LUPUS

iluvcats

my mom has had so many health problems, not feeling well all the time, for as long as I can remember. Then she has many major health problems, including type II diabetes, diagnosed about 15 yrs ago. Two weeks ago the arthritis doctor (not sure how you spell rheumatologist) diagnosed her with lupus. The new medicine isn't sitting too well with her, it is actually a drug used for malaria. I read that some blood pressure meds can cause 1 type of lupus and it goes away within 6 mos when it is stopped, but she isn't on that particular one.

Does anyone here have it? Does it run in families? Of course I have looked it up, but I'd rather hear from personal experience.

I once posted here several yrs ago when I thought my uncle Berk was going to die. You all sent your thoughts and prayers. It is amazing, he is still around. He is so little, lost so much weight, wheel chair bound from emphysema but is still able to enjoy his grand children Thank you.

Who Princess

I know very little about lupus but I understand that it can run in families.
Mostly I just wanted to send you and your mom some positive vibes. I know how tough it can be to deal with a chronic condition, both for the person and the family.

iluvcats

Who Princess wrote:

I know very little about lupus but I understand that it can run in families.
Mostly I just wanted to send you and your mom some positive vibes. I know how tough it can be to deal with a chronic condition, both for the person and the family.

Thank you for your thoughtful post.

Spankey's Popp

My mother in law has it.

It could be border line debilitating at times and lay dormant other times. Pretty sure it could be hereditary but it takes a LONG time to diagnose. Years of tests could not reveal if it is there.

I know she has a hard time with sunlight in excess and the symptoms could be a mixed bag. I don't think the doctors know a ton about it though.

Google the Alliance for Lupus Research. Might be some useful info there.

Stay strong.

iluvcats

Spankey's Popp wrote:

My mother in law has it.

It could be border line debilitating at times and lay dormant other times. Pretty sure it could be hereditary but it takes a LONG time to diagnose. Years of tests could not reveal if it is there.

I know she has a hard time with sunlight in excess and the symptoms could be a mixed bag. I don't think the doctors know a ton about it though.

Google the Alliance for Lupus Research. Might be some useful info there.

Stay strong.

Thanks, someone else just told me about the yrs to diagnose it as she has it. She told me at work one day, right before my mom found out that she has it. My mom has alot of inflammation, constant pain, arthritis and she lost her hair a long time ago. She still has some hair. I believe the blood work confirmed the lupus. She had alot of xrays done as well. Once I had wrist pain in the '90's and the first thing the old doctor checked me for was lupus, which was negative. I've had problems with light sensitivity and a rash around my eyes. When I have my physical soon, I'll tell my doctor. My back and neck pain has gotten alot better. There were times in the nineties that I had to miss alot of work, then again in 2009.

There is a FB page for lupus and I got depressed reading it.

dankind

I am so sorry to hear this, and I hope that your mom finds some sort of treatment that makes her more comfortable. I also hope that it doesn't get passed down to you or any siblings or children you might have.

I've known two people with the disease. The first was a college acquaintance who was diagnosed very young, and after being out of commission for a very long time, they found a treatment for her that allowed her to live a somewhat normal life. The other person is my friend's mother, who is older and has other health problems, much like your mom, and she's not dealing with it well at all.

It could be an age thing, or it could be how much piss and vinegar is in the tank. I'd like to think the latter.

And it's probably best to stay off Facebook pages and support group type boards; we have found that they are full of too much negativity for us. Some people need a place like that to commiserate, I suppose, and that's awesome for them, but we're much more interested in moving forward, and it sounds like you are, too.

eeriepadave

didn't one of the kids have it in the movie "The Bad News Bears"? Or was that just his name :think:

Well hope all goes well. Sorry don't know anyone personally who has it.

moretonbayfig

Hi iluvcats, I'm sorry to hear about your mum's poor health and hope that the diagnosis will help her to access appropriate treatment. I have a girlfriend who has been living with lupus for 30+ years (since childhood) complicated by crohns and other immunodeficiency diseases. I don't claim to know much about this, but she receives steroidal treatments and regular plasma transfusions. Also, her case is related to her father's exposure to agent orange while serving in the Vietnam War. My understanding that there is a large class action related to this for children of Vietnam Vets in the US. If this fits for your situation, it may be worth speaking with some veterans organisations. But mostly stick with her GP/Specialist and any lupus-related support groups or not-for-profit organisations for reliable information and support. I wish you and your mum all the best.

iluvcats

dankind wrote:

I am so sorry to hear this, and I hope that your mom finds some sort of treatment that makes her more comfortable. I also hope that it doesn't get passed down to you or any siblings or children you might have.

I've known two people with the disease. The first was a college acquaintance who was diagnosed very young, and after being out of commission for a very long time, they found a treatment for her that allowed her to live a somewhat normal life. The other person is my friend's mother, who is older and has other health problems, much like your mom, and she's not dealing with it well at all.

It could be an age thing, or it could be how much piss and vinegar is in the tank. I'd like to think the latter.

And it's probably best to stay off Facebook pages and support group type boards; we have found that they are full of too much negativity for us. Some people need a place like that to commiserate, I suppose, and that's awesome for them, but we're much more interested in moving forward, and it sounds like you are, too.

Thank you. I found more comfort reading jj virgin's facebook than the Lupus one. She is a nutritionist and has many success stories (nothing about lupus, not sure) but in general it is positive and those with inflammation feel better after diet changes It seems that lupus is found more often in women. I was just telling my husband about your wife and I showed him the site with her pic and that she will walk 9.95 miles for PSC. I said, "I cannot believe she is walking THAT far." He thinks it's great, he said she has determination!

iluvcats

eeriepadave wrote:

didn't one of the kids have it in the movie "The Bad News Bears"? Or was that just his name :think:

Well hope all goes well. Sorry don't know anyone personally who has it.

Thank you. I never saw a BNB movie. I just noticed that Mike has a multi colored cat on his shoulders in your signature line pic. lol did you photoshop that? Now I see that EV has a cat too.

iluvcats

moretonbayfig wrote:

Hi iluvcats, I'm sorry to hear about your mum's poor health and hope that the diagnosis will help her to access appropriate treatment. I have a girlfriend who has been living with lupus for 30+ years (since childhood) complicated by crohns and other immunodeficiency diseases. I don't claim to know much about this, but she receives steroidal treatments and regular plasma transfusions. Also, her case is related to her father's exposure to agent orange while serving in the Vietnam War. My understanding that there is a large class action related to this for children of Vietnam Vets in the US. If this fits for your situation, it may be worth speaking with some veterans organisations. But mostly stick with her GP/Specialist and any lupus-related support groups or not-for-profit organisations for reliable information and support. I wish you and your mum all the best.

thanks for the information. her dad was in WWII and died in '88. my dad didn't serve in the military. my mom was more likely exposed to asbestos as her adoptive dad died of lung cancer caused by it.