Psoriasis

gracielooks

Hi everyone, I am breastfeeding my 4 & a half month old son and after a gleeful period of remission my psoriasis is returning painfully fast. I used Dovobet successfully in the past but don't want to consider it again until I finish feeding the baby. It doesn't seem to be tested for pregnancy or breastfeeding. I also don't like the dependency it created for me, I had to keep using it.

I am looking for advice on more natural or safer remedies for scalp and body plaque psoriasis. Even to ease it is fine for me at the moment. Is coal tar still a thing? Oh the memories.

Diamond Doll

gracielooks wrote: »

Hi everyone, I am breastfeeding my 4 & a half month old son and after a gleeful period of remission my psoriasis is returning painfully fast. I used Dovobet successfully in the past but don't want to consider it again until I finish feeding the baby. It doesn't seem to be tested for pregnancy or breastfeeding. I also don't like the dependency it created for me, I had to keep using it.

I am looking for advice on more natural or safer remedies for scalp and body plaque psoriasis. Even to ease it is fine for me at the moment. Is coal tar still a thing? Oh the memories.

Ah I know the feeling, mine disappeared completely when I was pregnant. Was horrible seeing it return afterwards.

Worth looking into UVB therapy? If you've much maternity leave left, it's about the only time really it's possible to make the three times a week commitment. I was able to bring my small baby in to the appointments with me, the nurses had a lovely time chatting and playing with him while I was getting it done!

Gael23

gracielooks wrote: »

Hi everyone, I am breastfeeding my 4 & a half month old son and after a gleeful period of remission my psoriasis is returning painfully fast. I used Dovobet successfully in the past but don't want to consider it again until I finish feeding the baby. It doesn't seem to be tested for pregnancy or breastfeeding. I also don't like the dependency it created for me, I had to keep using it.

I am looking for advice on more natural or safer remedies for scalp and body plaque psoriasis. Even to ease it is fine for me at the moment. Is coal tar still a thing? Oh the memories.

I've said this a number of times but I don't believe in natural remedies. I'm my experience they simply don't work and they really are expensive. Dovobet does work if used correctly and your Dr will tell you if it's safe. It does create dependency and my Dermatologist doesn't give it to his patients but it does work.
I think you should consider UV therapy. I had UVA which didn't work for me? You'll need to see a Dermatologist so that means GP first.

gracielooks

Thanks for your replies. I had UV treatment before when I had 30% coverage (as a teenager in Hume Street) but I wouldn't consider it necessary for the coverage I have right now. As previously mentioned I don't want to use Dovobet until I am finished feeding the baby as there is a grey area around safety so it is not worth it to me right now.

I agree that natural remedies don't work well Gael but I am temporarily interested in them because of my situation. I am just looking for something to ease the flare and get rid of the scaling at this stage really. I thought someone might have a suggestion.

Diamond doll the nurses must have been delighted to have a baby in! Maybe I'll just get pregnant again to get rid of it. :P

Diamond Doll

Well looks like I'm back on the Dovobet again. Haven't tried it in a good few years. I seem to remember it's crazy expensive. I've been approved for a medical card but won't get it for another couple of weeks, and really should start on it straight away. Don't even know if it would be covered by medical card. Anyone know rough price? Are there any chemists around Dublin that might have it cheaper than others?

Prescription says "Dovobet 60gx2 50mcg / g gel, 1 application daily (60 gr gel.)"

Also I can't remember, which is supposed to be the "harsher" one, Dovobet or Dovonex?

Thanks!

Gael23

Diamond Doll wrote: »

Well looks like I'm back on the Dovobet again. Haven't tried it in a good few years. I seem to remember it's crazy expensive. I've been approved for a medical card but won't get it for another couple of weeks, and really should start on it straight away. Don't even know if it would be covered by medical card. Anyone know rough price? Are there any chemists around Dublin that might have it cheaper than others?

Prescription says "Dovobet 60gx2 50mcg / g gel, 1 application daily (60 gr gel.)"

Also I can't remember, which is supposed to be the "harsher" one, Dovobet or Dovonex?

Thanks!

You should have gotten a letter stating you have been approved for a medical card. This acts as your card until you get the physical card itself. Your medical card number should be on it
Dovobet is the harsher one, but it works. I never used the gel but the ointment is one of the few things that worked for me. My Dermatologist doesn't agre with it and took me off it a while ago.

Mountainsandh

MPFGLB wrote: »

psoriasis is an autoimmune condition and there is some evidence that autoimmune conditions can be controlled with an effective diet that is gluten and dairy free but high in good bacteria in the gut

Here is Dr Mercola with an explanation

http://articles.mercola.com/sites/articles/archive/2008/12/30/fend-off-psoriasis-and-eczema-with-simple-inexpensive-remedies.aspx

I stopped reading at psoriasis linked to allergies.
Not that I'd read anything like that seriously. The only thing a gluten free/allergen free diet might achieve is to reduce inflammation in people who are allergic, thereby calming down the unrelated psoriatic symptoms. so yeah, avoid all inflammation triggers like alcohol, or allergies... we pretty much all know that on this thread I'd say.

Ronney

Looking for some help here folks.

Had Psoriasis for about 4 years now, mostly on the bottom part of my legs and round my elbows. Duvobet has little effect on it.

Was referred by a specialist to go for the Phototherapy about 2 years ago. The hospital only did the treatment in the mornings which didn't really suit as it would have resulted in me having to take 3 days off work a week for 6 weeks.

Does anyone know of anywhere in the Dublin Area that does this treatment at night?

Alternatively,

Was looking at buying my own lamp and treating myself at home?
-Any one have experience of this?
- What lamp did you but?
- What was your treatment schedule? - How long/How often/increasing exposure time etc.

MPFGLB

Mountainsandh wrote: »

I stopped reading at psoriasis linked to allergies.
Not that I'd read anything like that seriously. The only thing a gluten free/allergen free diet might achieve is to reduce inflammation in people who are allergic, thereby calming down the unrelated psoriatic symptoms. so yeah, avoid all inflammation triggers like alcohol, or allergies... we pretty much all know that on this thread I'd say.

I deleted my post

Sorry if you already know it and for thinking what a doctor has to say might be wasting your time or you might take it seriously ..especially when it helped me

rubadub

MPFGLB wrote: »

Sorry if you already know it and for thinking what a doctor has to say might be wasting your time or you might take it seriously ..especially when it helped me

That Dr Mercola is on a lot of "quack watch" lists, even has his own page on skeptics dictionary. Though I do believe diet has an effect, absolutely certain about alcohol having an effect on me.

Ronney wrote: »

Was looking at buying my own lamp and treating myself at home?
-Any one have experience of this?
- What lamp did you but?
- What was your treatment schedule? - How long/How often/increasing exposure time etc.

I have a 9W lamp I made myself, using the same phillips bulb all the smaller units do. I now do 2.5-6mins per area, currently with 16 areas, 7 being on the scalp. Started out at 30sec on each, quickly building to 1.5mins.

I was thinking of getting the larger bulbs and putting in my own fitting, the official ones can cost a lot. I have seen some smaller ones second hand cheap enough before.

I have made several posts about them before, you might find some here
https://www.google.ie/webhp?sourceid=chrome-instant&ion=1&espv=2&ie=UTF-8#safe=off&q=rubadub+uvb+phillips+psoriasis+site:boards.ie

Gael23

I'm on biologics now and it's giving me a new life. Not there yet but I had resigned myself to putting up with it when PUVA stopped working

Mountainsandh

MPFGLB wrote: »

I deleted my post

Sorry if you already know it and for thinking what a doctor has to say might be wasting your time or you might take it seriously ..especially when it helped me

Sorry I didn't mean to sound that harsh.
It's just that whatever forum online or every day interaction about psoriasis, you're sure to be referred to some miraculous website with "the answer". When you've had psoriasis for 25 years, and have tried lots of options, it gets tiresome.
Tbh when I saw your post I thought it was just someone trying to get page clicks or business.

ush

rubadub wrote: »

I have a 9W lamp I made myself, using the same phillips bulb all the smaller units do. I now do 2.5-6mins per area, currently with 16 areas, 7 being on the scalp. Started out at 30sec on each, quickly building to 1.5mins.

I was thinking of getting the larger bulbs and putting in my own fitting, the official ones can cost a lot. I have seen some smaller ones second hand cheap enough before.

I have made several posts about them before, you might find some here
https://www.google.ie/webhp?sourceid=chrome-instant&ion=1&espv=2&ie=UTF-8#safe=off&q=rubadub+uvb+phillips+psoriasis+site:boards.ie

Where'd ya get that lamp?

I've had light therapy under the supervision of a dermatologist before. So I've considered buying one of the ebay versions.

But UV treatment isn't without its risks. Which makes me wonder, given that there's loads of dodgy merchandise floating around, whether those Philips bulbs are genuine. Do Philips sell their medical bulbs to smaller ebay traders.

MPFGLB

Mountainsandh wrote: »

Sorry I didn't mean to sound that harsh.
It's just that whatever forum online or every day interaction about psoriasis, you're sure to be referred to some miraculo website with "the answer". When you've had psoriasis for 25 years, and have tried lots of options, it gets tiresome.
Tbh when I saw your post I thought it was just someone trying to get page clicks or business.

That's alright ...I may be a bit sensitive

I do believe coming for a family of people with several auto immune conditions including psoriasis , rheumatoid arthritis & MS I know how important diet and especially gut health is to managing conditions, though not curing

All I know is if I dont eat wheat (and other gluten) and also cut dairy and all sugar products but take Kifir and probiotic yogurt then me symptoms are far better ...though not eay to follow consistently

rubadub

ush wrote: »

But UV treatment isn't without its risks. Which makes me wonder, given that there's loads of dodgy merchandise floating around, whether those Philips bulbs are genuine. Do Philips sell their medical bulbs to smaller ebay traders.

ebay traders could get hold of them. But I would be wary to buy on ebay. When I got mine there were no generic ones I knew of. I have read a philips report on generic narrowband UVB bulbs and I would avoid them. In older posts I think I mentioned ebay but this was before the genrics were out, or before I heard of them.

You need a fitting for the bulb, this is where the other expense comes. I posted suitable ones before, which were office table lights. The "proper" ones can come with inbuilt timers, and combs to both distance it from your skin and transmit light through hair to your scalp. A good timer is obviously essential, and protective glasses. People here reported getting burned even in hospital.

ush wrote: »

Where'd ya get that lamp?

My bulb was from a proper light bulb website, here is a link, think it ended up about €50 incl delivery

http://www.bulbfinderdirect.co.uk/uv/pl-s9w/01/prod_47035.html

I got it about 5 years ago. At the time I was also considering this place for the unit.

http://www.androv-medical.com/uv-b-shop.html?gclid=CPaz34yFlcoCFSZ22wodUUoH2A


I see a lad on adverts with a larger unit

http://www.adverts.ie/makeup-skin-care/androv-3000-uv-b-lamp-psoraiasis-vitiligo-etc/9004839

ush

Dodgy.

rubadub

ush wrote: »

Dodgy.

in general, or one bit in particular?

I have seen some saying home UVB might also be of benefit as there is less stress involved, esp. if you have to travel a long distance or do not like going to hospitals, or if you were easily embarrassed even though they are docs & nurses seeing you.

I had been looking at office lights for the small bulb, people were buying larger ones and putting them in sunbeds, or face tanners which had the correct fittings and watt rating.

Some people here just went to tanning salons with regular tanning beds and saw benefits. Some salons have beds with lights to promote vitamin d so might be better.

That might be an idea for someone who has never tried UVB at all before, as some people do not respond to it. But from your post you have tried it already.

Mountainsandh

Sorry Rubadub you probably mentioned it already, but how much surface can you cover at one time ? Like, your whole hand ?
It is tempting to look into that alright.

edit : I'm the same as the other poster, I did do some sessions in Waterford, before they closed if I gather right from Gael, but I had to arrive late for work 3 days a week for 6 weeks. My boss is really nice, I had it all organized with the employer, but when it turned out I needed more than 6 weeks I said sod it. Don't think I'll go for another course in hospital, I've had 3, but it comes back very quick with me.
Maybe the lights at home might work better, if I just do a mini course once on my hands once in a while, then elbows/arms another time, then knees/legs another time, then all the odd other places... you know, in rotation like.

Gael23

Mountainsandh wrote: »

Sorry Rubadub you probably mentioned it already, but how much surface can you cover at one time ? Like, your whole hand ?
It is tempting to look into that alright.

edit : I'm the same as the other poster, I did do some sessions in Waterford, before they closed if I gather right from Gael, but I had to arrive late for work 3 days a week for 6 weeks. My boss is really nice, I had it all organized with the employer, but when it turned out I needed more than 6 weeks I said sod it. Don't think I'll go for another course in hospital, I've had 3, but it comes back very quick with me.
Maybe the lights at home might work better, if I just do a mini course once on my hands once in a while, then elbows/arms another time, then knees/legs another time, then all the odd other places... you know, in rotation like.

As far as I'm aware there is no Dermatology service in Waterford private or public. However I heard a radio ad a few weeks back that Colin Buckley is in Aut Even,Kilkenny.

rubadub

Mountainsandh wrote: »

Sorry Rubadub you probably mentioned it already, but how much surface can you cover at one time ? Like, your whole hand ?

Mine is the smallest bulb available, all the smaller ones use the same 9W bulb, some might have 2 bulbs. It depends how far away you hold it. If I had it on my hand I could do 2 sections for 3mins each or maybe hold it further away for 6mins doing both places at once. The effect is obviously less the further away it is.

This might give some idea

https://www.youtube.com/watch?v=NNCc5Pa5E_0

there is instructions for that one here, with time recommendations, you start on new spots for just seconds. http://beatpsoriasis.com/forms/dermalight80.pdf


On the back of my head I do it in 5 sections, closely behind both ears (2 places), the very back central, and then away from the centre on towards the ears (2 more places). This could be 15-17mins in total just for those 5 spots. So it is time consuming. A bigger unit like they have in a hospital would be shining over the entire area and do it in a few minutes. But if you factor in time travelling to hospital etc it does not sound too bad in comparison. I would not be doing it every day so you might do scalp one day, and other spots the next day as it could take ages to do the lot at once.

Some prefer the idea of pin point treatment using the small light. I am still thinking of getting a bigger one like the one in adverts, or maybe just 1 single longer bulb.

huskerdu

gracielooks wrote: »

Hi everyone, I am breastfeeding my 4 & a half month old son and after a gleeful period of remission my psoriasis is returning painfully fast. I used Dovobet successfully in the past but don't want to consider it again until I finish feeding the baby. It doesn't seem to be tested for pregnancy or breastfeeding. I also don't like the dependency it created for me, I had to keep using it.

I am looking for advice on more natural or safer remedies for scalp and body plaque psoriasis. Even to ease it is fine for me at the moment. Is coal tar still a thing? Oh the memories.

I know this was posted a few months ago, so if you are still reading gracie, I had a bad post pregnancy flare up and I would recommend coal tar. Its slow but it worked eventually. Its difficult to get these days, ask in a pharmacy.

ush

rubadub wrote: »

in general, or one bit in particular?

I have seen some saying home UVB might also be of benefit as there is less stress involved, esp. if you have to travel a long distance or do not like going to hospitals, or if you were easily embarrassed even though they are docs & nurses seeing you.

I had been looking at office lights for the small bulb, people were buying larger ones and putting them in sunbeds, or face tanners which had the correct fittings and watt rating.

Some people here just went to tanning salons with regular tanning beds and saw benefits. Some salons have beds with lights to promote vitamin d so might be better.

That might be an idea for someone who has never tried UVB at all before, as some people do not respond to it. But from your post you have tried it already.

Is it even legal to import medical equipment, that requires the supervision of a doctor?

Are those bulbs genuine Philips products?

Those lamps would be far more readily available, if this was legit. It doesn't add up.

Also, UVB isn't without its risks. No medical supervision with hardware bought off the net. I wouldn't be encouraging it.

rubadub

ush wrote: »

Is it even legal to import medical equipment, that requires the supervision of a doctor?

I have no idea, I am not importing such a device. Its legal to import the lights, they do not require "supervision of a doctor".

In the US I think you do require a prescription to buy a bulb (not the light fitting), but people are still using them at home without supervision. As I said some doctors recommend it over hospital treatment as there is less stress, which can be a trigger.

ush wrote: »

Those lamps would be far more readily available, if this was legit.

I have seen them on adverts and donedeal etc many times, there are loads on amazon.co.uk - 85 results for "uvb psoriasis"
http://www.amazon.co.uk/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=uvb+psoriasis

ush wrote: »

Also, UVB isn't without its risks. No medical supervision with hardware bought off the net. I wouldn't be encouraging it.

Fair enough. Many would not encourage tanning with equipment bought off the net too, for similar reasons.

This Irish place is renting various lights.
http://www.shapeuptoneuploseweight.ie/PsoriasisTherapy/PsoriasisTherapy.html

Guy in Donegal selling a canopy
http://www.adverts.ie/healthcare/uvb-psoriasis-canppy/9110092

Irishchick

I was with my Rheumatologist yesterday. My PSA is not under control so I have to add Stelera on top of Metoject. Has anyone here used Stelera for psoriatic arthritis?

ush

I bought one of these. They're UVB free. Back with feedback in a couple of weeks.

http://www.philips.co.uk/c-p/PSK0202_10/psoriasis-treatment-bluecontrol

rubadub

ush wrote: »

I bought one of these. They're UVB free.

Where did you get it and how much?

I see them for £399 here which seems very expensive

http://www.schuco.co.uk/bluecontrol.html

The fact it is rechargeable and has fancy straps etc would up the price, but if you can find out the wavelength of the LEDs you could possibly make one.

EDIT: seem there are blue light devices for acne already. They are about 415nm wavelength. The philips bluecontrol is 453nm

http://www.blueledtherapy.philips.com/philips-light-and-health.html#technical_development

The starting point for this medical application-oriented research was a multi-disciplinary project led by Philips (Biological Stimulation of the Human Skin by Health promoting Light and Plasma Sources, ‘BioLiP’), which was funded by the German Ministry for Education and Research from 2006-2009 [Born M et al, 13N9088, TIB Hannover, 2010]. One of the observations was that, when keratinocytes were exposed to blue LED light at a wavelength of 453 nanometer (nm), multiplication decreased and differentiation increased. This finding led to the application of blue LED light treatment for psoriasis vulgaris. Another key finding was that blue light enhances the production of nitric oxide (NO) in human skin. This effect can be used for medical applications related to pain relief, blood flow enhancement and treatment of inflammatory skin conditions.

ush

I paid less than that. Got it direct from Philips.se. Paid around 300 sterling.

Call Me Jimmy

Very interested to hear how you get on. So there is no possible issue with burning like normal light treatment?

rubadub

Call Me Jimmy wrote: »

Very interested to hear how you get on. So there is no possible issue with burning like normal light treatment?

there seems to be nowhere near the risk of the UVB, which could give bad sunburn to a new spot in just 60seconds. This one has a built in 30min timer anway, and turns itself off.

I was reading studies, it seemed the acne wavelength of light was effective but the 453nm was more effective. There was talk of the acne one been possibly damaging if treated for too long a time and the 453nm was less damaging. I am not sure of what the damage is.

They tell you what intensity of light should be used too.

I have seen 3W LEDs online of htat wavelength, this is 1/5th the power of the phillips. These can be powered with a old phone charger so I will just but 1 and see if it works for me. The philips has a higher amount of LEDs widely spread out.

The LEDs are cheap, it would be nice to have them all wired separately and be able to strap them onto all your patches and treat all at once. This would require a special power supply etc.

ush

Call Me Jimmy wrote: »

Very interested to hear how you get on. So there is no possible issue with burning like normal light treatment?

If I understand it correctly, no burning. But it takes a lot longer though. 30 mins per spot for 15 weeks. Basically you'll have it on you most of the time at home. Doesn't sound that good now that I think of it.

This bloke is testing/advertising it for Philips on twitter. Its in Swedish but you can see the progress.

https://twitter.com/lundell8192