Anyone able to give some advice?

Hi

When I was first diagnosed I used to avidly read this site and found it so useful and hope that someone might be able to help me know?

After so many attempts at various drugs I am at a loss as to what will be suggested next, I take hydrochloriquine and that hasn't upset me too much but once another DMARD is added then everything goes wild. I have tried methotrexate, Sulphasalazine, mycrophenolate and Leflunomide and each time due to adverse reactions I have to stop, wait for months before starting again. It has come to the point with no improvement in my condition I feel I am no longer able to continue working. My work have asked me to go to see the OH for an assessment with a view to be able to retire due to ill health. I know very little about this and wondered if anyone had any advice?

Thank you x

15 Replies

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  • I would think the next step is to discuss antitnfs (biologics) with your rheumatologist. If you have tried that many DMARDs and can't tolerate them, and your condition isn't improving, then you may find you are eligible for antitnfs.

  • Yeah, if you fit the criteria, biologics would presumably be the logical next step. It's fitting the criteria that is the main hurdle, though having being unable to tolerate 3 DMARDs you would seem to tick one of the boxes.

    It seems a bit of a shame to give up work when a change of treatment - if that's possible - might turn things around for you. I think keeping people able to function (and being able to work is an important function) is a big part of most rheumys' agenda. I guess the main thing is what you want, perhaps you fancy retiring early. But does your rheumy know about the problems you're having at work?

    I can't help with the assessment process you mention but I can see that you need to know as much about it as possible. Hope someone who has been through a similar process will be along soon. And you could contact Citizens Advice - they do have a website with lots of useful info. too.

  • I agree biologics would be the next step. I take Hydroxychloroquine, methotrexate and was started on enbrel when they couldn't push my last flare up into remission. Starting the Enbrel was a revelation for me, I felt a difference after the first injection and after the second one knew that it would work for me. They told me that if it worked that I would get my life back and they were right so please do ask about them. You can find out about them from this site, NRAS and loads of other sites. Good luck and I hope you feel better very soon.

  • Thank you, I have my next appointment in early April so fingers crossed I might have a better idea about any further plans.

  • I know some of the people who come here have had great experiences with Occ health, likeAllanah & Ali_H, some hopefully they'll pop by and tell you useful stuff. I haven't used them so can't offer any thoughts. But I did end up leaving work after being diagnosed as it was all too difficult. And I was very worried about it as I loved my job and worried about how I'd manage financially. However, it's turned out to be the best decision I made. I now have time to spend on looking after myself, and doing things more cheaply as well so financial hit hasn't been as bad as I thought. In consequence I'm happier and healthier and have got the RA under control which I'm not sure I'dever have achieved if I carried on working.

    So if this is the direction OH suggest you go in, then it's not necessarily all bad news. Good luck.

  • Hi, I think this is my preferred option at the moment but I have been signed off for the next few weeks so will reassess once I have had a break. Working is exhausting and I d feel that in order to have the energy and headspace to work everything else is suffering. So to hear you are managing is encouraging 😄

  • Hi. It's not that easy to get ill health retirement in some places of work.

    When I applied I was told to collect evidence of all the things that my employer had done to enable me to stay in work first. (So that retirement is agreed when all else fails).

    In my case I asked for "reasonable adjustments" to be made so I could continue. I had my hours reduced, my place of work changed, and special equipment provided to enable me to continue.

    This gave me time to see if changes in meds meant I could continue. It took a couple of years, then when I filled in my formal application for retirement, it went through straight away, and my pension was enhanced.

    (Hope this makes some sense, I am suffering post MTX fatigue!)

    If you are in, or can join, a Trade Union, that will be a great help as their advisers know how the system works.

    Keep a record of everything, every meeting with OH, etc.

    There are lots of places online to help you too.

  • Thank you your response is very helpful, I will contact my union and see what the say.

  • Just found this on first search. The Money Advice Service.

    moneyadviceservice.org.uk/e...

  • Thank you this is very helpful

  • Hello

    It would be a shame if you lost your position at work. When DMARD are mixed and matched, this is done on the hope that Biologics will be offered at some time. Sad to say the DMARD medications can cause some nasty contraindications and they will not offer the Biologic until your problem settles.

    Sometimes they will put you on -TNF medications with MTX in its own right, Possibly they are trying to see if the DMARDS will work in their own right as the Biologics are very expensive.

    All you can do is wait and if contraindications are severe let your RA Nurse know how you are feeling under those medications. She will advise you and the Specialist on the outcomes of these drugs.

    With regards the OT, have words with your GP and they will make an appointment. Generally they will look at your home and advise and sometimes give equipment to make life easier in your home, I am not positive if they will go into your Office and help there. One way around that is contact the Job shop and they have an OT in their Office who can arrange changes in your work environment. with the agreement of your employer.

    What you can also do is just sit and look around your work environment and think of ways that will help you help yourself. This could help when the OT looks at your Work Station

    With regard retirement on health grounds, you will be put in front of a Health Board set up with the companies Doctor, your Supervisor, the Union, although generally you may not be invited to attend. The welfare Officer from the Company may also be in attendance. They may then offer an alternate position in the company. The Company may then be agreeable for an OT on your behalf look at ways of making your work easier to perform.

    You need to remember the Company may ask for reports from your GP to be sent to their Staff Doctor.

    The Disability Leglestation is complicated so you will need a representative at these Boards, generally the Union Rep, OT, will be looking at ways to keep you with that employer, The Job shop may be able to discuss or report on your work position. Also offer aids to keep you in work

    BOB

  • Thank you so much for your thoughtful reply, I just find all of this quite overwhelming at the moment.

  • You must start biologics. Unfortunately the NHS make you go through hell whilst you prove the other drgus don't help you. I am sure there will be a biologic to help you.

    Don't wait for your next appointment with your Consultant, if you feel so bad, ring now and ask for appointment. You should not be in pain.

    Muffin.

  • I have been on anti tnf and now experiencing pain with it. I managed to work solidly with the anti tnf in combination with methotrexate but now had to be signed off sick.

    I am also considering ill health but all too difficult to think about whilst in pain. Hang in there though.

    I found the nice guidelines useful to read up on as when u see the consultant you can try and work the pathway recommended with him

    Access to anti tnf has some set steps and so long as you qualify it is the logical next step.

    It is best to be off work until you settle on a therapy at least . I am going to ask my consultant to support my case and then take it from there

  • Dear Verena,

    Further to the replies above, do have a look at our Biologics booklet, which you can request online or over the phone (http://www.nras.org.uk/publications/biologics-the-story-so-far). We also have lots of information on working with RA, disability laws etc both for employees and employers. nras.org.uk/work

    Alternatively, do give our Helpline team a ring on 0800 298 7650, they have a wealth of information on both of these topics.

    With kind regards

    Emma - NRAS

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