Could a virus be "involved" in your RA?: For a long... - NRAS

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Could a virus be "involved" in your RA?

8080 profile image
8080
42 Replies

For a long time I believed that a harsh virus that lasted "for -EVER" ( Christmas 2014 ), was "when" and possibly "why" my pain and "flat-out- fatigue" began. It took over 2 years to get it diagnosed, but I always looked back on that virus as the starting point. Jillian, didn't you say it was during a virus when your pain stopped? Anyone else make any connection between RA and a virus? Just curious.

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8080
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42 Replies
Simba1992 profile image
Simba1992

There does seem to be a connection.

emedicine.medscape.com/arti...

Lucy11 profile image
Lucy11 in reply toSimba1992

Viral arthrtis and RA seem to be two different variation. As the article states:

In general, viral arthritis is mild and requires only symptomatic treatment with analgesics or nonsteroidal anti-inflammatory drugs (or, occasionally, low-dose prednisone). In some cases, antiviral treatment is available for the underlying systemic disease.

Even though, there are a few other studies I've come across that are looking into a connection with RA as well.

Interestingly, I've never had a viral infection while my sister had the mumps and also had mono (Epstein Barr) and she does not have an auto immune disease. Go figure...

Simba1992 profile image
Simba1992 in reply toLucy11

The triggering of RA has so many players that come together with the unfortunate outcome☹️ For a virus to trigger RA there has probably been an underlying inflammatory condition for a long time.

in reply toSimba1992

I wonder how many people get diagnosed with RA, when it actually is something else?....just curious, I don't mean to imply that it's very common.

Simba1992 profile image
Simba1992 in reply to

Yes I have been wondering that myself too.I am quite sure that there are a number of people who have been diagnosed with RA who in fact have had thyroid dysfunction and chronic estrogen-progesterone imbalance or reactive arthritis, PMR among others and have been put on agressive RA medication before the diagnosis is clear. I also have been wondering if premature use of hard meds in fact triggers the outbreak of RA in cases like these. All kinds of theories comes to your mind when there seems to be so many unknowns in this illness🤔

in reply toSimba1992

I'm wondering because in 2014 I was diagnoseed seropositive RA. 2016 it changed to seronegative RA and as of March this year my diagnose is unspecified inflammatory polyarthritis. These diagnosis are allin the same family, but I can't help wonder why my diagnose keeps changing.

Simba1992 profile image
Simba1992 in reply to

I would wonder too🤔 Have you been examined by a good end?

Simba1992 profile image
Simba1992 in reply toSimba1992

I meant endo😊

in reply toSimba1992

I've never had anyone look at my thyroid. I just assumed thyroid problems would have been picked up on a blood test. Something for me to investagate.

Simba1992 profile image
Simba1992 in reply to

Hello susannedale,

You might find this reading useful. A good place to starr.

precisionnutrition.com/thyr...

in reply toSimba1992

Thank you so much for information Simba.

Lucy11 profile image
Lucy11 in reply to

Indeed. I have often wondered why we don't have more subtypes/variations defined for RA as they do for MS. Sero positive and sero negative distinction isn't even straight forward. Some doctors say sero positive is categorized as RF+ and not anti CCP+ while my doctor and doctors at the Mayo Clinic say that anti CCP+ or RF+ is sero positive. Often patients are told that anti CCP is only for diagnosis and isn't important after that and still others, like myself are told it matters a lot.

MS subtypes arose from the need to have a common language to describe and label the clinical course of MS. Defining the terms used to describe subtypes were important not only to physicians trying to describe what was happening to their patients, but also to researchers. In clinical trials, the more homogeneous the study population, the fewer patients are needed to demonstrate the benefits of a medication.

In my mind, finding a way to better distinguish between variations of RA will go a long way in treatment and making arguments pro or against certain treatments obsolete. As in why diet works for some and not others as well as possibly understanding which medication works better for each sub group. Whether or not this is possible is beyond me and although there would most certainly be outliers for each it would definitely be a step forward.

Richgirl profile image
Richgirl in reply to

Hello Suzannedale, I was wondering is you or anyone has seen Dr Brooke Goldner MD videos. I found her on Facebook. But maybe she can also be googled on the net. It sounds wonderful. But I wanted to be able to ask other people what they thought. Hope my note finds you well & still healing from your dental stuff.🌻

8080 profile image
8080 in reply toSimba1992

Simba- you are a "beast" on researching our ailments! Thanks girlfriend

Chris

Matilda_1922 profile image
Matilda_1922

I had shingles a couple of months before my symptoms started, however I had an accident 18 months before and I had a lot of stress following this regarding work so not sure what may have been the trigger for me.

They don't really know why RA happens but from what understand an infection stress etc may be a trigger

Matilda7 profile image
Matilda7

Yes, my RA presented immediately after a bout of viral tracheitis.

Damaged profile image
Damaged

There is a significant link between virus and onset of several autoimmune diseases. There is a genetic link but less than 50% is attributed to that. They suspect a hormonal role as there are two women for every male affected then virus is the third known variable. What many people fail to understand is the immune system does not shut down it kicks into overdrive by attacking healthy cells in your body. It stands to reason that once a difficult virus is defeated those T Cells and microphages just keep eating... hungry little devils..The DMARD's then suppress your entire immune system to stop the carnage. Biologics will target a specific function within the immune system rather than suppress completely. This is good because it reduces risks of infection. The problem is which part do they target. This is why doctors try different drugs to find what works for you. The cost also require they attempt to gain control of RD with DMARDs first. But there is ample data on the role of virus as a trigger to onset.

8080 profile image
8080 in reply toDamaged

Wow Damaged!! Thank you for all that info! Explained very clearly, and it all makes sense. So I'm not nuts!

xoxoxo Chris

Gnarli profile image
Gnarli

I first had sore joints over 20 years ago, bloods showed Rheumatoid factor but the GP just told me to go away and "live my life". Well, if stress, infections or viruses can be a trigger I wonder why it has hit me now when I had been at my healthiest, most settled and happy. It's a proper weird one this. Hugs

Jan

Simba1992 profile image
Simba1992 in reply toGnarli

Most probably because you have gone around with a subclinical inflammatory condition for a long time and the effect of the inflammatory state on your body together with a trigger that you may not be aware of, like hormonal changes or thyroid dysfunction, may trigger the disease. I think we should always take joint symptoms seriously and as a sign that everything is not ok. The cause can be undiagnosed hypothyroidism and by correcting this you also stop the joint symptoms from progressing or it may be gluten or lactose sensitivity and so on.

in reply toGnarli

So you've had RA for over 20 years and your doctor told you to live your life? Did your RA disappear and come back later in your life?

Gnarli profile image
Gnarli in reply to

Some joint issues over the years which came and went. It's here big time now though. I feel I dodged a bullet all that time but now it's caught me. Aren't I the lucky one that it didn't really hit until now?

8080 profile image
8080 in reply toGnarli

Well I'm so sorry it hit you now,Buttonhater.

Gnarli profile image
Gnarli in reply to8080

Thank you

8080 profile image
8080 in reply toGnarli

I am developing a great dislike for GPS! Except for my new one who is wonderful. My old one got mad at me for going to a rheumatologist! ( my phone won't let me abbreviate that word- lol )

Downtime profile image
Downtime

I'm sure my RA was triggered be the one and only flu vaccination I had. It was the H1N1 vaccine and it quickly affected my vision with terrible migraines, nausea and generally feeling ill. This passed after about 3 weeks but after that the joint problems started, and I was diagnosed with séronégative RA. I think it sent my possibly already stressed immune system into overdrive.

Bookworm55 profile image
Bookworm55 in reply toDowntime

I too connect the onset of my sudden RA symptoms with my first ever flu jab in Oct 2015. I had no reaction immediately unlike you but 6 weeks later severe pain, swelling etc in most joints and in Feb 2016 diagnosed with seropositive RD. Mind you I did have X rays taken at that time which showed some OA , suggesting that the disease may have been 'hanging around ' for some time. I have asked various medical professionals about a connection and the general consensus seemed to be that had I not had the jab and caught flu that would probably have triggered it anyway! Some dismissed it out of hand or said it would have come on sooner after the jab. There is, however, some anecdotal evidence on the web to connect the two.

Having said that, my disease is well controlled with DMARDS atm so I did have the flu jab again this winter - no reaction at all.

8080 profile image
8080

Interestingly, I have just found a great Endo! ( they are scarce around here ) He has ordered an ultrasound of my thyroid and kidney this coming Wednesday, and a parathyroid scan next week. I am "giving off" ( ? Whatever you call it ) very high parathyroid hormones, and was told 2 years ago that I probably have 1 or 2 parathyroid tumors ( by a famous heart doc. who takes 20 vials of blood and tests them, and explains the results, but does not give a referral, or any solution to the problems! ) but I haven't been able to validate it til now. I also had high inflammation at that time. I didn't have the virus until a couple months later. This is all so weird. My old GP washed her hands of me, said I didn't have the rheumatoid factor and I should go "cure myself", which is what I've been trying to do but was in too much pain for most of that time to even find a new GP and rheumatologist, let alone go in for an office visit. So that's why it is only the last 7 month's that I've been helped by the MTX and feeling better. Wow, I am rambling.....thank you all for the articles and information I need to read the whole viral article again tomorrow- don't have any idea if it even pertains to me or how I would prove any connection anyway. I've never had any of those major viruses ( that I know of ) but I know that inflammation has been lurking for years. Yikes- I need to go to sleep and get a fresh perspective tomorrow...love you all!

Chris

P.S. sorry this is all about me.

Simba1992 profile image
Simba1992 in reply to8080

There definitely is a connection between vaccination and AI! Here something to read.

cmsri.org/wp-content/upload...

Kai-- profile image
Kai-- in reply toSimba1992

Excellent find, Simba1992! 👍 (Thank you kindly. 🙏 )

Your just noted article, "Predicting post-vaccination autoimmunity: Who might be at risk?" ( cmsri.org/wp-content/upload... ) overlaps with what Richard Matthews has postulated (below) & affirms Downtime & Bookworm55's suspicions (above) that their flu jabs/ vaccinations may have inadvertently triggered their already compromised immune systems. 👍

[Copy & pasted ABSTRACT* of article below for convenience.]

.

______

Richard Matthews (RM), at roughly minute 39, may have a plausible explanation as to how an injection possibly 'triggers' RA: paddisonprogram.com/how-gut... by adding in the additional layer of the gut microbiome (the seat of the immune system) into the mix.)

Flu jabs/ vaccinations may 'push' an already compromised immune system to its 'tipping point' — toppling it into an autoimmune reaction — the manifestation of RA. (?)

.

______

To my layman's ears, RM's explanation/ theory (elegantly simple & direct) sounds highly plausible as to why/ how autoimmune reactions can manifest after a seemingly innocuous inoculation! 😳 🙃 It has a 'ring of truth' about it. 🤔

Make of it what you will. 🙏

[It seems the article's authors (Soriano A, Nesher G, Shoenfeld Y) & RM have (separately) hit upon equally significant (plausible) contributory 'triggers'. 👍 ]

.

______

Oh, ditto for trauma (Trauma: healthunlocked.com/nras/pos... ), stress, etc. triggering autoimmune response. (An already compromised immune system being 'tipped' into RA via traumatic bodily event or severe psychological strain.)

.

Kai-- profile image
Kai-- in reply toSimba1992

Brief, connect-the-dots (layman's) synopsis of Richard Matthews' audio excerpt: Overlapping experiences -- inadvertently creating dysbiosis by overprescribing antibiotics. Same root cause -- imbalance in populations of gut bacteria (dysbiosis), which disrupts the immune system, which takes instructions from the bacteria. An immune system receiving aberrant instructions may not manifest illness until it's challenged by infection, vaccines. An unhealthy immune system may not manifest until it's tested/ challenged. Faulty immune system causes RA. Children adversely reacting to vaccines may be unwittingly revealing a pre-existing dysfunctional immune system that only manifests when challenged by a vaccine. [Confusion between vaccine "directly causing" & "indirectly triggering" an autoimmune reaction in a child with an already-weakened immune system.] Dots connected?! 🤔 🤗

.

Simba1992 profile image
Simba1992 in reply toKai--

Sounds very logical. Thank you Kai👍🏻😊

Kai-- profile image
Kai-- in reply toSimba1992

If these various concepts/ ideas/ theories postulated [by R. Matthews & authors (Soriano A, Nesher G, Shoenfeld)] are accurate (even partially accurate), then an 'aid' in ameliorating our 'already faulty immune systems' is to take steps (within our means/ abilities) to reduce/ minimise/ eliminate/ avoid the multi-faceted elements that fuel the flames of inflammation & trigger us into full-blown, active disease state. 🤔

'Attempting' to repair/ heal our faulty immune system (as best as it can be repaired/ restored) seems the goal. 🤔

Perhaps perfection — complete recovery — can never be achieved. But any little bit of improvement towards healing is a blessed relief. 🙏 🤗

.

Kai-- profile image
Kai-- in reply toSimba1992

* Copy & pasted ABSTRACT of:

"Predicting post-vaccination autoimmunity: Who might be at risk?" ( cmsri.org/wp-content/upload... & ):

"Vaccinations have been used as an essential tool in the fight against infectious diseases, and succeeded in improving public health. However, adverse effects, including autoimmune conditions may occur following vaccinations (autoimmune/inflammatory syndrome induced by adjuvants--ASIA syndrome). It has been postulated that autoimmunity could be triggered or enhanced by the vaccine immunogen contents, as well as by adjuvants, which are used to increase the immune reaction to the immunogen. Fortunately, vaccination-related ASIA is uncommon. Yet, by defining individuals at risk we may further limit the number of individuals developing post-vaccination ASIA. In this perspective we defined four groups of individuals who might be susceptible to develop vaccination-induced ASIA: patients with prior post-vaccination autoimmune phenomena, patients with a medical history of autoimmunity, patients with a history of allergic reactions, and individuals who are prone to develop autoimmunity (having a family history of autoimmune diseases; asymptomatic carriers of autoantibodies; carrying certain genetic profiles, etc.)."

.

8080 profile image
8080

Another P.S.- Downtime- I had just had a flu shot before I got sick too!

gilox profile image
gilox

Yes had a really bad virus,which in turn went into bronchitis, was given antibiotics, was soon after when I realised I could not only walk upstairs but down as well(was having to come down on my bum as couldn't bear putting weight on my feet for up to two hours first thing.) I am truly convinced that a) virus somehow stopped the rd b) it's very much stress related, I had a huge flare when Mother died, I always considered myself "one of the lucky ones" as the rd had only a smallish effect on my day to day life, was still able to walk a couple of hours most days, & crochet an hour or so.the only symptoms I have now is overwhelming tiredness by evening, then unable to sleep! Not sure if this will help, but I am feeling very positive at the moment.

Gillian

Rahelp profile image
Rahelp

What is an endorsement please. I h e had RA for twenty years and have never heard of one.

DelicateInput profile image
DelicateInput

Yes, I have. I am pretty certain a virus is connected. Nobody does any research to find out though.

janitae profile image
janitae

I wonder too....I got really quite I'll in January 2016 with aches fatigue all over. GP was certain I had Ross river virus. Over.several months And numerous blood tests all came back negative. More months finally diagnosed with RA...still no RF in my blood. Soon after that showed up antibodies to parvo virus....wonder if that was my trigger in the January.

Kai-- profile image
Kai--

Dr. Thomas Campbell touches on Infection as being 1 of "several intertwined factors that may affect risk of autoimmune disease". (His article is here: healthunlocked.com/nras/pos... (9th & 10th reply down) if it interests you, 8080. 🤔 )

.

_____

Brief excerpt:

". . . Several autoimmune diseases have been linked to specific infections. Sometimes, it seems that chronic infection and inflammation from a viral or bacterial invader can actually precipitate immune system confusion at some point, triggering the start of the autoimmune process6. People who have been exposed to Epstein Barr Virus (EBV), which causes mono, have a higher rate of multiple sclerosis[7] [7]. Those who have been infected with EBV in adolescence or later in life have a 30 times higher risk of multiple sclerosis compared to those who have never had Epstein Barr Virus[7]. . . ."

.

It reaffirms fellow sufferers observations/ inferences just noted here in your post, 8080. 👍

[To view TC's tables, figures, references in his source article, 'Autoimmune Disease: Genes, Infection, Environment & Gut', see: nutritionstudies.org/autoim... ]

.

_____

Hope this contributes to putting together pieces of the puzzle. 🙏 🌺 🍀 🌞

.

Connecting the dots:

⚫️ <—> ⚫️ <—> ⚫️ <—> 🤔 <—> 🤔

of thoughts . . .

.

in reply toKai--

Very interesting to read. Thanks for the information

8080 profile image
8080

Wow! Kai, Janitae...looks like it's a possibility that a viral (or other ) infection might be a trigger! Maybe you, Kai, ( since you are A#1 researcher ) should make up a questionnaire, and we all fill it out, and maybe we could make some headway in a cure for this miserable disease. Or AT LEAST some warning signs, so we are not all blindsided by RA?

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