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Rank: Advanced Member
Groups: Registered
Joined: 4/4/2012
Posts: 30
Location: West Yorkshire
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Hi everyone, I'm really struggling today and feeling particulary fed up and down. I had my 3rd injection of Humira on Weds and was really hoping I might start to feel some benefit, however I have had a terrible headache since Thursday afternoon, and have woken up this morning in excrutiating pain in my wrists and knee..... I have also noticed a lump in my wrist on the palm side which is particulary painful to touch. This also happened when I had my previous injection however when I went to see the rheumy nurse on Thurs it had gone down so she thought it had nothing to do with the Humira. I am now not so sure and am wondering whether it is a side effect. I am sick of being in pain and feeling tired, worthless & useless. On top of all this pain, I have a boss who is far from sympathetic and insisting meeting with me in a coffee shop to discuss a phased return to work. I have tried to tell him that I am nowhere near ready to contemplate work at the moment and can barely get out of bed but he is adamant that he needs to get things moving or HR will be getting involved. I just cant cope with all this on top of coping with RA......When will it all end Sorry for the rant but sometimes its better to let it out than keep it in. D x 
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Donna,
Hang on in there! It took 8 injections for me before I began to feel any benefit with humira and in fact after the 6th injection I had a huge flare, which my rheumy nurse said is not unusual when starting a new drug. Once it kicked in things soon began to settle down, not perfect obviously but I am far better than I was before the humira.
So, give it time, you will get there. Could you ask for a depo steroid injection to tide you over until the humira takes effect? I always find these very beneficial.
Good luck, and don't worry about ranting, it does help!
Love Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Donna,
Humira took some time to work for me as well.
there is a Thread under the drug section called Suzanne started Humira in August .. look through that and you should see my progress.
but once it started working i felt a whole heap better after not being under control for about 18 months.
i can't help with the lump on the wrist though. i do get a very painful left wrist if i turn the tap wrong or cleaning ( i am left handed ) but generally i cope well now.
hope to hear of some improvement for you soon.
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Hello Donna
Hope that last two post bring some hope for you. It really is a waiting game with RA, I always say that we have to be the patient patient with it all. Doesn't help with your boss breathing down your neck. I'm sure that I've read somewhere that if you are off sick, they cannot contact you asking about when you will be back at work, sure the NRAS helpline might beable to help here.
The lump on your wrist........I think with it happening again it is too much of a coincidence, I'd ask again about it.
Just want to say that it will start to feel better, just hang on in there.
Sending a hug your way.
Paula x
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Donna
Sorry that you are feeling so dreadful just at the mo, I don t think there is much I can add to the advice given by the other ladies. Your employer hasn t the slightly idea how much you are suffering at the moment, there is no way you should be put in such a situation at the moment, all the stress doean t help either.
Hope things get better for you very soon, Julia xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Donna
This is the best place to have a rant as we all understand how you are feeling and have had "rants" of our own. As you say it is best to let it all out.
Firstly I do agree with everyone that it is early days with the Humira. I am on Simponi and I have just had my fourth injection and this week I have started to feel a little better. A month ago I was desperate and posted on here that I thought it would never work and was about to give up, but my fellow sufferers persuaded me to carry on and here I am seeing a little light at the end of the tunnel.
As for work grrrrrrrrrrr.......... that makes my blood boil. Your boss should not be putting you in this position. He is harassing you. He should have written to you and requested a formal meeting and given you the right to be accompanied. You should not be meeting him without a witness. He should not be trying to force you back to work. He is trying to get around you by the back door and maybe doesn't want to give HR chance to start formal proceedings but out of your own interest, this is not a good way to go about it when you are obviously still ill.
I personally, would either contact your Union if you have one, or let HR get involved. There are strict guidelines which they have to follow. Your GP I presume is giving you a Fit to Work certificate (which has replaced the sick note) whilst you are off. If he says you are not fit to work then they do not have a leg to stand on. If your GP says you are fit for a phased return to work, then you need to meet with HR to get this formally documented on how this will happen. It should be long and slow. Whatever happens, don't let your boss continue to bully you and keep a record of everything that happens and make sure you have a witness to what is said at meetings.
I hope you get something sorted, as other people have said, stress is not going to help your RA.
Take care
Jackie
xx
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Dear Donna. I can't offer any advice about the Humira, except that I have a friend in the USA with severe RA who has done really well on it. She managed to do her own hair for the first time in a whole year recently. It took her a few months to feel the benefit. As far as the lump on the wrist goes, SNAP! I have exactly the same thing in the same place. Read my post and the replies in 'discussions about RA only'. It was quite recent so should be easy to find. As for your boss, I think he is out of order and behaving illegally. Personally I would join a union. My union have been absolutely brilliant. They even have a specialist in disability matters. Also I agree that a call to the NRAS helpline and the booklet on working with RA might provide useful information and support. I'm not surprised you are feeling up and down with all that is going on. I would too! In fact I felt really down a few months ago but am much better now. RA really pushes us to the limit sometimes, but you will get through this. X
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Rank: Member
Groups: Registered
Joined: 4/21/2012
Posts: 23
Location: Nottingham
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Hi Donna,
Sorry to hear you are struggling with the new medication. I cannot advise on this as I am newly diagnosed and have been placed on methotrexate.
I too am struggling with work. I agreed to a phased return and am doing 9.25 hours but they are piling on loads of extra meetings and marking to do at home taking my hours drastically higher - this has made my symptoms worse... the reason I point this out is that I saw my Consultant today and told her what was happening (my line manager has Osteo arthritis so uses this against me, saying pain goes with all arthritis - get over it, learn to live with it etc) . She has agreed that this is bullying and she is prepared to write to them on my behalf, maybe your Rheumatologist could do the same for you. She also told me of a good booklet "advice for employers" available from NRAS - which explains our rights... your boss does not have a leg to stand on.
Hope this helps, even if only a little.
Tina
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Rank: Advanced Member
Groups: Registered
Joined: 4/4/2012
Posts: 30
Location: West Yorkshire
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Hi Guys,
thank you all for your kind words of encouragment and support. I have not been on for a while due to still being in turmoil and a recent fall down the steps which left my right writs in agony so bed bound for me for a while.
In response to all your advice regarding work, My boss wants to meet me tomorrow so I emailed my untion rep for advice and this is what he sent me. Its a bit lenghty to be prepared but It looks to me like ive option other than to go back to work whether I am well or not. - Here goes
The two next possible courses of action for HMRC regarding your absence are to:
1. Give you more time to get better and plan another meeting between yourself and your manager.
or
2. Invite you to attend a meeting with a decision maker who can recommend further time, a referral for ill-health retirement or dismissal.
I am pretty sure that Mark will not refer you to a decision maker yet but in the guidance it states that the manager should be considering this option after 3 months and your absence has been longer than three months. It also states that "HMRC does not generally expect anyone to be absent for more that a year".
I don't think you need legal advice at this point or need to refer to the citizens advice bureau as your concerns are purely about your current job and your employers attendance management policy.
At the moment we want to make sure you keep your job and we need to appeal to your manager to say that you need more time to get better but that hopefully you will be able to return to work on a phased return soon.
Legal questions are not relevant for now as 1. We want to focus on keeping your job and not employment tribunal and 2. We currently do not have a case to take to Employment Tribunal because no adverse decision has been taken against you.
You can of course seek legal advice yourself or talk to the citizen's advice bureau but I personally do not think it would help and your main focus should be doing what you are doing now which is to get better.
I understand you are trying to do your best to get back to full health.
I hope that you will be able to get back to full health soon without there being an issue with work.
Unfortunately however I would not be being honest with you if I did not say that there may come a time if you do not return to work soon where your manager may recommend you are invited to a meeting with a decision maker.
If that happens or we suspect that is about to happen my advice to you will be to try and go back to work on a phased return.
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Rank: Advanced Member
Groups: Registered
Joined: 4/4/2012
Posts: 30
Location: West Yorkshire
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Forgot this bit from the bottom of my previous post!!
This is because although your consultant is saying you are not fit for work unfortunately HMRC will still be able to dismiss you and it will be legal because one of the legal ways an employer can sack an employee is 'Capability' and it would be extremely difficult to argue your dismissal was unfair at employment tribunal as you have been on sick leave for a long time.
I do think though that Mark will not recommend a meeting a decision maker yet and he will continue to monitor your progress.
I do not want to scare you with the above comments and advice but I feel I have to be honest about the situation and give you the best advice possible.
Please let me know if you are able to postpone the meeting and of any developments at all.
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Donna Legalities aside I would have been very disturbed to receive a communication such as this when you are currently absent from work due to illness. There seem to be a lot of so called 'managers' around these days who neither possess adequate skills to 'manage' nor do they have the first idea about handling people. This is clearly harassment. You are absent from work because you are too unwell to attend and do the job to an acceptable standard. This sort of patronising rubbish is unnecessary and I imagine is outside the legal guidelines. Letters should be coming to you from HR and they should be following set protocol. You should not be hounded. Your medic has decided that you are not currently fit for work, end of story. In the future you will either be better and return or you will have to consider ill health retirement. For now you are following a doctor's recommendation and treatment and awaiting the outcome of such. It's not a difficult concept for these people to understand, surely? "I understand you are trying to do your best to get back to full health", what is that about?! You can't do your best ... there's nothing physical you can actually do to make you better!! You have an auto-immune disease for goodness sake! I would suggest that in all communication with your employer you use the term "Rheumatoid or Rheumatoid Disease"; using the word arthritis summons up all sorts of delusions in the minds of those who don't have the facts. It might be worth a call to the NRAS Helpline for guidance on your legal position and perhaps they could put you in touch with someone familiar with employment law. They may know of a volunteer who is a specialist in this area, I'm sure it would be worth asking. Hope things improve for you soon and you are able to return to your job before things escalate unnecessarily. All the best, Lyn x
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Dear Donna
I am so sorry to hear you are having such awful problems. As Lyn says "There seem to be a lot of so called 'managers' around these days who neither possess adequate skills to 'manage' nor do they have the first idea about handling people. This is clearly harassment" Praying for some good sound support for you through this ordeal.
Lyn - you seem to have forgotten that you are no longer permitted to mention names in connection with help. I was ticked off for trying to put someone else in touch with one of our disability law expert volunteers.
Take care Donna
Love Jean
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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jeanb wrote:
Lyn - you seem to have forgotten that you are no longer permitted to mention names in connection with help. I was ticked off for trying to put someone else in touch with one of our disability law expert volunteers.
Oops, really? I'd better put it right then! Not sure I ever knew that  Thanks for pointing it out Jean. Hope thinks are picking up a bit with you  Will have to catch up one of these days! Lyn x
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Rank: Advanced Member
Groups: Registered
Joined: 10/13/2011
Posts: 62
Location: Cirencester
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Are you sure this reply came from a union rep? Your union are supposed to be on your side!
I thought you couldn't be sacked if you were signed off by a doctor. Either way your boss cannot meet you in a coffee shop - you need to be invited (by HR) to a properly organised meeting with your manager & a member of HR staff & given the opportunity to bring along a union rep (or other independent 3rd party)
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Rank: Advanced Member
Groups: Registered
Joined: 4/4/2012
Posts: 30
Location: West Yorkshire
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I really do appreciate all your advice, you have all been extremely helpful. I have contacted the NRAS helpine as reccomended (thanks Lyn), and they have given me some useful links, however my boss has text me again today and I felt so pressured that I have had to agree to meet him tomorrow. I will let you all know how I get on. I know I won't sleep a wink tonight with worry as to what he has up his sleeve next. I can only hope and pray that once he sees the state im in he will have a serious think about his next step. I know its not all him and kind of feel sorry for him as he will be under enourmous pressure from higher management. I feel sick to the stomach and know this is making me  worse. I might just throw in the towel and tell them where to stick their job... Thanks again guys..
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Rank: Advanced Member
Groups: Registered
Joined: 4/4/2012
Posts: 30
Location: West Yorkshire
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P.S
That was definatley my union reps advice....l
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Rank: Advanced Member
Groups: Registered
Joined: 10/13/2011
Posts: 62
Location: Cirencester
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As he is not following correct procedure, I would definitely take a witness with you tomorrow
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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hi Donna
Hope all goes well today -will be thinking about you.
Love Jean xx
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Rank: Advanced Member
Groups: Registered
Joined: 4/4/2012
Posts: 30
Location: West Yorkshire
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Hello again Just a quick update to let you all know how my meeting went on Thurs, with my boss. He basically told me that if i didn't return to work by the end of next month, then they would be seeking to dismiss me.... Apparantley this comes under the "capability" law. I was under so much pressure that I provisionally agreed to a phased return commencing the 1st August, whilst he tried to get me to sign a document to reflect this I declined and told him that I was unable to committ 100% due to the unpredictablity of my disease and my current medication. I really do hope that Humira starts to take effect by then, but have to say I am not very optomistic. My knee is still swollen along with my wrists, jaw, neck. I really don't know what I am going to do. All this is stress is making everything worse including my depression. On a happier note at least the sun has been shining this afternoon instead of all that terrible rain.  Donna x
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