In this article, a rheumatologist reviews the complications associated with Rheumatoid arthritis....the autoimmune condition that caused Fery's death. I was especially interested, because I've bumped into several people who seemed surprised RA could lead to death...as surprised as many are that lupus, sjogrens & their complications can lead to death. I know some of us here are managing RA or RA-like conditions or RA/SLE overlap...and both lupus & sjogrens feature in this article...so here the link is. As usual, am curious what you think about this subject. Seems to me lupus & sjogrens share many of these RA complications
Sorry you are still getting no tick box results.Barnclown and I have messaged each other with a humorous side of sitting in endless awfully designed chairs in corridors with uninspiring pictures to endure whatever the latest buzz test the consultant has decided we deserve and the unexciting results that turn up.I even now deliberately sit in a different chair each time to give a different view on each visit.It is big market stall pants though to go through the effort without quite getting there.Hopefully you will get some proper answers and definite plan soon.
As for me ? Still like a 5000 piece jigsaw without the picture and not sure i havent lost a few of the pieces along the way.Mind you knowing my luck I'll finish the danged thing and it will be a photo of a hospital chair!
So true babs...thanks v much....and so true of so many serious life threatening conditions...way before my lupus diagnosis was recovered, I had a malignant tumour, and I looked relatively OK although my version of lupus meant I was in constant pain & managing multisystem debilitation ..but people 'respected' the 'concept' of my cancerous malignancy: everyone acknowledged my illness...my feeling is that big well known diseases like cancer get lots of PR so 'everyone' takes them seriously....lupus was blighting my life and even so my medics hadn't spotted it...but when my cancer was finally recognised I got respect galore...and after the amputation everyone decided I was "healthy" again 🤔😤😜😘
PS and it was an exceedingly rare tumour of the CONNECTIVE TISSUE (did they need a bigger clue?)
I have wondered why some doctors have dismissed RA ,Lupus and Sjogrens as being it very serious while others seem to jump to it at sign of one flaring,I recently had a nurse ,new one,give me one of those fleeting sympathetic concerned looks on seeing my ever increasing list of hand in hand illnesses and raised markers and wondered why.I dont think many people ,including professionals, really appreciate how our lives are like walking on a frozen pond that keeps trying to melt as we put one foot in front of another hoping there isnt a thin bit at the next step.As long as we keep looking absolutely fabulous ,well we must be fine.Not going to give up my lipstick though 8 )
Great analogy with the frozen pond melting under our feet! Love it x
I think SLE and RA are one and the same disease. Some genes for SLE are the same as R A.
It's not even "overlap". some people only get certain symptoms and later on, you get other symptoms (more like RA)You know that Rheumatology is in dark ages in our generations of genetic research..they are falling well behind our time trying to maintain their status quo thinking we are i*iots...they will never admit that. BC is a warrior. In a way, many of us are the survivors of battling through idio***c Rheumatology, killing us. Thank you for sharing. I know this may sound very negative. It took me decades to receive the treatments. Every time I see other posters not getting there, I guess it reminds me of my experience. Dr spend too much time wondering, autoimmune diseases are just that, hard to grasp. If they wait till you get far more obvious symptoms, damages are done. I have known others who died of RA. Rheumatology ought to be far more proactive when patients go to them complaining as their first complication may not be in joints at all. Many of them are playing Russian roulette.
Your words come from the heart & true experience: reasonable, well informed, sad, beautiful, and so full of dismay. Testimonies like yours are what the medics need to ponder: long & hard.
Thank you for posting. Found this very interesting. I am one of the many with endless symptoms and appointments but no definite answers. My rheumatologist believes I have seronegative lupus but won't commit to a diagnosis. Sometimes find it so hard when someone tells me I'm looking well. I certainly don't feel it. At the end of November I spent a day in the acute medical unit before being discharged with a diagnosis of pleurisy. I have suffered chest pain for years and now the pulmonologist my GP referred me to wants me to have a CT scan, before he will see me. I am reluctant to have it but that is another story in another post. Back at dermatology on Tuesday, (re-referral as my mouth keeps cracking in the corners), and my GP on Wednesday. Have managed to take photos of the oral ulcers and blood blisters, (not an easy job!), I am plagued with so will take them with me to my GP. Keep hoping and praying this will be the year I get a diagnosis so I know what I am dealing with.
Good luck, eeyore: please keep us posted. Well done, getting those photos is no easy thing: I know this for sure (after many hours balancing mirror & camera)!
We should compose a file of all our stories and send it to every GP & Rheumatologist. They don't have to live with this blasted illness day in and day out.
Sorry, I'm sounding negative now - just want to feel as well as I look.
Another example. :(. Hope you get there soon, GE.
Wasn't this the same guy who wrote the obnoxious article about Fibromyalgia sufferers and Lupus being over diagnosed?
From my perspective, and I read this article before you posted it BC - but grateful to you for printing discussion as always - I have only been diagnosed with hypothyroidism and non erosive RA so far. But if this man was my rheumatologist then by now I would have been booted out of his clinic because of my negative autoabtibodies. And yet I'm not hysterical, have had immune problems all my life including butterfly rashes and the smudged lipstick look right up until my menopause.
What I think is that there are some of us who will suffer high BP, heart troubles, Athlerosclerosis leading to possible strokes, kidney and liver, digestive and lung problems caused by systemic inflammation. And yet doctors like Cush lose sleep only over those with clear cut aggressive disease - who do at least meet the criteria for the very most expensive treatments afforded to RA precisely because their's is clear cut, seropositive and aggressive RA and everyone knows about it and is rooting for them to get disease control of at all possible.
Whereas if I suffer from pneumonia or have a stroke or heart attack it will just be chalked up to one of those coincidental things because no one can see or name or treat the underlying process that causes these things to happen for someone like me?
Glen Fray's friend, and I think perhaps his manager, expressed the view that it was the drugs Fray took for RA that caused his pneumonia. I notice Cush hasn't picked up on this?
Sorry BC but I'm now very cynical about this man and his articles. However I do think Fray's sad death from RA associated problems has at least been very helpful to RA sufferers across the globe in one regard. It has made more people aware that RA is a serious disease requiring serious treatments, not just a bit of arthritis - primarily regarded as an older person's disease which of course it is not.
But this is surely because Fray was much loved for his music, not because Cush is jumping in on the bandwagon and raising awareness in my opinion. Tx
Totally agree. And yet there are far more drugs being developed and research being done into RA than the other autoimmune diseases. Maybe it is because the disease activity is easier to determine than the rest,and therefore they can measure effect, I don't know. But there isn't a week passing that I don't read an article of yet another drug or combination of drugs, or gene discovered etc that would improve RA.
I wish they'd focus on lupus a bit more, let alone the other awful diseases such as scleroderma, dermatomyositis etc.
As for this guy - I always think that it's mighty easy to discuss stuff you don't feel. I'll bet he'd change his mind if he'd have even one little finger in pain, let alone the rest of the symptoms that go with autoimmunity.
"And yet there are far more drugs being developed and research being done into RA than the other autoimmune diseases."
It's all to do with patient numbers and economic return. There are millions and millions of RA patients who have an influence in the workplace and can support charities - each autoimmune disease has relatively small numbers. Since they have no idea about the causes of most of them there is no fixed target to shoot at. There is no link - except that the immune system has gone wrong and attacks different bits of you and so you have "different diseases".
Someone somewhere else this morning commented that what is needed is a way to reset the immune system. There is, I suppose, in the form of variations of bone marrow transplant but it is a very drastic method and economically certainly not on.
Hear hear to Purpletop and PMRpro! The reason all these eminent rheumatologists and researchers focus on RA is because if it's caught early enough ie within the first two years of onset at least - ideally the first three months - they can often prevent joint erosion occurring. I'm one example of this.
Joint erosion is very expensive - not only because of joint replacements and so on but because the pain and deformities cost society a lot in terms of disability benefits, biologic therapies, blue badges, physiotherapy and early retirement on grounds of ill health.
Also it's much easier to diagnose so supposedly far more common than lupus. If erosions show up in X-ray then it's very easy to distinguish from other types of arthritis because of specific appearance of erosion caused by synovitis as opposed to PsA or OA.
Lastly - because of all these things - it's the only rheumatic disease that can be diagnosed in seronegative form due to its specific appearance.
Why aren't other connective tissue diseases still diagnosed despite lack of specific autoantibodies in the way RA is? Because there isn't the conclusive proof as there is with erosive RA. Also, because of numbers affected (aprox one in a hundred) the UK charity that focuses on this one disease, NRAS, has quite a lot of clout with a dedicated helpline open five days a week and with a group dedicated to Juvenile Idiopathic Arthritis. This is a good thing in my view (although I'm somewhat bias as a volunteer!) but it does sometimes seem to me that, as you say, research and funding go towards RA, as priority. But research and trials for RA probably help lupus sufferers too because there's so much overlap in symptoms and treatments.
But then more money by many billions goes towards cancer charities because cancer affects so many people. It's about numbers affected primarily and also public sympathies/ politics.
This is why my rheumy told me that dedicated lupus clinics in England may diagnose seronegative patients where Scotland won't - in order to attract the research funding. Unlike my rheumy I'm starting to believe this is a good thing though!
To my mind Conniston's point is spot on. If medics like Cush were less dismissive of patients with milder disease activity and seronegative overlaps and stopped bandying around this diagnosis of Fibro for anyone who doesn't fit their specific criteria - things would be a lot more even where research into autoimmunity and connective tissue diseases was concerned. Tx
"Fibromyalgia" is a get-out for "I haven't a b£**&" clue what it is and I can't be bothered to put my brain into gear and think"! I'm sure there are patients with this faulty pain perception problem - but I'll lay odds far fewer than it looks like. The rest haven't been offered the right management.
I wonder if Cush thinks it is a flattering comparison? There are people who think Trump is wonderful!
Hmmm....I suspect Cush might be a bit like my 94 yr old mother, who recently told me she is "of 2 minds about trump". My mother voted bush into the presidentcy 2x
Surely not supposedly highly intelligent doctors though?! Oops Cush is supposed to be one such!
But having read stories of people's experiences on HU communities that have made my toes twitch more than usual and my hair extra curly - I conclude the world is just a funny place. I need to keep working on thickening my hide and laughing about it all more often. X
No apologies necessary...I'm no fan of his. I just gape open mouthed at the way he blabs in detail about stuff...most of us know some medics think this way...well, he is proving it ....some of his comments are ok....and Yes twitchy: John Cush. He is sort of a Donald trump type, no?😜
What I like is that characters like this Cush spark our brain cells resulting in great discussions like this one. These discussions help me a lot to get my head around all this stuff❗️
anyone claiming that frey's meds caused pneumonia makes me wonder how thoroughly they've understood the finer details of frey's profile. E.g. Before my early onset immune deficiencies were diagnosed, I had lots of lupus patients telling me that my lifelong complex persistent pattern infections were due to my lupus treatment plan immunosuppression meds. Of course, now we know my lupus meds aren't causing my infections. It's a lifetime of infant onset lupus + early onset immunodeficiency going without daily systemic treatment that is causing them. In fact, since starting immunosuppression 5 years ago, I've had less infections....hmmm🤔
Yes that's it BC - he's the Trump of rheumatology!! X
Thank you all for this enlightening and entertaining conversation, I love reading all your comments and comparisons of the way various diseases are dealt with by the both doctors and the general public. I also am of the opinion that our GPs and rheumatologists often get to the stage where they hit a brick wall regarding what they can do to help with our pain and fatigue. When my Gp said that the severe headaches I suffer with have reduced in no that I should accept that and deal with it. Then my rhymy nurse tells me that the excruciating pain in my tail bone is very difficult to treat and recommends a rubber ring to sit on and if the x rays show any damage sustained that will probably be due to the steroids I am on. Sometimes I feel that the treatment we receive is worse than the actual disease it's self. I am always hopeful that someone studying Ra or lupus or any of the autoimmune diseases will find a way to reset our immune systems and that it can be used by all of us and then we can say, I had lupus or any of the related diseases.
Coco...my symptoms of lupus seem better through diet, vitamin and mineral supplements and oils. But, now I have terrible arthritis in my hands and feet. My middle finger has been clicking when I try to bend it. Ugh! My aunts had RA, and lived into their late 80s and 90s. I wonder what they did right? Maybe it was exercise and eating right. My aunt showed me the exercises she would do on a wall to keep her fingers mobile. Interesting that she showed me. I was very young.
Many of us were surprisd that RA could kill someone. My mom, however, died at a very young 48 from colitis turned septis. I always worried that I would die young like my mom, but didn't realize that it might very well be a real fear being that genetics seem to be a large part of this disease in my opinion.
I am 52. I also have a clotting gene from my dad.
Hard not to be angry when we inherit these wonderful genes from our parents. But, then again, their lives weren't great. My mom didn't have a full life.
Am so glad your lupus-type symptoms are responding to diet & supplements: 👏👏👏. You have plenty to manage, even without those symptoms. Living with an abiding sense of a genetic predisposition illness (RA, colitis...any condition) is tough....especially when you have symptoms yourself. Maybe I'm willfully positive, but I cope by trying to focus on the more positive stuff I've inherited. You're doing this too, aren't you - eg remembering your aunt's finger exercise tips (a beautiful example). she sounds resourcefully positive...my feeling is that over & over on here you've shown that you've inherited her resourcefulness: a wonderful inheritance indeed
you're asking a BIG question! there were moments during this discussion when I found myself feeling angry...but that was about medics messing us around...about my decades of medics missing evidences of my underlying early onset immune dysfunction while they diagnosed & treated secondaries. My feeling is that I need a bit of that kind of anger in order to find the energy to be my own patient advocate ... this anger includes a natural resentment at bearing the inevitable pressures involved in navigating our massive lumbering health system as effectively as poss...so a degree of resentment does actually seem to fuel me in a positive way too. i'm only human: i do feel anger & resentment! but I guess I'm mainly focusing on using the energy of these emotions in as pos way as possible: at the "keeping on keeping on"...at helping myself, and anyone i care about, to work the system while getting as much joy out of life we can... this is life with chronic incurable illness ....and maybe this is where, personally, I'm continuing to go from here.
So, where are you going from here? You're asking a big question...it's the kind of question that could launch a fantastic discussion...why not post that here: go natura, go: cut & paste! I'm sure you'd get great replies. for me, it's these wonderful discussions that provide some of the best fuel...it's this solidarity that keeps me going...the perspecitve, insight, guidance & inspiration i get here are invaluable. gosh, me being rather too philosophic at 8 am! and i haven't even begun to get into the 'fear' thing...
🍀😘
It is a hard thing to say on these communities but I feel it needs saying nonetheless - the drugs people take for all these diseases can be killers too. I'm a highly sensitive soul where chemicals are concerned but two out of four DMARD drugs have given me anaphylaxis and one gave me what I'm fairly certain was pancreatitis. So it seems to me that Frey's old friend might have been right when he said that he feels it was the RA drugs that killed Frey rather than the disease itself.
People with RA often refer to the bad old days before Methotrexate and Biologics when relatives could barely function for pain and imobility. It's a balancing act for rheumatologists and their patients of course but I can think of many who have lived to a pretty old age with RA, despite being riddled with eroded and deformed joints. Famous artists include Renoir and Willam Boroughs and I met an 82 year old woman recently who has never even been offered disease modifying drugs despite acknowledged RA which flares occasionally. Her hands showed the very classic RA drift/ ulnar deviation but she was quite happy rubbing ibuprofen gel and having the odd steroid injection and didn't even know about methotrexate etc.
There will be some who suffer from very aggressive disease that can affect their vital organs of itself or affect the eyes or who have overlap so everything is affected. But RA is primarily a disease of the smaller joints and I'm not sure I'd take any other powerful drugs now unless I thought my eyes or vital organs might be affected. I certainly think Natura is doing a great job using natural methods albeit without much choice in the matter. Xx
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