Hi all. I was diagnosed with RA last January, with my hands and wrists being badly affected. I have had to take early retirement from work ( I was a nurse), as my hands and fingers just don't work well enough any more. I am, therefore, going through the horrors of being treated like some sort of fraud whilst doing PIP assessments, housing benefits etc, whilst being told that £73.10 a week is sufficient to run a house on (I live alone, so am solely responsible for my bills!) It's bad enough having the RA, with the fatigue and the pain, but this whole change of lifestyle is so difficult.
The DMARDS didn't suit me at all, causing problems with my liver and blood pressure, so I've yet to take any med for longer than 3 weeks, therefore nothing has been in my system long enough to work for my RA. I've been started on Benepali, having had my second injection this week; however, the side effects of this drug are increased risk of skin cancer and blood cancers!!! This isn't even in the 'rare' category either! But it seems that this treatment regime is like a ladder, and you can't go onto anything else until you have tried the drug before and found it doesn't work. As a palliative care nurse, who has spent her nursing career nursing people who are dying, mainly of cancer, I am struggling with putting this drug into my body! But I have no choice; otherwise the RA will become more disabling. What a depressing post, sorry all!
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Jinnybabs
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Hi Jinny. I'm sorry for your plight! Whilst I have no knowledge of Benepali I can certainly relate to your situation. I live alone and recently lost my job as an aux nurse. This time last year I was in a better place and started a job trial by way of redeployment. It was an admin role which I'd never have otherwise chosen but was all that was available. I got extremely stressed and after 3 weeks I had a flare which lasted months so that was that. Liver scores have always been an issue for me and lo and behold just in time for my dismissal hearing I had to stop meds! As I couldn't give any assurance I'd be back soon they had little choice but to let me go. Anyway sorry for hijacking your post! I just wanted you to know there's someone here who understands. Please feel free to message ok!
Hi Paul, how lovely to have someone that understands where I'm coming from! To have to give up a job I was passionate about, knowing there's little chance of ever getting back to it, is so hard to take. So that's not hijacking, that's empathy! I knew I would have to work til I retired at 66 in another 4 years) but that was no hardship. I tried to carry on working , and managed until March, when the effects of the Methotrexate really started to hit, the fatigue was too severe, and I couldn't trust myself to be in a hospital; I also had to weigh up the pros and cons of being near so much infection, with the added risk to myself. After being off sick from March to September (I didn't work for the NHS, unfortunately, but in a private hospital, so was on statutory sick pay) they terminated my employment - my job had been absorbed anyway - which was so hard to take. Now, to go through all the minefield of claiming benefits, which I've never done, and not finding it an easy process, is humiliating and degrading. Not the way I wanted to end my career! Thanks for listening!
Hi Jinny. Equally lovely for me too! I can relate to all you've said there. I know losing my job has left a massive void...and a void I'm certain can't be filled by anything else. Thats because it's so much more than just a job. I only came to nursing in the last five years and have done all sorts in my time. But nursings the only role that ever made me feel the way you do at the end of a shift...fulfilled!
Are you on ESA Jinny? I filled my work capability form in ages ago but haven't had the face to face meeting yet.....dreading it!
Hi Paul, I know, it isn't just a job, is it? I worked as a Nursing Auxiliary before I did my training, and sometimes felt that it was better than being a trained nurse; you get more time and hands-on contact with the patients, more time to talk to them, rubbish money but more satisfaction!
I've been on ESA since the end of September, when my SSP stopped. That was when they decided that the £73.10 a week was enough to run a house on! They're still deciding about housing and council tax benefit, as well as the PIP. It's a nightmare isn't it? The worst thing I find is the attitude; instead of innocent til you're proved guilty, it's the other way around! They haven't talked about a work capability yet, no doubt that will be in the pipeline somewhere . . .can't wait!!!
Jane
Hi Jinnybabs
Time for you to receive some of the understanding and sympathy you have poured out during your career.
I identify: had to quit most things I enjoy but fortunate that I sometimes have periods when I can at least knit a few rows, and if not fatigued or whatever, can take walks though far shorter than my hikes used to be.
Getting the right meds can be tricky, but you might think of perhaps maximising health (minimising risks of other health issues) by making changes to eating eg avoid sugar ad it feeds cancer, but guess you know that!
I also use non fluoride toothpaste by Kingfisher, made my own deodorant with bicarbonate of soda, coconut oil, essential oils etc, changed the kind of fats I eat (back to butter, lard, in addition to Hemp Good Oil/Extra Virgin Olive Oil, added coconut oil in many ways too.
Also found (expensive) cannabidol for worst pain though can’t afford it yet; I am waiting for PIP too.
But there is also astaxanthin ( powerful natural Cox2 inhibitor available on Amazon in 30mg with coconut oil to aid absorption);
And boron supplements act on joints to protect them, also work at cell level with magnesium and calcium to protect during menopause, Help Vit D synthesis;
Instead of NSAID Celocoxib (and omeprazole to protect stomach from it!), I found that studies concluded that turmeric curcumin with bioperine taken along with boswellia (frankincense) act even better than Celocoxib or paracetamol.
That might be plenty to investigate for now.
If you want to know the doses I take, feel free to ask.
All my joints were badly affected but doing not badly apart from some side effects of MTX currently.
Wishing you a speedy road to solutions for feeling better.
Hi Angela, thanks for that. There are so many things to think about with all this, aren't there, and each has to be tried on it's own to eliminate effects of disease, meds, etc. So hearing what other people have found helpful is always good!
I’m 57 and seriously looking at medical retirement
I too understand how you feel.
I’m a specialist nurse working part time in the nhs reduced from full time in July 2016.
I was diagnosed in January 2016 and have RA mainly in my wrists and hand together with terrible fatigue.
I was on long term sick at the time of diagnosis and returned to work in March 2016.
To cut short the story I was forced to reduce my hours which now affects my nhs pension at 66.
I’m about to start benepali as DMARDS have failed apart from MXT (suffer with nausea ++ for a day or 2 following injection ) and have the same fear as you. Re exposure to infection etc.
I’m also struggling at work often overworked and it’s getting down.
I have asthma too so susceptible to chest problems and recently had a chest infection too 3 weeks off sick now back at work this week now coughing again.
Thanks for the reply Matilda. It sounds as though our histories are very similar, I know I have no choice about taking the Benepali; and certainly (this is my second week of taking it) the only side effect I've had so far is having to get up to go to the loo increasingly at night - last night it was six times, just as well I'm not working I suppose! I had no NHS pension, as I worked in the private sector, but am in the same category as you, with my state pension not kicking in until I am 66 (another 3 years and a bit to go.) It's such a change, isn't it, having to make all these huge life changes whilst dealing with the illness itself? Hope you can decide soon. Take care.
It’s difficult can’t work on the wards any more. So very limited in what I can do.
Had 3 weeks off sick went back to work this week and cold sores started again( have had lots of cold sores sometimes 2 at a time) so stress at work must be causing these.
Haven’t heard from hospital at home re delivery of benepali or nurse either. I was told it would be about a month. Have an appointment with Rhuematology next week. Have a week off and going to Greece with my daughter for 4 days. So looking forward to the break away.
I know, it's so hard, and sooo stressful! I hadn't been on anything since June, when I had to stop Leflunamide (it sent my BP to 125/120!) I then had to go on to Cholestyramine to wash the Leflunamide out of my system; it took my digestive system months to settle from that. They agreed in July that the next stage would be Benepali, but I didn't actually start it til last week. The wheels grind very, very slowly!
Untreated RA ( inflammation ) that is left to run rampant will ultimately be far more of a risk to your health than any Biologic/Biosimilar.
If you read the side effects of any medicine it's enough to put the fear of God into you!
Having been diagnosed with this serious Autoimmune condition you have been dealt a rough card all this combined with having to give up a job you loved with the added pressure of responsibility for your bills and having to claim benefits on top of being in those sort of in between transitory years where you should be tapering down your workload voluntarily rather than having it forced upon you is a lot to come to terms with.
Remember with these TNF inhibitors you might be immunosuppressed but you do still have an immune system. Your bloods are checked regularly. I have mine taken every 8 weeks and get the results on the same day with my patient online access.
I can see every result I have had since my diagnosis all plotted on graphs.
My liver like yours wouldn't tolerate all the major DMARDS , I tried the Big 3 Mthx, Sulfa, Leflunomide and my liver enzymes went to crazy levels.
Oral steroids gave me steroid induced diabetes, I was unable to walk, shower, get dressed, pick up a tea cup, my mouth wouldn't close for two months as It affected my jaw.
Since Enbrel now Benepali together with Hydroxychloroquine I am back at work in a very physical tiring job and have had no time off sick at all for the last 14 months.
My personal experience tells me I am privelidged to have been given the option of a Biologic medicine and all the published side effects do not reflect the reality of actually taking the drug.
Life will get better for you I am sure of it and once you are receiving treatment that brings your symptoms under control you might feel able to re enter the workplace in some small fashion if you so choose.
Thank you Mandalou, what an encouraging post! I understand that just leaving the RA untreated is not an option, and I think part of my reluctance comes from the dreadful side effects I had with the DMARDS. But, as you say, to be offered the Biosimilar is a privilege, especially when I read posts from people overseas who can't take it because they can't afford it.
I have to be a patient patient! How many times have I said that to people over the years?!! And yes, it's very true what they say about nurses and doctors making the worst patients!
I’m hoping will kick in soon once started as I do want to continue to work as being at home and further reducing my monthly budget further will prevent me from the occasional social gatherings I attend.
Hi great to hear your success story. Mine is quite the same tried all the methotraxe etc all with bad results to liver and bloods eventually got benepali . Been on for 6 months and it's the difference between living or existing. Yes the side effects are scary but no more so than smoking and drinking so if you are lucky to get it like I have . It took over 3 years to get it go for it I can now wall and do so much more . I struggled to get out of bed and hobbled around all day. It has changed my life and I have never had so much as a cold since I have been in it.
I really sympathise. I was made to retire from nursing having been an RGN for 20 odd years, it nearly broke my heart as I too loved my job. I have had RA for 26 years and it doesn't seem to be losing it's grip on me. I have no experience of Benepali but have been on 2 anti TNF drugs (sadly can't rmember which) one of them had absolutely no effect, the 2nd was working well but after feeling really ill for around 8 months it was decided to stop the drug. It took another 8 months for me to feel slightly better. I know exactly what you are feeling as I too really don't like putting these drugs in my body. I have now decided that although having been offered Rituximab I am not going to take it. It has lots of side effects and I just don't want to feel so awful ever again. I am taking MTX, Sulphasalazine, Hydroxychloroquine and some others. Have you discussed your misgivings with the Rheumatologist or Nurse? Maybe they can put your mind at rest. If you decide against it can they not suggest another drug? I do know that these drugs work wonders with other people and I seem to be very susceptible to side effects.
Also, for help with PIP and ESA you could have a look on a website called Benefits and Work, it is a marvellous site and gives excellent advice. Good luck with everything. Take care
Thanks for that. I discusses my misgivings with the rheumatology nurse, and was told that 'this is the one they've chosen, and you can't go on to anything else until you've tried it.' So I feel rather between a rock and a hard place! I'll check out the website too. Best wishes.
I was an active nurse until I turned 59.With RA I knew I could no longer work.Between the meds causing brain fog and painful hands ,feet,ect.I went on disability.
Sorry that you are going through it at the moment. Things will get better I promise. It is a ladder as you say, and you have to hit all the marks as you go along. A bit like a sick video game of snakes and ladders, I say sick bcz it's your life that's being played with.
I was taking Benepali, was on it for 6 months and it was a snake, not a ladder for me. To say I did much better on Enbrel than Bene would be a massive understatement. Even though some would have you believe it's one and the same. I'm now back on Enbrel and doing much better. As you well know being a health profess drugs are sometimes necessary and beneficial. The name of this game is risk benefits, and this doesn't sit well with a lot of us, I totally get you and I don't have the answer on how to feel good about the risk factor.
Thanks for this post, sorry I’m behind as never remember to come on here, except once in a blue moon. Really struggling with benepali & othet meds at present. I was diagnosed with RA almost a year ago at age 56, already have Fibromyalgia, CFS, Osteoarthritis, among other things & that got so bad, had one crumbling hip replaced at age 48. They dont know why I’ve got all of this, I was very active & working full time & also helping my adult son & daughter-in-law (both disabled since birth) & their child😒.
The Rheumatologist put me on Methotreaxte (tablets) & then 2 other ones, one I coulnt tolerate at all, sulfazin** something, so that was stopped. I then went on to Methotrexate injection once a week. My inflammtion was coming down well, according to my consultant, though he’s not great at explaining things. Then the Methotrexare caused liver problems, had to be stopped & only went back on about 2 weeks ago. But when I last saw Rheumatologist, he said he wasnt happy with my progress as the “line” on his chart, the inflammation was moving any further. So he started the process ( what a palava, with outside “provider” doing the meds itself, phone calls/instructions etc) of putting me on Benepali. I didnt like first one as it stung, the list of side effects is pretty awful, but thought have to go along with it. But dont have a good feeling about it, been trying to ignore this, but 😒😒. After only 2 weeks of it, get a cold/bug, am advised to give it a miss for one week. I started it again yesterday & lo and behold this afternoon, after a morning out, started sneezing & thought it was hay fever. But as we got to early evening, my cough started & thoug I have asthma (well controlled) this isnt like my asthma. I feel really conflicted as want to try to continue, but ar the same time, this isnt giving me the lowish quality of life I did have. Bottom line is, if I’m going to feel like I do today, it’s not worth it? But dont know what to do. I see the Rheumatologist 22 Nd June, so I suppose I can try & hang on for that.
Any thoughts welcome. I really must try & come on here more regularly, but get info overload easily & involved with groups & other things online & in real life!
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