Will I ever get a treatment that works

So diagnosed in September and put on triple therapy. Was very ill with side effects. Taken off sulfasalazine and hydroxy.. and oral methotrexate. Put on subcutaneous methotrexate but have developed a sore mouth and upset stomach again only at 10mg. Meanwhile absolutely nothing has made a difference to the RA. This is just getting worse and it is aggressive so after five months I am no further on than I was before I was diagnosed as I haven't been able to tolerate a drug long enough for it to work. Been on the subcutaneous methotrexate for 5 weeks but there wasn't a jot of difference and I deteriorated further. I have also developed a severe glandular infection and feel,just awful. Unfortunately this has coincided with me getting a new boss who has torn up the couple of special adjustments I had to keep me working and in effect is trying to make drive me out of my team

20 Replies

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  • Oh god poor you....that sounds awful..just horrible......in a word yes.....it will get better.....can they get you on a biologic asap? Enbrel worked very well for me for many years......

  • Oh dear. Your boss is an👿👿👿!

    The side effects are awful, I can empathise completely. Sulfasalazine was a living hell for me (worse than the illness!). I was diagnosed in May and still feel pretty rubbish (though better than I was). I'm on leflunomide now, and have had various illness.

    The stress you are experiencing at work is most likely making things worse for you. Can you see someone about that?

    I hope you will find a treatment that suits you soon, without the hideous side effects.

  • Hi I know its frustrating trying to sort out the right medications but dont give up. I was diagnosed in 2013 and still not under control yet but at least I can move around more than I could so its bearable at the moment. Unfortunately I had to give up work last year due to lack of understanding by my employer but it was like a massive relief to get rid of the stress it caused me. Get your union involved to support you.

    Good Luck

    Trish

  • Hi

    I can completely sympathise with you,as I started getting very aggressive symptoms at the start of 2014,was diagnosed in oct14,but went through several different treatments,and every single side effect that went with them until they finally put me on Enbrel at the start of this year. Within a month even the nurse noticed a marked difference in how well id reacted to the new treatment,and although things were getting better,it still took until roughly mid September before everything finally clicked into place enough for me to start thinking about my future for the first time in a long time!!

    I also went through hell because I got a new boss and he was,in the politest words I can think of,a complete a*se!! It got so bad that I had to be put on anti depressants because the job I once loved was now making me cry just at the thought of going in every day - I ended up turning to the disability law service for advice about the way I was being treated,and they were fantastic. On the back of their advice I got the director of HR involved,instead of dealing with the snotty nose graduate that was assigned to my case as it were,so the snidey comments by both my boss and the hr girl came to a complete stop instantly once they realised they were being scrutinised too. The HR boss also ensured that OH were involved every step of the way from there in,which was a complete relief as it finally felt that there were people on my side after fighting the company for so long - obv my direct manager wasn't happy that I'd gone above his head,but as I'd done everything by the book,all he could do was sulk about it😊 They had to make adjustments for me in order to make my working day more comfortable,and if it was something that was reasonable,there was just no way they could refuse - I wasn't asking for the earth,just a comfy chair,with an adjustable footstool(most of our company had these anyway) plus a specialised keyboard and mouse which made it much easier on my hands each day - I also wore the soft splints so that my thumb and wrists weren't completely swollen at the end of the day from typing or using a mouse. OH also insisted that I had an application installed on my machine(I can't remember the name now) but you could set it so that it shut your computer screen down at whatever interval you had set up,and this programme then gave you stretches to do whilst at your desk,or just ensured that you took the relevant breaks instead of being so busy that you ended up just working through,as I had for many years previously - it proved to be a godsend. I also had fortnightly catch up sessions with the HR director,the hR graduate and my line manager to ensure that if there were any issues on either side, everyone was made aware,rather than my boss just making rubbish up about my not completing tasks etc as he'd previously done and then just getting hr to mail me months later?! It's amazing,but the bigger the company,the worse the treatment - unless you play them at their game,which is what I did. I also got the law service to send a letter in on my behalf at one point(before HR director was involved) as I was unfit to drive the 60 miles each way due to the extreme fatigue making me pass out at the wheel,so my GP gave me an unfit to travel note,but fit to work from home,as I did on a couple of days a week already - this was when the line manager first started playing dirty by telling me I had to take the week off as unpaid leave,even though I found out a colleague of mine had been allowed to work from home the exact same week because apparently he'd dropped a stone on his toe so couldn't get the train in!! Obviously that was outright discrimination on their part,and as soon as I gave the HR director the letter she was gobsmacked. ,I just said that all I wanted was to be treated fairly,and was claiming my holiday back,without taking it further that time - the message soon reached my line manager that he'd been completely wrong,and I think he was actually sent on a course for that one.... a small but very important victory for me!!

    All in,it was hell to start as it was such an unknown,and they give you so many mood altering drugs along the way too that sometimes you don't know which way is up,but as long as you keep a diary,I did mine with pictures on my phone so I could prove how swollen I was, and you have a good enough relationship with your GP so he can fight your corner if you feel you're not getting anywhere with the consultants,then you should be fine - it'll be a bit of a rollercoaster ride for a while,unless you're one of the very lucky ones who gets the right treatment first off, but there is definite light at the end of the tunnel - the main thing is to make sure you get the work situation sorted so that's one less stress for you to worry about,and in turn,one less stress for your body to react to,then you can just concentrate on getting your health in order - be prepared to be made a pin cushion with the amount of blood tests they'll send you for,again,that's all perfectly normal,and just be prepared to constantly ask questions at your appointments - I always made a list before so I wouldn't forget,don't leave the room until you're happy that you've understood everything they've said to you - they may see it everyday,but this is you and your body,and that's all you need to worry about - no matter how small you think the question may be,ask,otherwise you'll end up fretting over something that may not need to be an issue.

    I hope I've been of some help,and that you get the correct medical help asap(wether it's private or not,again,it's your body,so you have to decide if it's right for you,not worry about what others think).

    Good luck,and keep us posted - there's always someone on hand to answer questions if you have any,and the NRAS website have some great PDF's to download - incl one for your employers.... I printed off a couple of copies and gave one to my line manager( who I knew wouldn't read it,)and also one to the HR director,who actually thanked me a week later and said she couldn't believe some of the things I'd been going through once she'd read it!!

    Take care of yourself

    Nicki x

  • Awesome answer Nikki and AWESOME results!! You are a great example of how to deal with this disease

  • Thanks CaerylUSA ,it took so much of everything I had to fight,but as my mother always says,I'm a stubborn cow when I want,and esp when I need to be,and it's that strength that I had to draw on - there was just no way I was willing to be pushed out of a job I loved purely because I no longer suited the new boss!! In the end they had to get rid of the whole team in the form of redundancy(I was offered other work,but would've been stupid to stay with the state my health was in) so I took the money and hobbled..... I didn't even have to work my 3month notice period😊 It especially makes me laugh that they've since advertised our teams jobs several times over in the 18 months we've been gone.... it must've cost them a small fortune,and our small team all walked away smiling too 😆 X

  • Karma is a b****, huh? Love the happy ending there....

  • It is so demoralising when things don't work, but don't give up. There are over 20 different treatments so one of them will be right for you. But you may have to be quite assertive to get them to treat you with some urgency. So really start pestering your rheumy team & GP, often they'll assume you're fine u less you really drive home that you're not. probably the last thing you want to do right now but worth it in the end. Good luck.

  • Before your work situation gets worse can you involve HR to put your moronic boss in his place?

    It's truly awful how these days many work colleagues are so unsupportive.

    Do hope you soon find a drug regime that suits you.

  • Im sorry you have these health problems and been treated the way you have at work. Hopefully now nothing else has worked they will offer you a bio therapy that will make a difference and things will improve for you. In the meantime stand tough at work, you are not in the wrong and however long the fight is you will win in the end. Blessings.

  • Hello Frankie, I can empathise, even though I'm a man, if you just start out your fight and nothing works it can turn into a downward spiral. Helix is right, it may cause you stress and pain, but from my own experience if you don't remind the overworked and stressed health professionals constantly, they can forget who and how you are. They probably get this from many patients. You must just shout the loudest. I hope you find a solution very soon. Keep us up to date please. I'll have my fingers crossed for you, even if it hurts.

  • I'm so sorry for what you are going through... I suspect they will talk to you about biologics next. Maybe there is an answer there for you.. Hugs and best of healing

  • For some people drugs simply do not work unless they the dose is increased and increased. I have posted elsewhere the advantages of using diet to help with recovery and would recommend you search the forum for such advice. Whether you take the advice or not, at least you will be informed of the options.

  • Try bathing your mouth in saline (warm salty water) a few times a day.

    Works for me re MTX.

  • Hi thanks for all your replies. My hospital team are great. They are being very reactive. I phoned on Wednesday and they were going to ask the consultant but it looks like they are going to have a review of my treatment and start again.

    Re work. My original line manager was great. We are a local authority and moved to hot decking. 6 desks to 16 people. This meant the council recommended all staff work from home at least two days a week. This worked well for me and my boss added a couple of special arrangements which were I started at 10:00am on my days in and all my meetings would be booked in for the days I was in so I didn't have to trail back and forth. So not much in the way of special treatment. At this point we lost a member of staff do I took in their work too as a temporary measure but even so I was still able to complete everything and was not behind. Mainly because I could take my painkillers and work from home. My boss realized that a 25 mile drive and working in an huge open plan office on hot desks was terrible from a pain point of view and immuno suppresent angle,

    My new boss was promoted from within our team. Think school snitch and it sums him up. He is enjoying throwing his weight around. I sent him the small adjustments agreed and the NRAS booklet. I copied HR in. He never replied. He has told me it is managers discretion about working from home and he has decided we will all be in the office every day. The two people's work I am doing currently has been made permanent and he has given me more on top plus 3 people to line manage. He has sent me three line whips to meetings he has arranged for one each day so I have to come in and has sent me a message to say he expects me in 9:00am every day.

    I am seeing OH on Monday. Last time they said everything is managers discretion including special adjustments. HR are more keen and if I don't get anywhere on Monday I shall talk to them again. My boss is line managed by the AD who dislikes me because I don't bow and scrape enough. Iv done nothing but worry all the time I've been off on leave :( I think it's effectively constructive dismissal

  • Your boss is so similar to how mine was that he could infact be the same person?!

    You're right in the fact that work can act on OH advice if they want,or just say it's advice if they're being nasty - before this gets any worse,please speak to either the disability law service,or someone similar so that they can put your mind at ease, instead of you fretting over his petty and nasty treatment of you - he's basically a bully and using his position in an unjust way - this definitely needs to be stopped,and quickly. The law service will do so much to put your mind at ease that I think you should do it as soon as you can,because as you say,it is effectively constructive dismissal - they'll think they've gotten around things by the way they've written certain words into workloads etc,but it's usually the petty ones like this that end up tripping themselves up because they're too busy being bullies to actually look at how they're legally obligated to help you adjust,and that can include reducing your workload,not increasing it!! It's getting me annoyed on your behalf as I know firsthand how down it leaves you feeling.

    Please keep me updated,and if I can help in any other way,then just message me directly if you want.

    Good luck,and stay strong - you'll be glad you did in the end xx

  • Methotrexate didn't help me very much but biologicals worked completely and very fast as well. So another vote or a biological as soon as possible. I am a bit surprised because I thought biologicals were now offered as first-line treatment for all confirmed RA cases, and not just for advanced or severe cases. They are believed to prevent the complications and disabilities arising from chronic, that is long-dtanding RA so are highly cost-effective for the NHS.

  • Hi here yup only get biologicals if absolutely nothing else works and you've had it for years. I think they are going to "rechallenge" the hydroxy and sulfasalazine:(

  • Thanks Nijk I have spoken to my equalities officer already and she says effectively they can ignore everything if they want.

    What is the disability law service? X

  • The disability law service was something I found by pure chance when I was so stressed through work that I spent hours and hours online looking to see if they could get away with their behaviour towards me. They're a legal team that specialise in disability law,are free, and as far as I know,especially the equalities act,which you should definitely be covered under. This is the number I have under my contacts,but I can't remember if it's the reception or a number from someone that rang me back - either way you've got nothing to lose.

    020 7791 9800

    I found them to be honest and to the point,and they give you advice so that you can figure things out on how to move forward yourself,in general,but at the point where I could barely string a sentence together because of the day I'd had once when I rang them,the lawyer wrote the letter for me herself and emailed it over for me to use. You may not be as far down the line as I was when I rang them,but either way,you've got nothing to lose and everything to gain by ringing them to find out where you stand - it will certainly give you peace of mind,and in my case,my company soon realised that I wasn't going to take things lying down!! The first piece of advice they'll prob give you is to get the HR directors involved,as they're always more than keen to prevent bad press as it were,and it certainly worked wonders for me. Like I said,just give them a ring,and even if it just means something small is changed as a result,then it's worth it. I seriously can't believe that they're saying work adaptations are at the managers discretion when you're legally disabled(I know not everyone likes using that word,but if it gets you where you need to be with this,then you'll need to accept it).

    I forgot to mention that you should also make sure you have in place all fit notes from your GP or specialist explaining what adjustments would be beneficial to you,and why,for example,the later start because of fatigue linked with your condition,so it gives you a fair chance to rest before you start a new working day,or anything else that is relevant to your case - once you have those sort of things written from your medical team,then it's harder for your company to deny or justify not making the reasonable adjustments

    X

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