Psoriasis

rubadub · 16-07-2014 2:52pm

Budawanny wrote: »

Usually a great help alright, if you dont go silly and burn yourself.

I have seen it more recommended to go out without any suncream on, just 10 -15mins will be enough at the right time of day. People might be able to nip out on their lunchbreak.

I use a UVB lamp anyways so my treated areas are very tolerant. I use suncream or a hat on usually untreated areas.

The all over treatment should promote a lot more vitamin D production which should help matters.

Budawanny · 16-07-2014 2:57pm

Im in a remission if thats the right word at the moment so am completely clear.
but last summer i was fishing at a beach in mayo, standing out in the salt water in my shorts, for a few hours on a sunny day.
between the UV, the sea salt and the subsequent vitamin D production ( I assume) my legs cleared up for the summer, and
they were bad enough. one little afternoon and the sun did its job. so yeah, its really hard to beat it.

Gael23 · 16-07-2014 3:11pm

Budawanny wrote: »

Usually a great help alright, if you dont go silly and burn yourself.

It's the best treatment of them all:)
I'm doing ok at the minute, had a few months where I was up and down the whole time. Part of this was down to stress and I was also sick with other stuff so treating my Psoriasis wasn't my top priority for a while!

rubadub · 18-07-2014 10:10am

Found this looking up to see if studies had been done on sunbathing.

http://www.ncbi.nlm.nih.gov/pubmed/23952638

In vitro evaluation of a novel topical cream for vitiligo and psoriasis that selectively delivers NB-UVB therapy when exposed to sunlight.
McCoy J1, Goren A, Lotti T.
Author information
Abstract
Ultraviolet-B (UVB) phototherapy is a well-established mode of treatment for several types of dermatological disease. For psoriasis and vitiligo, narrow band UVB (NB-UVB) phototherapy is an effective therapy, demonstrating greater efficacy and safety compared to broadband UVB or psoralen plus UVA treatments. While the treatment efficacy of NB-UVB artificial light sources is well documented, the long term time and cost commitment of the therapy remains a barrier to treatment adherence. Natural sunlight is an ideal source of accessible UVB radiation; however, exposure to natural sunlight generally results in erythema prior to the accumulation of sufficient dosage of therapeutic wavelengths of UVB. This communication describes a novel topical cream designed to selectively deliver NB-UVB therapy when exposed to sunlight. The topical cream when combined with natural sunlight could offer patients a more convenient phototherapy option for psoriasis and vitiligo, potentially increasing patient compliance.
© 2013 Applied Biology Inc. Dermatologic Therapy © 2013 Wiley Periodicals, Inc.

Gael23 · 21-07-2014 4:44pm

Anyone using topical ointments, when its sunny do you leave them off?
I know I should be asking my doctor that but won't be seeing him for another few weeks.
A slight issue I'm having is my back, I can't reach some patches myself so they get a little out of control on me at times

brevity · 21-07-2014 4:53pm

I'm on neotigason tablets but I use a bit of protopic on trouble spots. The uvb treatment really helped me but it does appear to be returning which is disappointing although not entirely surprising.

Other than that it's a lot of moisturiser.

rubadub · 21-07-2014 4:55pm

You can get sun cream applicators

I imagine you could make something from an old wire coathanger.

I have a hard to reach part on my back, but just after stretching for a few days I could reach it. I have also used a camera phone to see if I put cream on properly, though this was white sudocrem easily visible.

Gael23 · 21-07-2014 10:24pm

Never even seen one of those things. Anyway Dovobet is thick so might not work using those. If the patches on my back aren't bothering me, I forget about them because I can't see them. For me my treatment plan aims to stop flare ups form happening.
I'm getting interested in trying systemic medications now. I did for a very brief time 2 years ago and it did help but my doctor at the time felt it wasn't a long solution as within a few days of finishing the trial antibiotics it began to creep back.

L.Jenkins · 22-07-2014 10:45pm

After seeing my Dermatologist for the last couple of years, I'd have had the pleasure of one bad flare up since 2009. Using a biologic, which help keep it at bay. Would anyone else not consider treatment such as Fumaderm or Embrel? I found I was only wasting my time with UV and creams.

Gael23 · 22-07-2014 10:51pm

Itzy wrote: »

After seeing my Dermatologist for the last couple of years, I'd have had the pleasure of one bad flare up since 2009. Using a biologic, which help keep it at bay. Would anyone else not consider treatment such as Fumaderm or Embrel? I found I was only wasting my time with UV and creams.

If the Dermatologist I will be seeing suggests something different I would be willing to try. I am a little put off by the side effects of biologics and methotrexate though

L.Jenkins · 22-07-2014 10:55pm

I or anyone I know hasn't had any adverse side effects yet.

Gael23 · 22-07-2014 11:11pm

I suppose you only hear about the people that have problems. Im not even sure if I am a severe enough case for such treatments. I have small spots almost everywhere but no huge plaques.

Budawanny · 23-07-2014 9:41am

Itzy wrote: »

I or anyone I know hasn't had any adverse side effects yet.

That's not in the slightest bit relevant , with all due respect.
The companies that make these products have seen some very serious side effects in their clinical trials.
The scope of their clinical trials will be a bit more encompassing than themselves and a few friends.
Biologics have their place, undoubtedly, but the risks associated with them and other immunomodulators should never be under estimated.

Gael23 · 23-07-2014 10:06am

I use Protopic which is an immunomidulator and while it works amazingly well, it has the potential for some serious adverse effects. Im seeing a Dermatologist to make a decision on weather or not its ok for me ti continue using that and if not to find an alternative,
Biologics and MTX are supposed to have side effects like nausea, memory loss and so on which sou;d make me reluctant to take them

Budawanny · 23-07-2014 10:22am

ryanf1 wrote: »

I use Protopic which is an immunomidulator and while it works amazingly well, it has the potential for some serious adverse effects. Im seeing a Dermatologist to make a decision on weather or not its ok for me ti continue using that and if not to find an alternative,
Biologics and MTX are supposed to have side effects like nausea, memory loss and so on which sou;d make me reluctant to take them

Biologics can increase the risk of cancer due to reduced immune function.
increase the risk of many immuno-nervous disorders such as Multiple sclerosis.
Increase the risk of infections, such as TB and lots more. just look at the Enbrel website.

Protopic is at least a topical treatment ( I think ) so is probably less risky than injections such as enbrel ,Stelara and Humira.

Immunosuppresants such as Methotrexate,Cyclosporin has the potential for liver damage and lots more.

I reckon second generation biologics will become more refined and less risky.

Gael23 · 23-07-2014 11:29am

Budawanny wrote: »

Protopic is at least a topical treatment ( I think ) so is probably less risky than injections such as enbrel ,Stelara and Humira.

Immunosuppresants such as Methotrexate,Cyclosporin has the potential for liver damage and lots more.

I reckon second generation biologics will become more refined and less risky.

Protopic is less risky but there is an as yet unproven link with it and a number of cases of melanoma. As well as that, there is no clinical data on its use for longer than a year and my GP wants a Dermatologist to make the judgement if its safe for me to continue using it or not. Will actuually be 17 months using it by the time my appointment comes around but I cant help that but my GP does think the Dermatologist will say its fine becaue I use so little.
Youur right about the immunosuppressants, they have the potential for lots of side effects including liver damage, thats why you have to get regular blood testing.

Gael23 · 03-08-2014 9:34pm

Struggling a little at the minute. Seem to be having a bit of a plateau as in not getting too out of control but not going down that much either. Im following the regime that has been working really well for just over a year now so I think it might be time to change tack.
I have small patches all over me rather than big plaques so I don't know if I'm suitable for something like MTX or Enbrel but would be willing to try if I am.

rubadub · 07-08-2014 11:01am

I have been using a thin sheet of non-transparent plastic for masking areas while using my UVB light. I have a hole cut in the middle of it about the size of a €2 coin. This allows me to mask off all areas around some small spots and only treat the effected area.

This also makes holding it in position a lot easier, as the longish bulb can accidentally be tilted so one end is very close to the skin.

rubadub · 12-08-2014 10:21am

Is anybody taking vitamin D3 tablets?

I have some high strength 5000iu ones on the way. I was warned this might be too high a dose and recommended to get a blood test. I am heavy enough so I think it will be OK, I can get tested down the line.

I got them here
http://www.bodykind.com/product/browse/0/0/0/0/0/0/0/0/12/2463_671-Best-Vitamin-D3-5000iu-360-Softgels.aspx

delivery was just €2.72 so €19.55 in total.

I see now they have it listed in sterling so I could have possibly paid in STG. but the exchange seems fairly OK

http://www.bodykind.com/product/browse/0/0/0/0/0/0/0/0/12/2463_671-Best-Vitamin-D3-5000iu-360-Softgels.aspx

Gael23 · 17-08-2014 9:53pm

rubadub wrote: »

Is anybody taking vitamin D3 tablets?

I have some high strength 5000iu ones on the way. I was warned this might be too high a dose and recommended to get a blood test. I am heavy enough so I think it will be OK, I can get tested down the line.

No i never have and its not something I low very much about but that seems like a very high dose, as in many multiples of the guideline RDA.

Im a bit all over the place at the minute. My face, which my GP is most concerned about is great and my body isn't doing so good. Im seeing him this week about something else but I'm sure my skin will come up while I'm there.

rubadub · 18-08-2014 12:28pm

ryanf1 wrote: »

No i never have and its not something I low very much about but that seems like a very high dose, as in many multiples of the guideline RDA.

Yes, its quite common to see vitamins in tablet form at much higher doses than RDA levels.

In many cases the RDA is the minimum required to keep problems/conditions at bay. It is rarely the optimal dose. Also dosage may vary around the world for the likes of vitamin D, and vary with the seasons. It should also be dependent on bodyweight, just like drink driving is, mg per kg bodyweight

So the RDA for vitamin C might be 50 or 60mg while its common to see 1000mg tablets. 50mg may be just enough to keep scurvy at bay.

Budawanny · 21-08-2014 3:54pm

rubadub wrote: »

Yes, its quite common to see vitamins in tablet form at much higher doses than RDA levels.

In many cases the RDA is the minimum required to keep problems/conditions at bay. It is rarely the optimal dose. Also dosage may vary around the world for the likes of vitamin D, and vary with the seasons. It should also be dependent on bodyweight, just like drink driving is, mg per kg bodyweight

So the RDA for vitamin C might be 50 or 60mg while its common to see 1000mg tablets. 50mg may be just enough to keep scurvy at bay.

A certain amount of caution needs to be taken with fat soluble vitamins such as A and D. these are stored in the body and can accumulate to toxic levels ( hyper-vitaminosis). water based vitamins are not stored and are rarely taken in toxic quantities .

The toxic levels are probably way more than RDA but just something to take note of.

Tilly32 · 23-08-2014 6:44pm

Hi,
Just to share although maybe I'm learning late but I've had scalp psoriasis for about 10 years now. I used to treat it with coal tar and urea cream by ovelle but it was discontinued. I then got by on Polytar and cocois. Now with polytar also gone ive been in a bad way. Doctor prescribed ointment but its not working.

So last night after making my scalp bleed i was close to tears so after reading about hot oil helping i got out baby oil & applied it to all the plaques, rubbing on with cotton wool. i slept with it in.... washed with oilatum scalp shampoo this morning & but baby oil on again after washing. this time i got a comb & really gently combed through & the plaques lifted really easily without pain. i was freaked out by the amount of hair that came out also but it is the first time in over a year that my scalp felt clear. now that it is clear i hope to not let the build up get so bad. it felt great to actually feel a scale free scalp, like my hair can grow again!
this is probably old news but i wanted to share because it is so difficult to find things that actually work.
i know i can't go to work with a head of baby oil but even doing it twice a week at night is worth it!
:-)

Budawanny · 23-08-2014 11:25pm

Tilly32 wrote: »

Hi,
Just to share although maybe I'm learning late but I've had scalp psoriasis for about 10 years now. I used to treat it with coal tar and urea cream by ovelle but it was discontinued. I then got by on Polytar and cocois. Now with polytar also gone ive been in a bad way. Doctor prescribed ointment but its not working.

So last night after making my scalp bleed i was close to tears so after reading about hot oil helping i got out baby oil & applied it to all the plaques, rubbing on with cotton wool. i slept with it in.... washed with oilatum scalp shampoo this morning & but baby oil on again after washing. this time i got a comb & really gently combed through & the plaques lifted really easily without pain. i was freaked out by the amount of hair that came out also but it is the first time in over a year that my scalp felt clear. now that it is clear i hope to not let the build up get so bad. it felt great to actually feel a scale free scalp, like my hair can grow again!
this is probably old news but i wanted to share because it is so difficult to find things that actually work.
i know i can't go to work with a head of baby oil but even doing it twice a week at night is worth it!
:-)

My god mother used to do this to me as a child when she was minding me using Olive oil, 30 years ago

. It gave me great relief as a child. Messy and hard work to do regularly but even occasionally was great.

For your information There is a coal tar lotion you can buy over the counter called Exorex.
My Derm recommended it. It's not cheap but lasts ages. It also comes in shampoo form but I haven't used this. The lotion I can vouch for. Gave me great help last year when the psoriasis was acting the maggot.

Tilly32 · 23-08-2014 11:56pm

Budawanny wrote: »

My god mother used to do this to me as a child when she was minding me using Olive oil, 30 years ago . It gave me great relief as a child. Messy and hard work to do regularly but even occasionally was great.

For your information There is a coal tar lotion you can buy over the counter called Exorex.
My Derm recommended it. It's not cheap but lasts ages. It also comes in shampoo form but I haven't used this. The lotion I can vouch for. Gave me great help last year when the psoriasis was acting the maggot.

Thank you very much I will check that Exorex out for sure!

samsod · 25-08-2014 11:33pm

Tilly32 wrote: »

Hi,
Just to share although maybe I'm learning late but I've had scalp psoriasis for about 10 years now. I used to treat it with coal tar and urea cream by ovelle but it was discontinued. I then got by on Polytar and cocois. Now with polytar also gone ive been in a bad way. Doctor prescribed ointment but its not working.

So last night after making my scalp bleed i was close to tears so after reading about hot oil helping i got out baby oil & applied it to all the plaques, rubbing on with cotton wool. i slept with it in.... washed with oilatum scalp shampoo this morning & but baby oil on again after washing. this time i got a comb & really gently combed through & the plaques lifted really easily without pain. i was freaked out by the amount of hair that came out also but it is the first time in over a year that my scalp felt clear. now that it is clear i hope to not let the build up get so bad. it felt great to actually feel a scale free scalp, like my hair can grow again!
this is probably old news but i wanted to share because it is so difficult to find things that actually work.
i know i can't go to work with a head of baby oil but even doing it twice a week at night is worth it!
:-)

Try coconut oil have recently started to use on all areas affected with psoriasis and having great results...when applied to scalp wrap hair with cling film and leave for half hour it's great for the hair too.

samsod · 25-08-2014 11:37pm

Has anyone heard of juice plus..has been recommended by a friend for my psoriasis

Busi_Girl08 · 05-09-2014 9:21am

So after nearly 10 years of being free from any big flare-up my psoriasis is back with a fecking vengeance. Chest covered, shoulders, stomach, upper back, arms and legs speckled. It all started with a bout of strep throat and then a couple of particularly stressful weeks, including a failed driving test and a fairly manic work schedule gave it a life of its own.

I was at the GP a couple of weeks back and he prescribed me some steroid cream which I since ran out of, but since then the growth just went nuts.

I think I've managed to calm it down in the last few days by detoxing my diet - cut out sugar, gluten, nightshades, caffeine, alcohol, fun, etc and have started hitting the gym. The itching has gone way down and so has the growth of new plaques. I've started taking Super Cod Liver Oil Complex with Pantothenic Acid supplements and garlic capsules which seem to be giving me more energy.

The biggest thing I need to work on right now is stress though. I had a stressful day on Tuesday and I could feel it flare up a little bit. All work in progress though

Gael23 · 05-09-2014 10:58pm

Busi_Girl08 wrote: »

.

I was at the GP a couple of weeks back and he prescribed me some steroid cream which I since ran out of, but since then the growth just went nuts.

Go back and ask him for that cream on repeat prescription. When things are out of control its the only thing that works in my experience. Then as things get better you use it less and less and can, if you wish stop it. I dont do that and its very much part of my regime but I use it a lot less than I used.
I don't fully believe that cutting out sugar but supplements are supposed to work but I always find that during a flare up you need the steroid.

Doing ok myself. Had a stressful few months as I said before but on the way up from all that now. Dealing with some other health problems and having a rough time at college as a result set me back a little. Added to that I've had to change GP 3 times this year which didn't help either.

IrishGurll · 07-09-2014 7:42pm

What are peoples experiences with sunbeds regarding psoriasis?
I'm aware of the health effects etc but I'm willing to try anything, this really is my last resort.
I'm 18 and have been suffering since I was 11 I inherited it from my mum, she luckily just has a few plaques on her elbows but mine covers about 80% of my body.I have tried all the steroids the doctor could offer but it was making it worse, tried 3 different rounds of light therapy each time failed.Tried emu oil, changing my diet, have never smoked or touched a drink.
It's really effecting my quality of life.I don't date, haven't been to the beach in years, don't wear anything that doesn't cover my entire body.
It's torture at this point there's so much I want to do but this is holding me back.
I Have lost all of my confidence.I'm at my wits end I'm willing to try anything for some sort of relief.

wonga77 · 07-09-2014 8:49pm

Im not qualified but I would try it, just dont overdo it, a small bit every now and then and be patient.
Out of curiosity have you ever been on a foreign holiday? Somewhere sunny that would cure it, even if only for a short time.
Been to a skin specialist? They are more qualified than regular doctors.
Im sorry for your troubles, there's plenty that post on here that can sympathise with you, its a cnut of a condition to suffer from

Mountainsandh · 07-09-2014 9:14pm

IrishGurll wrote: »

What are peoples experiences with sunbeds regarding psoriasis?
I'm aware of the health effects etc but I'm willing to try anything, this really is my last resort.
I'm 18 and have been suffering since I was 11 I inherited it from my mum, she luckily just has a few plaques on her elbows but mine covers about 80% of my body.I have tried all the steroids the doctor could offer but it was making it worse, tried 3 different rounds of light therapy each time failed.Tried emu oil, changing my diet, have never smoked or touched a drink.
It's really effecting my quality of life.I don't date, haven't been to the beach in years, don't wear anything that doesn't cover my entire body.
It's torture at this point there's so much I want to do but this is holding me back.
I Have lost all of my confidence.I'm at my wits end I'm willing to try anything for some sort of relief.

I don't really see how sunbeds would be any different than light therapy, since they're basically the same rays, except you also get unwanted rays, and it's all uncontrolled.

I mean, yes, they would probably help, just like the sun does, and light therapy does, but if you say you have done 3 rounds of light therapy without success...

Were they 3 rounds with 3 sessions a week for X weeks, or are you talking about 3 sessions ?
The first 3 sessions don't really show much improvement for me anyway, I would start seeing improvement after 2/3 weeks of 3 sessions, that's why I'm saying that.

It's really strange that light therapy would not work ! was it just UVBs ?
Did you try PUVA therapy ? That's the one with tablets to sensitize your skin beforehand, you take the tablets a few hours before exposure in the cabin. That's quicker than just UVBs in my experience.

There's also methotrexate, have never tried it myself, I'm older than you and it has a lot of side effects I believe, but I might have to sometime, as I have arthritis as well as the skin psoriasis.

Having a really weird time here with mine, my hands gradually (in the space of a week or two) cleared themselves, not fully, but to a very acceptable state. No change on the rest of the body, but it's great as the hands are what I'm most conscious about, and the most uncomfortable for me.
I started juicing (just various fruit, no wheat grass and all that) a short while ago, no other change in my diet, but since I don't usually eat much fruit (I do love veg), I'm thinking they might be helping.

I don't believe diet really works though, I think it's just that maybe the fruit help bring down inflammation or something, because the arthritis is much better too.
Hope I'm not jinxing it !

Gael23 · 07-09-2014 10:07pm

i have never done any type of UV therapy and am not really in a position to at the minute. but no, I wouldn't think it would be advisable to use regular tanning beds. I do agree with what wonga77 said about seeing a specialist. A point arrives when a GP doesn't have the expertise to help anymore. Thats where I am at the moment in relation to long term suitability of what I'm using. As well as that I've been through 3 GPs this year so far which hasn't helped because they all had different theories but I'm going with the advice of my original GP which was to see a Dermatologist so I pretty much said to my current GP I want you to send me to one, he did agree and understood why so there was no issue.

Ive been researching different treatments and know that systemic treatments like methotrexate work really well but I'm afraid of the side effects. Im nit sure if I could cope with some of those things and wonder if its worth it to keep my skin clear.
I don't believe in diet at all but I do believe that although it is a tough condition once you find a treatment regime that works, you can keep it very well controlled. Im 23 by the way

IrishGurll · 08-09-2014 11:43am

Mountainsandh wrote: »

I don't really see how sunbeds would be any different than light therapy, since they're basically the same rays, except you also get unwanted rays, and it's all uncontrolled.

I mean, yes, they would probably help, just like the sun does, and light therapy does, but if you say you have done 3 rounds of light therapy without success...

Were they 3 rounds with 3 sessions a week for X weeks, or are you talking about 3 sessions ?
The first 3 sessions don't really show much improvement for me anyway, I would start seeing improvement after 2/3 weeks of 3 sessions, that's why I'm saying that.

It's really strange that light therapy would not work ! was it just UVBs ?
Did you try PUVA therapy ? That's the one with tablets to sensitize your skin beforehand, you take the tablets a few hours before exposure in the cabin. That's quicker than just UVBs in my experience.

There's also methotrexate, have never tried it myself, I'm older than you and it has a lot of side effects I believe, but I might have to sometime, as I have arthritis as well as the skin psoriasis.

Having a really weird time here with mine, my hands gradually (in the space of a week or two) cleared themselves, not fully, but to a very acceptable state. No change on the rest of the body, but it's great as the hands are what I'm most conscious about, and the most uncomfortable for me.
I started juicing (just various fruit, no wheat grass and all that) a short while ago, no other change in my diet, but since I don't usually eat much fruit (I do love veg), I'm thinking they might be helping.

I don't believe diet really works though, I think it's just that maybe the fruit help bring down inflammation or something, because the arthritis is much better too.
Hope I'm not jinxing it !

Yes the light therapy was 3 rounds three days a week for 15 weeks, Unfortuntely it just didn't work for me.I haven't tried PUVA therapy but I will look into it thank you.I was just looking towards the sunbed route because I thought because the timing would be longer and I'd have longer exposure that i might see a different effect.

It could just well be the fruit! Detoxing and cleansing out the liver is supposed to be very effective for psoriasis! Stick with the fruit for a while and see if you can spot anymore improvements!

IrishGurll · 08-09-2014 11:51am

wonga77 wrote: »

Im not qualified but I would try it, just dont overdo it, a small bit every now and then and be patient.
Out of curiosity have you ever been on a foreign holiday? Somewhere sunny that would cure it, even if only for a short time.
Been to a skin specialist? They are more qualified than regular doctors.
Im sorry for your troubles, there's plenty that post on here that can sympathise with you, its a cnut of a condition to suffer from

Yes! I went away for 2 weeks about 3 years ago the psoriasis was very mild at the time but it did help a lot!
I have been to a skin specialist he was the one that recommended light therapy and put me on different steroids and some coal/tar mixture which again didn't help at all.
Every doctor/specialist I have ever seen have never really explained psoriasis etc to me I've just been told I have it and there's no cure handed a prescription and I'm off.So all of the info I have on it comes from online.
I'm determined to find something to ease it a bit, definitely not taking 'there is no cure' for an answer.
Thank you! It sure is! So glad I found this forum.

rubadub · 08-09-2014 12:27pm

Mountainsandh wrote: »

I mean, yes, they would probably help, just like the sun does, and light therapy does, but if you say you have done 3 rounds of light therapy without success...

Some people are just not meant to respond well to UVB so I would guess the sunbed will not be of help.

If someone was thinking of buying an expensive UVB light it might be an idea to get a few sunbed sessions to see if there is any difference, so they know in advance if they should respond to light.

A sunbed is emitting lots of wavelength you do not need, it would be like needing 1000mg of vitamin C per day and talking 10 mulitivitamin pills which have 100mg vitamin C each, which would result in getting your 1000mg vitamin C but also unneccessarily overdosing on the other vitamins and suffering those ill effects.

Having a really weird time here with mine, my hands gradually (in the space of a week or two) cleared themselves, not fully, but to a very acceptable state. No change on the rest of the body, but it's great as the hands are what I'm most conscious about, and the most uncomfortable for me.

I have had some similar things happend. My legs are almost totally clear but some previously cleared patches have come back again, or new spots near old patches. Its like it has to escape somewhere.

I do think my vitamin D tablets are helping a bit, certainly no worse. They are gelatine ones like cod liver oil. I was wondering if this vitamin D is the same type as the ones in creams, i.e. can I cut open a pill and rub the oil on spots directly, or does it need to be a different chemical structure or something.

I see this cream is 10,000IU
http://www.amazon.com/Vitamin-D3-Cream-000-Ounces/dp/B00454A1HE

One full press pump dispenses the recommended 10,000 IU of Vitamin D3.

My tablets are 5,000IU so they are of a similar potency.

Mountainsandh · 08-09-2014 1:03pm

rubadub wrote: »

. Its like it has to escape somewhere.

Totally, it often feels like that : I find some improvement somewhere, but another spot gets worse. At the moment my feet are bad, thankfully I don't get anything under the sole, but the sides and a bit on the top are all "bubbled up".
I was rubbing in lots of dry heal cream and stuff over the summer (Keratin, and the usual paraffin type, when I saw the ingredients I thought I'm never paying that price again, that's the same as a good hands cream !), but my feet looked dreadful no matter what. Anyway, that's a small thing.

IrishGurll and Busy_girl08, welcome and yes, this is a great spot for information and for an old rant.

We're all in the same boat.
We're all bound to have some good stretches, and then some down times.

I'm dreading the winter approaching to be honest, from November on with the rain and the cold, I enter acute self-pity phase, because there's no escaping the flares, the soreness on my hands in particular, and the arthritis

I did sunbeds one year, and actually it felt great even just to get the few minutes of heat when it's cold outside, feeling I was doing something that might help. Think I might go for that again this year, that's really really rare when I do, so I don't see it as too much of a liability.

IrishGurll that's a real bummer that light therapy is no good to you. Then again, even when it does work, like for me it does work, you can't be doing it year in year out, and all I get out of a it is a month or so, then everything comes back progressively (pretty fast though).
It's too time consuming and the PUVA awkward (you've to wear sunglasses all day indoor incl.) for me.

bucketybuck · 08-09-2014 1:17pm

IrishGurll wrote: »

What are peoples experiences with sunbeds regarding psoriasis?
I'm aware of the health effects etc but I'm willing to try anything, this really is my last resort.
I'm 18 and have been suffering since I was 11 I inherited it from my mum, she luckily just has a few plaques on her elbows but mine covers about 80% of my body.I have tried all the steroids the doctor could offer but it was making it worse, tried 3 different rounds of light therapy each time failed.Tried emu oil, changing my diet, have never smoked or touched a drink.
It's really effecting my quality of life.I don't date, haven't been to the beach in years, don't wear anything that doesn't cover my entire body.
It's torture at this point there's so much I want to do but this is holding me back.
I Have lost all of my confidence.I'm at my wits end I'm willing to try anything for some sort of relief.

I would use sunbeds regularly to help control psoriasis, I find to be really good for stopping the spread, not to mention that the tan sorta masked the red patches on my face.

The difference for me is that I responded really well to the UVB treatment I got in the hospital, (3 times a week for a few months). If the light therapy didn't work for you I can't see the sunbeds being any different.

One thing to note, when I use a sunbed its only for about 7 minutes every couple of weeks. If you are thinking of going and sitting in a sunbed for half an hour to see if that works then you are probably looking at things the wrong way.

Busi_Girl08 · 08-09-2014 2:01pm

ryanf1 wrote: »

Go back and ask him for that cream on repeat prescription. When things are out of control its the only thing that works in my experience. Then as things get better you use it less and less and can, if you wish stop it. I dont do that and its very much part of my regime but I use it a lot less than I used.
I don't fully believe that cutting out sugar but supplements are supposed to work but I always find that during a flare up you need the steroid.
.

I find with the steroids though that once you stop using them (whether you've finished the prescription or for whatever other reason, the psoriasis can get worse. I would just be worried about becoming dependent on it.

The good news is the huge patch that's taking up most of my chest has calmed down considerably. It's not itchy any more and I think it's starting to fade. It was the first area to appear and going by previous psoriasis experience it tends to go in a first-in-first-out fashion. Fingers crossed!

I also have an Indian Head massage and floatation therapy session booked for later this week so hopefully this will at least help me with my stress.

Positive thoughts, everyone, positive thoughts!

Gael23 · 08-09-2014 2:07pm

Busi_Girl08 wrote: »

I find with the steroids though that once you stop using them (whether you've finished the prescription or for whatever other reason, the psoriasis can get worse. I would just be worried about becoming dependent on it.

In my experience over the last 9 years with the steroid,that has not happened. Yes it has and will probably always be part of my treatment regime but it really is a matter of using it correctly.
I use it daily when I'm flared up and then I use it twice weekly as maintenance all the time. I think you are at risk of getting a rebound when you stop using it completely but not too sure.

samsod · 08-09-2014 4:07pm

Mountainsandh wrote: »

I don't really see how sunbeds would be any different than light therapy, since they're basically the same rays, except you also get unwanted rays, and it's all uncontrolled.

I mean, yes, they would probably help, just like the sun does, and light therapy does, but if you say you have done 3 rounds of light therapy without success...

Were they 3 rounds with 3 sessions a week for X weeks, or are you talking about 3 sessions ?
The first 3 sessions don't really show much improvement for me anyway, I would start seeing improvement after 2/3 weeks of 3 sessions, that's why I'm saying that.

It's really strange that light therapy would not work ! was it just UVBs ?
Did you try PUVA therapy ? That's the one with tablets to sensitize your skin beforehand, you take the tablets a few hours before exposure in the cabin. That's quicker than just UVBs in my experience.

There's also methotrexate, have never tried it myself, I'm older than you and it has a lot of side effects I believe, but I might have to sometime, as I have arthritis as well as the skin psoriasis.

Having a really weird time here with mine, my hands gradually (in the space of a week or two) cleared themselves, not fully, but to a very acceptable state. No change on the rest of the body, but it's great as the hands are what I'm most conscious about, and the most uncomfortable for me.
I started juicing (just various fruit, no wheat grass and all that) a short while ago, no other change in my diet, but since I don't usually eat much fruit (I do love veg), I'm thinking they might be helping.

I don't believe diet really works though, I think it's just that maybe the fruit help bring down inflammation or something, because the arthritis is much better too.
Hope I'm not jinxing it !

Hi just read you were juicing veg..have u ever heard of juice plus? Im covered in psorasis and 3-4 monts now ive been taking the juice plus capsules and recently drinking the shakes and my psorasis is clearingðŸ˜Š. Ive tried everything from steroid creams..acupuncture..chinese herbalist and aloe vera gel but nothing was as effective as this juice plus..all natural and ive even lost some weight..bonus..check it out..also use coconut oil on my skin and it is super though best to shower before bed and then apply as it is oilyðŸ˜Š hope this helps

samsod · 08-09-2014 4:19pm

Busi_Girl08 wrote: »

So after nearly 10 years of being free from any big flare-up my psoriasis is back with a fecking vengeance. Chest covered, shoulders, stomach, upper back, arms and legs speckled. It all started with a bout of strep throat and then a couple of particularly stressful weeks, including a failed driving test and a fairly manic work schedule gave it a life of its own.

I was at the GP a couple of weeks back and he prescribed me some steroid cream which I since ran out of, but since then the growth just went nuts.

I think I've managed to calm it down in the last few days by detoxing my diet - cut out sugar, gluten, nightshades, caffeine, alcohol, fun, etc and have started hitting the gym. The itching has gone way down and so has the growth of new plaques. I've started taking Super Cod Liver Oil Complex with Pantothenic Acid supplements and garlic capsules which seem to be giving me more energy.

The biggest thing I need to work on right now is stress though. I had a stressful day on Tuesday and I could feel it flare up a little bit. All work in progress though

My psorasis broke out in a big way the first time in my late twenties when we were trying to get pregnant..we went for ivf and calmed down a little but after c section came back with a vengence..and after each section same happened.. now im stressed daily with my little crew and find exercise is my stress relief..do 3 classes a week just to get away! Changes to diet have helped..i swapped from dairy to soya ..cut out white bread potatoes pasta and rice and aldo tomatoes and peppers ( eating pizza inflames my symptoms) drink water!! I use to live on tea but was told to drink loads of water (i put slices of lemon in the jug to give taste) . I don't use steroids or coal tar but the natural clean eat seems to work realky well. Im trying out juice plus as they have had success storieswith psorasis sufferers so fingers crossed..so far so very good.
Good luck hope you find your way to treating ur psorasis x

wonga77 · 08-09-2014 8:19pm

I do find that if you cut out steriod creams altogether then it comes back twice as bad, you need to maintain a small bit every now and then to keep it under control.
I foolishly got sunburnt back in june, not on purpose i might add, I was just working at home with my shirt off and my back was badly burnt. Took a few days for it to calm down and it was really sore, the only bright spot was that it cleared my lower back completely and still no sign of it returning.
Some people swear by changing their diet, its something thats never worked for me though

Gael23 · 08-09-2014 8:34pm

Up to earlier this year I had a GP who was fantastic to me and he's the one who drafted my current regime. I previously used Dovobet whenever I felt my skin needed it but now I know my objective needs to be not to let it get to that stage. Thats where the Dovonex comes in, in that it keeps it at bay for a little longer.
I don't use much less steroid now than I did before, but the results ar miles better now form using it the right way

Mountainsandh · 08-09-2014 9:04pm

Samsod I'll check the Juiceplus out, I'd try anything except cutting out loads of things from my diet. I did try cutting out dairy once ages ago, made absolutely no difference.

I'm open to anything really.

My ostheopath suggested that a PH imbalance in my body as a whole might make things worse. Interestingly, I've always thought and felt like I had a very acidic skin, for example if my hands become sweaty it actually sort of hurts and irritates my skin, and I "kill" pearls (they become black and the lovely lustre peels off, happened with a good few pearls).
She recommended apple cider vinegar with a spoon of mollasses in the morning. I did it a little bit, but then the holidays came... I have to start again, haven't done it enough to see benefits.

Since the juicing I have done is mostly with an acidic fruit base (oranges grapefruits + various fruit), I wonder am I achieving the same sort of effect ? It seems paradoxical to fight acid with acid, but she reckons that's what's needed, and it's worth a shot.

It's puzzling that no cure has been found yet, and how little is still known about psoriasis.

Busi_Girl08 · 09-09-2014 8:51am

Does anyone else find that breaking a sweat really helps? I was at the gym last night, wearing a long sleeve jumper for my sins, and my unsightly blobs, and my arms (where most of the sweat came from) are much less inflamed this morning.

royalflush2003 · 09-09-2014 9:20am

What worked for me was " simple barrier cream " out in the sun as much as you can , plenty of water and then light treatment in st. Vincent's , cleared up in 2-3 months !!

Mountainsandh · 09-09-2014 12:43pm

Busi_Girl08 wrote: »

Does anyone else find that breaking a sweat really helps? I was at the gym last night, wearing a long sleeve jumper for my sins, and my unsightly blobs, and my arms (where most of the sweat came from) are much less inflamed this morning.

There could be something in it, certainly it would cleanse out toxins so less inflammation, don't break a sweat enough to check it out

I should

That Power Juice is ridiculously overpriced, not a hope in hell I'm going to spend 165 euros on it at once, or on the powder formula. If they had one little bottle of 60 capsules at a reasonable price, I would try it, as it is I will keep on buying fresh and juicing. Brilliant product idea, I'm sure it is high quality, but price is huge issue for me.

Gael23 · 09-09-2014 12:51pm

royalflush2003 wrote: »

What worked for me was " simple barrier cream " out in the sun as much as you can , plenty of water and then light treatment in st. Vincent's , cleared up in 2-3 months !!

I had an outbreak in the "neither regions" a while back and the GP I saw wasn't my regular one but he said to use barrier cream in place of body wash. He told me that body washes strip the skin of natural oils and fats and with psoriasis you want to actually build that up rather than take it away.

Gael23 · 10-09-2014 9:30pm

IrishGurll wrote: »

Every doctor/specialist I have ever seen have never really explained psoriasis etc to me I've just been told I have it and there's no cure handed a prescription and I'm off.So all of the info I have on it comes from online.
I'm determined to find something to ease it a bit, definitely not taking 'there is no cure' for an answer.
Thank you! It sure is! So glad I found this forum.

The cold reality is that there is no cure. But as I said, when you get an effective management plan in place then you can keep it very well controlled. Ive had a rough few months with different things and am only now back on top of it.

For too many years I was handed a prescription and told to use it, but this GP wasn't happy with that and introduced me to this combination that I'm on now. It does and will always include some level of steroids but I already explained that. Unfortunately he is no longer my GP but I'm still following the advice he gave me and hopefully after seeing Professor Kirby I will be able to fill in the few gaps I have in my plan.

Psoriasis

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