Casualty episode - RA

RA featured in tonight's episode of Casualty and I must say, I was disappointed with the way it was portrayed. For those who didn't see it; a young man of 15 was dx'ed during the episode with RA on the basis of joint and eye symptoms. Twice, he commented that he "might end up in a wheelchair" and there were no other comments about what the disease is or how it acts. At the end, they told him not to worry after all because blood tests had shown it was a mild form! I know it's only a TV program but I thought they could have done a bit better and maybe done some research, even a quick google!

[Luthien66]

Hi fuitycake, no I didn't watch it as usually eating dinner and it puts me off my food...silly I know!

This doesn't surprise me though as there is still so much ignorance of this disease within the general public.

xx

[Hidden in reply to Luthien66]

I used to watch hiding behind a cushion!

[Poppymichael7]

I was diagnosed with Sjorens Syndrome in January, no one mentioned RA to me. It wasn't until March when the bridge of my hands swelled up and I was in agony, I was sent for a blood test that confirmed I had RA. Even now I have never been given any medication for this, just eye drops. My throat and tongue get so dry and through the night my tongue and throat are like sandpaper,I have no saliva at all so I have to have a glass of water on my bedside cabinet every night. Sorry I just started out to reply to your blog and you must think I'm starting to give you the story of my life xx

[Hidden in reply to Poppymichael7]

Hi PoppyMichael7,

Sorry to hear how your struggling, the symptoms your struggling with all sound like your sjogren's syndrome, except for your hand swelling.

Who sent you for a blood test that confirmed you have RA?

Its just normally everyone has multiple tests from there rheumatologist before they get dx'd with RA.

I'm not doubting what you have, however I'm very concerned as even people with a mild form off RA they are treated with aggressive medications to attack the RA as aggressively as possible before it does any damage (long lasting) to your joints etc.

If I was you I would arrange to see either the doctor or rheumatologist who diagnosed you with RA and find out why you have t been given medications etc.

Take care xx

[Poppymichael7 in reply to Hidden]

Thank you so much for your concern but I didn't make myself clear. As I said in January after tests was diagnosed with Sjorens. In February I had a bone scan was diagnosed with osteoporosis. In March as I said I was diagnosed with RA after it showed up straight in my blood. I had to wait till June before I saw a rheumatologist who sent me straight away for bloods and loads of X-rays, so I was started on meds. I've had three lots that I've had to come off because of rashes but I see the rheumy on Wednesday so well see what. After all that I was given the eye drops for Sjorens mouth spray didn't help so I think on Wednesday ill mention it to the consultant see if he can give me anything else. Any way thank you for caring it means a lot xx

[Hidden in reply to Poppymichael7]

Oops sorry about reply below I wrote it before your further explanation. But I won't delete in case it helps people here realise that primary Sjogrens can be severe and cause similar symptoms as RA and require same treatment. Its a huge spectrum is the rheumatoid one!

[Hidden in reply to Poppymichael7]

Oh ok I understand now, I've had allergies and reactions, ( one where I was hospitalized in a bad way) and I've had 3 DMARDs fail methotrexate helps a little and so far I've had two infusions fail and 3 anti tnf injections but I'm still, trying new drugs all the time, and even though I have osteopenia I have high dose steroids too.

Hopefully your rheumatologist will try you on another drug soon with better results as it's not good to try and cope without drugs, but I'm sure your rheumatologist knows what's best for you x

[Poppymichael7 in reply to Hidden]

I see consultant on Wednesday so ill let you know how I get on

[Hidden in reply to Hidden]

Hi PoppyMichael17. Just to add to what Julie is saying - you should be offered the same medication options for Sjogrens as RA as it is also an autoimmune inflammatory arthritis and is diagnosed by a rheumatologist and treated with exactly the same drugs quite often, especially if it is quite an aggressive form of Sjogrens as you are describing with the extremelely dry eyes and mouth.

I know this because I phoned the Sjogrens Society helpline a few months ago and the woman I spoke to was on 25mg of methotrexate for her primary Sjogrens, which was at the RA end of this sister disease so she often suffers the same kind of joint pain as RA sufferers - especially in her hands. The blood tests often show positive for ANA and most people with SLI / Lupus suffer from it too. You can be sero negative for everything and still have RA or Sjogrens. The only way to conclusively diagnose Sjogrens is to take a biopsy of tissue from inside your lip I think.

I'm really shocked that no-one has referred you or treated this properly and suggest you phone the Sjogrens helpline as I did and push for a referral and treatment as soon as possible. It doesn't really matter what label this gets in a way - it needs treatment to improve your quality of life ASAP!

[Poppymichael7 in reply to Hidden]

It was an ENT doctor that referred me to rheumatologist in January and after tests was told I had Sjorens . This new rheumatologist hasn't mentioned it so I will bring it up on Wednesday. As I also see a consultant for COPD he has said a few times about me having Sjorens . Thank you everyone about concerns and advice for me, it is so nice to write and get feedback xxx

[Hidden in reply to Poppymichael7]

Definitely ask the rheumy about this because it is a rheumatoid disease and they should know and address it with your RA. I'm off all RA meds too just now having struggles to tolerate two and had no disease control out of the third - and I have bits of Sjogrens and Raynauds and Hashimotos (thyroid) too. But apart from the hypothyroidism and RA none have been actually mentioned or addressed by my rheumy. My eyes and mouth are much dryer now that I'm off MTX I notice and my hands and feet are icy cold all the time now too. There has been no mention of what might be next for me at all yet so I understand how you are feeling.

The Sjogren's Society helpline were really helpful and made me realise how serious Sjogren's can be. I think, because most people with RA only have secondary Sjogren's we often assume it's quite a mild condition comparatively, but obviously it isn't. Txx

[Hidden in reply to Poppymichael7]

Just wanted to suggest Biotene gel for your mouth at night. And please talk to your dentist, as you may have to have special toothpaste too.

Also, look under the list of HU communities for TASSA. Its a Sjogrens group.

[Poppymichael7 in reply to Hidden]

Thank you for telling me about that I will try it xx

[Hidden]

Thanks for this as I caught the bit when they told him over the phone that he had a mild form of the disease and I heard the word arthritis made me wonder if it was RA so I thought I'd pop and here to see might try and catch it on I player now. I suppose we should be grateful that at the very least RA is being portrayed on National TV even if it could have been researched better

[Hidden in reply to Hidden]

I agree with you Amanda - its annoying when the facts misrepresented but then it is just a soap and they probably adapt every disease or injury to serve their wider storyline for dramatic effect. But its good when RA is taken seriously enough to be part of a storyline at all!

[Hidden]

I've said it before and I'll say it again...in the UK we need a major soap character to get the disease and live with it (not suddenly be cured after a few weeks) It is the best way to raise awareness to the masses!

[Hidden in reply to Hidden]

Hi lilac_lion we've already had a big soap character a few years ago with RA

mirror.co.uk/3am/celebrity-...

The stars get there medical problems picked up quickly so they get treated quickly and aggressively.

This isn't always the case for us mere mortals. :/

Really we need RA advertised from all angles, that yes some people can have a mild from and they can continue to do most thinks with some pain and fatigue , then there is people with a more active form who can be left struggling day to day and get through without aids or maybe only a few, and then there is those with severe RA who can be left needing daily care, wheelchairs and walkers to hobble about and many more aids just to get through a few hours a day before back in bed again with extreme pain and fatigue :/

[Hidden in reply to Hidden]

Claire King suffers with RA in real life but didn't in Emmerdale....Maybe that's what's needed a high profile character in a long running soap to get RA ? There are "celebrities ' who suffer with RA or other autoimmune conditions but you don't tend to hear much, maybe it's because they are all doing so well?!! This is the second time this year I believe Casualty has featured RA I think the episode earlier this year featured a lady who was smoking drugs to help her het through as she didn't want to take medication....????? So good on Casualty for that!!

[Hidden in reply to Hidden]

That's what I mean we need the CHARACTER to have it so it Is interwoven into the storyline and the viewers see it every time they tune in. If an actor has the condition, as you say they have access to quicker care but people may read about it once in the paper then they'll forget. It is the character not the actor that will help to raise awareness.

[Hidden in reply to Hidden]

Oh I see what you mean now you mean the character acting as they have RA.

I do agree that most off the actors that suffer with auto immune diseases don't promote it enough.

Cain dingle in real life suffers with severe chrons disease so bad he had to be out off the soap for a while while he had surgery, if you noticed at the time off him returning to the soap he had lost a lot off weight :/

Also Lady gaga suffers from lupus but again gets the best care so her disease is well managed :/

[Hidden in reply to Hidden]

Yes that's what I meant, I think Jo suggested it first earlier in the post too:). Yes I read about him suffering with Crohns......maybe celebrities think it may harm their profile in they admit they have an auto-immune condition as in it might limit the amount of work they get...... I don't know ????

[Vivante]

I am in full agreement, I did not watch the programme, Whenever I watch the soaps, I cringe. There is never enough research done re medical conditions. I have been teaching for over 35 years and worked with people who has RA. None of the people in my classes are in wheelchairs. Shame on you Casualty.

[Hidden in reply to Vivante]

I didn't watch casualty either, I've been to support groups for people with RA and I've met many off a wheelchair user due to RA.

I know its much less off the population off people who have RA as severe, but I believe its around 5 in every 100 RA patients that get RA so severe they need wheelchairs, care and other aids included.

I'm not saying this to worry people with RA but as a person who needs a wheelchair myself due to RA, I've had the comments from people with RA who manage well into why do I think I'm different and need a chair :/

I don't think I'm different my rheumatologist told me I was unlucky and have severe RA but I've seen a friend with severe RA get the right treatment and who's now out off her chair, so fingers crossed one day soon that will be me and others who need wheelchairs etc.

[Vivante]

Many thanks for your reply. I know exactly how you feel. I can understand also. Over the past months since I was informed about the website, health unlocked, I have learned so much more. As I say to the people in my classes, the ladies who has had cancer treatment, who lost their hair, they are unique in the own way. It is only we, the less able,can speak and make comments about our condition. Our voices should be heard,. I have a scar down my chest, a little paler now, at one time I was ashamed to wear tops that were too low, but I realised that scar is part of who I am, you must be proud of who you are, you are special.

[Hidden]

I know that RA is a hugely varied disease and for the unlucky minority, such as Julie, the drugs don't make enough difference and a person will end up physically disabled from it - at least for a while until newer drugs are found or tried which work.

But I think we have to be careful not to dismiss those with less aggressive forms of the disease and the impact that this can have on other areas of their lives.

If, like me, you have mild versions of four or five autoimmune diseases things can be really hard in a different way because there is no visible manifestation of any of these so we appear to look too well to have much wrong with us. But feeling rubbish and trying to accept this is RA and the uncertainty and unpredictability this brings, as other conditions wax and wane too can be as hard as having a more obvious physical disability I feel.

So let's be really careful on here with each other to emphasise that, whatever form your RA takes, its usually hard to bear at times - and not use terms like mild or severe in the context of this forum. What soaps choose to do is neither here nor there is it?

I feel there ought to be more solidarity here over the invisibility of other autoimmune conditions - not just RA. Diseases like SLI and Crohns don't usually leave people wheelchair bound but living with them and the colostomy bags, failing kidneys and many other awful internal stuff as the disease progresses must be terribly depressing when the person is told they look just fine but are falling to pieces internally.

[Hidden in reply to Hidden]

Oh no Tilda please don't think I'm dismissing your suffering any form off RA is horrible and I wouldn't wish it on anyone in any form :/

I was only meaning I've come across RA sufferers who have been diagnosed and have only had in there words " a little swelling in there hands etc" and I've had two off them say to me well what you doing in a chair for, it's not that bad.

I'm like you also with multiple auto immune diseases and I'm really sorry if I came across wrongly.

I've just done and been to coping classes , for people with RA learning to cope with a long term condition, and I was given personally a lot off grief over why I was using a wheelchair, wearing specially made shoe on one foot and a splint on the other foot, and arm , wrist splints personally made and not the standard ones. Even though I didn't complain any more in the group than the others a few off them singled me out and made out I was playing on it ( I wish , then it would go away ) but luckily my rheumatologist was the speaker at our next class so he explained the difference at that class.

I also have the issues off looking well to other people as on the rare occasions I do go out, I make the effort and my sister styles my hair perfectly for me, helps with make up etc so I go out looking fab, and just getting dressed like this makes me feel a little better inside but people get the wrong idea as they do with you, I've often found it harder for RA people who don't need a wheelchair but can't stand for long etc, there was a lady in primark being ignored as she was stood at the disabled till, when I went someone came immediately , so I made sure the lady got served before me even though the assistant wasn't wanting to serve the lady as she was stood.

I like you have multiple auto immune diseases and know how badly each one can affect life, ok my RA leaves me using a wheelchair, but no one understands when I can't see from the left to manoeuvre my wheelchair as uveitis has left me unable to see from my left side.

Sorry if I worded everything wrongly I surely didn't mean too x

[Hidden in reply to Hidden]

And I'm sorry if I got a bit paranoid equally Julie. I'm in so much pain with my back today that I can relate really well to the way people like you must feel all the time. I've always believed that my RA was mild - even non-existant quite often when on MTX. So because of this often feel like an imposter and it takes little for me to want to run a mile from here and just pull myself together somehow. But lately I've felt that this has become much more systemic and I seem to have a bit of every autoimmune disease mentioned currently with a bit of neurological stuff thrown in for good measure now too! None of them affect me properly or badly as they do you - but cumulatively they are exhausting and not having RA in any classic sense just now - compounds this sense that I'm going to be disbelieved at some point (hasn't happened yet thankfully). So I can totally imagine how horrible and wrong it is when people tell you you're milking it. That really is the worst thing anyone could say. RAers should certainly know better!

Last night I was at two parties and was in such horrible pain and yet people kept telling me I looked so well in a very pointed way - because they could see that I was in pain but just couldn't really take it seriously - and I hate to put them straight all the time - especially in a party setting.

But I can't believe anyone would be so stupid as to say that you are exaggerating your symptoms in an RA group? This beggars belief. So very glad your rheumy was there to contradict this and put them straight. I would be the opposite if I was there and would just feel fraudulent for even being at this group in the face of such obvious suffering and courage as yours. xxxx

[kelli]

I didn't see the episode but I hate the misconception of RA never mind that it should be classified as a disease as the damage to joints is immune related, I got aggrivated by finding an old leaflet at my old drs with a svelt looking white haired woman model riding a bike and this was about RA! What an outdated opinion!

[Sarah1969]

I saw it, and I agree. There really wasn't any info on rheumy and what can be done. I know I've been told now that mine may not be rheumy, though I'm not completely convinced, I would have liked someone (I wish Duffy was still there) to say a referral to a rheumatologist will sort him out. X

[Hidden]

Upon reflection, I think it was "it's only a mild course" that upset me because a.) even 'mild' RA can be life changing and b.) I was told aged 21 (4 yrs ago) that it was good my disease was mild and caught early whereas it has morphed into aggressive RA that had led to joint erosions and a complete lifestyle change.

[Jeanabelle60]

I don't watch it anymore.....always the some sort of story line.....young doctors disobeying the older doctors or that sort of thng....I'm very glad they aren't sorting out my condition. The last time I watched it that Rhuematoid disease was mentioned it involved a woman who became a drug addict to try to relieve her pain!!!!! That finished me....

[Sophie123]

Hi Everyone - I have been on the site for ages so hello again!

I didn't see the episode but a friend has told me they also mentioned PsA as a milder form. If this was said in the epidode, I too would be so afronted as I suffer with PsA and are often in severe pain that moves around the body almost on a daily basis! I am sure other PsA suffers would also agree. If they are going to portray things like this the very least they can do is research the items to the fullest I believe.

Ok rant over and out of my system !!!

All the best to everyone who has to suffer with these awful illness and all too often in silence as there is sometimes no visible symptoms for other to see.

Gentle Hugs To All

XXX

[Hidden]

Why don't you all write to the Casualty production team expressing your disappointment in how RA was portrayed. We have done so many times before but coming from lots of people they may take more notice.

NRAS are always on the look out for celebs to fly the flag and while we wouldn't wish this disease on any one having some high profile celebs would really make a difference to raising awareness. Likewise having a character in Corrie or Emerdale or Eastenders with RA would be great and it is something we continue to pursue but no script writers have taken up the challenge yet.