Osteo or rheumatoid arthritis?

Barmey I have OA and have joined an arthritis FB Group, and have learnt from other members that the blood test for RA is not reliable.

You know a lot of what you describe could be me. I have PBC (an auto immune live disease) and few other auto immune conditions. I always thought I had RA because of the pain in my joints as you describe. I had a blood test which was positive but another which wasn't. I was told I didn't have RA but every time I go to the eye hospital the first question they ask is how is you RA, its not on my notes so why do they ask. Also `I attended a hospital in Malaysia once when my husband was an inpatient. I wanted to ask about terrible joint pains. I went in sat down put hands on the table and the first thing he said was how long have you had RA.
I just don't know what the answer is, so I live for the good times and get through the flare ups resting.

Hello watermeadow, I hope you get some answers - definitely worth asking for a referral. I was diagnosed with seronegative RA and injected methotrexate for several years. I am now "in remission" according to my rheumatologist as there is no sign of active disease but I have the same pain and problems as before and worry that I've been discharged. My gp is meant to monitor my ongoing OA and Fibromyalgia but I can't tell the difference between the various conditions and the pain and disability they cause. It's good, though I wouldn't wish these conditions on anyone, to read these posts this morning - I hadn't realised that so many of us in here suffer from these horrible conditions.

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for everyone coping with wretched illnesses, especially the hidden ones where people only get to see you on better days so have no idea of what you have to cope with.

TwiceAsNice ?

Thanks twiceasnice x

Sending you all my sympathy. My friends daughter was diagnosed with this in her thirties and I know how much she suffers from talking to my friend. I hope you can all find the best treatments possible for yourselves. People can be so tactless can’t they?

Me too Iam64, lots of clear blood tests, but my rheumatologist said that not everyone has a positive blood test and all the other symptoms are taken into account.
I was initially diagnosed as seronegative but now have seropostive RA. It took years to show up in my blood. I too have other auto immune conditions and thank God for the amazing NHS!
I have a fantastic rheumatologist, but he is is retiring and I'm devestated.

A blood test doesn’t always confirm RA. I had at least eight blood tests between 36 when my swollen hands, feet, aching exhausted presentation had my GP sending me for bloods. On one occasion when I was told the tests were normal, I asked why I felt so ill and why I had swellings on my joints and no strength in my hands. The gp said he did t know “but just thank god it isn’t rheumatoid arthritis”. Eight years later, I almost lost the sight in an eye because of inflammation. The GP I saw that day had a special interest in RA and referred me to a rheumatologist where various tests confirmed RA and other auto immune conditions. The consultant told me that they now understood normal blood tests could occur in active disease.
Watermeadow, given your daughters diagnosis I’d ask for a referral to. Rheumatologist x

What I meant to say was that no two patients will be the same, so our experiences of treatment and medical personnel will be different, as will our attitude and perception of the condition.

However, supporting each other is just as important as any medication.
Unless you have this condition, you cannot begin to understand how it affects sufferers physically and emotionally.

watermeadow ask your GP for the appropriate blood test. This will show if you have RA.

RA is an aggressive and progressive disease. There is scientific evidence that RA does not burn out.
It may stabilise if it successfully responds to drugs.

My RA consultant, my cardiologist and my respiratory consultant have all told me that RA is progressive and the complications it brings will eventually cause my death.
In my opinion and listening to what my doctors have told me, making a statement saying: RA does eventually tend to burn itself out is inaccurate and gives false hope.

A quote from a 2018 German medical paper I recently read, entitled Getting older with rheumatoid arthritis-is there a burnout of the disease?

There is no evidence for the existence of a "burnt out" RA with stable inactive disease without drug treatment in the long-term course. In a modern treatment strategy of RA following the treat-to-target principle and aiming at remission, the term "burnt out" RA should no longer be used.
In end stage RA, the inflammation may stop, but the damage continues, usually resultung in joint replacement.

It's a hellish condition.

Thanks Mincub

I was told that by my rheumatologist that it burns itself out and that the Rheumatoid factor diminishes in the blood although you can be prone to ‘general flare ups’.
Nowadays they prefer the term remission.

www.arthritis.org/living-with-arthritis/treatments/plan/remission/rheumatoid-arthritis-remission-and-relapse.php

www.ncbi.nlm.nih.gov/pubmed/29713865

Rheumatoid arthritis (RA) is a chronic inflammatory disease. ... It is often said that RA "burns out", implying that the inflammation decreases spontaneously in the long term, mostly severe course of RA and reaches a stage with a stable absence of joint inflammation, even without treatment

Mincub. I have RA and have read all the literature, but have never got the idea that it eventually burns itself out. Surely it is for life? Previously I had Polymyalgia which does disappear after some years.
Can you tell me where I can find evidence? It would be nice to think there could be an end to it.

Methotrexate did it for me ...treated the RA and nearly killed me, left me with stage 3 kidney disease, liver problems and Lung problems to which there is no cure. As an added bonus took all my hair which has grown back thin and ...well it’s not me. I have had so many people like you say ‘ oh I know how you feel’ I’m not as polite as you ..my answer is to be honest you haven't got a bl##dy clue, after 40 years come back and say it again ...you might be closer to the truth!
It’s an awful disease that most people think is just aches and pains, and don’t get me started on some patronising doctors/specialists who insist they know what I’m going through when clearly haven’t touched first base.
All I can say is to get through it you have to do what you need to to make life easier less painful and a little more happier that’s about all you can do until it’s had it’s fill of you and moves on.

Marydoll, hello! Six years ago I had a serious reaction to one of the biologic drugs, my legs, hands, feet all splitting and bleeding with severe psoriasis. The dermatologist I saw said the reaction was "rare but well documented, one in every 10,000 people prescribed react like this"
I'd had the best twelve months for years as a result of the benefits of the drug so hey ho. I'm also relieved because the dermatologist said I was probably stuck with the side effects for life - they did go away and I'm v careful to moisturise, so far so good.
I was initially reluctant to take drugs, tried diet etc. My rheumatologist told me that it's an aggressive disease which needs aggressive disease modifying treatments or you end up very ill as a result of the raft of things it brings with it. The biggest cause of death for people with RA is heart disease. Who knew, except those of us who learn more than we every thought necessary!

Great post, Iam64. I couldn't have put it better!
It's the physical exhaustion that really gets me. Like you, I will not allow it to define me.
In April, I nearly died after suffering an allergic reaction to a new RA drug and thought it was all over for me! It has caused heart problems, yet another thing to cope with
However, I decided to fight back, it's been slow, but I'm getting there.
It is so good to find others who know what it feels like. This condition is not just a few aches and pains.
I look so well that. you would never know I was unwell
My motto is, Carpe Diem!!

I empathise with you all. I have Lupus overlaid with OA and apart from the pain which I'm used to this damn eternal tiredness is the thing that gets me down. Earlier this year I decided to ask for some Prozac which is certainly helping me cope.

It's good to see the straightforward, honest and in my experience accurate descriptions of the impact of inflammatory arthritis given here by those of us who live with it.
I don't want it to be the thing that defines me and avoid saying much. I bite my tongue when people say "oh I know how you feel now, I have osteo arthritis in my knee". No you have no idea how I feel. I ache all over all the time. My muscles, tendons and connective tissues are all problematic. I'm tired beyond imagining when its in flare up. Small tasks all need careful thought. I had a period of several months some years ago when I couldn't hold a potato in one hand, in order to use the special potato peeler in the other.
New medications have made a massive difference, I have my life back but - early nights essential. One busy day followed by one when I try to get some rest. The fact I've had inflammatory arthritis since my twenties means I'm more likely to have osteo arthritis and osteaporosis.
In addition, I have inflammatory eye disease, kidney disease and heart stuff, plus the ongoing worry about lung function. RA/other forms of inflammatory arthritis don't visit alone, they bring a raft of other auto immune conditions with them.

The research and the rheumatology departments though - let' be very grateful. I certainly am. If I lived in the USA my treatment would cost upwards of £2000 a month.......

Mincub, Your last line sums up the disease exactly.

After a recent spell in coronary care, (as a result of an allergic reaction to a new RA drug), the cardiologist told me the majority of RA patients die of heart failure, not RA.
My biggest worry is rheumatoid lung, which is terminal. As I have chronic lung disease into the bargain, I have to have my chest monitored too!

It is indeed an awful disease, as after all this time, due to comorbidities, mine is still difficult to manage, despite lots of intervention. No two cases will be the same.

Please come back and tell us how you are getting on, Watermeadow.

I have had RA for 40 years diagnosed at 24.
I also have osteo in right hip right shoulder left wrist, left ankle and both knees.
RA as I’m sure you know has lots of other symptoms other than joint pain, as it’s an immune disease. I used to feel like I had the flu all the time, every day , day after day! RA does eventually tend to burn itself out, but the optimum treatment is to contain inflammation and reduce joint damage.
If you feel that you could have RA (known as a young woman’s disease) ask to see a rheumatologist and he will test your ESR for inflammation as well as for the Rheumatoid factor. RA is not hereditary but it is genetic. My eldest son had both knees replaced in his 30’ s, yet my youngest son has no trace of it. It’s an awful disease causing pain, lack of mobility, irritability and depression, but it doesn’t kill, just makes you miserable.
Good luck on your journey.

I have RA and was diagnosed in my late thirties. It should have been diagnosed much sooner.
It was only after being diagnosed with osteoporosis, that it was diagnosed.
I only discovered after her death, that my mother and her siblings all had it and Lupus into the bargain.
All those years of painful joints suddenly made sense.

Please see your GP, I'm trying to persuade my daughter to visit her GP, as she is now experiencing symptoms.

water meadow, it's good news that your daughter has an early diagnosis. The treatments for RA are wonderful now and improving all the time. I started one of the biologic treatments 8 years ago, it gave me my life back.

A hip replacement at 53 seems young to me. No it isn't too late to ask to be referred to a Rheumatologist. Tell your GP about your daughter's diagnosis and ask to be referred. Best of luck.