So I've been off work for 19 weeks so far. My latest rheumatology appointment confirmed that I have active disease still. My next treatment is going to be tocilizumab although I have no start date for this. My local hospital has no delivery company for the injection & the regional centre that have advised me to have this need my local hospital to pay for the infusion. So I'm stuck with active disease till they sought it out!
I'm worried about loosing my job due to sickness. The company I work for is going through a restructure & as I'm off work I have no idea what is going on.
Any advice welcome on:
What my rights are?
If they can dismiss me while I'm on sick?
How long people have found tocilizumab starts to work?
If anyone has found a difference in the infusion & injection?
Thanks
Rachel
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Rachel43
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Hi Rachel, I am Bas from The Netherlands. I don.t know about the rights in England. I will start with Tocilizumab thursday the 16th of april. I wish you all THE best. I was looking for experiences from people who use Tocilizumab.
HI Bas i am from Scotland and been on Tocilizumab for over 2 years.I have been on lots of drugs of over the years like most people before they get to this drug for me it is the most effective one i have had.I still have problems but a lot due damage already done i get it every month bye infusion but are now starting injections that you can do at home but there are many people on this site better at explaining it better than me so i hope you do well and hear from more people on Tocilizumab good luck
Hi Beeckey, thanks for your reply. Good to hear positive reactions! I have also been on à lot of drugs. And have had à lot of surgery, my wrists and fingers, and foot. I hope tozi will stop further damage.
I wish you all the best in beautifull Scotland. In april 2014 my wife and me stayed 5 days in Edinburgh. We also went to the Highlands. We loved it.
Hello Rachel. Sorry you are having such a rough time. Are you in a union? Is so I would speak to them for advice on your job. If not ACAS can advise you. I believe you will find you are covered by the Disability discrimination law. I was in a similar situation in 2011 with my employers having been off sick for months. Then I was started on Enbrel injections and they worked well enough for me to return to work. Here's hoping they find a drug that works for you and you are able to return to work. Delia. X
I have been on infusions since June and they lower my inflammation within two months. The only side effect I had was bad headache afterwards, but this does not happen if I drink lots of water/green tea before and during the infusion. I only work part time now and I am still struggling because of the pain from my joints where they have been damaged. I hope that this drug works well for you and that you do not have much damaged joints, it took eight years for me to find something that worked.
My RA journey has been a long hard 12 years. Unfortunately I'm a oddity as my blood results are all normal. Put any part under ultrasound & I light up like a Christmas tree! I've had all the many usual treatments & now only have 2 options left tocilizumab & one other (starting with ab??).
I struggle to decide if it's damage pain or actually flare up pain I'm having. My latest appointment confirms its both.
I love my job & don't want to lose it. I tried to stay in work till I liter went to work then home to bed. I'm a single parent with 2 kids & I would hate to lose everything because of this disease.
Hi Rachel. I have been on tox for nearly 3 years. It has helped a lot. I am on infusions at the moe but i am due to start home injections the end of May. I cant believe that some people have to wait for a decision on weather or not they can have treatment due to cost. I am so lucky living in the west midlands my rhumy nurse just puts me on things. When i start injections i shall be given 6 months supply at a time while i am in clinic. Hope you sort things out good luck with everything xx Alison
Hi Rachel, RA is a registered disability so your employer has to work toward accommodating this. When I was diagnosed I was off work for 3 and a half months but have now returned part time with a view to returning full time. I don't think they can sack you whilst you are off sick. Ask to see an occupational health worker. Good luck. Lynn
HI Rachel: I don't know what the rights are in England But you can try talking to the Union is your company has one. Ask what your rights are as an American with Disabilities. The American Disabilities Act protects anyone with any type of disability who wants to work. An employer can not just fire you. If they do then they then you have the right to file a law suite. After talking to the Union, if you have one go to your benefits specialist and ask if your employer has a paid disability plan on its employees most companies do , and it's usually free to the employee ( paid for by the company). If so you can use this plan in the event you are off from work for more than 60-90 days and it will pay you a percentage of you wages ,most allow you 12-18 months of disability pay. And last ask the benefits specialist if your company has something called the Family Medical Leave Act. This will allow you to take any sick time, comp time or use overtime that you have earned. You can convert this time into pay while you are recovering from illness. This FMLA also protects your job and they can not fire you. I hope I have been of some help to you. I have been fighting RA since 2002 and over the past year they told me I now have issues with my bone marrow. Good luck my friend.
Thanks for the advice everyone. I'm not in a union but our company has an employee assistance line which I will phone tomorrow.
This is the longest time I've had off work in the 7 years I've worked for them. Hopefully I can get sorted soon & back to work
Hi Rachel,
you are protected under the 2010 Equality Act which covers you from discrimination at work. I have put a link to our publication on work for you which has information about this:
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Having a bad day :-(
Abatacept 
Keeping my job
