don't know who to turn to regarding DLA

kelfen

There IS another medication they could try. It's in injection form, and has to be done twice a week. My fiance has to use it due to severe psoriasis which can't be controlled any other way. I'ts called etanercept or enbrel

mazza111

Dunroamin wrote: »

"Is home all day" makes it sound as if he's not trying hard enough whereas others are really making the effort to get out and about! :rotfl:

It's good that people should be as active as possible but it's frequently better to put one's energies into education, training and voluntary work if one isn't up to holding down a job as opposed to going out doing unnecessary shopping just for the hell of it.

Maybe he's not at the stage to try. Maybe his pain is chronic. The OP has already stated that he wouldn't be able to look after the children. If his medication isn't helping, then the last thing he would want is to be left alone with the children. Would the OP then be able to get every school holiday off to look after her children? You should know there are different levels of disability or we would pay everyone the same amount.

I'll use my dd as an example again. She would love to go back into education, but right not it's not possible, due to the medication, sleep patterns and the brain fog from the fibro. It's getting better, but no where near enough to go back to education. Never give up hope is my motto, maybe one day. But going out every day, even if it's just out with me, or a taxi up to the shops, improves her mental health.

I done the same with my parents when they started getting on a bit. I used to take them out every day when I was on back shift. Take them out either to shops or out for a coffee n cake and sit and watch the world go by.

The OP needs to work out what's best for her family without the sarcasm.

Kelfen - They are reluctant to try my dd on any of the injections, probably because of her other conditions, or maybe because of the cost. We're going to ask for it again when her next derma consultation comes through. We go through a cycle, 2 weeks in hospital for tar and dressing, then a 6 week break, then 6 weeks of phototherapy.... then 2 weeks clear. Then it all starts up again. It's a never ending battle

lizzieuk1

Hi sunshine,
Ignore all the negative comments about ur oh, I doing have PsA but I have ra so I know how much pain he is in and how much strain it puts upon the whole family.
So far as DLA I havent applied...yet.....will soon as I am really struggling but that's another story. I think they often take ages but if ur successful they will back payment to when u applied.
I was wondering if u could maybe try to get a crisis loan I think they still exist or in a similar form but under another name u need to speak to the job centre about them.
Is early for the PSA control but there are other drugs that he can go on if the methotrexate doesn't work so keep pestering the rheumy if you don't tell them they don't know and can't help.
Hope that may help a bit.xx

nannytone_2

ths OP's husbamd doesnt just have the skin condition
psoriasis, he has psoriatic arthritis, which can be very debilitating

Tweens

Can you. To telephone the doctors to chase the report up

GlasweJen

I never suggested leaving kids alone - dad is always home given that he is bed bound?

Also how do you think working families manage when kids are sick? The school used to phone mum at work who would either arrange for me to go to grans, a neighbours or home where dad would be in bed asleep. Given that there were 5 if us, 2 with asthma and one with an undiagnosed heart defect it's not as if these calls were uncommon. You learn to manage.

Is it returning to work that you really want to do OP or is it advice on claiming benefits to enable you to stay at home and look after your husband while he gets treatment?

bloolagoon

The latter

Parva

zaksmum wrote: »

Parva, would you mind telling me please how the psoriasis is easily controllable? My 13 year old grandson has it, and he's really distressed about it.

So far, we haven't found any way to control it and I'd be really grateful if you could give me any advice.

Sorry to hijack, OP.

Dovobet is the first line of attack, it's part attack and part steroid to reduce the inflammation. There is no cure currently, though holidays in the sun also work very well as sunlight creates vitamin A which is the key issue with people suffering with psoriasis.

Horseunderwater

Sunlight does not create Vitamin A - it is Vitamin D.
Psoriasis is partly made worse if you get upset and stressed about it. What can help a little is bathing in a warm bath of Lavender oil, You do not need very much approx 5 drops in a bath of warm water. It helps the skin heal and stops the itching and irritation - it is a natural healing agent. Also helps with Excema. Get rid of any perfumed soap powders/liquids and use non bio or one with little smell. Sainsbury basics range good for a bio and if you add soda crystals to soap drawer in machine it helps clean stains at very little cost. Or buy some of those washing balls that agitate without soap to wash your sons clothing.

mazza111

Parva wrote: »

Dovobet is the first line of attack, it's part attack and part steroid to reduce the inflammation. There is no cure currently, though holidays in the sun also work very well as sunlight creates vitamin A which is the key issue with people suffering with psoriasis.

Ahh good old dovobet has worked for you. I'm sooo glad of that. It works occasionally for the dd. But her's only really reacts to the tar and phototherapy. The injections seem to be the next step.

We've tried every natural remedy, chinese herbs, hanging porridge oats in a sock over a running tap, taking a tablespoon of certain vinegars for months at a time, switching diet, essential oils, all to no avail. The only time my dd was totally free of psoriasis was when she spent 2 weeks in Corfu when she was 6. Since then she's never been plaque free, even though she's been on holiday since then.

Thankfully she's not developed the arthritic kind, but can a joint stiffen up when it dislocates so often? It kinda sucks, the only good thing that goes with her EDS/HMS is the baby soft skin and the poor wee soul had to beat that with psoriasis.

Glaswegen... Would someone who is bed bound be able to supervise kids? I have no idea how old these children are. So don't know if it would be appropriate to leave them with their father. Again that's only something the OP can decide.