Did you know that Rheumatoid Arthritis (RA) is a medi... - NRAS

NRAS
26,868 members30,808 posts

Did you know that Rheumatoid Arthritis (RA) is a medical emergency?

Hidden
HiddenAdministrator
37 Replies

If untreated, it can cause permanent damage to your joints. Watch this video from Dr Chana to find out what the early symptoms of RA look like and what you need to do about it. Don’t Delay, #ConnectToday.

#WorldArthritisDay

37 Replies
oldestnewest
Mmrr

If only.....many RD patients and many of us on this site waited months to be referred by GPs, then months on waiting lists to be seen by a rheumatologist, then months for investigations before treatment could begin ! 😢

9 likes
Reply
Shalf

Wow! This is the type of thing that needs highlighting! Short but to the point. The more who see this the more will acknowledge that RA isn't Osteoarthritis and the more each of us will be taken seriously! Thanks for posting! Suzie X

3 likes
Reply
AgedCrone
AgedCrone
in reply to Shalf

Yes it does need acknowledging that RA & OA are different.

But where do we find the GP's & Rheumatologists to provide this Utopian treatment?

4 likes
Reply
Shalf
Shalf
in reply to AgedCrone

Hmmm, I don't know 🤔

1 like
Reply
pauluk60
pauluk60
in reply to Shalf

i am sick of them fobbing me off same peeps(consultants) would agree with you if paid for consultation more than likely i think its like drv/test let so many pass fail rest but its not funny if its your mobility at stake/pain and all that comes with it the deeps (chin on floor) i don't know if anybody gets this it like something is inside you and i feel leave(don't laugh) as i get better

Reply
Minty1972

Three days, if only mine took over a week and I know for many it can take two weeks to see their GP

2 likes
Reply
AgedCrone
AgedCrone
in reply to Minty1972

Three weeks Minty .....then probably prescribed the dreaded Pred, , symptoms disappear....so patient thinks he's cured....what good is that?

It is a cruel proposition.....there are not enough Rheumatologists to treat those already diagnosed.....we need more, but trying to overburden those who are already overworked will just mean everybody loses out. Yes RA needs publicity.....but maybe a little more subtlety could be introduced?

3 likes
Reply
Minty1972
Minty1972
in reply to AgedCrone

I am under Barnstaple and Exeter two hospitals, my treatment has been brilliant

1 like
Reply
AgedCrone
AgedCrone
in reply to Minty1972

Glad you have had great treatment Minty....I too have a very caring rheumatologist, but most people aren't so fortunate.

How are you doing after your surgery....well I hope?

Reply
Minty1972
Minty1972
in reply to AgedCrone

They had to postpone it had to get daughters papers first and heart valve fitted.Operation on Friday coming then plastic surgery in groin in two weeks, RA is causing me a lot of stiffness and now they want to add a shoulder joint, what next, I will manage as have my daughter safe now and no stress there. No got involved, took your advice and she has helped with lots of other things but the pain this

RA is causing for me is not good, left fingers are twisting and so quickly

Reply
AgedCrone
AgedCrone
in reply to Minty1972

So glad all is going well with your daughter ......do you have a Rheumy nurse? If you do she maybe able to tweak your meds to help you.

But as you will have gathered on this site getting the right drugs to control the RA is a long old journey.

Hope you find something that helps soon.

Reply
Minty1972
Minty1972
in reply to AgedCrone

Yes I see the consultant and the nurse every time I see them once every six weeks.

Reply
Hidden
Hidden

What country does this person live in? It can't be the UK. Or is she talking of aspirations? i don't trust myself to say more.

6 likes
Reply
AgedCrone
AgedCrone
in reply to Hidden

I do't have your restraint Norisa!

3 likes
Reply
AgedCrone

Is she serious? Does Dr Chana live in the UK? Is she going to make a follow up film explaining how anyone with the symptoms she describes can convince their GP's receptionist that you are A "Medical Emergency" & must see a doctor within 3 days, & a Consultant Rheumatologist within three weeks. It's irresponsible & will cause chaos if taken seriously,

In a Perfrct World......Maybe..... But in 2018 UK- not a chance,

Putting out a film like this will frighten everyone with any sort of joint pain, & likely have queues out side GP surgeries.

I get as annoyed as anyone when my GP can't see me earlier than in three weeks...but to phone & say Dr Chana says I'm a Medical Emergency will likely cause some very interesting telephone conversations with GP's receptionists!

Is this truly going to be used by NRAS?

9 likes
Reply
helixhelix

Haven't laughed so much in ages! Talk about fantasy land.

7 likes
Reply
Hidden
Hidden

I waited well over a year (In agony) before my GP would even refer me. She only did it after i wrote a letter of complaint. Then I had to wait a further six months before I actually saw a rheumatologist.

I'm sorry to say GP's are just not clued up enough on rheumatic diseases.

I'd have to be dying before I could get an appointment within 3 days. I've given up even ringing them!

9 likes
Reply
Mmrr
Mmrr
in reply to Hidden

It was a private physio that I visited in desperation who wrote to my GP saying there was something going on with me that needed investigation. That was after 3 months of visiting her most weeks and being systemically unwell and having a hit swollen foot that I couldn't weight bear on.

3 likes
Reply
Hidden
Hidden

If only ... it’s professionals that need this info most not us sadly, I went through about 6 different diagnoses despite repeated visits similar to above replies. I only knew it was national ‘arthritis’ day because I read it on here; shame it didn’t make it to news slot especially the above video which would increase awareness dramatically. This is in no way a criticism of nras or Eular btw, I am grateful for support. It just gets so frustrating not only having a serious condition but regularly feeling it’s trivialised/misunderstood by others. Preaching to the choir, I know 🙂

5 likes
Reply
AgedCrone
AgedCrone
in reply to Hidden

I so agree with you Kerena...whoever from NRAS wrote that script & whoever sanctioned release should really speak to a cross section of patients with RA......not from 'On high' but face to face sympathetically, hearing from those at the coalface, who only get Pred from their GP s who appear ignorant/indifferent to the urgency of fast initial diagnosis by a Consultant Rhematologist with appropriate drugs. Or those waiting for surgery......as you say - realistically it's not the patient who can move things forward - we & GPs are at the mercy of "the system".

Clinicians treating RA could emphasise in communications to GPS the importance of referring back to the experts ...not plodding on with what can be inadequate or inappropriate prescribing. Egos might interfere there of course. Plus if GP gets his initial diagnosis wrong he can be accused of wasting the Rheumy's time.

Unfortunately the video seems to be saying seeing a GP within 3 days is actually possible, & ditto a fast rheumatology consult. Promoting a course of action impossible to achieve does seem self defeating.....& will only cause distress & disappointment.

Maybe our replies could be forwarded to that person at NRAS?

3 likes
Reply
Gigi71

When I first went to my GP at the time, over 33 years ago, I saw the GP the same day . She was pretty clued up, put me straight on Steroids and referred me for an urgent appointment to rheumatology. It took 3 months to be seen. The tendon in my left thumb snapped while I was waiting. I was taken in to hospital for a month of tests and treatments, but in my case didn't stop the joint damage. Time scales were still bad then, but treatments have changed over the years. X

2 likes
Reply
Kitty50ffff

If only it were so easy. I was in pain for 3 months before even being referred to a rheumatologist. Doctors also diagnosed me with different things: German measles, bacterial infection, viral infection and muscle inflammation, but I just knew that something wasn’t right. Thankfully I got diagnosed with RA this week and I’m being treated for it. Let’s just hope the meds work.

4 likes
Reply
autumnsonnet

I have seen posts by patients whose RA/inflammatory A diagnosis was "officially" denied by "NEGATIVE Ultrasound test in his/her hands" (despite the lifelong/longstanding history of swelling, heat, redness etc) ALSO his/her knees, hips or any other joints (and other areas such as internal organs) were found to be affected much earlier. I find that a single ultrasound is not going to be the magic bullet. I believe that the thinking behind this is "there is a simple and low-cost way for a quick diagnosis" meaning an ultrasound scan for hands. If it sounds, too good to be true, it probably is.

If you/medical professionals/charities think, giving an ultrasound will fast-track patients diagnostic "journey" and get to the "result" ( I emphasise the term "journey" here ) quickly, I would politely suggest exploring a number of other cases where it may not be.

Not everyone shows positive ultrasound in hands. I would be interested to know the percentage of patients, who never had the positive Ultrasound test results in hands and "eventually" diagnosed with RA or OA or Both (RA/OA seem to be related or in the spectrum, somehow, contrary to the belief system on the medical establishment).

I think the problem is when the establishment thinks that's the gold standard, then loads of other patients who would not be diagnosed by this simple, low-cost ultrasound, are left in diagnostic limbo for many years. What are you going to do with the rest of these patients? Swept under carpet or you look the other way, pretend that these patients do not exist?

1 like
Reply
Need2knowN

I got a referral to Rheumatology via the breast clinic... my inflammation was so high it manifested in a mass in my breast... they think cancer. I had to go through the triple assessment before I told the breast consultant that my joint pain tops the breast concerns and then he referred me. I was seen 4 weeks later.

1 like
Reply
Hidden
Hidden
in reply to Need2knowN

How awful for you and what a worry. I was asked by nurse on first appt if I was sure steroid shot had worked as raised RF can be many things and one of them was cancer: I’m sure she was just being thorough but 😱; confirmed RD after anti ccp positive x

Reply
Canderson

This video portrays a perfect world! I went to my GP when my symptoms started and was sent away with pain killers and exercise sheets. Until it reached the stage when I was unable to feed myself and dress myself I didn't return to my GP. I saw a trainee GP as the receptionist used her professional judgement and said I would not need to see an experienced GP. She was amazing and sent me for immediate blood tests. She called me back the next day and asked me to come and see her to discuss the results and put me on steroids to help in the interim. Despite her informing the hospital that I needed to be seen urgently I was given an appointment three months away. I rang the consultants secretary but was told all I could do was to go on a list for cancellations. It was only when I quoted NICE guidelines was I given an appointment 6 weeks away. It is okay for the doctors in the video saying you must get an appointment with a consultant within three weeks but in the area where I live this will not happen. Three years down the line I still feel unsupported by the hospital and the GP and have no idea where to turn when things are really bad.

Reply
AgedCrone
AgedCrone
in reply to Canderson

Do you have a Rheumy nurse? I find they are invaluable in cutting trough the nonsense when you are at the end of your tether.

I wonder what the NICE panel think of Dr?Chana's video......that is if they have seen it...I'm going to send it to my Rheumy nurse.

I do wonder who was on the circulation list of the video

If it was only the likes of us...what a waste of effort! But then if it was widely circulated it could cause chaos!

1 like
Reply
helenlw7

If only?... I was lucky to be referred quite quickly when the first stiffness appeared - about two months. However, on reflection, the Paine in my shoulders that I had been to my gp ten years earlier, was put down to my age (I was 40!) was actually RA!

Reply
holly-willow

Talk about Cloud Cuckoo Land. I think mine started in 2002 when I started getting pain in several of my finger joints. I told my GP about it and she sent me for blood tests and then told me everything was alright with the blood tests and that was it.

In 2004 I became so exhausted that I often slept all day long, got up about 5pm and went up to bed about about 8pm. I also had very heavy arms that I couldn't get comfortable with at all. The GP said I had M.E. and I had no investigations. During that time, I started to get pain all over me and was sent to a pain clinic where they tried acupuncture and massage which helped for a short time but not for long.

In 2009 I suddenly went deaf in one ear and the ENT doctor found that the nerve at the back of my ear had died and I would never get my hearing back. He suspected that I might have a form of inflammatory arthritis and I was sent to see a rheumatologist. He said I had fibromyalgia which I do believe I have as well as RA etc. He said that there was nothing except pain killers that could help that. It was in 2011 after having a very bad dose of swine flu that I was referred to a rheumatologist again and was finally said to have sera-negative RA. So all those years went by without treatment. I now have very deformed fingers and toes and am waiting for knee replacements and have mild heart problems.

4 likes
Reply
spzgirl51

Hello Hidden ,

I agree with the other contributors below that this video creates un realistic expectation . Especially for UK residents who will have much longer waits to see their G p who will frequently want to take the cautious wait and see approach . This could mean months of waiting even to get a referral to rhuematology and start waiting to be diagnosed?

Perhaps the NRAS should target the General Practitioner 's mindset and campaign for a rethink of the NICE treatment pathway for suspected Ra damage?

I have seropositive 'ra .. I live in the Uk. The nh s is a wonderful concept. But fast acting response, in situations other than acute trauma? It is definitely not. I have waited 14 weeks for a physiotherapy appointment for shoulder pain. It lasted barely 5 minutes and I was given one exercise to do.

your video is cloud cuckoo land.

Reply
Hidden
Hidden

It would be nice to see that video on GPS screen where they usually play rather pointless ones on a loop telling you stuff you already know. I suspect that’s unlikely tho as they’ be inundated with worried people with joint issues

Reply
Uga35570

This video makes me realise how "lucky I was when diagnosed 6 years ago. Gp said straight away that it was probably ra or psaratic sent me within a week to rheumy ,rest is history although have had both eyes cataract operated and pain ,exhaustion and flares but realise now could all be a lot worse. Do feel we all need to campaign against so much rubbish spoken a bout a disease so sadly misundersood by many. Healthunlocked please note. Gripe over hope you can all have a happy pain free weekend hugs to all.

Reply
pauluk60

Don’t Delay, #ConnectToday.

katie katie DID YOU NOT SEE MY POST IAM FAIRLY NEW HERE SO CANT POINT YOU TO IT I WAS ASKING THIS(CAPS STUCK) erm about a 8 week ago i was completely out of it 4 wall window stuck in CHAIR to me i was done for so much so i am scared stiff of going anywhere THAT must not happen again but i know it is its like the grim reaper I DONT WANT CAUSE ANY GRIFF TO ANYONE BUT MUST REPORT CONVERSATION I HAD TO YOURSELVES WHAT YOU HAVE SAID IN YOUR VIDEO IS ME TEN FOLD BUT WHEN TALKED TO OPERATOR I WAS LARGELY PUT DOWN I AM SORRY TO SAY YOU DONT KNOW WHAT I FEEL LIKE HEARING ON VID ALMOST IN TEARS SOMEONE WHO KNOWS WHATS HAPPENNING PLEASE IT WAS ABOUT 6 WEEKS AGO TO SOMEONE CALLED CAROLINE SO SO ANNOYED NOT INFORMED OF ARTHRITIS DAY AND YOU HAD EQUIPMENT TO SHOW/PROVE WHATS GOING ON I AM MISSING SOMETHING HERE WHAT IS DONT DELAY #CONNECT TODAY PLEASE I HAVE BEEN IN AGONY AND IT SEEMS EVEN YOU HAVE MISSED A CHANCE FOE AGAIN "EXPERTS" PLEASE TRY TO GIVE ME SOME HELP I DONT WHERE THE VIDEO TOOK PLACE BUT IT WOULD HAVE HELPED A LOT I AM SO DUMBFOUNDED FEEL LET DOWN BY NRAS SOS TO SAY

1 like
Reply
Cheylann

All good and well but no way can u see a rheumatologist in the NHS in 3 weeks.

1 like
Reply
Missfitt
Missfitt
in reply to Cheylann

Received blood tests results and seen by rheumy 10 days later

Reply
whaleroad

Good one. 🤣

Even when I had a scan that showed symmetrical joint inflammation at several points, my rheumatologist made me wait 2 months for an appointment to start any treatment.

At that point it was already nearly a year since I had been referred, and 8 months since I’d had my first appointment.

A leaflet in the post from Arthritis Research UK and a letter basically saying “Your scan showed you have an autoimmune disease, I think you should take this drug. Leaflet attached” with no indication of diagnosis, prognosis, or explanation of the scan or what the immune system had to do with it. Then followed the most anxious 2 months of my life.

But doctors hate it if you Google ... 🤷‍♀️

Reply
SylviaMA

Luckily my gp was very quick to do a blood test for RA after my first lot of symptoms and I was referred to a specialist quite quickly. So far it’s being managed very well

Reply

You may also like...