Psoriasis

Lady is a tramp

rizzee wrote: »

Has anyone used "normal" sunbeds in shops/gyms etc? I keep getting people saying to try it out.

Relevant post here ...

http://www.boards.ie/vbulletin/showpost.php?p=95136186&postcount=1273

ush

http://www.philips.co.uk/c-p/PSK0101_10/bluecontrol-with-innovative-blue-led-light

I bought one of these awhile back. I thought I'd come on here and share my experience.

It did nothing. I'm back on the daivobet.

suttonboi1

rubadub wrote: »

was this PUVA, BB-UVB or NB-UVB, the PUVA certainly has increased risks, studies I read on NB-UVB have shown little or no increase.

I'm not sure to be honest. I have a visit with my derm on Tuesday week so I will ask then and let you know.

Gael23

Follow up with Prof Kirby on Thursday. I haven't made a massive improvement since last time so not sure how it's going to go.

suttonboi1

Gael23 wrote: »

Follow up with Prof Kirby on Thursday. I haven't made a massive improvement since last time so not sure how it's going to go.

What treatment are you currently undergoing?

I am currently on about day 20 of my Fumaderm treatment and glad to say haven't experienced any of the nasty side effects yet. Can't really say I have noticed and change in my P although it feels like it is less flaky, but that might just be down to the fact that I am moisturising fairly well. Visiting my derm on Tuesday to get my bloods taken so hopefully it won't show up anything to discontinue treatment!!!

Gael23

I'm on Enbrel injections. I can't have Fumderm because of another medical issue I've got but to be honest id be put off by the side effects that you can get.

suttonboi1

Gael23 wrote: »

I'm on Enbrel injections. I can't have Fumderm because of another medical issue I've got but to be honest id be put off by the side effects that you can get.

How long have you been on the injections? How long before you started noticing any change? What condition is your P in? Is it expensive?

Sorry about all the questions but would like to know for future reference!

Gael23

suttonboi1 wrote: »

How long have you been on the injections? How long before you started noticing any change? What condition is your P in? Is it expensive?

Sorry about all the questions but would like to know for future reference!

Been on them for 7 months now. But that was after trying a lot of other things - PUVA for 4 months and Dovobet for years. I started noticing small changes after a few weeks but I'm still not clear, it's dramatically better but not clear, or where I thought I'd be at this point to be honest. I don't know is this as god as I'll get or not, I'll ask that tomorrow. It is a hell of a lot better and it stays down which is an improvement.
Cost depends if you have a medical card or not. If you do it's free, if not its €144 a month.

Dubl07

I admire Katie Piper but I was fed up by her new show repeatedly describing psoriasis as a skin disease last night. The young girl featured felt better after her coal tar treatment but for it wasn't exactly cutting edge for patients or particularly informative for anyone without a clue.

wonga77

Saw it advertised but missed it last night, any good? Was there any improvement in the patient?

Dubl07

The teenage patient's skin was a fair bit better after a month (5 weeks?) in hospital and she had more confidence but there was no followup as to how long it lasted, whether there was counselling involved and no mention of the stench of coal tar or how impractical it is in real life.

rizzee

Anyone on the waiting list for light therapy in Drogheda?

suttonboi1

So I'm in day 30ish of my Funaderm treatment. Had a visit with my derm on Tuesday got bloods etc taken. Haven't really noticed any improvement in my P apart from it doesn't appear as flaky anymore. More like dark red legions. I moved to the 120mg tablets twice a day yesterday for the first time and didn't experience any side effects. However today about 13.00 I took the second of my two tablets and now I am experiencing severe cramping in my stomach. Hopefully it is not a sign of things to come.

Gael23

suttonboi1 wrote: »

So I'm in day 30ish of my Funaderm treatment. Had a visit with my derm on Tuesday got bloods etc taken. Haven't really noticed any improvement in my P apart from it doesn't appear as flaky anymore. More like dark red legions. I moved to the 120mg tablets twice a day yesterday for the first time and experience and side effects. However today about 13.00 I took the second of my two tablets and now I am experiencing severe cramping in my stomach. Hopefully it is now a sign of things to come.

That to me would seem like an improvement, what you describe means the thickness is reducing, I wouldn't be ad concerned about the redness.
I don't know much about the line of treatment your on but could you take the tablets at night and then the nastiness passes overnight?

suttonboi1

Gael23 wrote: »

That to me would seem like an improvement, what you describe means the thickness is reducing, I wouldn't be ad concerned about the redness.
I don't know much about the line of treatment your on but could you take the tablets at night and then the nastiness passes overnight?

Yes, possibly is an improvement alright. Was told not to notice any change for approx 4-6 weeks so I'm getting to that time now.

I'll give that a go tonight and see. Although I'd be worried I'd be up half the night with a sore stomach. Took my first tablet at 7.30 this morning and all good so far.

IRCA

Gael23 wrote: »

Been on them for 7 months now. But that was after trying a lot of other things - PUVA for 4 months and Dovobet for years. I started noticing small changes after a few weeks but I'm still not clear, it's dramatically better but not clear, or where I thought I'd be at this point to be honest. I don't know is this as god as I'll get or not, I'll ask that tomorrow. It is a hell of a lot better and it stays down which is an improvement.
Cost depends if you have a medical card or not. If you do it's free, if not its €144 a month.

Hi,

Have Psoriatic Arthritis and was previously on Enbrel Injections and Methatrexate. The Enbrel did a fantastic job of clearing up the Psoriasis - but to be honest I just couldn't afford to keep it going (€144 / month was just too much). Been off for a few years now, Psoriasis back but hey, I'm 51 and I've just stopped worrying about it - torso and legs bad but like I said, I'm not getting stressed anymore - folks just have to take me as they find me!

That being said - I WOULD recommend the Enbrel if you can manage the self injections and of course the cost.

JP

ibarelycare

IRCA wrote: »

Hi,

Have Psoriatic Arthritis and was previously on Enbrel Injections and Methatrexate. The Enbrel did a fantastic job of clearing up the Psoriasis - but to be honest I just couldn't afford to keep it going (€144 / month was just too much). Been off for a few years now, Psoriasis back but hey, I'm 51 and I've just stopped worrying about it - torso and legs bad but like I said, I'm not getting stressed anymore - folks just have to take me as they find me!

That being said - I WOULD recommend the Enbrel if you can manage the self injections and of course the cost.

JP

I used to take that combination for PA, now I take Humira instead of Enbrel. Methotrexate has vastly improved my psoriasis. I only suffer from it very mildly now. You can get Mx both as a tablet and an injection. As a tablet it's very cheap, I think it's something like €14 for a month's dosage. It's the Humira that pushes up my prescription every month so that I'm paying the €144 threshold.

Do doctors prescribe Mx for psoriasis alone? It's a very strong drug.

Gael23

ibarelycare wrote: »

Do doctors prescribe Mx for psoriasis alone? It's a very strong drug.

Yes I think they do. I'd be a bit afraid to take it because of the reported side effects though

sheep?

Well, I'm about to find out about them!

Starting MX on Monday, tablets. Was supposed to start about a month ago, but some things got in the way.

Fingers crossed (and it's just for psoriasis btw).

ibarelycare

sheep? wrote: »

Well, I'm about to find out about them!

Starting MX on Monday, tablets. Was supposed to start about a month ago, but some things got in the way.

Fingers crossed (and it's just for psoriasis btw).

I've been on it for years. I get sicker easier (way more prone to colds, have had flu twice after never having it in my life before!) but for all the good it does, it's worth it. Just look after yourself (which I don't do a lot!) and hopefully you'll find it good for you. Keep us posted!

sheep?

Never had the flu either myself, and colds are rare enough. I'm kind of ****e ate looking after myself as well. :P

Prof. Kirby was adamant I start doing mindfulness exercises as well, but I've been at that for the past few months anyway, meditation is something I enjoy. He recommended a book by Mark Williams on it. Looks good so far. Also, I did a huge survey while in the waiting room, on the connection of skin diseases and mental health.

I'm actually quite happy that he's passionate about the connection of mental wellbeing and skin issues. Too many GPs and consultants I've been to are a little too "ah it's voodoo, JUST TAKE THESE PILLS". The multi-pronged approach is desirable imo.

Gael23

He never mentioned mindfulness exercises to me. I had to do that survey as well. I didn't get it all done on the day though.

rizzee

Starting my 2nd road of light therapy this week. Really looking forward to it, hope it will be as successful as the first time and clear up quick for a while.

suttonboi1

rizzee wrote: »

Starting my 2nd road of light therapy this week. Really looking forward to it, hope it will be as successful as the first time and clear up quick for a while.

Best of luck with it... I've had it a good few times and cleared me up nicely. Got approximately 6 months clear out of it. Out of interest how long before your P came back the last time?

suttonboi1

suttonboi1 wrote: »

Yes, possibly is an improvement alright. Was told not to notice any change for approx 4-6 weeks so I'm getting to that time now.

I'll give that a go tonight and see. Although I'd be worried I'd be up half the night with a sore stomach. Took my first tablet at 7.30 this morning and all good so far.

So not sure when taking them really impacts on the stomach cramps because took my last of 3 tablets about 18.00 yesterday and woke up at 4am with horrible stomach cramps.

On the P front still no major progress noticed. Starting to wonder if my previous assertion of reduction in flakiness is down to my improved moisturising routine or the tables. It is two weeks before I am back with my derm so hope to have made some progress before then!

rizzee

suttonboi1 wrote: »

Best of luck with it... I've had it a good few times and cleared me up nicely. Got approximately 6 months clear out of it. Out of interest how long before your P came back the last time?

Thanks! Did it roughly April/ May last year and cleared up til probably Christmas time. I was lazy and didn't continue to use moisturisers or take the emulsifying ointment baths so I'm going to continue them even after the therapy to try prolong it as much as I can!

sheep?

Gael23 wrote: »

He never mentioned mindfulness exercises to me. I had to do that survey as well. I didn't get it all done on the day though.

Yeah it was a monster survey. If you're interested, this is the book he recommended. I found it very useful!

stefanovich

I have two tubes of steroid cream prescribed by the doctor which I'm not sure I've even opened. The potential side effects are not worth it for me. They are just suppressing the issue anyhow.

I am seeing big improvements with lifestyle changes. Quit smoking, organic food, less alcohol, less sugar, exercise.

My best advice would be to watch what you put into your body. 95% of stuff in the supermarket is junk.

mighty magpie

Hi Everyone

25 sessions of UVB later and a bit of weight loss due to return to sport and things are a bit better.

Still have 2 stubborn patches on my shins. Dovobet, Dovonex or Protopic on these? have tubes of all 3.

MM

fionny

mighty magpie wrote: »

Hi Everyone

25 sessions of UVB later and a bit of weight loss due to return to sport and things are a bit better.

Still have 2 stubborn patches on my shins. Dovobet, Dovonex or Protopic on these? have tubes of all 3.

MM

Honestly I'd advise Dithrocream and stay clear of the steroids... get a script or buy it over the counter from a uk online pharmacy... its cheap and doesnt have the usual side effects of the steroids.