Lupus and Birth Control

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New Member

Date Joined Dec 2013
Total Posts : 9
   Posted 12/21/2013 9:59 AM (GMT -6)   
Hi, I know it's kind of personal, but what kinds of birth control are you all taking? With these toxic medicines my family planning has been put on the back burner for now. My doctors told me to stop my estrogen birth control that I have been on for 15 years, because of blood clots. My obgyn thinks the IUD is my best option, but it still has progesterone. Also, my rheumatologist is concerned I might have anti phospholipid syndrome, but we won't have those results for another four weeks. Any tips?

P.s. I am a twenty something married woman... Not that it matters, but just for marker on where I am in life.

Regular Member

Date Joined Dec 2013
Total Posts : 28
   Posted 12/21/2013 5:11 PM (GMT -6)   
My rheumatologist told me so. Even if I don't show any symptoms except the blood test he asked me to stop them. he told me the estrogen is not friend with lupus, but he didn't say something about progesterone. I have the same problem because without birth control I have big menstrual problem:( but I decided not to start a fight with lupus so... I gave up my pills.

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 12/22/2013 11:22 PM (GMT -6)   
Hormones can affect lupus a lot. I know that several women decide to take the risks and take the pill and others are willing to use other forms of BC.

I have to admit when I was younger, and long before I was officially DX'd with lupus I was on the pill. I however, had stage 4 endometrosis and I needed the BC to help with my monthly cycles. Did the BC bother my lupus, looking back on it probably, but it also helped with my GYN issues. I still ended up needing a total hysterectomy at age 32.

It's a total personal choice for you, I'd talk with your Dr's and if they don't have a lot of experience with lupus and how hormones affect it, I'd try to contact a Rheumy who has a lot of knowledge about it.

Take care and Merry Christmas to you.

DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Regular Member

Date Joined Jun 2013
Total Posts : 25
   Posted 12/31/2013 10:45 AM (GMT -6)   
I use an IUD with progesterone, and have for over 5 years now. Other then pain when got it put in/changed I do well with it. I wanted to use the one without hormones, but since I have endometriosis I need hormones to keep it in check.
However, I do not have anti-phospholipid syndrome. I hope it comes back negative for you too. A very good friend of mine has it (but not lupus) and she does very well with keeping it under control and just had a healthy and successful pregnancy, so it is manageable :) Best of luck!


Regular Member

Date Joined Dec 2013
Total Posts : 28
   Posted 2/10/2014 12:45 PM (GMT -6)   

I chose to write here because my problem is related to Lupus and birth control.
I had been on birth control for almost 5 years before I had to stop them because of some Lupus issues. I'm not going to tell you everything about my Lupus because I have already written on the forum before. But in a brief presentation I have no any kind of symptoms but my blood test are the following:

ANA - positive
Anti-dsDNA 600 (<200)
Anti-Ro(SSA) 30 (<20)
cAnca 32 (<20)

So, no symptoms but a high likelihood to develop the disease so, the doctor forbade me to do things that can help Lupus like: sun and birth control.

My another problem is a GYN problem. Every month, exactly 10 days before my period I have a little little bleeding and during the entire period of 10 days I have brown secretions and after these 10 days my period comes up. My periods are every month at 33-34 days. I went to GYN and they explained to me very briefly that it's a hormonal disorder consisting in low progesterone level in the bleeding period of 10 days. He recommended me birth control for that even if I explained to him I'm no longer allowed to take these pills of my Lupus issues. I have thyroid disorders too, so it's very likelihood to have hormonal disorders. I don't know what to do. I prefer bleeding 15 days a month instead of an active Lupus. On the other hand I have been having bad blood test (for Lupus) for almost 3 years and no symptoms and sometimes I'm thinking that the test are bad because I have Vitiligo and Autoimmune thyroid (two autoimmune disease). I don't know what to do, I would like to start again my birth control but I won't forget myself if it'll trigger my Lupus:(. The went to many doctors but it seems to me like they refuse to interact each other and each of them treats just their side of medicine :(

I don't know what to do and I don't know if having these bleeding periods it's not harmful for my health.The doctor explained to me that it's harmful only for my fertility.

Thank you,
Vitiligo, Autoimmune thyroid, maybe Lupus ( the doctors haven't decided yet).

“In three words I can sum up everything I've learned about life: it goes on.” ? Robert Frost

Beating Lupus
New Member

Date Joined Feb 2014
Total Posts : 12
   Posted 2/11/2014 8:56 PM (GMT -6)   
I was told similar thing by my rheumatologist, that oral BC pills are bad for lupus patients. For me he said I needed to avoid them because I also tested positive for lupus anti-coagulant, which is like antiphosphlipid syndrome, both are clotting disorders. And BC pills increase the chance of blood clots, so if you are already at risk of blood clots, you should not take BC pills and add to the risk. So my rheum recommended an IUD. (Murena for me). I don't have issues with periods with it.
Talk to your rheum and gyn and see what they say! But with all the options, Mirena was the best for me. (it secretes low local dose of estrogen but does not raise risk of blood clots).
Best part about it is no period! So for anyone who has heavy periods and cramps, this may be a good option!

Good luck :)
Lupus conqueror, Fibromyalgia, Hypothyroid, Asthma, IBS...I got your number :)

Regular Member

Date Joined Dec 2013
Total Posts : 28
   Posted 2/11/2014 11:12 PM (GMT -6)   
Just few more questions:
- May be IUD harmful for my future fertility? I'm asking that because I haven't had any child yet and I'm 29.
- What endometriosis is? I mean I have read about that on internet and I have seen there can be bleeding between the periods. Can my problem be endometriosis?

Maybe I got crazy starting to diagnose myself ...
Vitiligo, Autoimmune thyroid, maybe Lupus ( the doctors haven't decided yet).

“In three words I can sum up everything I've learned about life: it goes on.” ? Robert Frost
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