue...

Good idea on diluting though!

I think the reason its not prescribed much any more is its "messy" and "smelly" by most peoples standards, at least thats what the consultant dermo who I had an appointment with said, personally I dont find it either of those things, it dries in QUICK and the smell is minimal and not really unpleasent.

rizzee

App next week to start another round of light treatment soon. Fingers crossed.

Gael23

rizzee wrote: »

App next week to start another round of light treatment soon. Fingers crossed.

It didn't work for me but I know people do have good success with it.

rubadub

fionny wrote: »

Good idea on diluting though!

I now dilute to 0.1% with E45 intensive moisturising cream. I did it with vaseline once too. It is working really well for me, almost all patches are gone, well at least smooth.

It is also meant to work very well in combination with urea creams, so I may get some.

fionny wrote: »

I think the reason its not prescribed much any more is its "messy" and "smelly" by most peoples standards, at least thats what the consultant dermo who I had an appointment with said, personally I dont find it either of those things, it dries in QUICK and the smell is minimal and not really unpleasent.

I find this too, I was really cautious using it but had none of the dramatic effects I saw in photos.

The 0.1% still seems to work so I will not be going up just yet, some photos of skin staining online were horrible. I did try a tiny bit of 0.1% on my nose and it did seem to discolour a little so I will not do it again, or try weaker ones. Most sites say not to use it on your face but some say it is ok, if weak.

Found the study
http://www.ncbi.nlm.nih.gov/pubmed/16285275

Dithranol in its usual petrolatum base cannot be effectively applied to the scalp. The washable cream base is not often employed in Germany, both because this form of application is not well-known and because the positive effects are underestimated while the adverse effects are overestimated. Therefore we have searched the literature for appropriate studies, application recommendations and reports on side effects. We list scalp preparations containing dithranol available in neighbouring European countries together with recommendations and warning notes. Since the dithranol molecule contains hydrophilic and lipophilic parts, it can be easily incorporated into soaps. The stability of such preparations is limited; their effectiveness is supported by the usage of dithranol in an emulsifying oil base in the Charité Department of Dermatology for more than twenty years. The special vehicle used, bio-wash-oil, is an oily fluid soap which was designed for cleaning the heavily soiled hands of factory workers. It can be easily applied to the scalp and washed off with water. Here we re-examine the original study on dithranol in bio-wash-oil published by Meffert et al. in 1979, summarize our subsequent experience and present a recent comparative study paying special attention to side effects, practical notes, and patient comfort and satisfaction.

I have a shaved head, not blade zero but can easily apply creams.

fionny

The burney level is fine for me, it heals quickly and I think if I just keep going my skin will adapt as its supposed to!

But this is what it looks like on my arm at the moment... it has faded back from its reddest:

rubadub

The dithrocream is still working well for me. I now mix it with a lidl handcream for extra dry skin. I have urea cream on the way too. Can't believe I am only hearing of this cream recently.

fionny

rubadub wrote: »

The dithrocream is still working well for me. I now mix it with a lidl handcream for extra dry skin. I have urea cream on the way too. Can't believe I am only hearing of this cream recently.

Excellent!

As mentioned I think docs and dermo's dont use it because patients dont "like" it... also Im sure a degree of marketing is at play as every doctor jumps to recommend Dovobet at the drop of a hat.

Call Me Jimmy

anyone on the dithrocream, you just asked your doctor dermatologist? Is it for dermatitis as well? Do the effects last when you stop?