View Full Version : Hi Everyone!

03-18-2012, 07:46 PM
My name is Megan. I was diagnosed with lupus July 2006 when I was 17. I also have another autoimmune disease, juvenile (type 1) diabetes, that I was diagnosed with November 2003. About a year ago I started having trouble with it for the first time, mainly my joints (minus the pain/symptoms I had at diagnosis. I went into a remission pretty quick after I started my meds). My mom also had lupus for 10 years. Her lupus was....nasty. Forced retirement and full disability about 5 years into the disease. She ended up with shrinking lung syndrome because of the lupus (has anyone ever heard of that?). It seemed to always be a 1 step forward, 2 steps back sort of thing. It got to the point where she ended up stumping the doctors at Mayo Clinic. I'm honestly more interested in my mom's lupus case right now than my own. I hope that doesn't come across negatively to ya because I do care about my own case....its just that it's so mild for me right now.

03-18-2012, 08:09 PM
Hi and welcome to WHL! I think it is wonderf that you are so concerned about your mom! Shrinking lung syndrome sounds worse thn it is. The outcome is usually good when mess are taken. I am adding a link for you with more information. Hope this helps


03-18-2012, 10:00 PM
hi megan, and welcome.

it is believed that about 2% of lupus patients is hereditory.
we have a lot higher percentage amoungst our members.

i am glad to hear that your lupus is under control.
please tell us more about mom.

please also take time to look at some of the older threads,
they are our personal experiences with lupus.

03-18-2012, 10:52 PM
Hi Megan,
Im Suzanne,I fairly new here also. Im interested about your diagnosis with type 1 diabetes, just curious, because my Daughter was also diagnosed in 2008, she was 7 years old, then Feb this year I was diagnosed with Lupus, took 13 months, but still have the answer as to why I was feeling the way I was and my Daughter as of yet doesnt have any other Auto immune problems. I havent heard of shrinking lung syndrome, but I do hope your Mum is okay and your not being negative toward your own lupus, i think its a good thing for you to be there for you mum and Im thinking now that Im glad im not alone, with lupus and diabetes as a mother daughter situation. So thank you for posting and I do wish you both well.

take care

03-18-2012, 11:13 PM
Hi Megan,
Welcome to WHL. This will be a good place for both you and your Mom to learn more and to find supportive friends.
I'm glad that your meds are working well for you. Keep taking them, and take good care of yourself.
Tell your Mom to come join us, too. Several of us have had to deal with giving up a career because of our AI diseases, and we are all here to support each other.
She's welcome to come here to ask questions or to vent when she needs it.

03-19-2012, 01:07 AM

Well, my mom passed away in 2009 (not sure if that was clear with the way I worded my post). I'll try to make this as short as I can.

She was originally diagnosed with RA in 1999, then lupus not long after that. She was put on prednisone and the first 2-3 years were pretty good. No shrinking lung syndrome at this point. In 2003 she ended up in the hospital for a month with some time in ICU because of a staph infection in her blood. Between 2003 and 2005 she was diagnosed with shrinking lung syndrome, forced to retire, and put on disability. She was put on oxygen 24/7 and continued to be until she passed away. She was also put on blood thinners because she would get clots in her lungs and switched to an injectable form of steroids (forgot the name...I think it started with a D). During those 10 years, different combinations of drugs were experimented with, and antidepressants, a sleeping medication, and gastro related medications also came into the picture. Liquid morphine did too.

Why steroid shots instead of prednisone? It was found that the prednisone stopped being absorbed right, making it useless. All her other oral meds were fine though. Methotrexate and Cellcept were 2 of the drugs that were tried at one point. Those ultimately didn't work. Steroids seemed to be the only thing that really did anything for any long period of time. I don't think she was ever not on steroids. The doses fluctuated from very high to very low, but she was never able to get completely off them. Of course the steroids caused their own problems. One of them being severe ligament damage in both her hands to the point where her hands were nearly useless. Another one being paper thin skin, literally. It did not take much to end up with an open cut, which she did a couple times (badly) to her legs.

The last 3-4 years it wasn't uncommon for her to spend a week or 2 a year in the hospital for things like pneumonia and RSV. She would also get "bleeds" (I don't know the right term for this) once in a while which would create another hospital stay for several blood transfusions. She was also anemic. Ah hell, it was just a bad domino effect all the way around! Overall she stayed pretty positive through the whole thing and was even able to joke and have a sense of humor about her situation. It's really amazing and interesting to me how unique and different each lupus case can be from person to person.

I hope I didn't ramble too much! :)

03-19-2012, 01:29 AM
Hi Suzanne,

My personal opinion on my lupus and type 1 diabetes is that they have nothing to do with each other. I believe the only link that my diabetes and lupus have is that their both autoimmune diseases, nothing else. I do think I got them both through heredity though. Lupus from mom, type 1 diabetes from paternal grandpa (and skipping my dad).

03-19-2012, 04:04 AM

sorry that i did not read that properly.
it must be hard knowing you have the same problem as mum had.
luckly there has been some good advancements in medication in the last 12 years.

please accept my appology for making you restate such a terrible list of events.
how is your lupus progressing?
what meds are you on?

i have written a little about myself on my profile page.
please read it so you can know a little more about me.

03-21-2012, 11:22 AM
Hi Megan,
I'm sorry than many of us misunderstood about your Mom.
As Steve said, medicine has progressed in the past decade and it's much easier to control both Lupus and Diabetes.
I hope that you can learn a lot from this site about how to control and live with chronic diseases.

03-21-2012, 07:50 PM

No need to apologize. I really have no problem talking about it...I could've easily ignored ya and not responded :)

As for my lupus....part of my diagnosis included a kidney biopsy and it was found that the lupus was affecting them. I was put on cellcept, prednisone, and plaquenil. The kidney disease and all the joint pain was gone within 2 years and was able to be taken off cellcept and prednisone. Then towards the end of 2010 I started having joint pain again and was put on methotrexate, folic acid, and folinic acid (and plaquenil)...so that is where I'm currently at. I guess you'd call it a very mild flare since joint pain is the only issue right now. The pain is manageable, once in a while I'll take some pain killers for it, but not often....lol or maybe I'm just too stubborn to take them more often. I also have days where there's very little pain and days where there's a lot.

03-21-2012, 10:40 PM
Hi Suzanne,

My personal opinion on my lupus and type 1 diabetes is that they have nothing to do with each other. I believe the only link that my diabetes and lupus have is that their both autoimmune diseases, nothing else. I do think I got them both through heredity though. Lupus from mom, type 1 diabetes from paternal grandpa (and skipping my dad).

Hi Megan,

Yes, Its all auto-immune and Diabetes part in way way back in the family, skips 4 generations, so my daughter is fourth gen...and there's no other family that has Lupus, so it is interesting all round and its seems since my Daughter was diagnosed, it was 1 in 700 were being diagnosed in 2008 and now its gone to 1 in 400 as 2011, so thats a short period of time.
Wish you all the best and apologies sorry to hear about your Mom..