Thanks for the news letter, which arrived today. The first item on the news letter is a survey "Shape the future of Inflammatory Arthritis." The first question asks do you have RA or JA. If the answer is no that is the end of your survey.
So what happened to the other forms of Inflammatory Arthritis?? Obviously the rest of us must suffer in silence as our opinions don't count.
Do you mean the NRAS magazine Beaton? If so I haven't received mine yet so should not really comment - but I'm making an educated guess that by RA they actually mean anyone diagnosed with a type of inflammatory arthritis and by JA they mean the juvenile form of arthritis.
To be fair RA is often used as the catch all term for the many less common types of inflammatory arthritis and RA is of course built into the heading of NRAS as a charity. I speak as someone with a very unusual form of RA myself who has the diagnosis, confirmed by a second rheumatologist, but a very different set of symptoms to all the sufferers I know.
Worth also bearing in mind that not everyone here on HU is a paid up member of NRAS either, although I think if you do have RA, a family member with JIA or closely related condition it's a very good thing to join and receive these newsletters.
How are things with you anyway? Twitchy x
Hi Twitchy, I was referring to a membership e-mail, sorry I should have made it clearer. Don't get me wrong I have every sympathy for people with RA but I do find other forms of arthriti are ignored by NRAS although they claim an interest. I have PsA and tried to join the local group but when I told them I had PsA they looked blank and couldn't understand why I was there. I was not welcome. My consultant and GP both shrug their shoulders and basically don't know how to treat me. I expected more from an organisation such as NRAS. Perhaps I was wrong.
That said Twitchy I'm struggling on, trying to do the right things which as you know is hard sometimes but still fighting.
Beaton xx
Hi Beaton, why don't you educate us? Sorry I'm ignorant of PsA. There are many forms of conditions that I've never heard of, for instance, I didn't know there was a form of psoriasis arthritis until the rheumatologist mentioned that I may have it and to be honest I don't know which arthritis I have. A lot of the symptoms sound familiar with lupus, sjogrens and any other auto immune disease to which I do have a diagnosis so now I just say I have arthritis.
Ignorant again, what is the difference between RA and inflammatory arthritis? Is it the same as fibromyalgia?
Hope today's a good day for you. Xx
Ah you see not everyone here is a paid up member of NRAS - hence some might be baffled by your post!
I agree that PsA sufferers are often much more in the dark where it comes to support groups and networking. I can only suggest that Arthritis Care groups would be a more likely place to find fellow PsA sufferers. There are no NRAS groups in Scotland yet - although one is being started now in Glasgow. There is a local group of AC up here however so I attended a series of AC management workshops a few years ago. There were two people with PsA and one with RA and the rest had an assortment of long term conditions including MS, Addison's, Fibro, cancer and even one woman who was deaf.
I didn't feel comfortable being there really and haven't attended more since as it was a bit touchy feely for me and the other RA sufferer was re diagnosed with OA and Fibro half way through the course.
I did find I had much more in common with a man with PsA than anyone else apart from the MS sufferer so we were a little gang of 3 comparing fingers and talking Zumba and neuropathy in the coffee breaks!
I am not really a group person in my everyday life - never have been apart from my choir where all the focus is on singing which I love.
I don't really have views on whether NRAS should expand its remit to include PsA and other types of inflammatory arthritis because I have great friends through HU now who have Lupus, Scleroderma, RA and PsA and Vasculitis so I tend to move around these communities as my shapeshifter RA befits. But given there is no HU for PsA sufferers and given how close the overlaps are with RA I would like to see NRAS being more inclusive of this sister disease - same goes for adult Stills.
Tx
Thanks for reply (again.) Twitchy, I think I shall come to you in future. Your calm straightforward reply as always make sense.
I'm not much of a group person but was invited to the setting up of the RA group by the hospital. If you remember I can't tolerate the meds. my consultant was prepared to prescribe and I no longer see him. My GP is happy to prescribe for me and at present (a part from thyroid meds.) The only medication I take is Ibuprofen.
Perhaps I should look elsewhere, maybe contact the hospital. I'm sure there must be something out there.
Thankfully people on this site do give support and try to help.
Thanks again Twitchy,just for being there.xx
You are most welcome Beaton and thanks for your kind words!
If I were in your situation I would probably push to try one of the biologic drugs - which are often better tolerated than the conventional DMARDs - see Someone'smother for example of this.
As I've said earlier on to Chris - the criteria for PsA sufferers is somewhat different and your GP should be willing to refer you to a dermatologist or rheumatologist who could make a case for you if your PsA is erosive and always flaring.
If not and you are happier not to be on such heavy duty immunosuppressants (which I can also well understand) then at least it's on the list of possible options if and when things progress?
It's isolating enough having RA with many drug intolerences let alone the lesser understood PsA. I find I derive a lot of support from other online communities too when I feel a bit of an outsider, with my rogue type of RA, on here.
I will PM you about another forum which has many members with PsA in case you are interested in using it as well as this one. If you don't already that is.
For what it's worth, I think that NRAS choose to focus mainly on RA because it makes them more effective - keeping the focus on the second most prevalent type of arthritis. Other charities with broader remits can lose the patient-led sense of purpose by trying to be all things to people with so many different forms of arthritis.
Personally I see PsA as coming under this RA banner in political terms. But if you feel this isn't the case then I suggest you contact them via the helpline and discuss how they can serve a broader range of people with inflammatory arthritis - I know they would be only too happy to get feedback from you. Twitchy x
I guess one of the reasons NRAS doesnt put a lot of focus on spondyloarthritis is that there is another national organisation just for spondy - NASS (National Ankylosing SPondylitis Society), whereas NRAS is the National Rheumatoid Arthritis Society. Because NASS does such a good job and specialises in all forms of spondy, I probably wouldn't bother encouraging NRAS to do so, because they need to focus on RA.
The point was Shape the future of inflammatory arthritis. If they are not interested in other forms of arthritis, why not word it differently. Why great you with open arms take your money and then tell you they have no interest.
As for NASS, they to have failed to represent me.
Chris fibromyalgia does sometimes occur alongside inflammatory arthritis but it is not an autoimmune form of arthritis. Health professionals tend to see Fibro as the arthritic form of ME/ CFS.
Psoriatic Arthritis is PsA and is a close relation of RA but doesn't affect the synovial fluid surrounding the joints in the same way. It is one of several diseases that come under the heading of Spondyloarthritis.
Treatments are very similar but PsA responds less well to DMARDs than RA so sufferers are sometimes offered the Biologic drugs a bit more quickly - especially if the PsA is resistant to DMARDs and damage to joints is occurring rapidly.
It is equally serious, also autoimmune, also can affect the organs and also usually (but not always) affects the skin with psoriasis. It is seronegative for rheumatoid factor so often takes longer to diagnose than RA - which in turn makes possible joint damage a greater likelihood. It is quite possible to have RA and PsA. Hope this is helpful.
Twitchy
Thanks twitchy, it's interesting that there are so many variations which can cause so many different things within our body. It's always the not so straight forward illness that causes the most frustration that the doctors don't seem to know how to treat.
I know. It's always hard to know what to pay heed to and what to ignore symptom wise isn't it? I've recently learnt the hard way that most of the symptoms that bother me for more than a few days are to be taken pretty seriously. I know that I frustrate my doctors and they frustrate me too! X
The arthritis research site has good information on lots of different types of arthritis - this page links to psoriatic arthritis for example
arthritisresearchuk.org/art...
It also has a section on inflammatory arthritis
arthritisresearchuk.org/art...
The site is well worth a viewing, and may complement the shared experiences of those on this site.
here is the link for NASS (for spondyloarthritis) nass.co.uk/ They do have their own forum, but also an excellent help line and lots of info on their website. Plus they have regional groups that meet up.
Hi Beaton,
Thanks for your comments. We are sorry that our survey made you feel that your opinions were not important to us.
As the title suggested, this survey is intended to inform a meeting which is about inflammatory arthritis (IA) research but because most of our members and the people we represent as an organisation have rheumatoid arthritis or juvenile idiopathic arthritis, this is our primary focus and specialty. However, we absolutely appreciate that some of our members may have other forms of IA, and try to provide support to people with IA, such as through our forums.
We agree that the views of people with other forms of IA on this topic are important and that our survey was not clear. Apologies for any confusion or frustration this has caused. I have now amended the first question and added an additional option to capture other types of IA so more people can complete the survey and share their views on non-drug research.
Thanks,
Laura
NRAS
Thanks for your reply Laura,unfortunately having done the survey I can not redo it.
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