is OA being ignored in terms of research?

chris7

Hi helpline

Sorry I have already been in this bit once this weekend but this has been on my mind and left me feeling a tad let down and confused. :???:

At only my second local AC meeting last Thursday the branch president attended our AGM to talk about developments in arthritis knowledge and treatment. He is one of three Consultant rhuematologists at my local hospital along with their team of nurses. He of course spoke of the continual strive and small successes to find better treatments with less side effects for those with all manor of inflammatory arthritis.

He kinda glossed over OA by inferring that since there is no proven research to say that anything much can be done to halt it's progress that we, and our often sometimes unknowledgable GP's are left to get on with it with painkillers and if an option at some point surgery. I did point out to him that I had actually found both physio and hydro HAD been helpful but that I was then discharged from both once I had been referred to the ortho Consultant whom I have seem once almost a year ago! Why is this? Do we not deserve the same ongoing treatment if it helps? Is there any research being done at all to look at ways of halting OA degeneration or are we just left in the hope that a new joint will be inevitable if this is option?

My physio was a lovely caring lady and it helped for me to have that regular contact with someone who just KNEW I could not lay on my back comfortably unless she put a cushion under my knee. It was just nice to have someone monitoring me and understanding things, but why for only 8 weeks?

The Consultant I saw once was similarly understanding and knew his stuff though at my six month check up last Nov, he was unavailable and I was told by the Registrar who didn't even sit down to speak to me that I should come back in a year or when I needed surgery! How do I know? We appear to be lumped in fracture clinic which will always have to take priority as emergencies occur.

My GP wants to help but what can she do? I am already maxed out on anti depressants and all she can really offer is painkillers, she certainly can't answer my questions regarding arthritis.

I am left feeling very much like the poor relation with OA and feel dumped, in particular since most of those at the meeting have RA or PA and share rhuemy nurses and treatments. They all have my sincere sympathy but at least I feel like they are being treated with as much consideration as resources allow with time to talk to knowledgable medical staff and treatment options on a regular basis. The speaker at the next meeting in a rhuemy nurse.

I am now wondering whether the local AC meetings are not for me and unfortunately this wallow in self pity is spilling over and making me wonder whether I should even be on this forum when I often can't contribute or help those who post on LW because the majority are juggling with RA/PA/Fibro meds and treatments and understandably need support here.

Sorry for this long whinge I mean no offence to anyone on the forums many of whom have been so supportive to me, but I really do feel like I have been dumped to get on with this by the medical profession.

Chris :sad:

skezier

Hi Chris,

Oh flower you got it wrong about the forum.

There are a hue amount of OA sufferers as well and your contributions to ANY post are really needed and helpful.

I know what you mean about oa being the poor relation and I know very few people even on site think of it as no big deal..... I have to say this no big deal took away every dream I had and my life in my 20's so .....

Its now helping to make breathing hurt....

really is no big deal eh?!

Thankfully most people do understand, in the same way as you understand the inflammatory ones, its an evil advisory and it really hurts! I saw a post the other day that said you don't have to have it to understand the pain. Most folk know that all of them hurt and do damage.

AC are trying to promote a better image and understanding for OA and that's what it needs cus everyone I know 'has' it... no they don't! Its not a slight twinge and a bit of achy.... as you know... its grinding endless tooth ache in what ever joint its decided to live in.

I kinda get where you are a bit cus I was really bad a few years back and only had diclo's to off set it. Chris I am lucky I see a rumo and he agreed since it was being ignored to take over the pain control of the oa cus I was about to bail it was that hard.

The pregabs have really helped as well as the tramold more than the morphine I used to have and well maybe that's something you could ask your gp about. Not sure how they go with antidepressants but flower if you had less pain and more hope you might not need those.

Its a vicious circle, pain causes more unhappiness and they will treat that bit far quicker than they treat the pain!

I did a AC course... that's was all leaning towards the inflammatory ones as well... think it should have been more even and oa given some credence that it is actually important too... hell more people get it in life than the inflammatories.

I said to someone recently that the oa is giving me temporary paralysis for god sake how bad do you want it to get before you realize! Its an evil evil thing and it has trashed my whole life cus I got it at 15!

It deserves more recognition.

Chris they have difficulty finding a way to slow it down as its not inflammation in the way the others are. Its not autoimmune though there has been some suggestion you are more likely to get it if you have an autoimmune thing.

What they have done in leaps and bounds is get the joint replacement side of it assorted and really there are some incredible advances there. Artificial discs, cartilage implants they are trying to find ways to help Chris but they don't understand what causes it to happen and it is self motivated and not caused by antibodies etc so controlling it will always be hard.

Maybe not impossible though.....

Tell you Chris if they had come up with the disc thing when I was young it could have saved me so much pain and heartache!

Please remember this one...... YOU ARE AS VAULUED MEMBER OF THE AC SITE AS ANY OF US! your talking like this cus your down.

Your contribution to the forum are so much appreciated not just to the people you leave them to but also to the folk that read them! You are so good at helping and I ain't just talking for my self here either!

If you do try and leave.... i shall come up there and shake you and you wouldn't want that cus it would hurt your hip I might have to ware the hideous neck brace, a corset and borrow a set of splints but don't think I wouldn't That's how valuable you are to the forum!

Chrissy its cus you're feeling down flower.

The AC groups could have an ortho come in and a pain doc coming and maybe you could suggest it to them? \They might find it interesting and in your case a referral to the pain clinic might get you better help that the gp can ever give.

Gone on for ages here and sorry but just want you to know your not alone in the fed upness that oa doesn't get the kind of understanding it should! Its the second class arthritis but it does as much damage as any of them!

It took my life, dreams and half my body off me how bad does it need to get before its given a bit of credence!

Thankfully most people here know its bad Chris and don't side line it to no big deal!

Know I am thinking of you and sending you a skip load of (((((( )))))))'s and slurps, slobbers etc as well as my heartfelt thanks cus you have always been there for me ever since you joined and Chris never underestimate how much a kind word can help people.

Hang i there flower. Love and a cuppa with side dish of anti-teasy flakes Cris xxx

Sorry Chris no anti-teasy flakes cus I ate them Figured I should. Have left you some cream and saffron instead xxx

frogmorton

OH NO!!!!

Chris :shock:

bless you this forum has to be for all of us...as you know l have inflamatory arthritis, but l also have OA in back and neck.....l am interested in BOTH areas.

Actually if you read the stats then we should all be interested in OA as it will almost certainly affect us or someone close to us at some time so we would be silly to ignore it's existance treatments and the like :sad:

l have had physio too, agin on,ly for 6 sessions.....so l think that may be more due to budgetory restraints rather than the actual issue. She only treated the one thing referred for and need to refer again via Gp for anything else (l have a list!!!). Although l regularly see a rheumatologist l dont get any ongoing help at all either :???:

Chris l have been to only one of out A/C meetings here and am not sure l would go again as l felt a bit too young :oops: but this forum? l have a circle of great people who l know l can rely on for support and understanding at any time....you included. None of us have exactly the same disease, bur we do all help each other.

this IS the place for you.

Love and HUGE hugs

Toni xx

helpline_team

Hi Chris,
I'm just going to write some reassurance about Research and OA.
We here on helplines are hearing a lot of good news around OA research. All kinds of new treatments are being researched and are in the 'pipeline' from stem cells to disease modifying agents. Some of these are already being used safely and effectively in RA. Some new drugs are even starting to go through NICE approval and may be available in the next year or so. So how do i know this ? Well, I sit on some of the committees making these decisions on your behalf.
All research takes many years and we know that is necessary to get accurate results and assure safety.
OA is far more complex than people have been led to believe and there is a big inflammatory factor involved. The helplines Team have just as much training updates and input from the OA medics as the inflammatory ones.
The other good news is that there are some great rheumatologists out there in the UK who have a special interest in OA and some are world renowned specialists in the subject. So next time your branch suggests this - get a rheumo who knows his OA or a brilliant physio or a GP with special interests in musculoskeletal or rheumatology. Your local AC office may be able to help you find someone.
Give the team a ring if you have any questions 10 to 4 weekdays 0808 800 4050
Hope that helps ?
Jo
Jo Cumming
Helplines Manager

barbara12

Hi my Love
I am so glad the moderator moved this, and I for one totally understand where you are coming from.
I was referred to a rheumy who had no interest what so ever in me, his word were I treat inflammatory arthur.
So it dose leave you wondering if OA is really looked upon has just having aches and pains and should be getting on with things.
Chris you add so much to this forum, and you are so supportive, I do think it needs people like you and me to fight our corner .
I wish I was good with words like you are, but I am sure you know what I mean.
Sending you loads of hugs (((((())))
Love
Barbara xx

Dottydoodah

helpline_team wrote:

Hi Chris,
I'm just going to write some reassurance about Research and OA.
We here on helplines are hearing a lot of good news around OA research. All kinds of new treatments are being researched and are in the 'pipeline' from stem cells to disease modifying agents. Some of these are already being used safely and effectively in RA. Some new drugs are even starting to go through NICE approval and may be available in the next year or so. So how do i know this ? Well, I sit on some of the committees making these decisions on your behalf.
All research takes many years and we know that is necessary to get accurate results and assure safety.
OA is far more complex than people have been led to believe and there is a big inflammatory factor involved. The helplines Team have just as much training updates and input from the OA medics as the inflammatory ones.
The other good news is that there are some great rheumatologists out there in the UK who have a special interest in OA and some are world renowned specialists in the subject. So next time your branch suggests this - get a rheumo who knows his OA or a brilliant physio or a GP with special interests in musculoskeletal or rheumatology. Your local AC office may be able to help you find someone.
Give the team a ring if you have any questions 10 to 4 weekdays 0808 800 4050
Hope that helps ?
Jo
Jo Cumming
Helplines Manager

Hi
Thanks for the positive input, but when you say look for a top notch doc that knows his stuff, how do you find out who is the best?

woodbine

Hi,

I have OA in numerous joints (back, knees, hands, neck, and now probably elbows) and am finding it quite hard to come to terms with it all. I'm 42, and increasingly worried about what might happen to me in the future.
About a month ago (through my work) I was at a sort of ‘fair’ of health related groups. The AC stall was just opposite mine, and the lady running it gave examples of 2 people of the same age, and in similar amounts of pain in a similar number of joints.
The first was receiving regular hospital check-ups, had a rheumy nurse on call, received hydrotherapy and had been thoroughly scanned and tested to find the full extent of the problem. The second had received basic x-rays, a short course of physio and had been seen by no-one at the hospital at all. The only difference was that the first had RA, and the 2nd OA. The pain and the effect on their life was similar. I know that RA must be carefully monitored because it can affect other bodily systems more than OA does, but does that really justify this huge disparity in care?
I’m glad to hear about the research being done into OA treatment, and that the complexity and effects of the condition are being realised, but as long as GPs like mine keep insisting that there’s no point in even trying anything such as hospital referrals, none of us will benefit.
It’s also great to see that NICE is recommending new treatments, and that there are some rheumys out there who are as interested in helping patients with OA as RA, but how can we find out who they are, or get to see them? I’ve been arguing with my GP for about 5 years, and he’s almost agreed to send me to see a specialist – though insisting that he doesn’t see why I want to go as they won’t be able to do a thing for me!
I don’t want to disparage RA sufferers – I know that it’s a terrible disease to have, not do I want to disparage those GPs who take OA seriously – please don’t think that- but in many ways OA does seem to be the poor relation – how often do articles in newspapers, etc, about arthritis dismiss OA in one or two sentences, then concentrate on RA, or explain that OA is only suffered by the elderly – as if this makes it any less painful for sufferers of any age!
I have to say that people on this forum, and at my local AC group, see to be full of advice and sympathy whatever form of arthritis people have – thanks
Sorry – rant over! The sooner research is done into any/all forms of this horrible disease, so that we can all get our lives back, whatever form we have, the better!
Naomi

chris7

Hi

Oh dear :shock:

I have just checked back in here expecting to find one response from the Helpline and am embarrassed to find this thread has been moved to LW for open discussion!

Thank you to Jo the Helpline manager I was to my shame unaware of some of the research and developments you mentioned which have probably been already covered on the forums and I have missed, :oops: all of which are good news for everyone. It seems there is somewhere to go in educating the public who do not suffer from arthritis if my own ignorance is anything to go by but perhaps that is my own fault.

I hope anyone who looks in here, will please understand I posted my original thoughts at a very low time and from my own personal perspective of the “here and now” for ME totally outside of the benefits from this forum.

I have, and I hope this has been apparent always posted to others with genuine sympathy and support where I can irrespective of diagnosis simply because they, like me felt the need to be here. I apologise if I have inadvertently offended anyone at AC or those using the forums: it was never my intention to do so nor to cause unnecessary divisions when we are all battling the same health issues.

Thanks again to the helpline for the response here and to those who have been of particular support to me personally, you know who you are. I sincerely hope that ALL forum users get the prompt treatment, medical and financial support you need in the future and if not as is often sadly the case that this forum gives you the courage to fight for it.

take care all.
love
Chris

Dottydoodah

Hi Chris

I am very new here. Only joined today, but i wanted to say that i feel you have done nothing wrong. You were having a crap day and dont we all!!
In fact i feel the same about some of the things you said.
I think it is great that we have this community to let off steam and vent our frustrations. I am pretty sure no one is offended by your post at all.

I hope you are feeling a bit better

speedalong

Hi Chris,

your questions to the helpline are very pertinent and I'm so glad you made them.

The reply from the helpline was very interesting.

From one fellow OA-er to another - thank you.

Speedy

angel1

Chrissie, I`m not on here very often now, although you and I are in constant contact. However, I just wanted to show my public support for you, in all that you have said here.

You are exactly the sort of person that a Forum like this needs. Intelligent, articulate, and very, very caring. Please my love, continue to use those qualities in any and every way you can, particularly in the pursuit of better care for ALL arthritis sufferers.

Much love to you always.........Ange - guess what I nearly wrote there!!

skezier

Hi Chris,

I was also surprised to find it moved for open discussion as well.... I didn't realize a question asked with in the domain of the the helplines, in the helplines forum would be moved for public debate but am sure it was done with good intentions.

I think a bit more sensitivity could have been shown really. I would have still put my post cus it is the poor relation and doesn't get much recognition.

I don't think its anything more than the fact it is a good question and does show it either is, or we with feel it is, the Cinderella one!

Hang in there Chrissy and leaving more saffron and cream ((((( ))))) xx


Hi Jo,

I don't guess you will see this now.

I am really glad that people like your self are helping and that in time things might change but for now oa isn't treated too well. There is also often this standard answer by the medics of 'I don't have a magic wand' and that also needs changing before any advancements filter through to the people that need the help.

I was also wondering as Dotty said how are we able to find someone when all we can do is go with whats is available at local level.

Its good there is some research going on towards the control side its not well known inside the medical profession let alone out side of it, so its good that AC did say about raising its public image.

Could I just ask which drugs are up before NICE please? Given how hard funding is for the anti's is it to be the same system for the proposed oa drugs?

It doesn't matter from my point of view cus its way too late but I just wondered as I would like to thin future generations get more help than mine did.

Thanks for making the time to let us know some changes for the next generation might be available, though if its funding based not this way for sure..... but that's another issue :roll: and a while new box of teasy flakes :oops: Cris

frogmorton

Morning All

I for one would like to thank you Chris for starting this debate and am glad to see such excellent responses from forum users and also the helpline team.

Great news about the research Jo anyone who ignores the effects of OA is short-sighted (have l said that before???? :oops: ).

Finally Chris at no point have l EVER seen you be anything less than kind helful and supportive of others on here with whichever kind of arthritis they may have. As we so often say pain is pain :sad:

Love to you all

will continue reading this

Toni xx

ironic

Hi Chris,
Aw Chris you are always a great supporter of others on the forum and it shows how lovely you are by learning about inflammatory Arthur.
There are a good few of us that have both types of Arthur so we all need as much information as we can. Most of us have a friend or relative who has OA I know I do, and through you and others I have been able to pass information on and can to some extent relate to what they are going through.
It has always been a mystery to me that GP’s are not well versed and more pro active in the promotion of research in OA as it affects so many people since time began. If this was the case I am sure more research would have been compiled well before now. It is one of the areas where pressure coming directly from the general practitioners would have to be listened to.
It is encouraging news from AC that there are new announcements to come in the near future.
OA is a very painful and frightening disease to contend with and has devastating effect on peoples’ lives.
Hang on in there Chris; we think the world of you. Please don’t even think of leaving us.
Lots of hugs,
Lv, Ix

woodbon

Hi, I'm an OA person! Here is fine but research is not so advanced as with RA. The good thing is that poeple are getting interested in it now and it looks as if things might inprove.
I think the research for RA and other inflammatory problems took a sudden turn when discovery of the cancer drugs, thats the anti tumour drugs were found accidentally in the early days to help RA patients. Once you get something like that happening, then doctors and just as importantlly scientists start to get exicted and can put together good applications for money to research the problems.
OA proved more difficult. Also inflammatory sufferers tend to be younger than OA sufferes. Not always, but sometimes. But we are not second class. No way. Look at Arthritis Research and see that they are doing more with OA now. Check out arthritis sites and even if like me you don't understand half of what you read, research is their.
We also need to start shouting a bit more!!! We are really, all in the same boat and here of all places, I feel at home. I hope this ramble makes some sort of sense, I don't mean to sound bossy or a know-all. My husband is a biochemist and I used to be a secretary in the OXford University Biochemistry Dept and so I follow as much as I can whats going on!!! Love Sue

woodbon

Hi, Their is some information about osteoarthritis research on the Arthritis Research web site. They tend to be directed more at the medics and scientists, although they do have a lot of information for us non-scienctists to read.

I do agree though, and more should be done for us OA'ers. I suppose just have to do as much as we can ourselves. Here, in South Norfolk, as far as I know we don't have social groups or any groups that are set up for OA, although just down the road their is a large new group for RA sufferers. Maybe I should be doing something about that, like setting up an oa group, instead of sitting here going on about it!!! :oops:

Anyway, I've rambled on enough for now, love Sue xxx

skezier

Hi Sue,

I will go look at the ARC site cus that's really interesting. It is too late for me but I love the idea that future generations (hopefully the next one actually) will get some help and real understanding that I know I never got either as a youngster or as a the hag i become

Hope your doing ok there flower?

The group thing see I think its better if we all are in one really. I still love that post (by Legs I think) that said just cus we haven't got it doesn't mean we don't understand the pain and what ever one we have we all got one common enemy in all guises.

I also really am pleased that people like Jo are on the committee cus, sadly, she understands it and that's has to be so much better than just the academic side.... I am about to go off again ain't I?

I just feel it has been neglected for many years and am so relived its being given more credence now

Its been a bad enemy to us both eh? Love and a ((( ))) cris who will shoot over to the ARC site and keep quiet about her ethical things..... :roll: xx

chris7

Hi all

Just calling in to thank the webmanager for his response and apology on this thread.

What is done is done and after my initial surprise I am happy for the thread to stay here, it is interesting to note the number of people looking in so hope it has helped others even if they choose for whatever reason not to comment. I would however like to add that although I am well aware all forums are public, I do think a question addressed to the Helpline in particular, from an individual forum member as their personal perspective often in times of crises is always a personal one! though I accept others do contribute helpfully where they can, but we will gloss over that since I have no wish to start a further debate! :roll:

Thanks to everyone who has responded here and elsewhere. For those of you who do not know me just feel I should add that I am now 51 and am aware that my current feeling of neglect by the medical profession is not therefore based on age. By the time I finally got an xray after struggling for many years my OA in both hips was already severe. I fully accept an earlier diagnosis in my case would have made no difference and that for those of you with other forms of arthritis it most certainly does!. You have my hearfelt sympathy and a hope you get treatment as soon as possible.

I hope all the ongoing research does make a difference in particular to the younger members of the forum and to future generations and that you will all feel able to fight your corner. Thank you to people like Jo at the Helpline who are doing so on our behalf.

thanks to you all
Chris

My apologies for not posting and offering support elsewhere at the moment. One of the advantages of feeling left to get on with it by the medical profession is that I, and I know others are doing just that as best they can! I have therefore been coerced, bludgeoned and given the "look" by my boss who believes I am too young to have arthrits and am currently working every day until next Thurs. so am recouping spoons where I can.

Airwave!

OA? Always the bridesmaid never the ............

We are stuck in between the medical specialities, after having one new joint removed that is now a closed door.

To suggest that we can just march in to the surgery and demand that we are given the best, is a laughable event, last time I asked 'what next'? I got sent back to whence I had come and ended up with a upset consultant and a wasted appointment with exactly the same result as before, with a note that the patient was getting upset, ggrrrrrrrrrrr!

There may be wonderful innovative treatments happening, but only in small pockets in the UK, it will be many many years before these treatments go nationwide for OA sufferers, first you'd have to find GPs that can diagnose!

OK, OK, rant over, I'll get back in my little hole, try and live with arther and keep quiet.

Airwave!

Sorry for the rant, that wasn't me, just a lost soul fed up with arther.

seamonkey

Hi chris,
I wanted to also send you my support as so many have already done. We all have bad days and if we can come on here and vent why were feeling so down/low/angry etc then thats great, i for one have no where else to go for support of those that can truely sympathise, not with the diagnosis i have had but with being in so much pain all the time and how that effects our lives. youve done nothing wrong but voice your own oppinions and i found the replies insightful.
WIshing you well and sending you
seamonkey

Bookseverywhere

Chris, I have both OA and RA. Apparently I got the OA as a result of side effects from one of the treatments for RA!

It does sometimes seem that research into arthritis is not as high a profile for health practitioners and researchers as other, more high profile, areas. We do seem to be left to get on with our lives, and so many people just do not understand that arthritis can be as life inhibiting as lots of other chronic and progressive conditions.

Best wishes,
Kevin.

Pherstun

I went to an AC meeting last week and the Chair said that Arthritis Research said they know enough now about RA and are doing more research on OA, they handed round a questionnaire for people with OA to fill in.

So keep hanging in there!