after joining in here and spending endless hours reading posts and comments I am beginning to question RA as a true disease ...why you may ask? This is why....the GP's don't seem to know About RA or how to treat it, rheumatology seems to dish out drugs like sweets, I am left to decide If I have an infection, I have to go to Drs to get monthly blood test results, I have to see if my crp and esr levels are elevated, i have to contact optician due to the side effects of hydroxychloroquine, I have to contact rheumatoid nurses, I complain of the constant crippling pain in my feet toes n ankles only to hear "mmmmm" I have sorted pediatris for removal of toe nails (which I am desperately still awaiting) on here I read the same issues. So why is it when on morphine and other seriously kick ass meds do I feel RA is a somewhat mystery illness, who does know the answers, why do our GPs (medically trained) not know much if anything? Although I have found numerous comrades on here and at last I don't feel alone, it has equally added to my fear I am alone with this horrid disease. My father passed away in January and among his medical issues RA was one of many, we were diagnosed two months apart (dad being the first)the Drs at the hospital told me the lining of his lungs had been affected by the RA as was his heart lining and yet when I approached my rheumatologist she dismissed this, so I did what most 21st century peeps do and googled the question and low and behold on the RA website it said yes this can happen. The confusion ensues and what with all the cocktails of meds confusion is a daily issue. Where to go from here or what to do the answer is but a cloud ☁️ I feel I have no confidence regarding RA but will continue to do "as I'm told" & continue with my breakfast cocktail of pretty coloured tablets, I will inject every Monday methotrexate, I will continue to manage my disease, I will continue to self diagnose infections and I shall continue to have my illness disrespected by ignorant people, but I will, thanks to this forum, refer to RA as RD from now on .... thanks to this forum I no longer feel alone but it's kind of depressed me even more to read so many of you having the same issues regarding Medical help!!😤 I am an optimistic person and have always had faith in our medical professionals but since diagnosis 5 years ago slowly I feel it's my job to be judge jury and executioner regarding medical needs ....I am but a hairdresser and a mummy and never made it to med school 😋But it's my job to diagnose and make the decisions re my condition, wouldn't mind if I got paid but hey !! 😜
Is RA real....: after joining in here and spending... - NRAS
Is RA real....
The best advice I was given for treating the Drs was to become an expert patient.
However this is not straightforward, as you have noticed. Recently I have been reducing my pain control meds to see what pain they are actually controlling. A clearer head resulted.
Stress seems to be a common cause of flares, so I work on smiling, laughing when I can and staying in, away from people ( a common cause of stress ) when I can't, I feel that stress is the key whether RA is a real disease or not.
I follow your drift. If this horridious disease isn't real, then one day we will all wake up and the nightmare will be gone.
That would take a lot of laughter but I do believe that it is possible. Changing ones status from Victim to Victor, is more than a dream.
A sad post but its not that RA is alone in this type of diagnosis tell me someone whose doctor does not say " and how can I help you today ?" in other words, you tell me what you think is wrong and I'll treat it. lol
I know its hard but I think a lot of medicine is simply trial and error if the common cold virus is so hard to treat etc....
Stay positive and good luck.
That's it exactly .....these days GP's seem to have no ability/ interest in diagnosis! With RA especially it seems to be OK for a GP to actually say they know nothing about the disease, then wait for the patient to explain their Treatments!
I hardly bother going to my GP....I save it all for when I see my rheumy.....luckily I don't seem to have any other health probs.
But if what I read in the papers this week is true, we ARE all going to be deciding our own treatment very soon........after being scared to death by being told everything that can go wrong if WE make the wrong choice!
Funny thing is that I get more feedback and feel more supported by my GP than my rheumy. Oh well. We are our own best advocate so speak up! 
As an oldie I remember the days GP's had time to take a case history ....not hear just one part of the present problem in the 10 minute consultation most GP's can manage these days.
Especially where RD is concerned when the first sign can be a wonky finger, a painful jaw or backache!
yes, that's right. Nobody knows your body and how it reacts better than you do. You have to be very pro active in your own healthcare. I was diagnosed with RA,or RD if you prefer, and I have read a lot of information, most of it from this website which is a great site by the way. I am from the US and I have a rheumatologist who is very thorough. From what I understand, there is a lot of different arthritis that come under rheumatoid. Some of them are real arthritis, like osteoarthritis. But rheumatoid is really a auto immune disease. I am on 15mg of methotrexate once a week, folic acid and meloxicam for pain management and it all seems to work fine for me. I was lucky and didn't get sick. There are a lot of stupid little things that come along with this disease, like rashes, weight gain( for me). I would say to follow this forum and any issue you have, you can bet someone here has it and has dealt with. I love this site!
Many valid questions there but I feel there's far more unknown than known.
A few more facts & questions;
Less than 700,000 (1%) of the population in the UK have RD.
It affects 3 times more women than men.
Some have it from a young age but the majority are diagnosed around the age of 40 to 50 (hormonal changes?).
Some are diagnosed after sudden early onset, others after a slow burn.
Why are the affected joints more often than not symmetrical?
RD is systemic, it doesn't just affect joints, why?
Why do certain weather conditions affect us?
Why does stress more often than not exacerbate symptoms?
For some there's a genetic link, others not so, why?
These are just a few off the top of my head, many other questions remain a bit of a paradox, some can be explained satisfactorily if not conclusively but far more remain a quandary. Even though it may not seem so (once you've received diagnosis) but GP's see relatively few patients who potentially have RD & why there's the push to educate primary care in recognising symptoms in order to take the first step of testing for RF. It's known that early referral to Specialists & treatment the better the prognosis so if the GP has some knowledge of autoimmunity the better the chances of just that. For example, the GP who diagnosed me had general medical posters on the wall of her consulting room but the only specific anatomical one was of rheumatoid arthritis, I concluded she had a special interest & why from only initial examination of my feet she suspected RD & took RF & anti-CCP. So from my first signs to diagnosis was 6 weeks, 4 of those was me delaying making an appointment & waiting to see if they got better!
Hello Stroky. I am so sorry you feel like this. Do you think a change of rheumy might be on the cards?
There's a shortage of rheumatologists worldwide plus the NHS is stretched of course. And none of that helps with patient / doctor communication, it's easy to feel we're being 'processed'. But some rheumys are so efficient & focused that you can tell they're really thinking about the impact of the disease and the best way to go with treatment.
I agree with Daviator that becoming an 'expert patient' is also the way to go. However that is not the same as understanding everything about the disease, there are always going to be confusing times for us and even for our doctors because this is a confusing disease that can be difficult to treat.
Bless you all and thankyou so much for taking the time to reply to my morning rant!! The ability to smile is a natural gift for me and I will always see the light side of issues but I suppose now reading I am not alone re GP lack of knowledge has given me the kick up the bum I've needed to get on with things and carry on self diagnosing now I know it's not "just me!"...behind each post is a real human with real emotions and real pain and to be able to read so many posts relevant to myself is the most warming feeling ...virtual hugs and understanding mean so very much....hope you all have a wonderful smile filled happy pain free day ✌🏼️🙌🏼❤️️❤️️
I suppose that I was lucky. I made an random appointment with a GP. Not my usual Dr, I had never seen or heard of her. But, here's the important point, she knew lots about Rheumatoid Arthritis and what she didn't know she could ask her hubby who is a Rheummy (all questions are asked without revealing my details).
Unfortunately, she is now on baby leave. So that I have put up with the others for now.
I struck it lucky with a random appointment too. I went along with pains in my hands and fingers and a list of things I couldn't do - pull out plugs, hold bowls etc. I found it hard to get going in the morning - you know the sort of stuff. I also had a constant deep burning pain in my neck and shoulders - I'm not sure if I even mentioned that.
Anyway, he asked some sensible questions, squeezed my hands in the right gut places, told me what he thought and what he planned to do - fast track referee to a rheumatologist and wrote out the paperwork. I said that I didn't have bent fingers or nobly joints and he said that with proper and swift intervention there was no need for people to get that.
I saw the rheumy, started three months steroids - unfortunately I developed T2 diabetes but I've fixed that - then I started hydroxychloroquine, I've been on it for a year now and I haven't looked back.
When I come across friends who have arthritic joints and whose doctors haven't treated them although I have come across some who haven't bothered and just accept that they have 'old lady fingers' as someone said to me recently, I feel SO lucky that I accidentally found myself being treated by a doctor I had never seen before and got such a great result.
I agree with the others who say you have to inform yourself about your condition and speak up for yourself. Don't be someone who just 'gets treated' - learn and question your doctors and endos and move on if you don't think you can work with the ones you have at present.
I can identify with a lot of what you have written Stroky. I feel my GPs see me as the rheumatologist's problem, not theirs. From their responses to me, I feel that I know as much about RD as they do. And I have far more questions than answers.
I've been advised not to take NSAIDs, but haven't been offered anything else and now my inflammatory markers have crept outside the normal range for the first time. But at the same time, my kidney function has finally returned to the normal range for the first time since starting taking anti-inflammatories last summer. (And I have only been taking a single dose of Ibuprofen a day.) The blood test report from the GP stated dismissively "abnormal, but expected". My rheumatologist never got back to me about what I am supposed to do about my increasing aches, so I am left to find my own solutions.
My biggest fear at the moment, with raised inflammatory markers, is that my palindromic rheumatism has developed into full RA. Other days I suspect my achiness is caused by undiagnosed fibromyalgia. One day last week I had some swelling around my right ankle, and I imagined my kidneys were failing (due to the drugs), but it was gone the next morning, so it was just one of those palindromic things.
I just wish I had the answers.
Dear Strokey,
I think you sum up very much to the point what so many RA sufferers must feel that have ended up in the med rollercoaster and have not been able to reach clinical remission, which very few do. You are in a situation where the specialists are not able to do more than what they are already doing to control your symptoms. They have no means of curing the disease and seldom have time or enough knowledge to help you understand what is happening, and has been happening for a long time before your illness reached a stage where diagnosis was made. In my opinion every AI patient should be helped to understand his/her individual situation and understand the multiple ways there are to support your healthy immunesystem, along side meds or without them. There is an abundance of new research and knowledge about the players in AI diseases, knowledge that patients should be able to use when they are helped to take responsibility for decisions concerning their treatment. As a patient it is not easy to find on the internet what you need to know and even harder to intergrate the information into something that makes a sensible whole that can help you. So many of us have spent endless hours with this quest, tried this and that and often, frustrated, given up. I still haven't and to my enormous delight I stumbled accross a newly published book where the scientist has really done the job of integrating and explaining and giving ways how to help your body. The name of the book: " The Autoimmune Fix" by Tom O'Bryon. This is a book that I believe could be of great help to many of us.
Best of luck,
Simba
Hiya Simba. Re the very few who reach clinical remission, can you tell me where you came across this info? I've been looking for some sort of info 're success rates, length of time it takes in relation to speedy diagnosis etc & not been able to find definitive info. Thanks.
When I seemed to be in a remission my (lovely) Rheumy shook his head when I asked if it might be permanent & said maybe one in a thousand go in to full remission & he (50ish) has never had a patient who did!
He still hasn't.....I flared again & have just started on biologics......so I now just take it day by day ...but still hope I might be his first patient to go into full clinical remission! But I am not holding my breath!
Thanks for that AC, let's hope you achieve it on biologics. It's research stats I'm after from Simba1992 as I often come across that with the meds available now many more are achieving remission but I've not yet found figures or percentages. At one time I did get below 2.6 but I don't recall being told I was in remission, that's why reason for asking as well as being nerdy!
Well I was fine after first infusion, but after second I am now feeling rotten. I am hoping I have picked up a bug & it's nothing to do with the treatment. Have apt with Rheumy on Monday to make sure what's going on.
Do let us know if (& where.) you find any good stats on full remission!
Let's hope it's the norm & things improve, or if it is a bug it doesn't hang around. Simba's on the case!
Hello nomoreheals,
Sorry that havn't responded yet. Have a good link for you that elaborates on remission. Not so straight forward. Still looking for it. Get back to you later.😊
Thanks for letting me know, no rush just as & when.
Remission does not seem so straight forward in RA. Here the link that you might find interesting. medscape.com/viewarticle/75...
Oddly enough I did find an interesting paper & it's also on Medscape. It's from 2011 but still interesting reading medscape.com/viewarticle/75...
Oh it's the same one!!
😊 seems to be! Shows how arbitary the criteria for clinical remission still is, and how susteined clinical remission is still rare.
Have you looked on the Mayo Clinic website...there is a fair amount of info on RA/ RD research on there.
Thanks, though I tend not to rely as much on sites supported by adverts, cynical I know but I find they can be biased. I do have access to scientific sites & med pro sites so tend use those mainly, & NHS choices & UK sites, although I do find PubMed helpful.
I was first treated by a professor which a sub doctor told me about when I was sick and get my blood tests back and he said really only way to get with him is private!! He was such a nice guy and an expert in everything about RA I was so luckily! But now he's retired I feel out of the loop a lot more! Tho after 7 years my GP actually seems to care more and starting to understand my lupus and RA together. I think your either lucky or not. But finding a doctor that knows and stufied RA is the best way and in Northern Ireland it is hard but it's worth it.
I was diagnosed because I wnt to the GP because couldn't move my thumb he decided on blood tests and then a referral when my anti ccp came back slightly elevated. All the GPs in my practice are fully aware and have been brilliant no above and beyond constantly, Rheumatology consultants are not flailing around second guessing they wouldn't survive long if they were. Masses of research ha so been done and is being done in to RA/RD the medication is based on the NICE guidelines and a strong evidence base. What is an issue is people surfing the net then making decisions based on little more than what happens to other people.
I think my rheumy summed it up perfectly when I went in saying why do I need to take all this and I know people who've been really ill on X, y and Z. She said for every person saying that I can show you one that is grateful for it. We are treating your disease, not your colleagues, not Fred's RA. Just yours. If something doesn't work for you, we look again. Everyone's disease is different, there is no typical patient. I prefer to think of it rather as a spectrum than a specific. A bit like Autism. Your body is yours and reacts in different ways and requires different treatment. What a good team should be doing is monitoring and working with the individual.
There is a long way to go like a lot of conditions but if my grandmother was here now she would be stunned by the advances in treatment. For her aspirin and having her leg broken and set permanently so it couldn't be bent were her only options. My consultant said that when she started in rheumatology in the 1980s, half of patients would come through the door in wheelchairs, now hardly anyone does. It's hard, horrible drugs, lots of pain, lifestyle changes but the alternative is an awful lot worse as my grandmother would have confirmed xx
One of the reasons my first doctor told me don't be googling your self stupid! It will just scare and annoy you more then it should, ask me questions. Everyone is different take to different drugs just how us humans work, 😁
When I Googled a drug I had been prescribed when I was in USA it said "This drug often causes death" luckily it didn't kill me......in fact it helped.......I can't see the need for posting something dramatic like that to scare people silly!
After all Aspirin could kill if given to the wrong patient!
You are very fortunate to find a gp practise so well informed, I was diagnosed very quickly and within 6 weeks I met my rheumatologist with whom I have a great relationship with, she is amazing and I have never trawled the internet for answers aside from desperation as sadly the gp who diagnosed me retired a few months later and over the past 5 yrs have had at least 5 locums, I have just 3 weeks ago undergone surgery on my right shoulder and I completely agree medicine has come on leaps and bounds re treatment of RA, this is why I think I'm frustrated at the lack of knowledge in the world of gp's. I am not on social media and I am computer illiterate due to choice, I don't not read side effects leaflets and never have only if I feel odd re meds, this is the first time I have joined a "group" to do with RA ...I chose at diagnosis to just do as the experts advise as that is what they are "the experts" and not to google ra and never have I don't want to I don't wish to I'll just take each day and each monthly blood test as n when, apart from the one time, but rheumatologists are few and far between like you say equally so are appointments, so I do feel alone sometimes with this condition and my body has changed dramatically over the past 5 years , maybe not to the point of disfigurement but it has changed none the less...
Stroky, what's the story on your toenails? What's the problem and what's causing you to lose them?
Not what you're looking for?
You may also like...
RA
?RA
Is it RA?
What if the RA is not RA?
AS and RA
Palpitations with RA?
RA and getting pregnant
RA anxiety and ashwagandha
