Isn’t Rheumatoid like long Covid?: So the government... - NRAS

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Isn’t Rheumatoid like long Covid?

Cal48
Cal48

So the government has set up a £10million investment for one stop physical and mental services for Covid. Reading about the symptoms it seems to reflect what many who have Rheumatoid also suffer.

It’s time we had as much support and and interest in our well being.

Our Long Rheumatoid needs exactly this . How many of us have had this for years and have to keep bumbling along until we have tried numerous drugs to comply with NICE guidelines. We also need these other services but our condition isn’t new so does not make the headlines

74 Replies
oldestnewest

🥺so true. Unfortunate we will fall further and further behind waiting for all our different treatments like physio etc.Many RA sufferers are still waiting for appointments or changes on medication but still expected to work. I have been back at work 8 weeks and had 6 days off due to flares. Obvious my medication wasn’t working in March. Eventually my nurse returned in July said need to change meds. Still waiting as hospital pharmacy haven’t released prescription because of Covid . I’m not a priority so I just have to wait. Don’t know how long work will continue to understand.

As you say no support before all this and even less now.

Biofreak
Biofreak in reply to J1707

So so true.

Neonkittie17
Neonkittie17 in reply to J1707

That’s a very long time to have to wait for new meds.

J1707
J1707 in reply to Neonkittie17

I was on elerzi . I finished the last of it 2 weeks ago. Asked could I order more. They have closed the account so now on MTX only. Sent an email chasing medication but was told they don’t know how long it will take. Reply was fingers crossed not too long 🙄

Neonkittie17
Neonkittie17 in reply to J1707

Keep chasing them. You are a priority in the rheumatology department I’d say if you’re flaring and can’t work. I had a pharmacy delay too in 2014. My GP had to put pressure on them in the end. I’d send another polite reminder email if needed in a week and hope you’ve heard something. I know these are difficult times but you don’t want to go downhill and as one of my consultants always used to say .. you’re often so much harder to treat if you do.

J1707
J1707 in reply to Neonkittie17

Thank you will keep at it x

I’ve thought this before too especially the fatigue. I read a really interesting piece on poor Jade Gray Christie who suffers from it and said she relied on the chronic health community for practical help with it. I wouldn’t wish either on anyone but it’s an interesting read as it sounded like an autoimmune response. Wouldn’t let me do link off BBC news site but easy to find

I still don’t think the ‘arthritis’ tag helps with ours: osteo- isn’t an autoimmune disease yet both seem to get lumped together under that general heading 🤷‍♀️

dawkin_S
dawkin_S in reply to Kerensa21

I would love it to be renamed - the amount of confusion this would alleviate would be amazing! The number of people I've had to explain to that it's not the same as arthritis. :)

J1707
J1707 in reply to dawkin_S

Same here .. people really don’t understand.. when trying to explain they glaze over all they hear is arthritis.

Cal48
Cal48 in reply to dawkin_S

I agree the two conditions are treated differently and people have no idea how the meds can make you feel

Kerensa21
Kerensa21 in reply to dawkin_S

Me too, even surprisingly med profession at times 🙄

thelmar
thelmar in reply to dawkin_S

That is why so many now refer to it as RD - Rheumatoid Disease.

ITYFIALMCTT
ITYFIALMCTT in reply to dawkin_S

It doesn't make much difference when it's PsA - people still think it's osteoarthritis.

I've tried explaining it's auto-immune - and then I get, "It's fibromyalgia?" and then you end up with, "No. I don't have fibromyalgia or any of the others you're thinking about."

I was just saying that to my hubby last night ...

I wonder in time with all the research going on for Covid and now Long Covid regarding the immune system weather they will come across any 'connections' to RD or other auto immune system diseases that may help untangle and see a way forward for further research, treatment options, sending the disease into remission or the ultimate...a cure.

Cal48
Cal48 in reply to Pippy25

Live in hope!

Elisee55
Elisee55 in reply to Pippy25

I'm reading about some genetic conditions that crate immune havoc on our bodies.

Pippy25
Pippy25 in reply to Elisee55

Our bodies are like complex machines in a way and I am always amazed by the things it is capable of and again what it can withstand with some of the cruel diseases and viruses that invade and as you say create havoc on our bodies.

Here’s hoping Pippy 🤞😊

Hidden
Hidden

Isn't long covid just post viral fatigue syndrome? People can get it after flu etc.

J1707
J1707 in reply to Hidden

Yes but long Covid symptoms is much more complex. A young nurse I spoke to said she had joint pain and stiffness , muscle pain and weakness , tendon inflammation also has a problem with body temp control Now has asthma alongside fatigue . 🤔

HappykindaGal
HappykindaGal in reply to Hidden

No - it's far different. One of my clients, a cardiologist, is now paralysed and on a ventilator. It's not looking good for him at all. He was recovering from Covid and then, bam, he went rapidly into decline. Other people have blood clots, kidney failure, permanent lung scarring - all sorts. Very different to anything RA related. Could be immuno related though for sure.

Cal48
Cal48 in reply to HappykindaGal

I am saying that so much of RA gives many different health problems which go on for a long time and take time to resolve. So we live with it and in our immunosuppressed state we are risk all the time

HappykindaGal
HappykindaGal in reply to Cal48

We do, but we don't end up paralysed or needing a kidney transplant. Not as a rule anyway. Personally, I'd pick RA over either of those 🥰🥰

This man is one of my clients friends. It's so very sad gf.me/u/y4wk4b

Cal48
Cal48 in reply to HappykindaGal

I am in no way belittling the impact of Covid ,There are some tragic cases.

Yes agree with you Happy, it’s far different. My brother in law is still suffering from having the virus in March, early on. He was in hospital for ten days and still isn’t right and hasn’t had follow up appointments re his lungs/scans. It’s still too soon to tell all the after effects isn’t it? 😑 So sorry to hear of your client. 🙏 My sister in law had such a mild version of it and respects it could have been far worse. Neither had any health complaints apart from SIL has an under active thyroid but it is fully under control for many years. x

Fruitandnutcase
Fruitandnutcase in reply to Hidden

I wouldn’t have thought it was like R.A. but I have been thinking recently that long covid is almost like some sort of post- viral fatigue problem - same sort of idea although it obviously can have some very severe and unpredictable symptoms as HappykindaGal says. Pretty awful to think you have recovered then wham!

Hidden
Hidden

Sounds just like normal post viral fatigue, which is extremely unpleasant for sure. It's also relatively rare. In millions of people how many would get it?

I agree with you on the rest of your post though. Must of us here will have had that kind of fatigue for years. No one gives a hoot! Tell docs you feel like you just dragged an elephant over a hill and they give you the so what look.

I'm wondering where all this magic covid/lockdown money has suddenly come from? And more importantly whose going to be paying it all back? And where has the NHS gone. Don't think that's coming back anytime soon🤔. This is worrying.

Cal48
Cal48 in reply to Hidden

Agreed. When they decide on drugs will some of them be the expensive ones that we are denied?

There are 400 000 of us with RA apparently. If we all stood up and shouted about it perhaps we'd be heard. Unfortunately, so many of us are too nicknackynooed. Ironic or what?

Cal48
Cal48 in reply to Gnarli

Sometimes daily living gets in the way of shouting from the rooftops!

I think this long Covid is the result of, yes, post viral fatigue but much of what I've heard sounds like the result of the immune system going wild whilst trying to fight of the virus and thus triggering other chronic conditions in the body like breathing difficulty, inflammation, muscle aches and gastric problems. No doubt all the long Covid sufferers will need ongoing monitoring and medication and diagnostic tests to determine what other possibly long term conditions they may now have. I don't begrudge them this care But what about all the people who have been waiting for tests and treatment and ongoing care all this time whilst the NHS has been concentrating on Covid sufferers? Things have gone spectacularly wrong in the NHS and I have an awful feeling it is going to be a long long time before it recovers.

Hidden
Hidden in reply to Biofreak

Couldn't agree more. More people are dying from a lack of vital treatment than from covid. I took the time to look up the stats. Yes the virus is nasty, particularly for the elderly or people with certain conditions, but that is the case for any nasty virus. It's sad of course it is, and those people should be protected if that's what they want (many don't!) Many want to see their families. This is after all a basic human right. Loneliness can kill too. Perspective seems to have gone right out of the window on this one.

When I look round my local town I do not recognize it. The soul has been wiped out of the place. I feel sick to my stomach when I think of the jobs and businesses lost, the mental health crisis about to hit, and the poverty and lives lost...a minority of those to the actual disease itself. Heart breaking.

I fear that the government has over egged the pudding. The waiting lists for treatment on the NHS are catastrophic!

Just my views. I don't expect all to agree. And apologies to poster. Didn't mean to hijack your post.

Neonkittie17
Neonkittie17 in reply to Hidden

Hi Lottie, I agree it’s awful for people to be isolated. In general I can see and hear so many people angry and upset as a result of the pandemic but some of those probably weren’t the most tolerant of people to start with, but it really has affected many people’s mental health and tolerance. Some have been so scared and anxious and also have lost people they loved to this virus. I just don’t think anyone should underestimate the virus but too many people have not cared if they were spreading it, or not understood and that’s got a lot to do with where we are. I think the Government actually underestimated it/under-egged the pudding at first and ... not proactive enough ... let’s not go there Would take too long.

I’ve shielded since end of February when preparing for an op and more shielding after, so I’ve been inside a great deal of time, although I live with someone so I am not alone. I feel for everyone who was/is alone and is not coping. Two senior in-laws and a friend had a very sad and lonely last year of their lives due to shielding and they became ill quite quickly (not virus) so that was awful but their close family (and care home for one auntie) were trying to protect them all they could before they became terminal. Even when the auntie was in hospital near the end she was only allowed one close family visitor (next of kin) so her youngest daughter could not go in to see her. She has not come to terms with it and probably won’t. Restrictions made were very hard for hospital visiting and it was heartbreaking, but it was done for reasons to try halt the spread of the virus and no one could go against those rulings for visiting etc. Sad to say the basic rights of being allowed to see family in general social circumstances are still going to be taken away unless R rates in high tier areas go down. Even if someone doesn’t mind going out and wants to take that risk etc., it isn’t just the risk they make for themselves by so doing, but a risk to all whose paths they cross.

True that many people are fed up to the gills and lonely, but we can’t decide for ourselves when and where we will go if people are in lockdown/tier 3 areas as the very reason the government .. like them or loathe them .. are doing this is to try prevent amplification of the virus and to stop the NHS from being overwhelmed. Turning that around would mean more routine medical and surgical matters could resume sooner .. hopefully. 🙏

Yes it’s awful indeed .. beyond awful .. that people are having diagnostics and operations delayed/cancelled and also routine treatment they really need to prevent being unwell. Many of us have had RA treatment delayed .. myself included. These treatments would not have been so delayed if the defiant element we’ve all seen so blatantly disregard what was asked, especially this summer, and who didn’t feel the need to stay safe and didn’t see the need to distance and protect others. Or do what was asked to help the NHS so they can do the routine, but necessary treatment and also treat those are desperately in need of operations and treatment.

Apols for the length and going back to the post (Sorry, Cal) I don’t think there will be a big investment in rheumatoid arthritis. Not at all. 😑

💗x

J1707
J1707 in reply to Biofreak

I don’t think the NHS will recover.. unfortunately for many years privatisation has been stealthily replacing many services. Now bleeding money gives an excuse to go the whole hog. No insurance company will touch autoimmune sufferers or other illnesses eg cancer survivors or those with heart conditions etc.

Biofreak
Biofreak in reply to J1707

We are always on the same page J xx

J1707
J1707 in reply to Biofreak

Great minds 😜😁xx

Biofreak
Biofreak in reply to J1707

😜👍

Just one thing as whilst in one way I agree the fact is that Covid has no medications yet which will work unlike RA which has many. So perhaps Covid sufferers which some of us may become anyway need a bit more support because its so new, I'd say how much has the NHS spent on RA medications for each of us over the years. Numerous drugs means higher cost so probably far more more spent is spent on RA than Covid.

Cal48
Cal48 in reply to medway-lady

Yes RA has been around longer but as I say we have to put up with symptoms for longer because of the rules relating to biologicals .

Biofreak
Biofreak in reply to Cal48

Yes you are right. There are strict rules relating to who can have biologic treatments. How many of us have waited and waited and had to prove how we are feeling. Swollen joints counted etc to fit into a schematic that has been thought up by someone who probably doesn't have the disease but who thinks how we feel must fit into a formula that will prove whether we actually need it or not. With Covid it's a done deal. You've had it so you must need it. Would that it was so easy for other conditions like Rheumatoid disease or lung fibrosis. Noooo !

medway-lady
medway-lady in reply to Cal48

I'm sorry but Biologics aren't always the magic bullet and if you read how many people on here go through them two or three then its obvious that they appear to be the same lottery of will it work that DMARDS are. I just think that Covid because at the moment has no medications to relieve the long term effects that it's probably vital for those people to get more help. And the same proposition applies for a lot of other long term conditions. I've not seen a Nephrologist since last year but appointments are made over the phone. Its ok for me but so many are in a worse situation say people who have Parkinsons, Dementia or Cancer. It's simply so difficult for everyone all over the world today and lets all pray that a vaccine is available before too many more people die whether it be by Covid or not.

Actually the rheumatic disease most comparable with long Covid is Lupus not RD.

And Vasculitis seems a big contender too - as do Systemic Sclerosis and Sjögren’s etc. To me this seems inmportant because only when people with one rheumatic disease start working together with all the others rheumatic autoimmune diseases - rather than only referencing their own disease - will voices be heard more.

Rheumatic Autoimmune diseases (RADs) have all suffered from shortage of Rheumatologists for decades. And even then most rheumatologists see and diagnose patients with RD daily whereas the rarer rheumatic diseases get regularly passed over or misdiagnosed as psych disorders by general rheumatologists who don’t know or see enough patients with the others. So the others often bemoan the fact that RD gets more support and has many more treatments than the rarer RADs. Similarly to the way you feel about Long Covid, many feel about you guys with RD! If I had RD, as I was originally diagnosed with, I’d be on biologics by now rather than in a permanent state of inflammatory flare up.

There are posts like this on every autoimmune disease forum. So it’s time for all the RAD charities to come together as one to lobby hard for more rheumatolgists, more specialist centres for those with rare RADs as studying and being more informed about our diseases will help epidemiologists and infectious disease doctors understand Covid19 better. Otherwise the Long Covid sufferers will be unaware that they are now where so many of us have been for years.

I’m trying to say that solidarity in the RAD community is so important just now because otherwise scarce resources will be so dispersed, funding being currently put aside for people with long Covid will run dry and they will just be treated like people with ME have been treated for decades.

And of course rheumatologists will be seeing many long Covid patients and not have time to see their existing patients from across the entire RAD spectrum.

So it seems to me that we badly need our small charities to pull together as one on this in order for more rheumatolgists and immunologists to come through the coming generations of medical students. Re charitable funding and membership - if like me you have overlaps you just can’t afford to pay for membership of NRAS and Lupus UK, BSSA, SRUK and VUK.

So I’d like there to be one RAD charity lobbying for us all rather than just VERSUS - who tend to focus on arthritis and the fact that people who need new knees aren’t getting them. What about people with autoimmune blood disorders and systemic diseases that can and do cause our organs to fail?

The existence of new Long Covid should in theory make us with all RADs more interesting to the medical profession and more attractive to medical students making decisions about what to specialise in rather than less! There may be a silver lining if we stop competing for scarce resources and start pulling together and including those minorities with rare RADs too.,

Cal48
Cal48 in reply to 282523

I think you have a good point my post is my view of my condition but all these various conditions support the argument.

medway-lady
medway-lady in reply to 282523

I was reading an article saying that research in America has proved that RA positive and RA negative although lumped together are actually two separate and distinctive diseases. This may be why people like me who test positive respond better to medications. I know I have something called a pANCA positive response although as yet no one has explained why this is important it might be why I've had a good response to LEF and AZA both DMARD but Benepali is so far not doing anything. And MTX made by hair fall out in handfuls so was stopped.

282523
282523 in reply to medway-lady

This is why it’s important to break free of the many rheumatic disease sub categories and work together under the larger heading/ umbrella term, Rheumatic Autoimmune Diseases. In context of Covid it may well be that antibodies count most for research purposes. But in the context of health economics what matters is that all with RADs put disease distinctions to one side - don’t focus on RA or Lupus or Scleroderma or Vasculitis - we are all ill, take broadly the same drugs and all suffer fatigue and pain.

So let’s focus on RADs and the need for many more rheumatologists across the UK. Long haulers might help us existing RAD patients get better services if we support them and flag up how useful RADs may be in terms of Covid research. Let’s get to the genome!

Cal48
Cal48 in reply to 282523

Makes sense!

The more I hear about long Covid the more similarities I see to RA - not surprising as both apparently involve the autoimmune system. My great hope for the future is that the time, effort and money being spent on this new disease will open up new understanding / treatments for us with RA. Having said that, this is the only optimistic things I can see in the whole situation.

282523
282523 in reply to achyknitter

news.emory.edu/stories/2020...

Hopefully!

Think main reason not taken seriously is due to ones hearing/seeing the word arthritis

and thinking it's a few aches and pains.

Whereas it should be flagged up as a blood disorder and why it effects the whole body.

Good shout by the way :)

Cal48
Cal48 in reply to Happy5

yes people think arthritis is all the same!

So so true My appointment’s been cancelled saw no one since last December and still waiting for a new appointment 😩

Cal48
Cal48 in reply to Mumcon

And yet departments are supposed to be open ,hope you hear soon. Maybe another phone call?

Unfortunately I am in the position of having both. I have to say the Long Covid fatigue is a step up from the RA fatigue. We are all used to pain and fatigue but I am at a new level for both and am just existing at the moment. The Covid has exacerbated my RA and the only solution seems to be steroids. My bloods have come back dodgy and I am being tested for a form of blood cancer. Who knows what is wrong. My lungs are ruined after a pulmonary embolism in April and I am severely asthmatic. The lung function test that was booked for September had to be cancelled as I was not well enough to attend. I am still recovering from another chest infection. Covid is no joke and I am desperate to be referred to a clinic but there isn’t one in my area. The reason being there are also neurological problems involved. To have to go to see a respiratory consultant in one place, go for tests at another, see a neurologist in another and Rheumy in another would be too much for me. There is sense is seeing a team used to dealing with Covid patients who could also provide physio etc It would be just marvellous. However there is no such clinic that my GP can refer me to at the moment.

All I can say is stay safe and don’t catch it. My life is currently ruined!

Bloody hell! That's awful for you. I hope you get well very soon xx

Thank you. I certainly know that the Drs have told me that every department in the hospital is busy with ongoing problems with the heart, brain, lungs, kidneys and liver. I am lucky though I am not depressed even though I am 7 months into this. I believe I am one of the lucky ones. I am alive!

You are! The docs will get on top of it. It's just so hard for you in the meantime. I'm so sorry that you're going through this. It must be hell

Wow, just read your post from a few hours ago.......so am sending you loads of good wishes and virtual hugs :) I'm full of admiration for you... a shame some of the people whingeing about not being able to go to a pub for a drink can't see your post!! and put it all in perspective. Stay cosy and safe...you'll get through this :)

Cal48
Cal48 in reply to pippin_fort

That sounds awful for you hope you get help soon

Mumcon
Mumcon in reply to pippin_fort

Feel so bad for you having to suffer so much Hope things get better soon x

Kags1068
Kags1068 in reply to pippin_fort

I'm so sorry to read what you have been going through. I can't imagine how hard it must have been (and still is for you). Sending you my very best wishes x

Biofreak
Biofreak in reply to pippin_fort

So sorry that you are suffering. I don't know where you live but access to many hospital services are restricted because of ongoing Covid infections. Some of the nightingale hospitals are apparently being set up to deal with long Covid cases but that's not much use if you don't live near one. Also how long does it to take to set these places up? I think the idea is good but I don't think there are enough Doctors and nurses to staff them in view of the fact that ordinary hospitals are having an ongoing struggle to deal with the workload they've already got. Whole things a mess. I really wish you well. Looks like a lot of us are struggling with our own nightmares right now. I wish you well.

pippin_fort
pippin_fort in reply to Biofreak

Thank you..Stay safe!

Long covid is nothing like RA. It could be blood clots, kidney failure, neurological issues, permanent lung scarring and damage. I believe there's a lot of research going into it as no one really knows. I've written about one of my clients in a comment above. What's happened to him is beyond tragic. I'm sure he would wish he had RA to be fair.

How true! I can only agree with what other posts have said. RD is very poorly understood by most people - even some medics. The confusion with osteo-arthritis is widespread, and I find having to explain the difference to people who insist on calling it arthritis becomes tedious after 53 years. Nobody really understands; but how to shake off the arthritis part of the definition is a problem. It's a systemic disease after all, and also auto-immune; something unknown at the time it was given the name way back in the 19th century - or even earlier.

It shouldn't be beyond the imagination of the medical profession to come up with something more descriptive of the disease. Long Rheumatoid isn't a bad start!

Treatments should NOT be delayed under any circumstances. Flares must be addressed promptly to prevent further damage. Excuses are not acceptable. Always keep up the pressure if this happens. It is exhausting sometimes and very wearing - the last thing anyone with this disease needs.

As J1707, trying to return to work under the present restrictions and delays is nightmarish.

And my heart goes out to all those who are grappling with this wretched disease and the present working conditions while taking drugs that suppress the immune system and cause such fatigue.

Try and explain that to your colleagues! How many would understand?

The Very Best of Luck to all of you.

bienassis

Cal48
Cal48 in reply to bienassis

Totally agree

Absolutely yes.

Absolutely well said, i think our disease is overlooked by so many, it’s a hard disease to fathom as we are up & down like yo yo’ s, it not easy for us & I think many of us bumble along & don’t share how we really feel with friends etc as we think they will just think we are constantly moaning, which none of us what to be viewed as. But it’s damned hard when you hands, arms, feet, knees whatever it chooses that day doesn’t work & then of course the unbearable pain. But we all just get on with it & all its confusion. Well done Cal you have it spot on!!

Yes get up today oh my eyes are dry and sore ,oh my shoulder hurts!

Don’t talk about it because I’m moaning again!

You are absolutely right!

I agree, with the above comment. Rheumatoid Arthritis. We should have something to our situation, but some of us don't live on benefits. People like us are suffering most of the time. People who don't have any symptoms, get it. Someone who has applied at least at 3 times no lies, but all the truth was given,but no benefit at all.

People who lie get this benefit get it , not honest ones.

No luck haven't got anything at the moment. Don't know how the Pip assistant"s get the job.

Cal48
Cal48 in reply to embroy

Can Citizens Advice help you maybe you can appeal .

It’s such a contentious issue because routine healthcare seemed to be non existent for many people for quite some time. This isn’t a criticism of the staff, many of whom were redeployed, and working harder than ever in risky situations. The NHS was buckling under the pressure anyway so I think this winter is going to be hard for many people. I don’t think there’s an answer which isn’t very comforting. :(

Yes haven't been on before, but glad others are thinking the same thing about Long Covid. I started having problems after a minor op in hospital, but told when I was sick a week later I didn't have a virus!!!! Fibro 18 years, RA, Sjogrens - 8 years. If Rheumatologist are involved, I hope this new research will benefit the whole auto-immune & Connective Tissue communities.

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