Working with RA- newly diagnosed and 8 weeks on methotrexate

I have a dilemma- I need to make a decision regarding my mortgage term and my retirement (as I'll be paying some of it off with my lump sum). I need to work 3 more years to get my full pension, but I initially decided to retire in two years. Looking at my last pension forecasts this means I'll lose quite a bit of money. I know money isn't everything, but I'm finding it very difficult to predict how well Im going to be so early on in my treatment.

Can people let me know how long they continued to work once they were stabilised on medication and whether this was full time please, as Im tying myself in knots trying to decide what to do? 😱

22 Replies

oldestnewest
  • Hello Barb66 it is impossible to put a time on it. Everyone is different, personally I don't work as it is hard to find a job which fits my personal issues, I have a lot of problems with my hands so book keeping and hairdressing which I am qualified in are both out of the question. I hope you stabilise and stay flare free to continue to your retirement best wishes.

  • It depends how bad the disease has hit you, i never managed to return to work.

  • I was diagnosed three and a half years ago (I'm galloping towards 54!). I was terrible to start with, however once the drugs started to work felt much better. It took about 6 months though.

    During that time I have had two periods of remission (just enjoying the second one), and have been about 50/50 agony/remission.

    I have hardly taken any time off work, although looking back now wonder how I managed at times.

    I am a stubborn, independent girl - I won't let this dictate my life. I bought a dog and walk at least twice a day with her. I worry that if I ease up I won't be able to do as much as I do now.

    I have a large mortgage (~ £700 a month) so can't really afford to stop work yet. I have recently dropped one day a week at work - everything takes longer, and if I feel bad I don't do as much. I hope if I drop a day now it will enable me to go on working for longer. I recently split with my partner too - he did nothing around the house to help me, he treated me as the housekeeper (luckily it is my house so I really am the house keeper!) and just didn't 'get' RA and the effect it has on my life.

    I could take ill health retirement if I deteriorate, but I believe the longer I can continue working the better it will be for me physically, mentally and financially.

    I would miss working - apart from the social interactions I still enjoy it a lot. I know I can't go on like this forever, but it's right for me at the moment.

    It is still early days for you, nothing happens very fast with this wretched condition. I would advise you to hang on a while before making any permanent decisions. The longer you work the better it will be for you when you do retire - it's a balancing act. You might feel able to continue working once your RA is better controlled.

    Welcome to the wonderful world if RA - don't let it get the better if you, join us all fighting it. It is still early days, it will hopefully settle down and give you a manageable balance. There will be good days as well as bad.

  • Thank you Jem95 I was up most of the night thinking about this and agree, I'm going to go for the full term. Looking at the paperwork, I won't lose that much if I decide to go earlier and aid like to think aim not finished working yet!

  • I am giving in and stopping work this month on the 23rd. I have worked with the same company for 17 years. I am 9 years off retirement but I just can't cope any more. I worked ten years with this condition. Five full time and the last part time. I suppose it also comes down to the type of job you do. I work as an Estate Agent do while office based also have to go to appointments where I need to drive. It's all finally got to much for me. I start my biological treatment this month so I am hoping if things improve I can go back and cover holidays but never work full time again. Hope this helps with your decision.

  • You have it right - it's impossible to predict how well you're going to be after only 8 weeks on MTX! So right now I wouldn't make any changes to your plans just because of the RA.

    I carried on working for a while after diagnosis but then took early retirement. I had a very busy, stressful job that didn't allow me to manage my RA properly. I could have held on for medical ill health retirement with full pension that goes with it but just wanted to stop. It was the best decision I made as my health improved dramatically, and went into remission. Yes far less money, but it was only after I stopped that I realised how expensive going to work is! My partner left his job early too (he has no pension at all) and we have altered our lives completely and now have a small business to make ends meet. So in some ways getting RA was a positive!

    So there are many variations of what you can & can't do. It is highly likely that your plans will change as a result of having RA, but you need to give it more time.

  • If you can possibly manage try to stay working as long as you can.....if the RA really plays up, does your job offer extended sick leave?

    I retired in 2001 & despite having 2 private pensions & the DSS Retirement pension inc a SERPS supplement - when I look at how much extra I would be getting if I'd worked another couple of years I could kick my self.

    Remember too .....lately annual pension increases have been minimal, but the cost of living hasn't! Plus the Govt are warning they may drop the automatic increase on the State retirement pension.....so 15 years on I'm in a much worse financial position & I can't see things getting better any time soon!

    Luckily I have no mortgage & would like to downsize my quite large house...I have eight rooms, a garden & garage to look after .....but I am finding new two bedroom houses without a garag are more expensive than my 10 year old house!p in this area!

    Hope I haven't depressed you too much....but having broken my wrist yesterday & sitting here working out what jumper I can wear that will fit over my plaster....I'm not in a very optimistic mood !

  • Hi no you've confirmed what I thought and hang on in there! As my Dad always says 'hope for the best but prepare for the worst'

    I have to make a decision re mortgage now to ensure Ive paid it off by my state retirement age so I'm going to hope for the best....

  • Wise man your Dad.

    I have just been reading that now is the time to get a good fixed mortgage rate as banks are starting to slowly stop offering them as interest rates are looking to be on the move up.

    The article also said S&S ISAs are giving a better return than cash Isas & for once I seem to be on the right side

    Let's hope your meds kick in & you feel well enough to work on to get your full pension,

  • You should just work as long as you feel able. Part time if necessary. Difficult to predict how things will be from one day to the next let alone year on year. I still work full time but have some flexibility and if I have time off ill and no holiday to cover it I just lose the pay. Much better than giving up completely.

  • I work full time. I've had RA for 21 years. Once the medication kicks in you might find you are able to keep working. Thankfully I can work full time as I'm at least 33 years off retirement lol.

  • My goodness I feel very self indulgent. I forget some people like yourself have RA at such a young age. That must be very difficult for you x

  • I'm lucky to be well controlled so mostly it's ok. 😊

  • Everyone is different, you are only just starting your RA journey. If you end up like me and the medication controls your RA well you could see little difference in your ability to work and enjoy an active life. It might take some time however to find a drug regime that works for you that doesn't have side effects you can't cope with.

    It is too early to make decisions, I hope that your RA gets controlled soon and you are able to continue working as long as you want. I have had RA for over 10 years being diagnosed in my late 40s and have generally been able to work well during that time. There were periods when the treatment needed tweaking that I struggled with the fatigue associated with RA. I hope you have good Rheumatology team supporting you as this makes a big difference.

    Summing up wait to see how your disease progresses and is controlled before you make any major decisions. If you have well controlled RA you can live a virtually normal active life.

  • Thank you Scottish lad that's so encouraging

  • It depends on what you do. I was lecturer/. Researcher and there was quite a lot of flexibility as to hours. I used to start around 8.30,seeing students and tried to arrange to go home for a rest around 2. Then I'd start again an hour later anddo preparation and writing and marking often into the evening. Retirement was a big relief only then three years ago dr withdraw Meds and I've been finding my feet ever since

  • I have a pretty accommodating employer (Nurse Consultant in NHS) and a good local manager with good sickness support, so Im going to go full term. Thank you for helping me make this decision x

  • Do they know about your RA? I found that being able to rest just a little between tasks helped a lot. You're also valuable to them having a senior nurse with your insights!

  • Hi, I was diagnosed as a child and had the disease 10 years before I started work My job was always office based, involving sitting and typing etc. I managed to stay in work for 22 years. It was only when I needed cervical decompression and fixation that I was forced to quit.

    With new biologic drugs available to patients nowadays, preventing joint destruction, most people should be able to stay in work longer than this.

  • I have had ra for five years. I could never imagine working at first. The game changer for me was getting on a biologic. It worked very well for me, particularly with the fatigue. I have been back to work full time for the past two years. I have a stressful job, but my work keeps me energized and my mind off the ra. I have never missed a day due to ra yet. Wishing you all the best in your decision making.

    Kathy

  • Thank you Kathy1465 - that's good to hear

  • Hi barb. I didn't have a choice as my marriage broke down a year after I was dx with Lupus/RA, I had to change jobs, so did a couple of college courses, and a part time job as a doctor's receptionist, I went to work full time in an insurance broker's. When the house was sold I had to buy another with the help of a mortgage as I had two sons to support. This was 31 years ago, I went on to work as a Senior Claims Adjuster till I had to retire age 60, would have worked longer if I could as my mortgage didn't finish till I was 67. All this in spite of erosive RA, with ops, had 6 more when I retired, so was for the best. Still feel proud of myself, not sure how I did though, the fatigue gets you, so about pacing yourself. I am sure you will make the right decision for you. Good luck X

You may also like...