Another effort at making sense of this new (for me) experience....
I've been on hydroxy since diagnosis 4-5 months ago, and 20mg prednisilone for about 6 weeks.
There's been no improvement yet - in fact, things have got worse, and I have been off work for months. Last week i was reviewed and started on mycophenolate - which I am told will take 3-4 months to kick in.
Having given up one of my part-time jobs, my other employer is about to reduce my sick pay to 1/2 pay, so i will be living on an income that is 25% what it was a year ago. By the time the mycophenolate is working, I will be on the verge on going to zero sick pay i.e. no income whatsoever!
My question is this: is it realistic to imagine i might return to work?If so, when? Or should I cut my losses now and negotiate early retirement?
Written by
whisperit
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I can't comment on your illness, not my field - but if you can negotiate early retirement on health grounds then do so. If things improve then you may manage to work again. If they don't - you have a safety net.
My husband couldn't face carrying on in the NHS (all the joy had gone) and every couple of months he did a spread-sheet of our finances. Eventually he decided it showed we could survive until we got first my state pension and then his a couple of years later. I have a tiny private pension which we took as soon as we could. We have never regretted the decision. Our income is far smaller - but our quality of life is so much better. There are some costs that just don't exist when you don't work (no commuting and clothes last far longer!) and you have time to concentrate on yourself, to cook and do enjoyable things that aren't expensive that you didn't/couldn't do while working. We downsized in a different way - we part-exchanged our house for a smaller one and cash balance. The smaller house is now let which gives a far better income than the money in the bank and it is there if we have to return to the UK. It wasn't what we would have chosen but it has worked out well for us. If we have to go back to the UK we'll have the flat her to sell. All good.
Don't rule out retirement - it isn't giving in and makes a lot of difference to your health if you find other pastimes.
How do you negotiate early retirement? I have just been told by dwp I am fit for work a decision I am appealing as I have severe lupus with kidney damage and I am on immunosuppressant drugs and steroids, now got osteoporosis thanks to ,,14 years on steroids, I am 56 could I negotiate early retirement , I do not have a private pension , what happens if you are retired on health reasons x
Honestly don't know. DWP say you are fit for work (what would they know?) - but what sort of work and what do you do? (Not asking, just saying). For example, within the NHS there is a world of difference between being a nurse on a ward and being the receptionist in a clinic.
When you say you don't have a private pension - do you mean there isn't a company pension that you would get at retirement under normal conditions? What usually would happen would be you would get your retirement pension immediately without any or much curtailment for going early. For example, in the past at least, in the NHS you could retire after the age of 55 if your normal retirement would be 60 but you would lose 5% of your pension for every year you went early. I know the hoops there are worse now but no idea what the current state of affairs is.
A good place to start might be your union rep if you have one (if you haven't, it may well be worth joining one). Or maybe your Occupational Health department or HR.
I am not working,i have been on esa for 4years , dwp have said I'm fit for work , I have to sign on every two weeks and prove I have applied for jobs , I was getting £125 a week esa , they just stopped that and now I have to claim job seekers allowance £71 per week , with my health problems and my age 56 I will not get a job it's a joke x
If you are on Mycophenolate don't work , although the dwp have just cancelled my benefits and told me to find work .,I am appealing, when on Mycophenolate you are at very high risk of infection because your immune system is suppressed I got seriously ill working just by catching colds when the rest of the staff had them .I got meningitis whilst in my last job I nearly died
that's really helpful - especially as I work with children. I will be meeting with my HR dept in a few weeks to talk over the options, but atm I am definitely thinking early retirement is the way to go
Let me know , I don't know about early retirement or how to go about it I am 56 and was wondering if it could be an option for me especially as dwp have stopped my benefits and told me I am fit for work , absolute joke , I don't have any private pension though x
Are you part of any kind of occupational pension shceme, like the NHS or local government? I'm part of the NHS pension scheme. As I understand it, there are 2 basic options in the scheme:
1. Early retirement due to my ill health making me unfit for my current post - I would get whatever my current contributions have earned me.
2. Early retirement due to my ill health being so bad that I couldn't work in any job - I would get my current entitlement plus "credit" for 2/3rds of whatever I would have contributed had I stayed in the scheme to my normal retirement age.
In my case, it won't make a lot of difference (it wont be a lot of money either way!) but obviously, I'll need to submit medical opinions to back up my claim.
I'll certainly let you know if I learn more in due course x
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I'll health retirement
Recovery 
I’ll health retirement 
Ill health retirement 
Mycophenolate begone!
