Psoriatic athritis

CUTESMILE

Has anyone got this condition?

And if so can you give me some advice how to cope with it as a carer.

karmacookie

http://www.arthritiscare.org.uk/Home

Tehya

Hello, my husband is extremely ill with with disease, it's a horrid condition and my heart goes out to anyone with it. I'm just had to give up a job I loved to become his full time carer. Sorry as I'm probably being a little thick but do you mean you have it and you are trying to cope caring for someone else or are you in my position where you're caring for someone else who has it.

Decent treatment to help stop it's progression is a must, hubby is treated with injections of Methotrexate each week (which I give him) but the arthritis is still very much active so he's going to have a mix of Methotrexate and Sulfasalazine. We have fingers crossed this may give him at least some relief.

Some of the best advice I could give is to make sure you're happy with your health care team, hubby has a nurse specialist (attached to his NHS consultant) he can ring at any time to discuss problems with his meds, any worries he has about treatment or even just a chat.

If there's anything you want to know please ask away,

Best regards,

Tehya

PS. Yes it was me being thick, I've just seen some of your other posts regarding your husband so it looks like we're in pretty much the same situation. Coping with a partner who is ill is a real test of the relationship but at the same time gives a new dimension to it too. Are you getting the correct benefits now, if there's anything I can help with there let us know. My husband is on ESA (in the support group) he's also in receipt of DLA - MRC, HRM we were really lucky with both of these as he didn't have an ATOS medical for either because we had the full support of our nurse specialist, GP and consultant. I've just been awarded CA which will be backdated in a fortnight.

The actual care side of things can be exhausting, both emotionally and physically, but you must take time out to look after you too. A good OT from Social Services may be something you could look into we wanted some help moving to a property my hubby could actually get in and out of as we had 10 steep steps leading up to the front door not only did she get us up the housing list we ended up in a property with a stair lift and a brand new wet room. Another good place for support is your local Carer's Centre I've just become a member and so far so good, they have coffee morning and organise days out which you can go on either with your caree or another friend.

There are also two Carer's websites with forums that I go to
http://www.carersuk.org/Forums/
http://www.carers.org/forums/
both are good for general advise and support.

chelleybelley

hi i've got it i'm on mtx and sulfasalazine i've just been told today to stop the mtx as i've been so poorly with it any questions please ask x

CUTESMILE

He suffers really badly with psoriasis and we weren't told about arthritis it was only that I came across it on the net and this explained some symptoms he'd been suffering with and he fell in September last year and at first thought he'd torn his knee ligaments and as time went on he had a MRI and was then told he'd bruised his bone and the a few weeks ago the physio at hydrotherapy said it was bruised bone marrow.

He's seeing a rhuematalogist next week.

We asked the skin clinic about arthritis but they said that they only dealt with the skin and didn't know anything about it. He's had 30 sessions of PVUA heat therapy but not cleared his skin up and various potions, lotions, creams and bath emolients and he's on a fequent flyer service.

I've dug around and found out his dad, uncle and cousin have psoriasis, his grandma and her sister had arthritis and his dad had a hip replacement due to it when he was 60.

It is awful as time goes by he's getting worse and so much so he can hardly walk far and goes in a wheelchair and other day his ankled ballooned up and yesterday was the worst day so far and it made him cry and it's getting down so much and I'm finding it so tiring and draining.

He's complaining about his back, neck, wrists and hands hurting it's awful to see and he was such an active busy person last year and what is much worse is when we see people he knows they say stop swinging the lead etc and they just don't realise how hard it is for all of us.

What is tiring is constantly having to hoover up with all the skin he sheds all over the place.

Still not got money sorted out and just sat waiting to hear about medical.

I have to say it's lovely to hear from people who understand how I'm feeling.

I did scare myself a bit yesterday whilst reading some sites which said about higher risk of hear attack, diabetes etc.

Most people don't believe that a skin condition can be part of arthritis and the other things along with it.

I have contacted the local adult social services team and waiting to hear back from them, at first the woman who I spoke to asked me what I wanted and I tried to explain that I wasn't sure and she said if it's just a few handrails then I could just fill in a form but I asked for a full OT assessment as this is what the lady at the rent office told me to do and also she said about 6 week wait to get assessed.

Tehya

(((((huge hugs))))) the rhuematalogist will be able to set up a treatment regime for him, as he's already had all the usual treatments for the skin condition itself he may well do what hubby's Doc did and put him straight onto something like Methotrexate. If this is the case he'll probably go onto the tablets first and over the first few weeks they'll up the dose to get the inflammation under control. If this does happen he'll need to have blood tests every week/fortnight to check it's working and not causing any other problems. When the correct dose is reached you'll start to notice (hopefully) not just an improvement in his pain but also his skin should start to clear too. Methotrexate is used to treat cancer but is used in arthritis in a smaller dose, it is taken on the same day each week and on the other six days he'll be given folic acid to take, this helps with side effects.

There are several other treatments and it can take time to find the correct one but be honest with the docs and speak up if you think it's taking too long as they don't always realise the full extent of how your lives are affected.

It is a very much mis-understood disease and like you we have come across some pretty awful attitudes to it. I now tell friends to go look up, or even better watch, Dennis Potter's The Singing Detective which only depicts how bad the skin side of disease can get never mind the arthrits, yes in most cases it doesn't get that back but it's a good way of showing people just how nasty psoriasis can be.

You were right to get an assessment from an OT, nobody can tell you what he'll need without seeing him so good on you for not listening to the person who said fill in a form :eek: as these things need to be done/fitted for him personally.

Try not to read too much scary stuff online, the reality is usually somewhere in-between. Again if you need to chat or need any other advice just shout,

Tehya

sunnyone

There are over 200 types of arthritis but most people have only heard of 2 (osteo and rhumatoid), people also wrongly assume that its joints only that are affected but it can affect every part of the body.

I am losing the use of my hands due to a virilant form of RA, I need surgery on both hands and being a wheelchair user thats going to leave me in bed while my hands heal and the ops not 100% going to fix my hands, i`ll just have to wait and see how much function I regain after the op.

I have had arthritis for over 20 years and it was nothing, minor joint pain, then last year I got RA, its extremly painful and has affected every aspect of my life and left me even more disabled.

I hope your husband gets a decent rhummy, mine is excelent and Ive just started another drug, the first drug didnt do anything for me at all and the arthritis spread while I was taking it, it takes 12 weeks for DMARDs to work so it will be June before I knoe if the new drug works and puts me into remission.

Tehya

sunnyone wrote: »

There are over 200 types of arthritis but most people have only heard of 2 (osteo and rhumatoid), people also wrongly assume that its joints only that are affected but it can affect every part of the body. That's so true, hubby's heart is affected but not too badly thank heavens. He has some really bad pain in his ribs though which isn't a joint obviously.

I am losing the use of my hands due to a virilant form of RA, I need surgery on both hands and being a wheelchair user thats going to leave me in bed while my hands heal and the ops not 100% going to fix my hands, i`ll just have to wait and see how much function I regain after the op. Sorry you're going through this my husband's hands and feet are affected quite badly too and your situation is what worries us. Is there any chance of getting an electric wheelchair or are those just for people with no function in the upper body.

I have had arthritis for over 20 years and it was nothing, minor joint pain, then last year I got RA, its extremly painful and has affected every aspect of my life and left me even more disabled.
RA is similar to PA (they call them poly arthritis in benefits as they affect multiple places in the body). On top of hubby's PA I have RA (Lupus suspected though) and dread to think what will happen if I get worse too. I also have brittle bone disease (osteoporosis).
I hope your husband gets a decent rhummy, mine is excelent and Ive just started another drug, the first drug didnt do anything for me at all and the arthritis spread while I was taking it, it takes 12 weeks for DMARDs to work so it will be June before I knoe if the new drug works and puts me into remission.

The right care team can make such a difference and how ever much the NHS has it's faults you do have the right to choose the hospital you think will be best for your situation.

Take care,

Tehya

sunnyone

I have a NHS powerchair and manual wheelchair but its transporting it thats the problem and Ive not been out alone for a long time, my cars a waste of money really but Im hopeing to find a suitable WAV at the mobility roadshow to give me my freedom back.

My mouth is always dry and I have womens dryness is part of my RA, there are so many diffrent parts of the body that are affected, I was amazed when I read the litrature my rhummy gave me, I was as nieave as the general public about the problems associated with arthritis. I am dreading the surgery on my hands but without it my hands will become useless claws.

My husband became very ill last July, he has stage 4 kidney failure and a suspected tumour, its hard when you both are ill but we manage as best as we can, thats all we can do.

PDC

I remember reading about Light Therapy as a treatment for Psoriasis

http://www.psoriasis-association.org.uk/ultra.html

I don't know if you can arrange a trial somewhere as the units themselves seem quite pricey;

http://www.uksadlamps.com/categories/Light-Therapy/Light-Therapy-for-Psoriasis/
http://www.taylor-jackson.com/uv-lamp.htm

Thinking of you.

CUTESMILE

My hubby had a course of 30 sessions of the light therapy at the skin clinic but it didnt take it all away and as soon as it had finished it just had a big flare up and whilst going through the course of treatment he was getting psoriaris elsewhere in places he hadn't had it before.

Well he saw the consultant today who took his history and problems now and said he has some indicators that he has arthritis but he had to have and examination then have an injection in his bum cheek (the nurse said it was a steriod combine with anti inflamatory) he also had some blood taken and then was sent to have some xrays of his feet, hands and back. He was prescribed some Diclofenac 50mg which he has to take 3 times a day and see the consultant in 6 weeks time. Hopefully we'll get some confirmation either way then.

Not sure how other people's first consultation go and is this usual for these investigations?