Psoriasis

Call Me Jimmy · 22-01-2015 8:38pm

Many moons ago, its a creamy one rather than soapy? Used their shampoo recently and it didnt work out too great

Gael23 · 22-01-2015 8:42pm

Call Me Jimmy wrote: »

Many moons ago, its a creamy one rather than soapy? Used their shampoo recently and it didnt work out too great

Yes thats the idea of them. I've been advised to use them by the photoherapy nurses but the body wash and shampoo were €7 each so won't be doing that for long. I only used the shampoo for the first time today and it felt really nice on my head but I don't know if it changed anything. What do you mean by it didn't work out too good?

Call Me Jimmy · 22-01-2015 9:54pm

and acorn I think we all can relate to a feeling of 'oh my god this is working', for some of us it is a huge chunk of our life dealing/hoping/worrying about it. the relief when ye find something is great. its great to hear

greenfrogs · 22-01-2015 11:17pm

from little acorns wrote: »

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!)

Hi thanks so much for posting this. I meant to pick up Nizoral today but I forgot. I think I will try this instead as Nizoral leaves my hair in really bad condition. I also haven't found Nizoral great for removing flakes.

My scalp is flaring up at the moment. Earlier I was going to visit a neighbour and just before I left, I looked in the mirror. My hoodie was covered with loose scales. Luckily I spotted it before I left the house. I'm sure there are times when I haven't. It can be a very embarrassing condition.

wonga77 · 23-01-2015 10:07pm

Great to hear thats working acorns, i tried moogoo last summer, bought a whole pile of their range and, sorry to say I found it crap. didnt wok an ounce for me and the shampoo just dries out my scalp,
Brilliant that it works for you but proof that whats great for one is rubbish for the other.
I hope that doesnt put anyone off the product by the way! Just giving my own 2 cents

I have a shampoo called exorex,which I like and got exorex cream today so it will be interesting to see how it goes.

Gael23 · 24-01-2015 1:51pm

I had to use some Dovobet last night because a few patches started to break and we all know how that ends so I couldn't sit back and watch.
Ive one more 5 second treatment left and then it increases by 20%, but i'll need to start seeing results soon if I'm to stick with it.

wonga77 · 24-01-2015 2:39pm

what does it increase to timewise?

Call Me Jimmy · 24-01-2015 2:47pm

Are you having to do that long distance travelling for it too ryan?

Easy to say stick with it, which I imagine you would if it was a CURE.

I've been using medihoney barrier cream (medical grade manuka honey it's not bull****) and I left it on all day yesterday. Washed off with warm water this morning and it improved the skin a ridiculous amount, so applied it again this morning, by tomorrow or the next day at this rate it will be clear. Must order some again off amazon. It's expensive but it is working

Gael23 · 24-01-2015 3:00pm

Yes its a 3 hour journey each way. Im getting it done in Vincents.

Call Me Jimmy · 24-01-2015 3:01pm

:eek:

I can see that being a bit annoying.

Gael23 · 24-01-2015 3:09pm

I could live with it if I saw benefits but 3 sessions are done now and I couldn't sit back and watch it get worse everyday when I have something that I know will help.

dobsdave · 24-01-2015 3:14pm

ryanf1 wrote: »

I could live with it if I saw benefits but 3 sessions are done now and I couldn't sit back and watch it get worse everyday when I have something that I know will help.

Is it being covered by health insurance or public?

Gael23 · 24-01-2015 3:17pm

dobsdave wrote: »

Is it being covered by health insurance or public?

Well its available to you if you don't have health insurance. I do so I imagine that VHI will be billed for it.

wonga77 · 25-01-2015 1:46am

ryanf1 wrote: »

Yes its a 3 hour journey each way. Im getting it done in Vincents.

Fair play to you, I had a 1 1/2 journey each way and I couldnt commit to it. It will work for you though so stick with it, il post a bit more info in the morning when ive sobered up

huskerdu · 25-01-2015 3:36pm

ryanf1 wrote: »

Well its available to you if you don't have health insurance. I do so I imagine that VHI will be billed for it.

I had it done in Vincents and I have VHI cover and I was not asked for my details and the vHI were not billed for it. I know this, because every time that they pay a bill to a hospital on your behalf, you get a letter telling you this.

I found the nurses in the skin unit in Vincents to be very helpful and full of knowledge.
Maybe you have done this already, but you should ask them how long they expect it to be before you see an improvement and what their plan is for increasing the treatment time. This should giveyou more information to make a more informed decision on whether it is right for you.

Gael23 · 26-01-2015 5:26pm

They are increasing me to 7 seconds on Thursday. I'm not happy with that so now I think I just need to wait and see Dr Kirby and see where we go from here

Gael23 · 27-01-2015 11:48pm

My Psoriasis is just getting worse and worse as every day goes by. Nothing I have ever tried has worked except Dovobet and it looks like PUVA is no different.

from little acorns · 28-01-2015 12:01am

ryanf1 wrote: »

They are increasing me to 7 seconds on Thursday. I'm not happy with that so now I think I just need to wait and see Dr Kirby and see where we go from here

From my experience with the UV therapy, you should expect to see NO improvement (and yes, possibly even worsening of the condition) until you're in there for several minutes each time. So maybe around 75% of the way through the course of treatment.

It's a f*cking pain in the ass having to travel all the way there, strip off, get prepared, then stand there for the grand total of seven seconds. You'd nearly be begging them to just let you in there for ten minutes or so, so that you'd see some effect! It's frustrating as anything, especially the occasional day you might turn up and they think you might be slightly red from the last treatment, so don't increase the time. It only happened me a couple of times, but I wanted to cry!

BUT, it's not meant to work at first. I found no improvement in the early sessions, but it cleared my psoriasis completely - but it only started to clear within the last two week of the course of treatment. It stayed clear for a good two years afterwards.

It would be my choice of treatment now; unfortunately with work and family, it's not feasible at all. If you can manage it at all, it's well worth committing to the full course. But please don't expect early results - you would need to see it out until you've reached a much higher dosage before you see any real effects.

Gael23 · 28-01-2015 12:11am

from little acorns wrote: »

From my experience with the UV therapy, you should expect to see NO improvement (and yes, possibly even worsening of the condition) until you're in there for several minutes each time. So maybe around 75% of the way through the course of treatment.

It's a f*cking pain in the ass having to travel all the way there, strip off, get prepared, then stand there for the grand total of seven seconds. You'd nearly be begging them to just let you in there for ten minutes or so, so that you'd see some effect! It's frustrating as anything, especially the occasional day you might turn up and they think you might be slightly red from the last treatment, so don't increase the time. It only happened me a couple of times, but I wanted to cry!

BUT, it's not meant to work at first. I found no improvement in the early sessions, but it cleared my psoriasis completely - but it only started to clear within the last two week of the course of treatment. It stayed clear for a good two years afterwards.

It would be my choice of treatment now; unfortunately with work and family, it's not feasible at all. If you can manage it at all, it's well worth committing to the full course. But please don't expect early results - you would need to see it out until you've reached a much higher dosage before you see any real effects.

I will see it through- if I feel it's having a benefit. Its not worth it for me if I'm to travel all that way and still be like this unfortunately. At this rate by the end of my treatment I will only be on for about a minute which I think is pointless. If I could see even the slightest improvement after each session it would encourage me a lot more to stay with it.

Mountainsandh · 28-01-2015 1:57am

Same as above here Ryan, from someone who's done the treatment : stick with it, it's miraculous, but it's not immediate. They know what they're doing. The seconds exposure are precious, and please believe us if you don't believe them, it does work. When you're exposed in Puva, it's like you're raw, and extra seconds do burn, I got a bit burned ( at 2 or 3 seconds !), and I have French skin, that doesn't burn easily at all.
It's so great to be clear when it happens.

Mine comes back too fast, and it takes nearly an hour and a half to WRH for me, one way, otherwise I would avail of it more, I'm 41 and still okay for more treatments.

Hope it starts showing for you soon.

Gael23 · 28-01-2015 10:20am

I can only stick with it if I start seeing the benefits for myself. I have had 4 now and my skin is in worse condition that it was before the first one, and if that dissent change soon its not worth my travelling to vincents for it. Im reasonably good today but only because I covered myself in Protopic last night, not because of PUVA.
Is it ok to use your ointments to keep it down in the stage I'm at?

I live a 10 minute walk from WRH but there is no Dermatologist there to do it, or privately in Whitfield either.

NEDDURC · 28-01-2015 1:11pm

ryanf1 wrote: »

I can only stick with it if I start seeing the benefits for myself. I have had 4 now and my skin is in worse condition that it was before the first one, and if that dissent change soon its not worth my travelling to vincents for it. Im reasonably good today but only because I covered myself in Protopic last night, not because of PUVA.
Is it ok to use your ointments to keep it down in the stage I'm at?

I live a 10 minute walk from WRH but there is no Dermatologist there to do it, or privately in Whitfield either.

I didn't understand that you were coming all the way form Waterford to Dublin to get it down. That's rough. The stress of all that travelling alone is probably making you worse.
Is there nowhere closer that has a machine? I went to Dr. Kirby also but then Tallahght was closer to my work so went there.
I've only done it once and found it good but the lasting impact is different for everyone. For me gradually came back over the period of a year.

Gael23 · 28-01-2015 2:30pm

there are some in Cork but it's not a lot closer really.

How long should I give it before I stop if it doesn't start working?

bucketybuck · 28-01-2015 2:33pm

ryanf1 wrote: »

there are some in Cork but it's not a lot closer really.

How long should I give it before I stop if it doesn't start working?

Give it more than seven seconds anyway!

Seriously, I know every situation is different, but when I did the course I was in for far longer than a mere 7 seconds even in the first weeks. I really can't understand why its so short a time.

Gael23 · 28-01-2015 2:38pm

bucketybuck wrote: »

Give it more than seven seconds anyway!

Seriously, I know every situation is different, but when I did the course I was in for far longer than a mere 7 seconds even in the first weeks. I really can't understand why its so short a time.

The nurses decided that, not me. I need to have a pretty tough conversation tomorrow but I'm not good at that sort of thing.

seamusk84 · 28-01-2015 2:43pm

I tend to flare up pretty bad at this time of year. Have to keep brushing my shoulders and shaking out my jumper to get the scales off.

For myself I have been using Betnovate cream for years and it does the trick. The problem is you are not suppose to use it too often as it can eventually lead to thinning of the skin. So just once a week for me and I leave it sit there for a full day. Aside from that I use t-gel every day.

Managed to clear it once back in 2008. The dermatologist I saw basically had me for a full week do the following:

- Before going to bed completely massage my scalp with coicois cream.
- Then leave it in overnight by wearing a shower cap to bed.
- Wash it out in the morning with coconut oil shampoo. (cant remember the name of it)

This worked but I found the shower hat pretty annoying to sleep in. Anyway it got rid of it for about 4 months before it made a return.

bucketybuck · 28-01-2015 2:43pm

ryanf1 wrote: »

The nurses decided that, not me. I need to have a pretty tough conversation tomorrow but I'm not good at that sort of thing.

Is your skin burned even a little after any of the treatments?

brevity · 28-01-2015 2:49pm

Regarding the light treatment, it took about 30 sessions before I started seeing any improvement. Times varying from 10 seconds to 20 seconds.

As far as I can tell there is no quick fix when it comes to psoriasis, even the injections that I'm going to be on will take about a month to show any improvement.

Gael23 · 28-01-2015 3:02pm

bucketybuck wrote: »

Is your skin burned even a little after any of the treatments?

Only a patch that I forgot to put sunscreen on afterwards

brevity wrote: »

Regarding the light treatment, it took about 30 sessions before I started seeing any improvement. Times varying from 10 seconds to 20 seconds.

As far as I can tell there is no quick fix when it comes to psoriasis, even the injections that I'm going to be on will take about a month to show any improvement.

30 sessions is 15 weeks? Theres no possibly I can commit to it for that long. I'd want top be seeing some level of improvement in the next 2-3 weeks if I'm to stick to it

bucketybuck · 28-01-2015 3:07pm

ryanf1 wrote: »

Only a patch that I forgot to put sunscreen on afterwards

To be honest, after my sessions there was an element of burning. For example, you would be able to see the white line from the strap of the goggles.

I have been badly sun burned before and I'm not talking actually being burnt, but you should be a little red as if you had been in a tanning bed.

My opinion isn't worth anything to anybody, but my opinion is that 7 seconds isn't worth a damn. My doctor and nurses had me in for minutes at a time, up to over 15 minutes after about 6/7 weeks. After a few weeks I looked like I lived on Ibiza, but it also cleared up the bloody Psoriasis.

Psoriasis

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