Psoriatic Arthritis reassurance please (if its possible) - long

[isleangel]

Hi

wondering can anyone give us a bit of hope for the future. Dh has PA for about 5 years now and only got diagnosed last August.
He has since been on methotrexate and then sulphasaladine as well, as well as arcoxia and co codamol/co dramadol (sorry if these are spelt wrong). None of these work, and he has been on steroid injections every 5 weeks since August.

This month the steroids ran out at weeks and he was left in agony. But his assessment was brought forward for the biologics, although he will still have to wait 4 months before he can start these.
The nurse also told him that this would be the last steroid injection he might get ( for obvoius reasons) but he is still in a lot of pain and can't work, as it affects his back, shoulders, neck and ankles and he can't drive to and from work and sit at the computer all day.

We are feeling a bit overwhelmed at the moment - he only gets 3 weeks paid sick which he has used up this week, and then 3 weeks half pay, then we are down to statatuory sick pay. We know there will be no way he can work while waiting for the injections, and his work has already told him he would need to increase his performance or they will sack him :(

I also don't work as we have 2 Dcs and I am their childcare and there doesn't seem to be any work within a 30 mile radius that i could do, so we are in trouble.

Is anyone on the biologics and do they work, and are there many side effects and how long do they take to work. Will they help him or will having the injections mean no immune system and still no way to work?

Thanks for reading - just don't know where to turn at the moment, and I know things can change overnight, but wanted to have some idea of what will happen, and how other people cope

[denialandpanic]

I'm sorry you are in this position. could your husband work from home temporarily as a reasonable adjustment under the equality act, out get a fit to work note for less hours? I have done both on recommendation of work occupational health.I work for a fairly understanding public body though. why can't the rheumatologist continue the steroids until the biologics start? I have psa but not as severely and it is very difficult to keep going.

[denialandpanic]

my understanding is that the biologics do with but it can take time to find the right one etc.

[isleangel]

Thank you denialandpanic. Its interesting to hear what he could do work wise. Unfortunately, his work is very against him being sick (big company) and he has asked if he could work from home, (which he can do as he has the laptop and printer at home) but they have ignored his requests and are now demanding that he catches up on all the work he is missing out of doing, otherwise they will sack him:( the fact that he has managed to take only 3 weeks in the last year is a miracle as I have seen how debilating this can be)

They say he can't have any more steroid injections because he has had about 8 in 12 months and they say this is putting his body under other side effects like increased risk of heart attacks and other things, and they don't want him continuing. He doesn't want to be on them, but they are the only things taking the pain away for a short time, although they are less effective than they were. And since we don't know how long it will take for the biologics to kick in we don't know how long he will have to suffer.

[denialandpanic]

psa counts as a disability under the equality act and his work should make reasonable adjustments do as not to discriminate against him.note of course the rules are more closely followed in the public sector but a big company should be more supportive.Had he told them what's wrong? has he been offered any help from occupational health?
arthritis uk tweeted yesterday about one of their runners in the marathon yesterday who was wheelchair bound before biologics.there is hope you just need a plan to get you there!

[denialandpanic]

I take methotrexate, celebrex max dose, sulphasalazine, max dose paracetamol and 15 mg codeine when needed.most days I struggle at work or at least getting there but I am part time anyway and not main earner. The psa has however made me really appreciate my job and I hate the fear of not being able to do it.

[isleangel]

Oh just reading this has made me feel better already and it's helping DH, so thank you so much. We know nothing of the diasability laws and things, but we knew that his work can't sack him without giving him formal warnings and things first, but since it is all coming from his psa its not his fault as he struggles with the pain and fatigue on a daily basis , as I'm sure you know.

He has told them whats wrong and he has only been threatened about his job secruity - as if we didn't have enough to contend with. they have no occupational health, and he is on the waiting list for it for home matters. Your help is fantastic as we can now see more avenues for us to explore

How long have you had psa? and are you able to survive on the tablets - the sulphasalazine made DH feel very sick, and he's off them for 2 weeks and then restarting them to see if it helps.

[denialandpanic]

I started the sulphasalazine very slowly and have had very little problems with them.they have really helped with the stiffness.

[denialandpanic]

I was diagnosed a year and a half ago.have had symptoms for a couple of years before that.

[denialandpanic]

I got access to work to come and do a workstation assessment for me at work.at the time the assessment was free but work had to buy the equipment. I have a snazzy ergonomic chair,a variety of weird mouse attachments, straight desk and software that forces frequent breaks.this all helps me manage to sit for the required time most days

[Jitterbugjules]

My husband was diagnosed with PA fifteen years ago at the age of 21, in 2006 he was put on Humira, one of the biologics, after things began to get really bad and within a month he felt dramatically better and has done ever since. He is not cured by any means, but can work, play sport etc when previously he could hardly move for pain. So there is hope that the biologics could work quite quickly.

[sashh]

Yes to access to work, talk to the job centre, they will put you in touch with the assessor.

Because I also have high BP I've been taken of the antiinflamatories and take tramadol.

Your DH needs stronger painkillers, he also needs rest.

[gengis]

I started enbrel last November and after the first injection I was significantly better. They have changed my life! I am registered disabled but still work part time and apart from the odd "flare" I'm managing ok. Really hope he gets the biologics soon I know how awful it is.

[isleangel]

Thanks everyone for the information. I have been on to several helplines this morning about disability rights and benefits, which has been quite helpful. still scary, but we are better knowing.

Also knowing about the biologics has been great because there might be light at the end of the tunnel, and means we might be able to keep his job open for the longer term.

[2plus2]

Hi look on here www.nras.org.uk/ I ask questions on there all the time. They will help you with employment issues and medication.
I have tried mtx, sulphasalazine, ant TNF enberel, leflunamide. Im still waiting for one that works! Good luck to you and your husband.

[isleangel]

Hi 2plus2

Thanks for the link - especially good information about employment issues.
Thanks too for the TNF information. It must be horrible waiting to find the right drug - we are already worried this far in and I do know that the nurse last week, did say that it might take time to find the right TNF drug for DH, but we are just praying for the first one, as if it takes any longer it looks like we might end up in serious financial difficulties, and right now that is having a major impact on DH, as the stress of it all is making his psa worse.

[ageofgrandillusion]

Hello OP
Not sure I can help but I too suffer from PA. diagnosed 4 years ago.
It took 2 years to find the right drug and I took various anti inflammatories in the meantime to try keep things at bay. It was a v v difficult time - constant pain, limping etc
Eventually sulphasalazine worked but only after my PA consultant had put me on a dose of 6 tablets a day. It has had me symptom free for 18 months and has no side affects.
The positives as far as your partner are concerned are, firstly, that they WILL find a drug that works for him eventually. I was lucky in that the hospital I go to - chapel allerton, leeds - is a globally leading research centre into arthritis. I've spoke to a few of the researchers there - I took part in some studies when first diagnosed - and apparently there have been massive steps in terms of developing treatments for arthritis generally - maybe even a complete cure - in the past 15 years.
Other advice - when first diagnosed, swimming helped me a hell of a lot. The cold water eases the joints so I used to go to the local pool early morning to set me up for the day.
Also, I think there is a specific PA website but forget the name and can't find it now I look. Best of luck to your partner anyway.

[isleangel]

Thanks for your message ageofgrandillusion. He does go swimming sometimes, but now that money is tighter, he will probably stop again. The steriod injections have kicked in again, so he is attempting going back to work today.

He has been on sulphasalazine, but it has only made him naseous. It's like living with a pregnant woman when he is on it! We are going to see the consultant in a couple of weeks so hopefully we will get more information, even if its only how we can manage until he gets the biologic injections.