Hi all!
I'm curious as I've seen some of the members mention this in other posts, but how many of y'all have had rheumatic fever? How old were you when you developed it? What are your symptoms, if you have any? What does your doctor say about this and your AI problems?
Thanks for your responses.
Patze
Hi Patze :)
Nope - one ailment I've never had.
Take care - Scottie :)
Hi Patze
I posted a poll about rheumatic fever a while ago and quite a few people responded. I had it when I was 3 and was in bed for 6 months. Surprisingly enough I have few memories of that time apart from joint pain and lots (?) of injections, and feeling lonely. My mother nursed me at home, managed to argue the doctors out of putting me on permanent antibiotics, and argued me into mainstream school. I was left with damage to two heart valves - aorta and mitral - which meant that I couldn't take much exercise, got breathless and exhausted easily, took longer to recover from childhood illnesses. (Plus a complicated relationship with my mother, but that's another story ....!)
It's only this year - I'm 48 - that symptoms have got worse and I'm on heart meds for heart failure, with valve replacement surgery on the near horizon. About 6 years ago I started getting odd joint and muscle pains which reminded me of rheumatic fever pains. Nobody came up with a useful explanation but now I realise they were SjS symptoms. I asked my rheumatologist about links between rheumatic fever and AIs in later life, and he said he hadn't seen any research. I think it's pretty rare in the developed world nowadays, and was pretty unusual even in the early 1960s. But thinking about it now I do wonder whether there's a link because it would seem pretty obvious. Maybe they'll do the research in India where rheumatic fever is still prevalent?
Did you have rheumatic fever? Have you read anything connecting it with SjS or other AIs?
Take care - Chickpea
Hi Chickpea,
Now that was some childhood you had, wow. I'm sorry that the damage is now rearing it's ugly head - I'll keep the old digits crossed that you'll be feeling better soon. Did your cardiologist say when they're thinking of replacing your valve?
I've been reading up on the possibility, and some cardiologists and researchers are starting to think that it might be, the research is on. It's interesting reading to be sure.
Take care -
Patze
Hi Patze
Thanks for that. I'm doing ok, just dealing with things one at a time as they line up!
Could you send me details of the research you've been reading? Sounds really interesting.
Chickpea xxx
Hi Chickpea,
Here are a few articles that might be as interesting to you as it is to me:
http://www.futuremedicine.com/doi/abs/10.2217/17460816.3.2.161
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1579099
http://emedicine.medscape.com/article/1007946-overview
They are good articles, and I'll keep digging around.
Take care -
Patze
Patze, when I was about 12 (back in the olden days) the drs thought I may have had rheumatic fever at one time. Well, we never went to the dr in the olden days. I have some valvular heart problem(s) and did then. It is odd that so many decades later, I have Sjogrens and this question always comes up. Lucy
Hi Patze,
It was thought that I had rheumatic fever when I was around 10 or 11 however the hospital records talk about it but nothing was ever documented on whether or not I had it. The records more or less end with suspected rheumatic fever. It does make you wonder if there's a connection.
DebbiK
I just read a book called the Autoimmune Connection, that talks about theories behind what causes the body to turn on itself. They mentioned MOTHERS who had rheumatic fever as a child as a risk factor for offspring developing AI issues. My mother did have Rheumatic fever.
Hi.....I am new to the discussion board and am presently undergoing test for Sjogrens and it looks like this is what I have. The doctor ran a multitude of tests and is waiting on the lip biopsy to make a definitive diagnosis. I had a very mild case of rheumatic fever as a child and have a mitral valve problem also. I also had strep throat all the time as a young child which they also feel attributes to these problems we all have. I was diagnosed with fibromyalgia when I was thirty but had the aches and pains from age 19 which started after a bad car accident. I started having a salty taste in my mouth in December of 08 which comes and goes and then dry mouth (which is pretty mild) and somewhat dry eyes. The taste is what got me to the rheumy. With all the material I have read on this awful disease, the chances of getting lymphoma scares me the most. This whole thing is quite scary to me but I might have had this longer than I thought blaming all my symtoms with the severe muscle and joint pain onthe fibro. I am going to be 57 this year and this is what I have to look forward to ....Sjogrens? I am very concerned about all of this. I am glad to see such a discussion board with such nice people to talk about concerns of this disease.
Patze, No to the Rheumatic Fever.
Chickpea, It must have been hard going through all that as a young child. So sorry about your heart problems and future surgery. Had to smile about the complicated mom relationship remark.
Floridagirl, Welcome. I haven't been here long but the information is priceless. Roxanne
I also had strep throat and tonsilitis as a child and teenager. I have the mvp also. Interesting lot, we are. Lucy
Me too - several bad bouts of tonsilitis per year right up til mid-twenties. Also glandular fever at 22.
I don't think I had Rheumatic fever, but I did have terrible ear infections and tonsillitis as a child. When I was four, I had my tonsils removed and tubes put in my ears. I also had a heart mummer (Slightly leaky valve) as a child, but that's since gone away.
Interesting. I wonder if there's some kind of connection like Chicken Pox & Shingles?
Floridagirl: Welcome! I'm a Sjoggy and a lymphoma survivor (Location: Right parotid gland). (How do you do? I'm your worst nightmare :D) Please try not to worry about the lymphoma too much. Yes the odds are increased, but it's still pretty rare. And luckily it's one of the slowest growing, least fatal types of lymphoma there is and is super-treatable.
I had many bouts of tonsillitis. My dad had rheumatic fever as a child, adn developed valve problems.
Kathyx
No Rheumatic Fever, but lot's of Tonsilitis, they were evntually removed. Like Kathy, my mother had valve trouble,
Probably, it is purely down to the "Genes" we inherit that cause it... I have Autism, Excema, Endometriosis, with Hives in my immediate family!
If I could only meet the ancestor who set all of this off!!! GRRR Dolly.
HLin NY......thanks for the welcome...truly appreciated.....how do you know if you have a lymphoma and how is it treated?
This whole sjogrens is a lot to handle and I am still in the hopeful stage of not having this but my ANA came back slightly elevated and my SSA was borderline...we are waiting on the lip biopsy which I have a gut feeling will be positive. Thanks for the kind words.....
I did have rheumatic fever when I was 10 years old. Spent 2 weeks in the hospital and 3 months home in bed (my entire summer) I have a slight issue with MVP but other than that I am very fortunate with no serious heart damage.
It was so long ago I have always assumed it is not related to any of my current health problems. But then again I never thought I would have something like sjogrens either!!
Has anyone heard of any studies being done to see if there is a link??
Mary Ellen
I've not had rheumatic fever. However, had dengue fever when 6 yrs old which landed me in hospital for a few days. Drs are emphatic that it is not connected to SS in any way, but sometimes I wonder. Was in hospital for my 6th birthday. Still remember the special BD card I received from the nurses, a monkey popped out on a spring. Nope, I wouldn't eat my pumpkin, put it under my bed until the nurses persuaded me that I'd get better & go home if I ate my it. Had to eat everything at home, but obviously thought I may get away with it in hospital sick.
Lotus1