How many people?

[VeronicaF]

Its scary reading on here how many people have been wrongly diagnosed ,to be told they have RA only to change hosptails or and then be told they haven't got that.

it scares me I am due to go on meds been already on one, which have scary side effects, what if they have it wrong with me?

I have been told sero negative, my RA factor high bloods, shows on scans but showing on no other blood tests only 5 on the C whatever its called.

its making me wonder what if they got it wrong and so many years down the line after so many meds I am in same boat as many on here.

its scary

the meds for the treatment of RA are no joke

they can do a lot of damage, yes they do a lot of good if you have RA but they still have side effects that can do damage.

scary, your putting your life in their hands and trust they have the right diagnoses

but what if I am like so many on here and they have it wrong?

its a scary thought.

[nomoreheels]

Hiya Veronica. Not if you put it in perspective & try not to overthink it. There are approx 400,000 in the UK with RD, that's 1% of the population. How many misdiagnoses can you remember reading about? RD is a tricky disease to diagnose in some people, it doesn't present the same in everyone like some conditions & our GP's are requested to refer as soon as their initial tests confirm there's the possibility (or probability) there's something wrong. We know the likelihood is the earlier treatment starts that the better the prognosis, so add it all up & I think you'll see it's so few the chances you're one of those people is minute. You've said here about your joints, you have flares, what could they be attributed to if not RD. It's not fibromyalgia, that's been proven, is this part of the worry, that you've had a misdiagnosis once, is this what's playing on your mind? Other than side effects did SSZ help?

We're fortunate if the first DMARD is the one for us, whether it's that it doesn't work or because of side effects, it happens. I'd not worry yourself, but if you want extra support please do either ask your Rheumy or call the NRAS helpline. Just to help you to put it in perspective really, whatever you've read here really is unusual, it's been said many times but forums are places where people go when things aren't going right. Being here has scared you, you have a fear of side effects, maybe you need to ask questions of the people caring for you right now, things can get blown up out of proportion on screen, it's unfortunate but it's distant.

So, your question how many people... very, very few in relation to the UK population who have been diagnosed. Other than that I'm not sure I can give you an exact figure but you say many. I don't know but if you think you have been misdiagnosed then maybe check back on your timeline, check all your related posts here, read your Rheumy's reports & see if you can work out where there was any doubt. If there was then I think all you can do is discuss your concerns, but seronegative is more difficult to diagnose so I'm sure unless he was confident your Rheumy wouldn't have said he was 100% sure & start you on SSZ.

Please, do ask. You need to be reassured otherwise you'll doubt everything your Rheumy says or prescribes & that can't be healthy.

[VeronicaF in reply to nomoreheels]

yeah I will, the Rheumy said there was no doubt last time I saw him

but will ask GP too when I see her

the SSZ did help, and only realised after I had to stop it because of side effects.

I think I been reading to many threads :O)

there are quiet a few on here though lately on some threads

and some had been put on the M drug, and I thought if that was me Id be going nuts being miss diagnosed

[nomoreheels in reply to VeronicaF]

Quite a few? I've not been around as much as usual so I can't be sure I admit but it's a known thing, look for negatives & you'll find them. I know I wasn't misdiagnosed but MTX has worked the best for me. I'm pretty sure I'd be a sight worse if I hadn't started it all those years ago, 3 months was all it took to convince me. But if you do think you were misdiagnosed discuss it with your Rheumy. Ask your GP too but I think you'd receive better explanations from your Rheumy.

All the best.

[VeronicaF in reply to nomoreheels]

thanks nomoreheels

I am a nightmare patient, I question everything and anything

[nomoreheels in reply to VeronicaF]

It would be difficult for you, I understand. But you need to keep the beast calm whilever you're not taking any meds for it, stress isn't good for RD, as you found after stopping SSZ.

[VeronicaF in reply to nomoreheels]

its funny because I read about root teeth problems causing RA, and my dentist said what you said, he said" if you read something" you can say yes, but then read it again and pull it apart" and your say no

I didn't listern to him, had my back tooth out, its made no difference what so ever ::O)

I will never learn :O)

[nomoreheels in reply to VeronicaF]

Well, there have been discussions about root canal work initiating RD but I don't know if it's ever been proven, scientifically I mean. You'd think though once the work is done & any possible bacterial infection treated RD symptoms would subside. I may be wrong or oversimplifying it because I've not had the experience, or a root canal.

I think your dentist speaks sense! Maybe learn from that?! 😗

[pauluk60 in reply to nomoreheels]

can i come in on conversation please i will ask you about my codition i have been diagnosed as osteo i can tell easily when this plays up bone on bone but i get flares where its down tools and do nothing well no choice cant stand turn last 10 days immobile four walls window and bird feeder and few daft thoughts well had no idea if going to come out it this is not osteo is it i call it inflammatory arthritis cause everything red hot and this goes all over body but i can come out these quite good at moment can you two put a name to it as they its not rheumy sos for poking nose in but you seem around where iam at

[nomoreheels in reply to pauluk60]

I've been diagnosed a long time Paul, 10 years, I was also diagnosed with secondary OA at the same time so I can empathise. Unfortunately as you know we're not qualified but at the same time I'm not sure if you're confusing an RD flare (the ones we discuss regularly here) with an OA flare. The two are quite different. An RD flare causes inflammation & is the result of the immune system being overactive at that particular time whereas an OA flare isn't even though you might notice joint swelling, it's bone on joint wear & tear, usually as we age, but not immune related.

The all over body heating you're feeling I'm unsure of, unless it's a recurring infection? Have you seen your GP when you have this experience? If not that's what I'd do, see him as soon as it starts.

Apart from tests & examination one particular thing can separate the two, it's easy for you to do. Time how long you have stiffness in your joints in the morning & make a note if it's worse at night. You could also keep a diary, see if there are any commonalities over a period of time.

[pauluk60 in reply to nomoreheels]

hi nomore i have told doctor numerous times i don't go to bed as in morning stiff as board and can last most of day nomore that last flare i had got to b more oa i was trapped in chair unless i got son to yank me up and then i could not move i had no control at all of movement when i go physio i cant trust anyone with exercise dangerous i wont be happy if nothing crops up at appointment or test after if lucky enough to get tests well thanks for reply am not bad lad really

[nomoreheels in reply to pauluk60]

I'm not sure staying up is the answer either, do you? You could try what I used to do when my OA was giving me a kicking, exercises in bed before I attemped to get up. I don't mean strenuous ones, just lifting each arm alternately, increasing the height with each rep. The same for the legs, then roll from side to side until you can roll over enough to finally put your feet on the floor. Then slowly to the shower after which I've loosened up enough to go upstairs (our home is upside down, bedrooms downstairs. Not staying put too long of an evening helps too. I get up & move around every hour or so, it helps the joints from stiffening up. But definitely start a diary, that could well help.

[pauluk60 in reply to nomoreheels]

SORRY BUT I DO THINK STAYING out bed is best for me but i also see the point of a good sleep i think this is a point of knowing your own body whats also maddening is you get the better of one thing then something new /old crops up again

[nomoreheels in reply to pauluk60]

You've to do what you think is best for you of course. You're right, often doing what you think is right for one thing often has a knock-on effect on another. You chase your tail, always in the same old cycle. 😔

[Luci22]

How are people getting misdiagnosed ? How can one know if they have been diagnosed incorrectly?

[helixhelix in reply to Luci22]

This can be quite a complicated disease to diagnose as there isn't a single test to prove it. And it is very variable. So doctors have to use lots of clues and their experience to work it out - more like an art than a science.

Sometimes this disease can take a long time to really show itself, years in fact. So a doctor can consider you have early RA, only to find a few years later that it wasn't. One member on this board got a form of reactive arthritis, mimicking all the symptoms of RA, from having a chronic infection. After a year of two when the infection was sorted the RA banished along with it.

From my experience I'd say you know pretty well that you have it. I tried to taper off drugs, and within weeks it was very clear!

[helixhelix]

I've been reading this forum for 7+ years now. In that time there have been maybe a dozen or so people that I can remember who have posted about mis-diagnosis. Not that many when this forum has 22,000 members.

And remember pictures don't lie. So if they have seen evidence of typical RA erosions or RA inflammatiom on scans then that's pretty certain as a diagnosis.

[E_2b in reply to helixhelix]

Hi!

I'm the person who had reactive arthritis, however during this time I had bone erosions on xray and inflamed joints and was thus wrongly diagnosed with RA.....

Luckily for me, a miracle really, once the infection and its source was removed I was cured.

A further interesting point, after I developed bowel cancer stage 3 and received a lot of sympathy from family and friends. In general I found the reactive arthritis much tougher to deal with than the cancer and was shown little sympathy and few offered help when I had "RA"

I really wish everybody the best on this site and hopefully people can find the drugs suitable to them or whatever to stop the pain, erosions and Inflammation.

[dbestdeb]

I thought the same until I came off all of my meds for a medical procedure. I couldn’t deny it when I could barely move without awful pain when I was off the meds.

[Simba1992 in reply to dbestdeb]

Once you are on the meds, I do believe that you cannot be without them. The question in my mind is, do the meds take you into a vicious circle where only more meds can fix the situation when one stops working?

[helixhelix in reply to Simba1992]

I think that isn't necessarily the case. There are several people who come to mind on here who have been successful in working on lifestyle in parallel with the drugs, and have then managed to taper off the drugs. I think Alsopp's wife is one of them, and he recently said she was in full remisssion. There are also a number of people who have paid no attention to lifestyle issues and have reached remission and tapered off the drugs successfully. It is the standard protocol to try to get people off the drugs once a stanle remission is reached. Sadly I've never managed that.

I also think that for people with full blown super-active RA there really isn't a choice if you want to avoid permanent damage. Erosions cam happen scarily fast. So no time to work on other approaches.

[Simba1992 in reply to helixhelix]

Remission today usually means medical remission. What I have read is that remission without meds is very rare and more often seen in mtx naive patients on biologics+mtx, age and gender as well as duration of RA matters. With Allsopps wife she had I believe a very short time of Mtx? He never elaborated on this? He changed a a lot of other things that were in fact supportive for the immune system. In the case of Allsopps wife I believe full remission was possible inspite of the medication, or the short period was of help in calming down the inflammation. I think it is quite rare that a rheumatologist would end mtx medication after a short successful period? This is certainly not recommended and is seldom successful. An other possibility for the med free remissions that also should be considered are the reactive RAs that would in fact disappear without any medication and as you have often commented, have good results with diets.

The super-active aggressive RAs will hopefully in the future be initially treated by biologics+mtx. Where I believe the result would be the best and a lot of suffering would be spared. These supperactive RA with early deformaties are however, what I have understood, about 10% of RA diagnosed.

[dbestdeb in reply to Simba1992]

I believe it may seem that way because the disease is progressing despite the drugs. I believe it would progress faster without the drugs for me. My markers have only gotten better with the meds and my liver numbers normal for the first time in years.

[Simba1992 in reply to dbestdeb]

What drugs are you on? I believe. you are right, the progression can be slowed down, but are you paying a price? And if what is it? That I believe is my question.

[dbestdeb in reply to Simba1992]

I take azathioprine and Enbrel at the moment. The dr is changing the Enbrel to Humira though because my inflammation markers are still in the high range though they have dropped significantly and I’m also having psoriasis issues. She said humira is better with skin problems. No problems yet that aren’t disease related. I do stop the azathioprine at the first sign of a sniffle though. If I don’t, I’ll get a cold that lasts for months.

[medway-lady]

This is so true but then think of the risks if you don't take the treatments. And we don't really ever know the whole story Dr Google can lead people to self diagnose and even worse diagnose other people whilst not having the expert knowledge of the medical proffessionals. I am sure no doctor makes that many mistakes its just the bad news sells newpapers type of thing. If you don't trust your medical proffessionals then if I were you I'd ask for a second opinoun, but do please not worry so much, its going to dive you mad. Perhaps a chat to your GP might help you to be objective. I really do feel for you as its hard when first diagnosed but in time you'll know its not the end of everything but simply a diversion on the path of life. The medication could well give you back a normal life and if not its try again. xxx

[Simba1992]

Yes Veronica, I think it's scary too. Diagnosing RA is far from easy and there are over 200 variations of rheumatic diseases and meds in abundance to treat these. In my view aggressive initiation of cytotoxic meds very early, especially in mild, unclear presentations of a rheumatic disease, is a risk, a risk that hasn't been researched enough. My fear is that a manipulation of the immune response in a situation where the immune system is in trouble could infact make the illness worse even though the symptoms would decrease. On this forum and on many other there are unhappy users of Mtx as well as happy ones, and we know that Mtx works on about 60% and the other 40% have trouble which leads to discontinued use of the drug, but these non respnders often are encouraged to use the drug for a long time before stopping. I wonder what kind of effect this has on the progression of the illness.

[nomoreheels in reply to Simba1992]

As I understand it MTX is used as first line treatment but only where there's been a delay in treating or if findings, high disease activity etc demand it. My first DMARD was HCQ, it was probably explained, though I'm unclear on this, that it was the preferred DMARD because at the time only the joints in my feet were affected & showed erosions. Fast forward another 12 months or so & HCQ stopped working, MTX was added & I've remained on it 9 years.

I've not come across the percentages you quote so I can't comment on that but it does seem disproportionately high considering that studies of MTX as an antimetabolite date back to the early 1950's, trialled from the early 1960's through to the 1970's & has been used as a first-line DMARD since the 1980's. That's quite a lot of testing before it even reached the market in lower doses for RD, PsA etc &, if the balance was so out I'm pretty sure it wouldn't have been considered an option as frequently & if the percentages are quoted in many sites that would be a deal breaker.

[Cheylann]

Exactly how I feel. I was diagnosed with PSA over a year ago and prescribed MTX which I never started as wasn't convinced. All my bloods are normal and only slight inflammation in my bursar in feet and shoulder joint. However excrutiating pain in and around ankles and heel. I do get a bit stiff and a bit of pain in one knuckle in one finger so that was my diagnosis. I have pain in my feet all the time obviously made worse by pressure. Nothing has worked hence methotrexate. Anyway 2 weeks ago rheumy said not to take MTX as she doesn't think my feet pain is arthritis but a mechanical problem so referred to podiatrist. To think I would have been on that harsh drug for a year. However cortisone injections work very well which makes her and me think it's definitely an inflammation causing disease. At this stage, no treatment, still in pain and oh so frustrated. So to cut a long story short u should be very sure before taking harsh RA drugs.

[VeronicaF]

Iam sure they got it right, it is in the family, dads side, I do have all the symptoms and becoming more so each day more and more joints are getting effected.

I can't moan

I have had 5 * treatment from Rheumy

no waiting time or anything

that's one thing I will never moan about the NHS

everytime there has been a crises in my health the NHS has acted very quickly.

GPs though, I have no time for, never go unless I can help it.

but the NHS is the best and we are very lucky to have it.

[Nanabrodie]

I feel exactly the same. My GP on the results of my first blood test said although there was some unexplained inflammation I definitely didn’t have RA but he sent me to rheumy who after looking at the same tests handed me a booklet on RA and put me straight on meds. I was so shocked. I hadn’t been suffering really bad pain but what I had was mainly in my fingers on my left hand and wrist. I must say though the first few weeks of the ten week course of prednisilone I felt like a different person, I could have climbed Everest! But I have been left with the nagging doubt that are they actually right. I have had a second appointment and she has put me on MTX so just a matter of time and see what happens. I asked her what the results of the X-rays were but she brought them up on her screen and didn’t say anything, so I’m none the wiser.