Psoriasis

Budawanny

ryanf1 wrote: »

Got an appointment with a Dermatologist in Vincents for 31st October.
Didn't expect to be waiting that long going privately. Its €200 as well

it depends on which derm your going to.
some take longers as they have an existing patient gets back quicker policy.

Gael23

Budawanny wrote: »

it depends on which derm your going to.
some take longers as they have an existing patient gets back quicker policy.

Im going to Brian Kirby in Vincents Private. He's supposed to be great with Psoriasis. They do have that sort of policy, I asked his secretary did he have a Junior Doctor or Nurses on his team because if he puts me on new treatment and I need help I cant wait 4 months for an appointment and thats when she told me new patients have to wait longer

Budawanny

ryanf1 wrote: »

Im going to Brian Kirby in Vincents Private. He's supposed to be great with Psoriasis. They do have that sort of policy, I asked his secretary did he have a Junior Doctor or Nurses on his team because if he puts me on new treatment and I need help I cant wait 4 months for an appointment and thats when she told me new patients have to wait longer

yeah exactly. and going back you wont even have to have a referral.
you can go straight to them via their booking system which is nice.
best of luck. its great dealing with the real professionals.

Gael23

I might not need to go back, he might say what I'm doing is fine in which case my GP can deal with it from there on . Its half the price if you do though

Gael23

Things have been a bit quiet here for a while.
I've been better but doing ok. Had to deal with a lot more stress than I'm used to over the last few months which caused a flare up, all that stuff isn't quite sorted yet but that's another story.
Basically I now find I can't get my skin to a point where I can switch away from Dovobet so I might go see my GP in a few weeks if it stays that way.
Someone mentioned ages ago that Dovobet can loose its effectiveness after a while but I have no idea if that's true or not. Been on it for 9 years now and sometimes wonder if I need a change. Will be seeing a Dermatologist soon anyway and also my current GP has a special interest in Dermatology

Budawanny

it can loose its effectiveness certainly. its normal for steroid treatments.
be careful coming off Dovobet. there is a real risk of rebound from this.
i speak from personal experience. I was using alot of it though.

There is a weaning process that needs to be followed when you are coming off a a strong steroid based treatment.
get that of your doctor/GP and follow it.

Also Dovobet should only be used in short bursts. not continuously for long periods.

Hope the flare up dies down.

Gael23

I usually only use it twice a week when I'm good, which is most of the time but when it's not so good I use it more often. This system usually works but been through a good deal of stress the last few months which I have no doubt set me back. Also have changed my GP 3 times since February which wound me up a little and means I have to go through everything all over agin with each one.

I'm seeing a Dermatologist in October anyway so I will review it all with him and see if he wants to make any changes. Will also be seeing my GP next month but will go sooner if I can't get it under control again.

Budawanny

Ah ok that doesnt sound like much at all to be honest. but definitely ask the questions off your GP/Derms for future reference if nothing else.

rubadub

Hope people are availing of the free UVB treatment out there, i.e. the sun!

I have noticed a good improvment from it.

Budawanny

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

rubadub

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

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

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

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

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

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

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

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

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

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

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

Gael23

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

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

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

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

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

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

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

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

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.