In an a little book in a series on RHEUMATIC diseases of North America, I came across an obscure reference to an article in the British Medical Journal speculalating that arboviruses may be the cause of AAV and other RHEUMATIC disease presentations.. Article was published way back in 1982., and not much attention paid.
I had an arbovirus, specifically the chickungunya virus in 2014 while living part time in the Caribbean; it had never been seen there until late 2013. It is mosquito borne and not contagious person to person . The mosquitos are Asian. I recovered in 5 days with some lingering hand pain which eventually disappeared. There is no treatment.
It is now known that people who have had this virus, particularly the over 50+ crowd, show up with vasculitis or rheumatic diseases approx. 2 years later; that is what happened to me. Of course. No doctor in New Jersey is much interested, but more and more articles are appearing in scholarly literature to suggest this link.
Has anyone had the Chickungunya virus or Ross River arboviruses that have come back to haunt you appox. 2 years after acute virus resolves,?? Thought better chance of throwing out question to Austrailians who seem to have been the first to ask the question. I am going to try to get a hold of the whole article from 1982. This is not going to change treatment regimins, but sometimes it helps to know "why me"? Title: "Segmental glomuelonephtitis with anti neutrophil antibody possibe arbovirus etiology? by Davies, D.J.et.al, BMJ 1982, 285:606. More presentations linked to viruses coming from Indian and French, US researchers. The virus can wind up anywhere where an infected mosquito can hitch a plane ride West . Now in SE US, case in England, lots in Caribbean islands; one case of lupus after Chickungunya virus reported recently. If nothing else, emphasizes the need for mosquito protection in tropical environments.
Anyone else?
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Christophene47
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Very interesting. Like you I'm always curious about the causes and triggers. No arbovirus infection for me but it is well documented that there is a link between pmr and adenovirus infection.
I was hospitalised with severe flu- like symptoms a few years ago. All kinds of diseases like Dengue Fever were tested for. I had been in Australia and Korea. I was eventually released after a period in isolation with a flu diagnosis. I have often wandered what it really was. Who knows, certainly got bitten by mosquitoes that year. PMR diagnosis March 2016, symptoms for a lot longer.
Any time bitten by a mosquito(s) there is always the chance of a connection to "flu ", virus,and subsequent illness. If you were diagnosed in March, 2016, when did you have the flu that hospitalized you? Was it around 2 years later?
As between Dengue, Zika, and Chickungunya, Chickungunya is the only one that confers immunity; that must mean it leaves an antibody behind? Is that thinking correct?
With PMR/GCA now, I more often than not, have viral feelings, but without fever. Just driving 20 m. to rheumatologist today, then meeting a friend for lunch, a brief trip to supermarket, a 5 m. ride home, and I am exhausted.
I think research in these diseases is still very young. Not enough funding.
It sounds like one of the early "infective cause" concepts. Since then they have pretty much ruled out the single infective cause theory as no pathogen common to many/all patients has been identified. Doesn't mean there isn't one of course but you would have thought they'd have identified such a common source.
It probably DOES have a role - but as one of many factors which cause a cumulative effect. It is most unlikely you could blame tropical viruses for PMR - since the peak incidence is in northern Europe! That may be where adenoviruses come in - they are not the sole trigger but for many patients are the straw that broke the immune system's back and being ubiquitous are likely to be found in large numbers of patients.
I did not mean to imply that this one virus is /was the cause. It is just one factor that could have triggered it in my case; but if you get into European research and East Indian medical research now, you see more and more viruses being attached to autoimmune research thinking. The Chikungunya virus never existed in the Caribbean islands until Dec.2013. By 2014, it was an epidemic . The mosquitos are of Asian origin, and with the degree of business people on island from India, China, Hong Kong, etc., and the frequent business trips these people make going back and forth, certainly the mosquitos are hitching rides.
At the time of the 2014 epidemic, the CDC warned of the fact that people over 65 have a greater risk of having rheumatic like symptoms irrespective of blood test results, possibly for life.
It is what it is, and prednisone is still the first treatment of choice. People similarly situated are showing normal bloods, but become sick approx. 2 years later after the acute infection has resolved. And of course there are many other factors that come into play such as genetic predisposition and other environmental factors that are unique to each patient.Given what I know and what I have been through these last 20 months or so, and it may never completely resolve, I won't risk another tiger mosquito bite. This is all quite new to American doctors and some European doctors, but not to doctors in infectious disease study in tropical parts of the world.
We have the joys of tiger mosquitos in our region now!
I meant common in the sense of shared by more than two people. I wasn't saying it wasn't a factor - but originally it wasn't. PMR was first described in 1888!
My timings fit that theory and my symptoms are predominately viral type feelings ( like waves of creepy skin) slight temperature and utter exhaustion. Not much in the way of typical PMR pain. On 7 mgs Pred.
My timing of symptoms was exactly 2 years post acute viral infection in Caribbean to the month. I knew from CDC website, that a chronic 0+ rheumatic arthritis could ensue 2 years later in people over 60, especially. But never thought it would happen to me.
My new rheumatologist was open to the viral trigger theory. Having tested positive for PR3 C- ANCA in Sept. 2016, my new rheumatologist sent my blood to 3 different labs; the consensus is that the titre is so fractional as to be insignificant for GPA; however, he still thinks taken as a whole, I have PMR/GCA. There will never be proof of a connection to the virus, and too long on Prednisone to bother with a biopsy to confirm GCA, but he agrees a plausible theory.
Maintaining me on Medrol at 8mg. for 2 more months, after which he wants to taper more barring anything unforseen.
I agree. "ubiquitous". It could well be as common as herpes simplex, which is now implicated with some neuro diseases. There was a sitom in the US a few years ago. "oh, no granma, didn't know you were a ***" after she was diagnosed with Alzeheimers. You wouldn't need to have any fancy virus, could be Cytomegalovirus, Epstein Barr, any of these things. Awareness was lacking. They have been doing a lot of research for vaccines. Useful, but too late for us.
Thank you for that, but I am not in Australia, but the US. Wonderful for you you are out of wheelchair and assistave equipment. I am sure it is genetic ; my maternal grandmother had PMR/GCA when she was 71. She recovered after a couple of years on Prednisone and lived independently until 91 and passed away in 1992. My daughter has RA. My brother and I have both has episodes of gout. I have not had an attack since 1989.
But then this. Adding to my problems (unrelated) , I have a large hiatal hernia compressing a lobe in lower left lung, causing shortness of breath and poor stamina. I don't know if that will require further treatment; just got results yesterday. It never ends does it.??
Oh, I got that location wrong.......hopelessly wrong.
I sincerely hope everything does have a end................it just seems like once we start with one problem along comes another and I recall what my Mam said,
"old age never comes alone, it brings unwanted friends and you have to learn to adjust to those unwanted friends and try and accommodate them".
I am not my Mam and still have great difficulty in getting my head around another unwanted mate.
Mam had both PMR & GCA over 32 years ago. Now we have actual progress taking place over the lat 10 years. I won't see cause or cure but future generations will and that is down to patients finding our collective voice.
I had GCA for 5 years and then remission, this is 6 months into my 7th year.
Very uplifting to know you are in remission for a most 7 years. It gives me hope. I have some quite good days now, but not completely gone. My grandmother had it too; she recovered on Prednisone and lived independently another 20 years. I hope I take after her. Very best wishes for 100% continued remission; dare I say cured?
Sorry to be late in answering your question re Bowen Therapy. I mentioned it because at one time I was in a wheelchair used zimmer frame and walking stick. It worked for me and I now only use the walking stick when on rough ground (a folding one).
PMRpro talked me into trying it - I did not really listen for quite some time, but she never gave up.........I wasted that time.
Put 'Tom Bowen' and then 'Bowen Therapy' in your search engine, one at once.
Thank you so much for the information. I am still able to walk unassisted but slowly and for short times. And manage the stairs, up and down .It is always good to learn new things "in case." Thanks again.
I'd like to find the pill that would make me 10 pounds thinner; prednisone made me bigger; PMR stopped regular exercise in its tracks..my husband enables me to eat sweets..
I wonder what Alice would recommend for something lighter.??? Curioser and Curioser... I think we are in Wonderland- we wonder and wonder???
I went to Egypt in 1990 and got ill with who knows what. Been ill ever since with some kind of autoimmune thing—seen doctors all across USA, most whom tell me I’m nuts, aka see a shrink. I was convinced it’s shistamiaisus but they won’t test for it, insisting I couldn’t have it. Long story but something whammied my immune system after I got back from Egypt. A prominent doc here in us (since retired) told me she never met any world traveler who wasn’t sick. So for me, I think about the Egypt trip...or maybe the vaccines. ( I have a couple other theories that I will post sometime later). Somewhere there’s an answer. (P.s. I got pmr in September 2016.). Best wishes to you!)
Interesting...I have traveled the world; never to Egypt though. Never got sick, even in India and Africa; a little digestive problem in China, but nothing much really. St. Martin in the Caribbean was my 2nd home and for 25 years, never a problem until 2014 when the virus went "viral " ..
My diagnosis was the same time as your's, Sept,2016. How are you now?
Struggling. Just went back up to 5 1/2 mg pred last week after bombing out with attempt to go to 4 1/2 using dsns. Couldn’t handle bone crushing fatigue and depression. Per pmrpro’s suggestion, will stay at 5 1/2 for couple months before trying next reduction back to 5.
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