UVB question

[JayKay]

Hi all,

I have suffered with P for over 25 years now and have been using all kinds of treatment, most of my P has been pretty low and i have never had a bad case of it until now.

For some strange reason i had a massive flare up never like i have seen before so i went to my local GP and went through all kinds of new ointments of which none of them worked so they sent me to see a specialist at my local hospital.

Once there they said to me i have Guttate P and they advised me to have UVA treatment 3 times a week.

Due to how far the hospital is i could not afford cab/taxi fares and i cannot use local transport....buses/trains (long story due to mental health, crowded places is not my best friend).

I told them i could not do UVA due to costs and they gave me some other new cream, tried it for over 6 weeks and all it done was made it worse

I spoke again to the hospital about this and they said there is nothing they can do right now unless you do UVA treatment so i quit seeing the hospital.

At present the only way i am controlling it is by using the following:

Dovobet for skin
Capasal for shampoo
Dermol for shower moisturizer
Betacap for scalp

Also tried Dovonex but had very little effect.

The only way i can describe what my P looks like is that it's like loads of small blisters but without anything inside, they come and reach a point of size and after 4 weeks they seem to dry out and fade away.

To be honest i don't think Dovobet has any effect on them    i think they just go away on their own.

Anyway onto the question, i have been reading a lot about UVB treatment and the UVB beds out their.....most of them way way out of my price range.

I have been thinking long term that maybe after some saving was to buy a small one for use at home.

The one i was thinking of was this:

72W Lamp for Vitiligo, Psoriasis, Eczema, Acne, Neurodermatitis + TESTER MED!

LINK REMOVED

It seems to conform to all the UK specifications, i.e bulbs.

So i am wondering is it something you's have done and has it worked? or is it somerthing you's would say for me to stay away and not buy it?

I am asking due to me struggling a lot now with P and feel i am getting nowhere, i am at a point of hating waking up.

Look forward to hearing your thoughts.

All the best

JayKay

---

EDIT By Fred: Link Removed.

[Fred]

I would say never self treat with light. Just my opinion but you need to get it right and with a prescribed one you know the use will be monitored.

*I removed the link by the way as we have a No Link policy on Psoriasis Club.

[Grizzly Bear]

Due to how far the hospital is i could not afford cab/taxi fares and i cannot use local transport....buses/trains

Welcome JayKay to the mad house

I had the same problem as you, i was told to just 'pop' in 2-3 times a week for PUVA at taunton hospital (an hours drive on a good day, much longer on a bad day) & when i pointed out the problems, they got slightly sh*tty about it but i said i would be more than willing to pop along if they paid my travel costs...........that soon fell on deaf ears

Somehow, i don't think the clowns at the big hospitals have a clue about distance, costs etc ?

Where i am, buse services are crap, the railway was ripped up in the 60's, i haven't had a pay rise since Boadicea was riding around in her scythed chariot !!

Do not use a home UVB, to dangerous, you might end up doing more damage than good mate

GB

[JohnB]

Hi JayKay
Welcome to our little club. I afraid to say I have to agree with Fred about the sun bed/lamp and self treating. It can be very dangerous in the long term. Proper treatment units like they use in the hospitals are specifically designed to target the skin complaint with quite a narrow frequency band of light. There are also 2 different formats of treatment. UVB is what is normally offered first and is done in very short sessions starting off at tens of seconds depending upon your complexion. UVA is a different animal. You have to take tablets prior to each treatment, these increase the sensitivity of your skin to UV. The treatment is a lot harsher, they aim to take you just to the edge of burning. UVA  sessions have to have a good gap between zappings I seem to remember it was about 72 hours. Remember all UV treatment has a life maximum exposure limit. 
If you haven't done yet please trawl through the forum, there is a wealth of info to be had on all sorts.

[jiml]

Hi again JayKay, I can understand your thinking as you are fighting a losing battle with your dermatology department, I'm  be inclined to warn against home uv treatment, for the reason it cannot be effectively monitored and you could cause serious damage to your skin in the form of skin cancer

if I were you I would be writing a letter or firing off an email to the hospital dermatology department.

Telling them of your dismay at the lack of alternatives offered and your inability due to cost and your mental state of not being able to attend their UV clinic 3 times a week.

Tell them you are feeling let down by the system, because the hospital won't prescribe tablets that could give you relief, and you are feeling desperate and considering buying a home UV lamp, but have been advised this could be a dangerous move.

Tell them it's a last resort, and you would rather work with them than go it alone
Ask them to reconsider your case on a compassionate  basis as you are desperate for some relief .

That's what I would do if I were you  

[Kat]

Afraid I have to agree with the others as it's something I wouldn't do. I did the UV treatments at the doctor's and it was an hour's drive each way for me. It was a pain to drive so far for such a short visit, but luckily (I guess) I was able to do so. It did help me but I was also on oral medication at the time so not sure how much each helped to be honest. Home units are not going to be as strong so would require longer usage and I wouldn't even attempt it without a doctor's approval for the unit I was buying and a schedule of how long to use it. I would take the information with me to the doctor, tell them you can't make the visits and ask if it would benefit you to get a home unit and see what they say.

[JayKay]

Sorry Fred for putting a link, completly forgot about links

Many thanks all for your replies, you have made me make my mind up about getting a home UVB kit, deffo not going to get one

Just found out there is a hospital not far from me that also has a dermatology department (NHS did not advise me on this) and will try and get a appointment with them....Heard it can take upto 6mths to get one

Going to be a lot more forcefull with the NHS this time around....will keep you updated.

Again thanks all

JayKay

[Fred]

Sorry Fred for putting a link, completly forgot about links

No harm done I sometimes give second chances.  

I know you're OK JayKay. It's the spammers that get thrown out the door, but you have been a member for a year so if you were a spammer you would be a very lazy one.  

[jiml]

Sorry Fred for putting a link, completly forgot about links

Many thanks all for your replies, you have made me make my mind up about getting a home UVB kit, deffo not going to get one

Just found out there is a hospital not far from me that also has a dermatology department (NHS did not advise me on this) and will try and get a appointment with them....Heard it can take upto 6mths to get one

Going to be a lot more forcefull with the NHS this time around....will keep you updated.

Again thanks all

JayKay

Good choice , I believe that's a good decision, I hope you do get forceful with the NHS do tell them how psoriasis affects your life, this is not just a skin irritation it's a serious disease with major effects on our quality of life.. So yes lean hard on them to get an early appointment, they should be able to fit a serious case in within 6  months they will have their appointments filled with people like me that are clear or clearing, whereas you haven't started on an effective treatment yet ..... Surely they can accommodate you sooner
Good luck
Jim  

[Christopher Hendriks]

Hi all,

I have suffered with P for over 25 years now and have been using all kinds of treatment, most of my P has been pretty low and i have never had a bad case of it until now.

For some strange reason i had a massive flare up never like i have seen before so i went to my local GP and went through all kinds of new ointments of which none of them worked so they sent me to see a specialist at my local hospital.

Once there they said to me i have Guttate P and they advised me to have UVA treatment 3 times a week.

Due to how far the hospital is i could not afford cab/taxi fares and i cannot use local transport....buses/trains (long story due to mental health, crowded places is not my best friend).

I told them i could not do UVA due to costs and they gave me some other new cream, tried it for over 6 weeks and all it done was made it worse

I spoke again to the hospital about this and they said there is nothing they can do right now unless you do UVA treatment so i quit seeing the hospital.

At present the only way i am controlling it is by using the following:

Dovobet for skin
Capasal for shampoo
Dermol for shower moisturizer
Betacap for scalp

Also tried Dovonex but had very little effect.

The only way i can describe what my P looks like is that it's like loads of small blisters but without anything inside, they come and reach a point of size and after 4 weeks they seem to dry out and fade away.

To be honest i don't think Dovobet has any effect on them    i think they just go away on their own.

Anyway onto the question, i have been reading a lot about UVB treatment and the UVB beds out their.....most of them way way out of my price range.

I have been thinking long term that maybe after some saving was to buy a small one for use at home.

The one i was thinking of was this:

72W Lamp for Vitiligo, Psoriasis, Eczema, Acne, Neurodermatitis + TESTER MED!

LINK REMOVED

It seems to conform to all the UK specifications, i.e bulbs.

So i am wondering is it something you's have done and has it worked? or is it somerthing you's would say for me to stay away and not buy it?

I am asking due to me struggling a lot now with P and feel i am getting nowhere, i am at a point of hating waking up.

Look forward to hearing your thoughts.

All the best

JayKay

Hi jayKay.....i have been on both UVA and UVB ....am currently on UVA + Psoralen tablets, Guttate P is a distinct sign that our immune system is infected on a higher level now. i had it cover 80% of my body. Becareful verrrrrrry careful of using tooo much dovobet..its a strong steroid that can cause your P to come back with vengeance if administered for far to long. 

i hate to say this but the doctor is right, phototherapy is your next best bet....and combined with a good immune suppressant (Methoraxate or Acitretin - need to just check your bloods first) + topical steroid. Dont try to mess around with your own innovation at home, i did and it messed me up. You should see a dermatologist to get the correct advice on dosage and exposure times. So far am using UVA + Psoralen tablets , on my 13th treatment and showing great results. I have been suffering for 17 years now. Everyone's body is different, you might respond to UVA and not UVB or vice versa. 

NB# UV light can be dangerous if not used properly. Seek dermatologist first. 
NB# Cut down red meat and sugar and get enough intake of carrot juice