I woke up this morning and was immediately annoyed!! I was thinking about something someone said in a post yesterday.. it wasn't the comment that annoyed me but the sad truth behind it - which was basically that if you have cancer there's a chance you may be cured but not if you have RA. This echoes exactly what an RA nurse said to me just after I was diagnosed - she also said that people are sympathetic when you say you have cancer whereas they tell you they too have arthritis in their little finger if you say you have RA! I just wonder who is raising awareness/putting pressure on to get research done for an RA cure? Is NRAS? Is anyone? What can we/I personally do to get more money into research? Raising awareness of RA with the general public is one thing - but surely we need research into curing this dreadful disease. I feel powerless and helpless and feel I want to 'do' something- I just dont know what!! I know the NHS is cash strapped but money is still being found for research - I'm just not convinced much of it is going into a cure for RA. If anyone knows differently please let me know. Thanks. Rant over for today!!
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Dobcross1
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There is loads and loads of research into autoimmune diseases, not as much as cancers but still quite significant. In the last 10-15 years there have been major advances in treatment and in working out how to treat a disease you can get closer and closer to finding a cure.
I am endlessly thankful that I got RA now, not 50 years ago when you were basically handed an aspirin and told to get on with it.
And some of the research going on now is I think rather than a cure looking at how to stop it being triggered in the first place.
However look at the NRAS volunteering pages - lots of ideas for what you could do to help.
Thank you that's reassuring. How fantastic would it be if they could prevent it triggering. I will look at the pages - I'm already on a Manchester research group as a member but its general research not RA. Thanks again.
My rheumy clinic is the Nuffield orthopaedic centre in Oxford and it's next door to the Kennedy institute of Rheumatology, there's a lot of different research going on there:
I know there is much research being done. I’m currently participating in a RA clinical research project. I’ve been apart of this research for 3 years & I just learned the study was extended to 6 years. The medication has been working wonderful for me with very minimal side effects. Although I’ve just started back on lose dose prednisone (5mg) because pain was returning.
If you'd like to be involved in trials this company I have knowledge of as my h was referred to them by his GP for diabetic research synexusclinic.co.uk/our-stu...
I’m sorry if I made you feel angry....but when I had cancer help was showered on me when I really didn’t need it-I could boil a kettle and chop up veggies to make a casserole ...but on the other hand I know people crossed the street because they didn’t know what to say to me.....& one thing I think all cancer patients come to recognise is “the look” - mournful I think describes ....as if they might not see you again!
However, with RA ...like everybody says ...my diagnosis was brushed aside and when I had to break lunch dates etc because I was in so much pain I couldn’t get dressed ..... I was told to pull myself together ! Thankfully with drugs I am now very much better.....and I don’t think any of my friends would now dare to say that to me....but they still treat me as if i’m making a fuss over nothing....I’ve given up trying to educate them.
But do have a look in the NRAS Magazine...it notes a lot of the research grants being given for RA and other autoimmune diseases, together with which medical facilities are doing the research.
Versus - the recently newly named combination charity is supposedly our advocate, but as I recently remarked they don’t appear to want to publicise the fact that OA and RA are not the same illness....& seem to concentrate on particularly dramatic events like marathon running when a lot of people with RA can hardly walk.
Thanks so much for your lovely reply - though it actually wasn't your comment that sparked my train of thought! I'll have a look at the NRAS Magazine. I do get why NRAS and Versus Arthritis want to raise public awareness (and god knows its needed with the ridiculous comments we have to put up with) but I rather they press for funding for research as a priority - but maybe I'm being unfair and they are already doing that. That's again for your understanding.
I’ve been silent on my posts for a few months, mainly because my last consult was let’s keep an eye on it as scans show no inflammation although my RF and CCP is high. I skipped out as all I wanted to do is bury the thought that one day this disease will rear its ugly head ( and i feel it’s starting to ) and just rejoice in the fact that I was in the clear ....for now. Yet I’ve started to read all the posts and yours caught my eye as it’s exactly what I had been googling too. Is anyone actually researching it. I guess it’s a two pronged approach, raising awareness and researching. I’m grateful to everyone who has responded and I will look into the links. I’d like to do more. I live Chester way so not so far from you. Let’s hope there is a major breakthrough as it must be costing millions on the NHS in trying to diagnose in the first place and all the diff variations of meds out there. If we can land on the moon there is hope out there. Have a lovely day 🤗
Thank you and thanks for such a great, understanding reply. I really hope you stay in the clear. Although treatments have improved over the years we dont seem any nearer to a cure and there are so many variables such as is the gut involved (there was some research into curing RA by faecal transplants but nothing seems to have come of it). As I said in the reply below half the problem is that outside the medical community we dont get to know what research is being done and what conclusions are. Thanks again and good luck.
I'm about to participate in a research study. From the lititure I've read they want blood, stool and spectrum samples. By what I've read they are trying to discover if anti ccp in also in these samples as sometimes people get misdiagnosed through blood alone and go years without the correct treatment for the correct diagnosis. Looks and soy ds really interesting. I'm one of the lucky few where I'm in the early stages. Hope this helps. 😊
Thanks that's really good to know. I think because research never seems to be publicised outside the medical community we dont even know its happening. Just out of interest how were you recruited for the research?
I was recited through my rheumatologist. She said she had a colleague doing reaserch and thought I would benefit from it. You can also search for clinical trails on the NHS website. I think I'm lucky to have a forward thinking rheumatologist.
RA was far worse, days on end in bed, painandfeeling lousy. Little understanding help or sympathy from Anyone.
I had stage 3b bowel cancer loads of help, concern etc....despite a horric operation I've been fine...3 years on...stillpeople are concerned and helpful about the Cancer not the Ra.
That's a common thing to hear it seems - it just shows RA isn't on the radar at all - the 'poor relation' it seems where both care and research are concerned.
I’m like others had cancer too in my 30’s when RA struck almost 8 years later every doc I saw would keep going on about how rare my cancer was and I was very unfortunate to get it so young even when I was there for something completely unrelated to cancer. I’m very grateful for this forum which has such good advice from people who know and I hope to god someday they’ll find a cure for this totally life changing debilitating disease. Although the cancer left me with a stoma which I’ve had for almost 20 years now, but the radical surgery and treatment for the cancer only lasted for 2 years and I’m sure I didn’t suffer this much with it. So I understand that the comments made you sad and angry but I’m also one of those who’s lucky to be alive after having cancer but suffering with RA more. Sorry if I made you feel bad it wasn’t intended to upset anybody just an observation.
Oh god no, you didnt make me feel bad at all - I know it's a common experience of those who've had both but RA seems just to be lagging SO far behind both on awareness and research. The research that is going on is difficult to find out about unless you're either part of it or in the medical community and we never seem to find out the results or what new drugs are being trialled etc - so there may be more being done but we dont know about it, whereas there are regular news articles about cancer and progress in both treating it and curing it (and thank goodness as progress in treatment made you well again).
Thanks for your lovely reply and i hope you can get the RA under control too x
Ah thanks I live in hope of some degree of control. Onwards and upwards if the 6 numbers come up my 1st point of call is donating to research for autoimmune diseases I know we’ve come a long way but still miles off. One day eh 😁🤗.
I think only people in pain who undertand what it is like. Not enough research being done for chronic pain in general. I was reading about gene therapy for Ra and osteo, however, the South Korean company is being sued as the treatment has cancer causing substances. It looked very promising as they had 3 treatment types.
At the Glasgow NRAS group meetings we get lots of speakers from Glasgow University who tell us about the research they are working on. Very interesting as they are researching cures, how to prevent it happening as well as support aids to assist those with the disease.
Thank you. This is the first thing I've seen that even talks about a cure in the future. I dont pretend to understand it all but Its given me hope! I wonder if it is worth posting this link in a new post as I'm sure that most people would be interested in it and I'd be interested to get others take on it . Thanks again!
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