How many others of us with RA have inherited it ? My grandmother had RA. My mother did not but her sister (my aunt) did.
My grandmother's was not as bad as mine. She only had it in hands and feet until she died at 78. My Aunt's RA was very bad like me. She had it everywhere like me. She died of other causes at 75.
Are you hereditary RA too or do you suspect something else gave RA to you - if so what ?
hi.. you posted an interesting question. I was DX in Aug of 08. My cousin (same age as me) has lupus (with arthritis) and got hers in her late 20's. I found out thru out while commiserating about the pain, that our great aunt, and 2nd cousins have RA and lupus and one has fibromyalgia. I also found out another cousin of ours (3 yrs older than us) has fibromyalgia, and now an aunt (close to both of us) has fibro as well. I think, being we're all related and these are all autoimmune diseases, in some way, there is a genetic disposition. I fear my daughter will get it when she's my age or YOUNGER... i worry that my sister and her daughter will get it. Maybe I was just the unlucky one.. or chosen because I'm the stonger one.. who knows..
HLA-B27 is the gene
There may be more than one, and it doesn't necessarily CAUSE it but makes you more susceptible, as far as I know. The gene I read about that's involved in RA is HLA-DR2 There may be more than one variety involved... Here is some info on Wikipedia about what those numbers & letters mean. I work in college chem & physics departments and believe me, this stuff gets incredibly detailed. Knowing the abbreviated name unfortunately does not do us a whole lot of good (maybe a sense of POWER THROUGH KNOWLEDGE), except for the encouragement that SOMETHING is indeed understood about the cause - it's not "us" and not all in our heads! Here's the info about HLA-B27 - it is involved in ankylosing spondylitis, according to Wikipedia again: http://en.wikipedia.org/wiki/HLA-B27
Ellen I'll google and wikipedia HLA-B27 + HLA-DR2.
Yes I think there is more than one gene involved. Maybe not everyone has all the genes that cause it. Or some other combination. I believe that is why some drugs work for some people, - for a while, or not at all, or why some people die or get servious reactions to the drugs.
I think thus far the current drugs or combinations are suppressing all or most of the immune system which to me is dangerous as we need our immune systems to fight off disease. I personally believe that its dangerous to suppress the immune system for too long - like years. A lot of the drugs were for cancer to be used for 1 -2 years then ceased not to be ongoing.
Appears that mostly the adverse events occur after long time use and the higher doses. It certainly was in my case.
Be interesting to see if those who have Hereditary Rheumatoid or fibromyalgia, lupus or other immune suppressed diseases are different in their genetic make up to those who did not inherit it but was caused by something like Gladular fever or several have told me exposure to one or another kind of chemical or printing ink.
Drugs need to turn off this genetic process altogether - not just suppress all or part of someone's immune system I believe.
There was something on this site about 2 weeks ago on the front page before it changed - that somewhere in the world - the UK I think had found that there certainly was more than one gene - they found another.
Is your RA worse in Winter ?
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Hi - when I first read your post, I wondered if I had written it! (almost ...) My grandmother had very bad RA, had cortisone shots in her joints occasionally (caused her a lot of bruising and fragile skin), went to mineral baths in Europe (they were well off), and took some medicine they ordered from England as it was not available (or probably legal) here. She died at 79 of pneumonia.
My aunt had pretty bad RA - she had been a tennis & golf player all her life. As with my grandmother, it started with her in her 50s and 60s (I also started in my 50s,I'm 58 now). She had gold shots which helped her the most. She didn't want to live past 80 and died a couple of months before her 80th birthday - she had a massage stroke (after having a wonderful reaction to her first couple Remicade infusions...). But I just think she'd had enough...
My aunt's daughter (my cousin) also has RA and is a year older than me. Hers must be fairly mild as she had worked as a nurse (a rheumatology nurse, giving Remicade to Crohns's patients!) and didn't really want to take anything. She's recently retired. I have not seen her in years and can't judge. She told me she wasn't taking anything but someone (one of my sisters) thought she was on Methotrexate.
Her two sisters, and another one of my cousins, both have diabetes.
My mother did not have RA but had a bald spot late in life, which is immune-related, alopecia areata. Two of my sisters have polymyalgia rheumatica, and are on prednisone. One is 52, (too young for it really, I'm wondering if she'll end up with RA), the other is 64.
Because of all this my sisters and I, and my daughter, are participating in a study involving the first-degree relatives of RA patients - basically blood tests and genetics studies. If you're interested in participating in this study, let me know and I'll give you the email address of the person in charge.
Ellen - yes please I'd like name of person doing the hereditary study. Their email as I live in Australia and can participate by email. We don't have as many people in our country only 22 million so many less sufferers of RA and no money for reaearch like USA.
Some people tell me that its not hereditary for them but got it after glandular fever or I've met 5 people now who say they reckon it was printing ink as they worked in the printing industry.
keep in touch
I don't think it can be done by email because blood tests are involved, but I think they have a couple of research centers participating, and they may be able to work something out - they did for me off-site, had samples taken where I live and sent FedEx shipping materials and instructions.
I would suggest first finding out if any of your first-degree relatives are interested in participating with you, and then emailing her to ask about participation. She would then give you the details of what is involved for both you and your family members. If you want to ask me more about it, please email me privately since this is not the purpose of this support site. (Thanks for understanding - my email is egalo@stlawu.edu)