Another Autoimmune Family Member

[Guitar_grrrl]

My sister was diagnosed with Lupus, last night.  She's 16 months younger than me, and has had many health problems over the last, oh, 25 years or so, including a couple of whopping kidney infections.  She also has Hemochromatosis, and leukocytopenia.  Her platelets are taking a nosedive as well.  Two bone marrow biopsies were negative for Leukemia.

As I was relieved to find out about my MS and given a place to start treatment, so is she.  She wasn't tearful when she called, it sounded more like a big sigh - just letting out the breath.  She starts Plequenil today.

I'm somehow not surprised.  I know autoimmune processes can run in families.  We just keep on keepin' on.

[Guitar_grrrl]

Also, I want to apologize for being sporadic on the forum, here.  Too much life getting in the way of living!

[HVAC]

Sorry about your sister Lupus is rough.

Alex

[supermum_ms]

Gosh Lupus can be just as difficult to dx as MS, probably more so. I so get "She wasn't tearful when she called, it sounded more like a big sigh - just letting out the breath" after 25yrs of so much going on and not having a name for it, must of been a big sigh!

Hugs to you and yours..........JJ

[rendean]

Sorry to hear about your sister. I'm sure you have worried about her as well. I am glad they finally figured out what is causing her problems so she can get to her new norm.

Sending ripples of good thoughts across the miles.

Ren

[twopack]

Well, we keep repeating here that lupus is just as difficult to diagnose as MS and here's some proof I guess.  I don't know why so many docs see one negative ANA and cross it off the list.  This is SLE then?  I sure hope they can apply the brakes to her disease process G-girl.

She should do fine with Praquenil.  I started taking it myself toward the end of last summer when it was determined my immune system had developed and launched a second auto-inflammatory disease attack.  I don't have an exact name for what's bothering me but the idea is to preserve integrity and function rather than wait for more to appear.  

The idea of needing Plaquenil is as difficult to embrace as my need for Copaxone.  There's no good measure for how effective it is or if its even doing anything AT ALL.  I swallow one pill down with faith in the mornings and another with hope each evening believing they are doing Something to protect me.

Sure hope your little sister can relax into living life with lupus now that she doesn't have to listen to that Big Question buzzing around so loudly inside.

Mary

[Deb61]

I'm glad to hear that she has answers . . .  This has got to be a relief to know what it is and start medicine to actually do something about it.  My sister and I both have autoimmune diseases, too.  

[anon07072023]

I'm glad they were able to pin down a diagnosis for her with the Lupus. And that she doesn't seem to be too overwhelmed by the news just, yet.  Now she has her big sister to help her cope thru a chronic disease. Although, with her other ailments, I'm sure she's fairly good at that already.

Autoimmune diseases run in my family, too. And my mom had hemochromatosis, my older brother has it, and I have the gene mutation for it, and am on the fence for it base on my labs.  

[debgen]

So sorry snout your sister's Lupus. Ibet you will both be a great support system for each other.
Be well,
Deb

[Ojibajo]

I'm so sorry that your family is going through so much, but grateful that all of your questions are finally being answered.

It sounds like it is hard to diagnose. I am already DX'ed with MS but have had both negative and positive ANAs, and I get the butterfly rash, so they are "keeping an eye on it" whatever that means.

I don't know how Lupus treatments work, but I'm praying that your sister will finally be able to have some good days now that she is diagnosed and on meds.

[zoefromsussex]

Hiya, sorry to hear about your sister's diagnosis. I think we can all relate to the 'sigh' thing as it's often such a relief to get a definite answer. I'm quite interested in the family link with autoimmune diseases. My dad had psoriasis & I have MS and my cousin has lupus. I hope your sister does well on her treatment. All the best to you

[bubbles_04]

Sorry to hear about your sister, but glad she has some answers now! I will be keeping my fingers crossed treatment goes well!