RA and previous Epstein Barre infection

[Bookworm55]

There have been reports in the medical press lately about a link between infection with the Epstein Barre virus and the later development of RA and other autoimmune conditions. I had glandular fever which is caused by this virus as a young teenager and was diagnosed with RA 6 years ago. Anyone else similar?

[Karen12]

I was tested for Epstein Barr virus as part of an immunology work up. I was not aware of having had it and neither was my mum. It was positive.

Epstein Barr has been implicated in many health issues later in life including RA, Multiple sclerosis, Lupus, Sjogrens etc. This is why I get frustrated when people say something is “just a virus”. Common childhood viruses are often insidious little things that lay dormant in our system to reek havoc at a later date, measles, polio, chicken pox, and cytomegalovirus to name a few.

Of course they don’t affect everyone that way but if you happen to have the right (or wrong) genetic make up, then you might just be one of the unlucky ones.

[Green230461 in reply to Karen12]

It is fascinating how our bodies become RA positive! I began with a toenail infection that kicked off RA. My body went “nuclear” according to the consultant 🥴

[Luludean in reply to Green230461]

that is interesting Green . In my recent disastrous , long awaited face to face with my rheumatology consultant , one of my questions was about my rotting toe nails He gave no answer, did not look at them and told me to see a dermatologist. I have not found one.

[Green230461 in reply to Luludean]

I found a good chiropodist who said toe nails can indicate disease two years before you are diagnosed especially auto immune and diabetes!

[Bookworm55 in reply to Green230461]

lnteresting. I had a nail infection a couple of years before my RA symptoms and then diagnosis.

[vonniesims]

I was very ill with it when I was 14. and diagnosed with RA in my 50s .

[Deeb1764]

yes I had glandular fever twice. I mentioned this to my consultant who said there could be a link but depends on which mushroom you are standing on pointing north on tip toes. He said so much research needed for RA connnections as so many possibilities.

[Bookworm55 in reply to Deeb1764]

Of course, as you say, there are so many things that can trigger it! I have a first cousin and a niece with RA but no idea if they’ve had glandular fever.

[Deeb1764 in reply to Bookworm55]

he made me laugh when he said it yonks ago as it shows how so much needs to be researched still

X

[ABwn in reply to Deeb1764]

sounds as though you have a great consultant with a brilliant sense of humour!! 😂

[Bookworm55]

Of course, as you say, there are so many things that can trigger it! I have a first cousin and a niece with RA but no idea if they’ve had glandular fever.

[Dobcross1]

My Mum had glandular fever as a child - when I was diagnosed with RA I asked if there could be any hereditary link between that and my RA and was told absolutely not!! Makes me wonder though.....

[Bessieboo1]

I had glandular fever when I was about 9. I was really poorly and every year for several years around the same time I was ill again. I was diagnosed with rheumatoid arthritis when I was 46.

[Shonkie]

I have never had this but my RA was triggered by a very stressful journey I had. It started immediately after when I was quite Ill and my hands swelled up. There are a number of starting points I guess. Could have lived without that but I have the genes.

[Barbara_Stark in reply to Shonkie]

same here. One extremely stressful day of physical and emotional stress, I would have coped with that I think but it culminated in an emotional trauma and feelings of grief and anger I absolutely did not want to have and suppressed.

It was like switching on a trigger switch.

The next morning I had my first symptoms and they never went away.

I sort of feel I did it to myself by not being able to handle and process it all better. But it absolutely switched on then.

[Shonkie in reply to Barbara_Stark]

my experience exactly. I still get upset at times when I feel I am harming myself with stress though it is hard to control . The good things in life like walking, countryside, gardening and music all help along with friends and meditation. Giving yourself a hard time is something we can all live without!

[Barbara_Stark in reply to Shonkie]

yes. It is hard. It has been hard work and I think I have worked through my trauma. Forgiveness and letting go of anger has helped. But I’m still left with this condition.

Good luck to you with your wonderful things. I love nature, crafts and laughter xxx

[fred42]

Well that is interesting.

I had glandular fever very badly when I was 18 it affected my liver and gave me jaundice. I remember being tired and depressed for ages after.

RA Seronegative arrived when I was 63. It does appear to be in my mother's family so perhaps 2 factors and I didn't stand a chance.

[Ilovetotravel]

I was diagnosed with Crohns colitis aged 32. When I was 40 (yes thats right!) I had glandular fever and was very unwell for a month. In my mid 40’s I was diagnosed with inflammatory arthritis and osteopenia. I am really starting to think there is a link to autoimmune conditions. I am also HLAB27 positive. Anyone else similar?

[KittyJ]

I’ve never had glandular fever and no one else in my family has RA or any autoimmune diseases. This us what makes it so difficult to find a cure I think as you think you may have found a common link but then you find it doesn’t apply to everyone. 😞

[Otto11]

I never had Glandular fever as a child but have had EBV 11 years ago as did my daughter. We both have had ME since. She has barely left her bedroom since. However with my hubby it attacked his liver & he went into liver failure ( our stupid GP kept giving him antibiotics for uti or similar). He was in hospital for weeks & wasn’t expected to make it at one point. The consultant rang to prepare me for the worst. This was all after I was diagnosed though. Interestingly though I’ve just been reading about EBV being reactivated by Covid. It’s all interesting stuff x

[oldtimer2]

There is also some interesting work linking the gut microbiome with auto-immune conditions.

The HLA gene complex recognises and remembers specific causes of infections (pathogens). Then it expresses proteins that present antigens to our T and B cells. The B cells prime killer T cells to attack invaders like bacteria or viruses.

Most T cells are 'trained' in the thymus to ignore our own cells, and this can go wrong in auto-immune conditions. Some T cells are trained in the gut. It's suggested that some of these can also become confused and attack our own cells.

So perhaps any infection (theorectically so far) might cause this confusion.

[Typsey]

Hi there. Yes I had glandular fever when I was 8 yrs old. Was I’ll for a few months. After I got well I was always complaining of pain in my bones and was told by dr it was growing pains . My mum used to give me iron drinks. I was diagnosed with RA when I was 27.. I’m now 64.

[Happy5]

Very interesting, unfortunately I got it in my 30s (from my teen son so much for not contagious ) was fortunate my blood test came back positive, up till then GP refused to accept I had it. Round the same time I got whooping cough from helping a friend, nurse her daughter with it, ( you don't think about lack of immunity by this time) so ended up with the proverbial chronic fatigue.

[Twoplustwins]

Hello, I had mononucleosis ( cousin to Epstein Barr) twice in 6 months at age 46. I was subsequently diagnosed with lyme disease and Sjogrens. Fast forward 8 years later and I am going back to rheumatology. Clinically ( and sccording to blood work), Sjogrens has been in remission for years. But, my RF was recently taken and was 114 (normal is 0 to 14). Test was repeated 2 weeks later and it was 156. Waiting for my rheumatology appt and then will see if it is RA or something else.

[Leics]

I had glandular fever when I was 16 I got it from my 17 year old sister I was pretty poorly for about a month and shortly after that we lost our mum from cancer. I think the trauma as well as the glandular fever didn’t help. I also had measles several times as a kid was constantly getting throat infections and ear too. I also had whooping cough when I was four can still remember that and I’m 58 worst thing ever. I’ve always had problems with my knees being really painful since the age of 12 so take your pick if there’s a link to RA. My inflammation ramped up a notch after a hysterectomy and the ovaries packing up after about three years after surgery. So menopause too ?

[Gottarelax]

Back in the early 90s when I was a wet behind the ears biologist I worked at a rheumatology institute on the proteins in a related virus (Cytomegalovirus) that could cause the production of anti-nuclear antibodies that are seen in Lupus and Sjogrens. I must say that I did think that the data was compelling at the time and that EBV could also have the same effect. However to definitively prove a link is difficult because a high proportion of the population have been infected with both viruses (Cytomegalovirus is generally an unnoticed infection as in most cases, children get it very young with no symptoms). Question is why would it trigger these autoimmune diseases in some but not others? I haven't kept up to date with the literature as I moved on to other viruses. Interestingly however, the impact of viruses on autoimmune disease was brought back to mind when a very healthy male colleague of mine developed underactive thyroid immediately after having covid.

[Karen12 in reply to Gottarelax]

I was tested for CMV the same time as Epstein Barr, neither of which I was aware I may have had. I was positive for Epstein Barr but am one of those rarities that have never had CMV exposure (I’m 44) I’ve heard it can be pretty bad with a first time infection as an adult especially with immune suppression and I work with children with known CMV regularly unfortunately. There has just been some research started on a vaccine to prevent congenital CMV so hopefully it will eventually be a thing of the past.

[Tazi8]

That's interesting. had the Epstein-Barre virus ( right after an annual flu shot - I thought it was just a bad flu at first), and was then diagnosed with RA about 2 years after - I was 36.

[Hidden]

Hi Bookworm55  That is interesting...I had mumps as a child and now have hearing problems, psoriatic arthritis and had psoriasis for many years (my skin is now clear). I've often wondered if it triggered the autoimmune issues...

[Hollyhock123]

My RD was most likely triggered by hormones and a medical trauma at 29yrs old. However my dad, paternal grandmother and aunt also have/had RD and have lived with it since their 30’s. So was I susceptible, probably. My son was tested for JIA at 14 but was negative. He had fatigue and joint symptoms then, and then earlier this year, at 19, he had severe tonsillitis and ended up in hospital for a few days and tested positive for Epstein Barre. He’s slowly getting back his strength 4 months on, but is still struggling with fatigue and anxiety. I really hope this doesn’t trigger any form of arthritis for him 🤞🏼