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[Fred]

Keep away from medication as long as possible. But if needed, try to find something as harmless as possible.

[jiml]

Thanks already for your help.

We are seeing a dermatologist, the GP finally referred us and we saw one in February, who prescribed UVB light treatment at the local hospital.  This was three times a week, we had to go early in the morning and ended up late for school every time we went because of the distance.  This was successful and the psoriasis started to go down, but then suddenly they said we couldn't have any more treatment because of the need to ration, which I understand.  It started to come back, so the second dermatologist prescribed dovobet and dovonet, alternating each month, plus exorex for the evenings.

We went on a few holidays in the summer, and the sun and seawater seemed to work some magic as I had expected, and he was almost free by September, however by the end of September it was back with a vengeance.  I am unhappy using steroids on his young skin, and if we used it on every area we would be using a bottle a day. 

The hospital then decided they wanted to do a biopsy, when I went they made some pretty unhelpful remarks about how bad it looked, then said he could have more light treatment, once we got the results of the biopsy in four to five weeks and he had an appointment with another consultant.  Over this time it got so bad that we took the step of buying our own UVB light machine at considerable cost, and have been using that - very carefully and according to manufacturers instructions, and have had some success.  I know we will be criticised by the profession for doing this, but it seemed like the best option.  We are due to see the dermatologist next week.

Son is very open about it, he goes to a lovely school where they are very accepting of difference in whatever shape it takes, and has not had any adverse comments at all.  He has good friends and is good at sport, which strangely often seems to help with stuff like this.  I have taught him that there are worse things in the world, that this is part of him and we have to continue to manage it and look for solutions.

Well you seem to have a good outlook and he sounds like a strong young man, and it's good he has got good understanding friends at school,
I would do what ever you have to to make him comfortable, if that involves a sunlamp, that's up to you, you sound as if you are not put going to be reckless with the lamp and as long as you are careful, it should be alright,
I have a uv lamp which I purchased years ago and I used to use it when I got bad and was kept waiting by the hospital.

Here's a link to  the anti-inflammatory food pyramid The anti-inflamatory food pyramid
Where you can see the good foods and the bad foods . There may be something of interest there
I hope you find some comfort here and do keep returning if only to chat, we gave an active off topic board and all are made wel come there

[Kat]

Welcome Victoria!

I agree on being careful on the UV treatments. Manufacturer's directions are not going to be geared specifically for your son's needs. I'm in the US so I know things work a bit different here but I would take the info on what you purchased to the dermatologist and have them work out a schedule of usage if that's possible or reasonable.

I admire that you are looking into diet, some people say they have been successful at it but I'm not sure if diet alone will do the trick. It doesn't hurt to give it a try though if your son is willing.

Steroid creams and ointments. Well, they didn't help me to clear but they did help with the itching (briefly) but I'd use them sparingly as there can be issues with using them too much. Try different moisturizers and see if they help (coconut oil is a great one to try.) Some of the itchiness is from the skin being dry so moisturizing can help with that.

Medication as such a young age is scary (I find it scary at MY age.... which isn't young!) If UV and creams aren't working, you'll have to use your best judgment on what is best for your son. If he's miserable with psoriasis, then I'd ask the dermatologist what your options are and do some research. There is a lot of information here and a lot of helpful people that will tell you what they think and know about treatments.

Welcome to the forum! It's a great place with nice people and tons of information.

[D Foster]

Hi Victoria . welcome to the forum.
What a blow at a very young age however he seems to be coping very well and at last it would appear that you are getting dermatology support which should have been there months ago. The school also seems to be giving him support with some good friends which is very important.
Do tell the hospital when you have used your own UV as it is important not to over do this area ,try the food connection as it cannot do any harm and it may help . I do hope that he will improve and there is one point to remember that in the last few years there has been more improvements in the control of P and it is going in the right direction so I think we can all look forward to a better future.
Take care and all the best to him ,just have good look around as I am sure that Fred will have loads of info that will be very useful

Dave

[jiml]

Victoria I have been looking and there is a possibility of maybe using the treatment I am on for your son

There is evidence of its use in minors and here is an excerpt of a paper by the NHS

Quote:

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A number of open-label observational studies involving patients aged between 14 and 105 years have been published. A case series involving 14 children aged between eight and 17 years, and a case report of an 11-year old boy have also been published (see Appendix One). These papers provide data on long-term efficacy of FAE, off-label use in children, and use in combination with topical and other systemic agents (concomitant use with other systemic anti-psoriasis agents is not recommended [3]). All patients started on a dose of 105mg daily and, except in one study [22], increased to 1,290mg daily if tolerated. Like the trials above, many do not provide sufficient detail of baseline disease. Three used a recommended combination of outcome measures [23-25], e.g. PASI score and Physician’s Global Assessment (PGA) of improvement (see European Medicines Agency [EMA] guidance [34]), and four studies measured impact on quality of life using a validated scale [24,25,29,31].

Source.... medicinesresources.nhs.uk/_Fumaderm_for_psoriasis_final.doc

[Fred]

Victoria I have been looking and there is a possibility of maybe using the treatment I am on for your son

There is evidence of its use in minors and here is an excerpt of a paper by the NHS

Quote:

---

A number of open-label observational studies involving patients aged between 14 and 105 years have been published. A case series involving 14 children aged between eight and 17 years, and a case report of an 11-year old boy have also been published (see Appendix One). These papers provide data on long-term efficacy of FAE, off-label use in children, and use in combination with topical and other systemic agents (concomitant use with other systemic anti-psoriasis agents is not recommended [3]). All patients started on a dose of 105mg daily and, except in one study [22], increased to 1,290mg daily if tolerated. Like the trials above, many do not provide sufficient detail of baseline disease. Three used a recommended combination of outcome measures [23-25], e.g. PASI score and Physician’s Global Assessment (PGA) of improvement (see European Medicines Agency [EMA] guidance [34]), and four studies measured impact on quality of life using a validated scale [24,25,29,31].

Source.... medicinesresources.nhs.uk/_Fumaderm_for_psoriasis_final.doc

Psssssssssssssssst Fumaric acid esters for children with psoriasis

[jiml]

Thanks Fred I had forgotten that one they are probably talking about the same study I picked my extract as it is from an NHS document and possibly more relevant to know it's from the NHS if Victoria does decide to talk to her sons dermatologist about it

[Victoria1407]

Thanks I will look into it.

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