[Mottheir]

My 17 year old daughter, who has had SLE since she was 13, has been lactating and having almost no menses, for just shy of 10 months.

Her Rheumy first took her off Reglan, thinking it may be a side effect of the drug. To no effect. Then she had an MRI of her brain, but the pituitary looked normal. She has been having significant dizziness and nausea, along with abdominal and back pain.

Now the Rheumy said she wants to send her to a different specialist. (I just had surgery and was unable to go to this appointment w/my daughter & she can't remember what kind of specialist the Rheumy said it was, but she said it definitely wasnt a gyno...any ideas?)

Anyone had similar problems...and if so what was the causation?

Suz in Kansas, USA

 

[BigSis]

Hi there,
perhaps it was an endocinologist since this seems to be hormonal in origin.
There is a condition called galactorhea (?spelling) which causes loss of periods and lactation.
I'm sorry I dont know much about it.......try googling that term.

Good luck

 

[Mottheir]

Thanks!

Thanks so much...its kind of scary, so any info is appreciated!
Suz

 

[cemc]

Some drugs will trigger lactation too. I used to get it with amitriptylline, but I think quite a few medications will push the endocrine system (hormonal stuff) over the edge a bit and create symptoms like this. I would hope it is an endocrinologist that she has been referred to.

 

[lin]

it is scarey when it comes, i sat in the bath one night and it was comming through both my breast, there are medications that do cause this,
with me 2 of them did it, my number was so high. domperidome was one of them.................

i really hope they find your daughters out .

take care Lin xx

 

[julsie]

Hi Suz,
I too have always had high prolactin levels.I went through the MRI stuff and it was all negative.The consultant gave me tablets to bring it down.I've since read that a lot of people with Lupus have high prolactin levels(I'm still trying to get diagnosed).Sometimes it stops menstruation,sometimes it doesn't,as with me.In fact,I think I am one of those unlucky ones who never stops even when breastfeeding!
Julsie

 

[Mottheir]

meds & ?'s

She was on Reglan, but that was the first thing the dr stopped, and the symptoms continued.
She's a trooper, always optimistic, she actually didn't say anything for the first few months, not knowing it wasn't normal...but being 17 and having this going on for so long has been quite disconcerting for her and for her father and I.
I am hoping it will be an endocrinologist...if they refer her to a gyn, I will ask for an endo instead.

 

[blueisis]

Hi

I am also a lactating sle aged 44. I never stopped since stopping breastfeeding 13 years ago. I had numerous tests after being referred to an endocrinologist (still have him as my consultant after all these years too). My prolactin levels were high, they did a pituitary mri scan and they put me on Bromocriptine but I came off it asap as I found it had horrid side effects. The drs keep an eye on my prolactin levels (my last bloods were normal range though I am still lactating!). If you would like to know any more, please feel free to pm me as I dont want to go into too much detail here but I may be able to help you further.

Hugs

Julia