Views on new medication

I've been laid off work now after 7yrs as a carer and nvq assesser as my SLE and other things have taken a turn for the worst and mainly affecting hands and feet (ulcers etc) anyway decided time is on my side now and can afford to be ill if new drug doesn't work lol and was wondering if I've made the right choice to try Rutuximab, trying to be positive but feel like I've nothing to loose now as its affecting my life big style struggling to walk is the final push to go for it but scared of it reacting bad, any info would be great. Thank u

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  • Hi,

    Im a primary teacher and I think on my last legs of being let go . I have been off 9 months now with more than one problems but finally diagnosed with Hughes and being tested for other stuff. But its hard to know whether I can cope as a teacher with the recent medical issues. It is worrying but nothing I can do about it. Are you working right now or have you had to change career?

    i would be very interested to know your story.

    T C Andrea x

  • Hi, after nearly a yr working less hours as an activities assistant which was temp I am not working at all now, officially got laid off this week. I did try to work as an nvq assessor but was not enough hours to do full time and draining on my care role,and the company also could not offer anything else, so it was a choice to return to my contract role as a carer (12hr shifts) which was killing me! or leave on the grounds of I'll health which took 6 months to sort through the policy, i chose this way so that I can get help with benefits and keep my options open for a job in future. I have also got qualifications in alternative therapies which I am thinking of using but haven't due to been ill but teaching/training is my dream in this field and I'm half way there through what I gained working in health and social care. It's difficult to look after ur health and earn a living!! Finding a balance is key, but health comes first. I found reducing hours first helped then taking time out to think about what I really would like to do. we need money to survive but we need to be happy. It's been a sad journey and difficult making crazy decisions but I'm much better off for the choices I've made and now I know all my rights in the work and benefits side of things!! Also I'm less stressed out than before, I think you will be able to handle ur teaching if u can balance everything and have support I managed to jobs for a couple of years but you need to think long term and way up the pros and cons. Tc x

  • Hi, personally I would say give rituximab a go, when your life is being severely affected what have you got to loose. I had a really good response to rituximab which lasted for 2 to 3 years,and got me from no4 being able to work to back to work. My consultant described it as being a gentler treatment than cyclophosphamide, being more targetted against a particular type of cell. I certainly found it easier go7ng than cyclo, maybe a bit tired the day after, but there are no real nasty side affects. The infusion itself I found to be fine, you can react during the infusion (allergy type reaction) but you re closely monitered especially during the first infusion. It was really helpfull in my experience, the problem I had was after the 2 or 3 years, it stopped being effective, as I understand it because you body can build antibodies that stop it working eventually, but I would not change having had a good few years thanks to the treatment. Best wishes, and good luck xx

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