Weekend mag

[Caza]

Hi has anyone read the Daily Mail weekend magazine that came out yesterday. There's an article about Kathleen Turner, she has RD. It's interesting but why oh why do they call it arthritis.

[Hidden]

My rheumy would approve - he always calls it "arthritis" and I always have to clarify he's talking about RA (he does write "her rheumatoid arthritis" in letters) and he nods - drives me nuts as I do have some OA too but also have such a bonkers type of RA that I need clarification! X

[Caza in reply to Hidden]

My Rheumy calls it ID. x

[shazbat]

My specialist calls it RD as this is a disease that goes well beyond joints. Mine involves my lungs and Kidneys. He is adamant we should refer this as rheumatoid disease.

Shazbat

[Caza in reply to shazbat]

Feel for you. It's just that if it's called arthritis people seem to think it's something that everyone gets eventually x

[Hidden in reply to shazbat]

I'm with him Shazbat!

[shazbat]

I agree Caza someone asked me about my new drugs yesterday. Then said indignantly well I have arthritis and I have never heard of your immune system being involved. Then said load of baloney and walked away lol.

[Caza in reply to shazbat]

Yep,heard it all. I tend not to tell anyone even family. If asked I play it down, which as I've said before I could really do with some support. Thank goodness for this site x

[Caza in reply to shazbat]

Yep,heard it all. I tend not to tell anyone even family. If asked I play it down, which as I've said before I could really do with some support. Thank goodness for this site x

[Hidden in reply to shazbat]

Grrrr! Some people do your head in don't they. There is no educating some peeps.

[sylvi]

They did say in the article that she had ra. It was an interesting item,not sure if her fight compares to ours as she has money to get the best treatment where as we can't. I am NOT taking anything away from her when i said this as i know she has had a fight to get someone to tell her what was wrong. What i am trying to say is not many of us can continue to work,i know some have no choice but to work and sadly they suffer for it. Please don't think i am being heartless when i say this next statement,but if they spent as much money on research and advertising on RA as they do on cancer(i know cancer is a killer,but more people have ra and live with it as cancer) then we might have a cure sooner rather than later.

Perhaps HU could do a countrywide poll and see how many ra sufferers there are in this country. Thank you for letting me rant.xxx

[sneezy28]

I believe there are 690,000 people with RA in the UK currently. I'm one of them and have struggles to work for the past 2 years during a terrible flare. I took voluntary redundancy in August, gave my body a rest for 3 months so my biologics would take a firm hold and my seriously affected joints could calm down. I get up in the morning now and forget I have RA as there is almost no sign of it, I have a crp of 1, not 27 now. Now I have to get a job again and go back to work and face the prospect of it all starting up again which I just don't want to think about. I have had private medical cover since diagnosis and I see the same rheumatologist privately as I do on the nhs for my biologic appointments. What's the difference in the care levels? Nothing but timeframe, I cam ring up on Minday and see him by the end of the week privately, and I get a nice carpet in the waiting room, and if I need a scan or an MRI I get one next day. His care and concern is no different, but yes he's great so I'm lucky. There are lots of misconceptions about money getting you the best care, I just think you get the same care quicker. I'm now paying for my medical insyrance myself, I'm not working and its expensive but it gives me a safety net if I need immediate help. So expensive treatment and private care want make a difference to how your body responds to drugs, but it can give you greater peace of mind

[IainM in reply to sneezy28]

Think the numbers are more like around 400, 000 in the UK , although there are a few thousand every year getting RD

[Luv2shoppp]

Since I've been on this site I've seen a lot of talk about RD verses RA. It seems that many get offended or mad when RA is stated over RD and I've seen where the responder makes it a point to say RD when somebody refers to it as RA. My thoughts are regardless of what you call the disease it's still starts with RA and anything other element that happens as a result of RA is because of the RA. It gets to me the time and energy I've seen put into this site about referring to it as RD. Regardless is this going to cure our RA? This site has been helpful but it's just been too much talk about RA verses RD. I just don't get it and I personally find it annoying. I'm done venting

The name of the meds mentioned in this post intrigued me and I wanted to see exactly what it was and then the dreaded RD came up and I was like here we go again. The main ailment is arthritis. It is what it is regardless of what follows the arthritis.

[nomoreheels in reply to Luv2shoppp]

I don't think it's RD versus RA so much as this chronic disease we all share is misunderstood & if we can educate people who otherwise don't understand by changing a letter that's good isn't it? Since using RD it's helped me no end help when someone questions what it is & often they say they thought it was just aches & pains, not realising that it's our bodies attacking our joints, put simply! They don't know the intricacies, that our vital organs are involved & it has the opportunity to shorten lives & if it opens the door to explain they're usually surprised. So I think discussing it here is no bad thing really. If it helps others explain why they feel so rotten at times I think it's a worthwhile discussion we have from time to time. My Rheumy even uses it now as she says she gets newly diagnosed patients who don't realise how serious it is & that it helps to be treated with the meds prescribed.

I regularly skip over posts I can't contribute to or have no experience of so maybe you could do the same if it annoys you? You have the option to give your views, of course, we all do, & we understand not everyone will agree all the time but sometimes people agree when something proves to work, seems to be the case with this by the responses.

I think once you get into the mindset of using RD you naturally use it, I don't think it's a purposeful thing avoiding using RA even if someone else has, it's automatic, I find so anyway. Maybe others do the same, I don't know? But then I'm a grumpy so & so today & feel nobody understands, least of all my h who normally does but has nevertheless gone out to dinner tonight. At least he didn't ask me to drive him there & back tonight so maybe he does know how awful I feel & just wanted a break from looking at me, pale & poorly as I am!!

[Caza in reply to nomoreheels]

Thank you for that I couldn't of worded it better myself.

My h doesn't always get it either. least you'll get to use the remote!!

Hope you have a better day tomorrow x

[nomoreheels in reply to Caza]

True, forgot about the remote but I'm watching Phillip Schofield & probably only be turning over for Eastenders, then again maybe not I need entertaining not to feel worse lol! I'm normally a glass half full type but not today I'm afraid. Thank you, hope I do too, had enough of this but think the antibiotics are starting to work as I'm peckish! Not eaten for 2 days, not me at all! Hope you're ok.

[IainM in reply to Luv2shoppp]

I think you are being a little unfair in regards to RA & RD, yes historically it has always been called RA due to the arthritis element of it, unfortunately for some it's not always the Arthritis that gives them the most problems or worries, and for you to get annoyed about it intrigues me. These elements that you say that happen as a result if RA?, these are not elements that occurr because of solely RA, they are part and parcel of the disease as a whole, some of get them some of us get some, some of us get none and some of us get all, so would it not be more reasonable to name the "Disease" as such?, well seeing as it is a disease of the rheumatic nature, and can systematically attack your organs aswell, I and a lit of others feel that it should be called RD, because I cant ever remember having a stiff lung because the joints in it were swollen, or my heart becoming swollen due to the joints in it, and not being able to move my eyes because the joints were badly deformed in them. How many people do you know with "arthritis" who are on toxic cancer drugs and biological drugs to alter the immune system? No disrespect to anyone with OA. The answer will be none. I'm sorry you feel this way that you are stuck where it's all about the arthritis rather than the disease, because that's what it is, an auto immune "disease" the same as other auto immune diseases, chrons "disease" addisons "disease" behcets "disease" graves "disease" menieres "disease"

..the list is extensive but I'm sure you catch our drift, we wish to call it RD, we feel it deserves to be called Rheumatoid Disease because of all the factors that are the disease and not just as a result of RD. Infact some of the Rheumatology consultants and their staff in Glasgow Rheumatology department are now calling it RD. So please don't let it annoy you, open up to the idea that the main ailment for some is not arthritis and that before arthritis or disease come Rheumatoid. And that we dont get upset if you wish to continue calling it RA, why? Because we all have it too,,but choose to call it RD. CHEERS and hope your RA is good

[Caza in reply to IainM]

Thanks for replying Iain, it wasn't said to anoy anyone just that arthritis doesn't really give the full picture does it even with rheumotiod infront of it. Pleased that you agree. As you say an awful condition whatever you call it x

[IainM in reply to Caza]

Totally agree Caza, arthritis is just the tip of the iceberg, hope your well x

[allanah]

I want to thank Kathleen Turner for telling her story. All our stories are different , whether we be rich or poor, young are old we all have some similarities. We need people to highlight this disease as you all say many people have no idea what it is. I hope she keeps well and her treatment works and one day she will come over here to promote with NRAS, I for one would love to meet her and think how courageous this is for an actress .

Hope you are all well today xxx

[Caza]

Absolutely,entirely agree x

[nomoreheels]

Seems to me many would benefit from reading the article, & exactly why I refer to RA as RD now. A misunderstood disease with the unfortunate connection to the most common, osteoarthritis. That's not to belittle OA, I have that also, it's just that it's not the same but it's thought it is by many. My friends going back a lot of years thought it was OA I had, all but my GP friends anyway, & those who I'd not seen in 11 years were taken aback when we first met up again when I returned to the UK. What may have helped (!) was that I was unmedicated at the time so at a real low with swollen joints etc but I now use RD to explain what I have & no longer get "I have that" or "you'll soon get over it". Works for me. My Rheumy has told me she uses it now as she's been getting more newly diagnosed patients misunderstanding the severity of their diagnosis & the type of drugs they need to take to try & control their RD.

if Kathleen Turner can be so honest why can't other high profile people come forward & tell of their experience? We know of a few but I'd like to bet there are quite a few who daren't for fear of reprisals or being misunderstood.