Psoriasis

Gael23

akaalias wrote: »

I was going to write a really long post about the state of my skin at the moment and it's effect on my mental health but I won't, I'll get right to the point.

Based on what I've been reading I need to try UVB and, for myself, I need to try it as soon as possible.

What is the quickest way for me to start receiving this treatment? If it's any help, I have no private health insurance and have psoriasis on my....scalp, ears, groin, dick, ass-crack, belly-button, some spots on my legs, back, chest and stomach.

I'd like to say it's driving me crazy but it's not, it's depressing me.

Ok, first off you need to keep calm and take positive steps to fix this.
Then you need to visit your GP (sooner rather than later). Your GP will refer you to a dermatologist and also give you some more immediate treatment while your waiting.
You don't absolutely need health insurance to receive UVB or UVA treatment but you will be waiting a while to see a Dermatologist if you go public so if you can at all pay for the consolation that will speed things up considerably.
Either way it will take a few months for the whole process but your GP will help keep it more bearable in that time.
The genital areas are really tough to deal with, the ass crack in particular as the itch is just unbearable. I found it helped to use wipes instead of toilet paper and keep the stools soft to minimise irritation to the area.
Sorry for the long post but I just wanted to make clear that this can be fixed, your GP will need to look at all affected areas but thats only so you can get the best treatment.

stefanovich

Gael23 wrote: »

Ok, first off you need to keep calm and take positive steps to fix this.
Then you need to visit your GP (sooner rather than later). Your GP will refer you to a dermatologist and also give you some more immediate treatment while your waiting.
You don't absolutely need health insurance to receive UVB or UVA treatment but you will be waiting a while to see a Dermatologist if you go public so if you can at all pay for the consolation that will speed things up considerably.
Either way it will take a few months for the whole process but your GP will help keep it more bearable in that time.
The genital areas are really tough to deal with, the ass crack in particular as the itch is just unbearable. I found it helped to use wipes instead of toilet paper and keep the stools soft to minimise irritation to the area.
Sorry for the long post but I just wanted to make clear that this can be fixed, your GP will need to look at all affected areas but thats only so you can get the best treatment.

It's an incurable genetic condition. It can never be fixed (unless there is a medical breakthrough), just potentially treated. Personally I've been avoiding wheat as it upsets my stomach. Very difficult though, and the lack of beer is turning me into a bit of a spirit fiend at the weekends.

mocha please!

When mine was really bad and really affecting me, I went to my GP. I didn't have health insurance at the time. While I was sitting there, she rang a few different dermatologists and firmly insisted over the phone that I was an extremely urgent case and needed an appointment asap. She managed to get me seen within two weeks (and gave me a cream to use in the meantime), then once the dermatologist referred me for UVB, I was able to start it straight away on the public system. But there can be months between the GP and dermatologist appointment ... main thing is to get a good GP who'll fight your corner!

Also, do have a read of the recent posts in this thread about use of sunbeds rather than UVB therapy. It's up to each individual to make their own educated decision weighing up the risks and benefits involved.

stefanovich

mocha please! wrote: »

When mine was really bad and really affecting me, I went to my GP. I didn't have health insurance at the time. While I was sitting there, she rang a few different dermatologists and firmly insisted over the phone that I was an extremely urgent case and needed an appointment asap. She managed to get me seen within two weeks (and gave me a cream to use in the meantime), then once the dermatologist referred me for UVB, I was able to start it straight away on the public system. But there can be months between the GP and dermatologist appointment ... main thing is to get a good GP who'll fight your corner!

Does UVB really work? Worth the hassle?

Gael23

stefanovich wrote: »

It's an incurable genetic condition. It can never be fixed (unless there is a medical breakthrough), just potentially treated. Personally I've been avoiding wheat as it upsets my stomach. Very difficult though, and the lack of beer is turning me into a bit of a spirit fiend at the weekends.

It cant be cured but there are things can be done so you don't have to suffer like that. I never tried any dietary changes myself.

stefanovich

Gael23 wrote: »

It cant be cured but there are things can be done so you don't have to suffer like that. I never tried any dietary changes myself.

I read somewhere (potentially here) that 25% of poeple with psoriasis are gluten intolerant. Don't usually listen to the damn hippies but thought it's worth a try as I do get some bad stomach discomfort after certain foods (especially cake!)

mocha please!

stefanovich wrote: »

Does UVB really work? Worth the hassle?

Both times I had it, the nurses said there were very few patients that didn't see a significant improvement. In my case it disappeared completely.

Having said that, I'm using the stand up sunbeds now. They're working just as well as the UVB did. You'll only get UVB appointments during working hours, and it's difficult to get that time off work three times a week. With the sunbeds, I can just pop in if I happen to be passing a salon.

I have to say though I'm finding it a bit embarrassing that I'm starting to get a tan. My psoriasis is improving, but my skin is tanning too, moreso than with UVB. Everyone knows I haven't been on any sun holidays, and I don't know why but I'd be mortified if people knew I was using sunbeds ... It seems very vain, or something? (Obviously they wouldn't know I'm doing it for medical reasons.)

stefanovich

mocha please! wrote: »

Both times I had it, the nurses said there were very few patients that didn't see a significant improvement. In my case it disappeared completely.

Having said that, I'm using the stand up sunbeds now. They're working just as well as the UVB did. You'll only get UVB appointments during working hours, and it's difficult to get that time off work three times a week. With the sunbeds, I can just pop in if I happen to be passing a salon.

I have to say though I'm finding it a bit embarrassing that I'm starting to get a tan. My psoriasis is improving, but my skin is tanning too, moreso than with UVB. Everyone knows I haven't been on any sun holidays, and I don't know why but I'd be mortified if people knew I was using sunbeds ... It seems very vain, or something? (Obviously they wouldn't know I'm doing it for medical reasons.)

I can see why you might be embarrassed. Perhaps just fully embrace the Geordie shore look Get your teeth whitened and purchase a few gold chains. Oh, and also have rampant unprotected sex.

mocha please!

stefanovich wrote: »

I can see why you might be embarrassed. Perhaps just fully embrace the Geordie shore look Get your teeth whitened and purchase a few gold chains. Oh, and also have rampant unprotected sex.

Sounds like a plan!

z0oT

stefanovich wrote: »

It's an incurable genetic condition. It can never be fixed (unless there is a medical breakthrough), just potentially treated.

Well there are countless people who have cleared it up entirely through dietary changes alone.

Going Dairy free, Gluten free or going further and adhering to a strict Paleo diet works for many. It's worth a shot if you haven't tried a diet targetted at P before.

stefanovich wrote: »

Does UVB really work? Worth the hassle?

I think they'll only do any good if your P either goes into full on remission or improves when you get a much higher dose of sunlight.

In my case being out in the sun all the time in places like Greece and Australia doesn't do anything for my P, so I suspect they wouldn't do anything for me.

stefanovich

z0oT wrote: »

Well there are countless people who have cleared it up entirely through dietary changes alone.

Going Dairy free, Gluten free or going further and adhering to a strict Paleo diet works for many. It's worth a shot if you haven't tried a diet targetted at P before.


I think they'll only do any good if your P either goes into full on remission or improves when you get a much higher dose of sunlight.

In my case being out in the sun all the time in places like Greece and Australia doesn't do anything for my P, so I suspect they wouldn't do anything for me.

What's weird is that it cleared up quite considerably when skiing in Val d'Isere. My skin was getting zero sun, my diet consisted of lots of cheese and bread. I have no idea what caused it to improve.

Calmcookie84

I'm just back from two weeks in Italy where it was very sunny. No change in my scalp psoriasis. My elbows cleared up. I'm home since yesterday and already one of my elbows is flaring up already.

rubadub

stefanovich wrote: »

Does UVB really work? Worth the hassle?

UVB helped me hugely. I got my own light so it is not as much hassle as having to go to hospital, and it would be the fastest way to get UVB treatment.

Mine is a small bulb however, so I have to use it on several places to treat them all. Currently I would have about 18 different spots I would treat, most 2-3mins each, 2 for 5mins. If I was in hospital it would probably be a giant light treating all over at once. But if you added up the time taken to get to hospital etc it would be a lot longer. I would not do all areas on the same day anyway, or the same session anyway.

Of course you need to be extremely careful using good timers etc, some people here were burnt in hospital.

ibarelycare

rubadub wrote: »

UVB helped me hugely. I got my own light so it is not as much hassle as having to go to hospital, and it would be the fastest way to get UVB treatment.

Mine is a small bulb however, so I have to use it on several places to treat them all. Currently I would have about 18 different spots I would treat, most 2-3mins each, 2 for 5mins. If I was in hospital it would probably be a giant light treating all over at once. But if you added up the time taken to get to hospital etc it would be a lot longer. I would not do all areas on the same day anyway, or the same session anyway.

Of course you need to be extremely careful using good timers etc, some people here were burnt in hospital.

Where did you get your lamp from and how much was it, if you don't mind me asking?

rubadub

ibarelycare wrote: »

Where did you get your lamp from and how much was it, if you don't mind me asking?

I actually made my own light fitting and just bought the philips bulb separately.

I got the bulb for around €50 from the UK. I posted before about buying the bulb and putting it in a suitable office lamp, which could be got in viking or similar ones in other places. You just need to have the same fitting and adequate power supply to the lamp.

I have seen them selling on the likes of adverts before. Proper ones sold as psoriasis treatment lights. There are numerous brands but all the small ones will use the exact same philips 9W narrowband UVB bulb. Some cost stupid money just since they put a "medical" tag on it.

If I was not making it I would have got a dermalight 80 or this dermfix 1000mx
http://www.androv-medical.com/product/27/dermfix-1000mx-uv-b-lamp-for-psoriasis--vitiligo-or-eczema

There are now alternative bulbs available but I would stick with the philips, I saw a report saying they were better and I would rather stick with them, there is little in the difference.

Mountainsandh

I know there is a very fine line between sharing one's experience and giving medical advice sometimes, but what is involved in my current psoriasis improvement is not classified as medicine so I will tread carefully and share.

I have said on this thread before that juicing fruit really helps with my psoriasis, even with no other dietary changes. To give you an idea of my normal diet : I am cursed with loving all foods, the good, the bad, and the ugly. Love veg, meat, fish, processed and unprocessed foods, eat bits of all. Prefer veg to fruit, love avocado though and have it frequently.

I'm interested in blood acidity and psoriasis.
I think the juicing and acidic fruit intake paradoxically help with my psoriasis and blood ph.
(I remember reading about how, although it does not seem logical, acidic foods trigger a regulating reaction, and a certain dose of acid intake is essential to regulate blood ph, think lemony water in the morning, and apple cider vinegar!)

Recently though, I felt dehydrated, and took some dioralyte, this powder you add to water, which replenishes blood in electrolytes, recommended after a bout of diarrhoea. The improvement is spectacular, faster than juicing.
I am not going mad with that either because of course an excess of electrolytes/hydration can also cause a very dangerous imbalance. I just take half a sachet here and there, whenever I feel dehydrated.

Balancing blood ph is a complicated process that our body is programmed to regulate. It uses precious minerals, and creates acidic waste normally excreted via the kidneys, colon, skin, and lungs. Hormones are essential to trigger parts of the process. An over acidic internal environment is linked to leaky gut syndrome.

I'm just throwing in bits and pieces I have read about online, and maybe some of you guys will be happy to explore this too.
I'm very selective in what I think might affect psoriasis, I've had mine nearly 25 years so I have read and heard it all, but this is much more obvious than anything else I have tried.

I don't think electrolytes balance, acidity balance, cure P. I think somehow in psoriatic people they help cancel out inflammation and so reduce or eliminate flares.

To a lesser extent that is probably what various dietary changes achieve too imo.

This is all my opinion, not at all proven facts.
Would be interesting to find out if others have noticed improvement with dioralyte .

Edit : on a side note, my skin "kills" pearls. I have always thought it is linked to acidity. After some time in close proximity to my skin, pearls turn grey and greyer, then the nacre loses its lustre, and eventually it peels off in layers. I haven't tried wearing them in years, ruined ring, earrings, pendants, in my youth, gave up after that.

Call Me Jimmy

Mine has brought my life to a halt. In fairness not solely the skin problem, but its a huge part. Tried so many different things as everyone has and nothing.

Mountain, I think that idea of diet affecting blood ph is a myth. It stays within a very narrow range. That's not to say that certain foods aren't helpful, just not in that way I don't think. But I'm no expert either just something I heard on a podcast (and googled just now).

Personally I'm at a loss, I've improved my diet over the last few months to no effect. I don't know whether the areas of bad skin need moisture (which I have tried with moisturisers) or to be 'dried out' starving a yeast, or to be zapped with anti-fungal in the case it is a fungus.

I've no idea. Most of the time I'm at least trying something new and hoping it'll sort it out, but atm just resigned and passing the days away.

Mountainsandh

Call Me Jimmy, same here for the diet ! It would be great if it could be solved through diet, but I don't think it can.

But as we both know, inflammation's a b!tch, and ways to avoid it are a bonus.

I know the feeling of helplessness, keep your chin up, and maybe the timing is right to go ask a gp if they have anything else to be tried.

My hands are normally so bad, but the dioralyte/juicing is helping, and tbh once the hands clear or improve, I forget about the rest of my body. The hands are my big deal.

mocha please!

Interesting about the Dioralyte, never heard that one! Any idea why/how it works? I thought they were basically just salt and sugar. I'm actually supposed to be taking them at the moment (vomiting as a side effect of unrelated medicine) but I find them so hard to stomach, especially when I'm feeling queasy already!

akaalias

So I've made an appointment with my GP for tomorrow, the idea being that he refers me on to a dermatologist.

What's the quickest way for me to get this started (UVB) as quickly as possible. I read a few posts in another thread that someone was saying you could ask to be referred to a dermatologist working out of a public hospital, pay €150 or so for the first appointment and then on the public list after that.

OP, a full list of qualified medical dermatologists is available here including the guy that treats me. Pick a public hospital doctor, make one private appointment with them (speeds up the process) and they will get you on the public list at the hospital which is free.

So pay 150 now for a private appointment (some private schemes cover part of the course) with a consultant that is in a public hospital. Ask him to put you on public treatment for light treatment which is nearly always public. I did this - have been publically treated after first appointment and never looked back. 150 is nothing compared to the reflief of having it taken

Gael23

akaalias wrote: »

So I've made an appointment with my GP for tomorrow, the idea being that he refers me on to a dermatologist.

What's the quickest way for me to get this started (UVB) as quickly as possible. I read a few posts in another thread that someone was saying you could ask to be referred to a dermatologist working out of a public hospital, pay €150 or so for the first appointment and then on the public list after that.

I'm not sure about making the transfer from private to public as I've only ever been private. The uvb is public so nobody has to pay but you will have to wait a little while, I don't know where you live but if it's dublin it should be 6-8 weeks.
Well done on taking the first step though

Mountainsandh

mocha please! wrote: »

Interesting about the Dioralyte, never heard that one! Any idea why/how it works? I thought they were basically just salt and sugar. I'm actually supposed to be taking them at the moment (vomiting as a side effect of unrelated medicine) but I find them so hard to stomach, especially when I'm feeling queasy already!

Yes they are really, just basic ingredients, but when you mix them they charge with electrolytes (which you get anyway from water/food but at a lesser dose ?), I think it's really just the right balance of everything and the fresh emulsion. They do say to drink straight away and discard after a while if not drunk. This is all my really amateurish interpretation of what I have read, so don't take my words too seriously, but there is lots available to read online. I think electrolytes are basically salt/mineral particles, but charged, active if you like.


Electrolytes help with the concentration in minerals and proteins or other chemical bits of intracellular and extracellular liquids, extracellular like plasma, interstitial liquids, intracellular, well, inside the blood cells. Sometimes these liquids are too dense or too diluted. When you drink the dioralyte, you are helping your blood plasma and cells balance. These minerals travel more easily through cell membranes. So salt or other minerals are not too concentrated in plasma or inside blood cells for example. Of course concentration of salt and other minerals in or out of cells has many wide ranging consequences on the body.

http://www.nlm.nih.gov/medlineplus/ency/article/002350.htm

Electrolytes are minerals in your blood and other body fluids that carry an electric charge.

Electrolytes affect the amount of water in your body, the acidity of your blood (pH), your muscle function, and other important processes. You lose electrolytes when you sweat. You must replace them by drinking fluids that contain electrolytes. Water does not contain electrolytes.

Common electrolytes include:

Calcium
Chloride
Magnesium
Phosphorous
Potassium
Sodium
Electrolytes can be acids, bases, and salts.

Videos for nursing students are sometimes a little hard to follow, but you can get a reliable and accurate overall idea of what the story is, and how restoring electrolytes levels might help balance your blood ph, or at least its intra and extra cellular concentration so you know your body's functioning as it should.
I don't understand fully how I am reducing inflammation by gently restoring electrolytes a little bit daily, but it seems it is working. :P
https://youtu.be/gVD9N1W6mbw

Mountainsandh

akaalias wrote: »

So I've made an appointment with my GP for tomorrow, the idea being that he refers me on to a dermatologist.

What's the quickest way for me to get this started (UVB) as quickly as possible. I read a few posts in another thread that someone was saying you could ask to be referred to a dermatologist working out of a public hospital, pay €150 or so for the first appointment and then on the public list after that.

I was referred by gp every time, and all was public.
In my area there is such a shortage of dermatologists that private or public, you had to wait weeks before getting seen. (Dermatologist only comes once a month to local hospital).

z0oT

I've been pondering going to a Naturopath lately. I'm becoming more convinced that my problem is down to intestinal parasites or a bacterial overgrowth.

I've a few more things to try (some too disgusting to mention here), and then I might pay the local Naturopath here a visit.

Mountainsandh wrote: »

To give you an idea of my normal diet : I am cursed with loving all foods, the good, the bad, and the ugly. Love veg, meat, fish, processed and unprocessed foods, eat bits of all. Prefer veg to fruit, love avocado though and have it frequently.

The thing with a diet targetted at P is that you really have to commit to it fully.

Lots of people think that just by eating say.. more Dark Leafy Green vegetables it'll help, but then in the meantime they're still consuming problem foods like dairy and grains.

If you want to rule out diet totally as a remedy to your P, you really need to adhere to something like a strict Paleo diet or the more strict Paleo Autoimmune Protocol for a few months and commit to it 100%.

Problem is... it ain't easy!

mocha please!

z0oT wrote: »

The thing with a diet targetted at P is that you really have to commit to it fully.

Lots of people think that just by eating say.. more Dark Leafy Green vegetables it'll help, but then in the meantime they're still consuming problem foods like dairy and grains.

If you want to rule out diet totally as a remedy to your P, you really need to adhere to something like a strict Paleo diet or the more strict Paleo Autoimmune Protocol for a few months and commit to it 100%.

Problem is... it ain't easy!

Yep I reckon I'd be well able to commit to a strict diet like that - if only I could see immediate evidence that it was working. Having to wait two months before seeing any improvement is so disheartening. I really must give it a proper go though.

My sister has a gluten-free diet (she reckons she's gluten-intolerant rather than coeliac), she finds it fantastic, but only when you commit to it 100% of the time ... if you're only doing it 95% of the time, you may as well only be doing it 25% of the time, if that makes sense!

z0oT

mocha please! wrote: »

Yep I reckon I'd be well able to commit to a strict diet like that - if only I could see immediate evidence that it was working. Having to wait two months before seeing any improvement is so disheartening. I really must give it a proper go though.

My sister has a gluten-free diet (she reckons she's gluten-intolerant rather than coeliac), she finds it fantastic, but only when you commit to it 100% of the time ... if you're only doing it 95% of the time, you may as well only be doing it 25% of the time, if that makes sense!

Yeah, that's the thing. Results are likely to not come soon, you're really talking a three month timeframe to give it a proper shot for results. Most don't stick to it for that reason, which is a pity. It's not all grim though, going on a diet like that you'll likely find if you've other nagging health issues like IBS it'll help those big time.

With me I don't find it difficult to follow diets no matter how strict they are, generally given that through dietary changes I've lost of 20kg of bodyfat in the last few years, so the motivation and iron-clad dedication is there in me.

Omarscoming

akaalias wrote: »

So I've made an appointment with my GP for tomorrow, the idea being that he refers me on to a dermatologist.

What's the quickest way for me to get this started (UVB) as quickly as possible. I read a few posts in another thread that someone was saying you could ask to be referred to a dermatologist working out of a public hospital, pay €150 or so for the first appointment and then on the public list after that.

I was referred by my GP in April and I have received an appointment to see a dermatologist in August. I'm going to St James private or the Hermitage but its still a longer wait than I expected.

Omarscoming

Busi_Girl08 wrote: »

I had similar with a bout of strep throat last year. It took about 3-4 months to clear (not completely I'm afraid, there always seems to be a few blobs sneaking about). It seems as though once it's kicked off by something, usually a virus, any little thing can kick it off - Stress is a biggy for me.

Have been managing it with Bio Oil and silcocks base, among a few herbal/natural creams from a herbalist. It's after kicking off again a bit. It always starts in a new spot it seems. Last time my stomach and chest were in ribbons, this time round it's my shoulders and collar bone. High neck jumpers for a while I guess :P

Hi Busi, Have you had a tonsillectomy? I read a report from Michigan University that removing your tonsils has cured people with guttate P and made a big improvement in people with plaque P.

Gael23

I was referred to Vincents Private in June 2014, seen in October and I started PUVA on January 12th.

Zombienosh

It can take a while to get that first visit to a dermatologist, but once you you're in there you're grand. I've had the UVB photo therapy and the difference it made was amazing.