Does the Mirena coil cause flare ups and / or make them worse?

I was diagnosed with lupus 6 months ago.

I was treated for endometriosis about 3 years ago now, had a D&C and at that time was fitted with a Mirena coil. (The Mirena releases a progestin hormone called levenorgestrel into the uterus and was recommended to me at the time to help prevent heavy periods and risk of recurring endometriosis.)

A few months after insertion, I was hospitalised with what was thought to be meningitis. Following a recent re-examination of results of samples taken of spinal fluid at the time, it turns out that what I had actually experienced was swelling of the meninges due to lupus.

I am now wondering if the Mirena had anything to do with that flare up... On the net I have come across a number of discussion threads where people claim that the Mirena has either caused lupus or made it worse. I have also read it should be used "with caution" in lupus patients. Just wondering if anyone has any thoughts, please...

Since the "meningitis" episode I have never felt right and I have no energy or stamina. My lupus symptoms have got a lot worse since the Mirena was fitted, although the endometriosis obviously preceded it.

If I have it taken out, my heavy periods and PMS will return and I guess I am at risk again of endometriosis.

I have an appointment with my Rheumatologist on Thursday morning and I am debating about whether I should ask her for a referral to the Gynae to have the Mirena removed.

Any thoughts greatly appreciated.

x

8 Replies

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  • I have the Mirena fitted, it was my last contraceptive option and I also have Lupus, other than some initial problems with rejection but some antibiotics and painkillers and monitoring I was fine.

    My Lupus has been neither better or worse with it in but I would not say it has made any difference and it is reccomended by some Rheumys as it can be used long term. One Benefit of the Mirena is I do not have periods anymore and this is a bonus in my eyes as I get heavy periods and seriously bad Moodswings and all other contraceptives either made me worse or just were not effective... I got pregnant on Cerazette and the Injection made me really ill stick with Mirena.

    Katie

  • I discussed contraception with my Rhuemy last month. She advised me to have the other coil fitted that doesn't have any hormones in them. It's copper I think. She said that Lupus can be affected by oestrogen and to reduce the risk of a flare it would be better to go for the copper coil.

    As yet I haven't had one fitted but I've since come to the conclusion that maybe two children and Lupus is enough to cope with so I'm considering sterilisation now!

    Hope this helps

    Alison

  • This is interesting as although I don't have a coil (I have an implant) my story seems quite similar to yours. I had zero health problems until I had my first implant fitted at the end of 2008. Every holiday I've been on since I have had bad allergic reactions to the sun, and over the years suffered more problems. I had my implant changed at the end of last year and became really ill a couple of days later (rash all over body, terrible joints so that I could barely walk for a week etc) and got diagnosed with lupus in February this year. I have no idea whether the implant caused my lupus or just made the symptoms worse. I have tried asking both my gp and my lupus consultant but they said they don't know and that it shouldn't affect it. I just have a gut feeling that it must have done something as too much of a coincedence otherwise. Please keep me updated on anything you discover.

  • Hi I'm on my 2nd mirena coil, the first one I had in for 5years, this one I've had in about 2 years. I've lupus, psoriac arthritis, fibromyalgia, sgogrens and raynauds and it looks like I now have hughes also! (Have an appt with prof hughes in august) I don't feel as the mirena has made any differences to my illnesses aS I was quite unwell even before having the first one fitted. I have deteriod a lot over the past few years but I think that's just from the progression of the diseases nothing to do with the mirena. I have to cope with a lot daily so feel the benefit of not having periods, monthly tummy cramps etc far outways any risks from it x

  • hi,i had the mirinea coil put in,and im sure it induced a cyst on my left ovary,had to have it removed last november,along with my ovary,which was a shock..ive had pcos,for years now..but doctor said it wasnt polycystic.so when i read side affects on mirena coil,it said it can induce cyst,so i belive it did..ive now been dionosed with lupus,since jan.and to tell the truth never felt so ill in my life,its so hard to cope with,im worried that the coil started something up in me ..so when i read your question.i felt i must tell you whats happened to me .i had it removed last month,and will never have it again,im know doctor ,but i think,some of those hormones in coils are far to powerful for some women.so please be really carefull when choosing contraception,ive just tuned fifty,so i will use condoms from now on.they should really look into this with lupus patients,were far to fragile .take care x

  • Thanks so much for the responses x x

    I have just been to see my Rheumatologist and she said that she really couldn't recommend any kind of hormonal treatment for somebody with lupus, as it is likely to cause flares.

    She recommended that I have the Mirena removed, although when I asked her about the potential recurrence of endometriosis as result of having it removed, she said that I would have to ask the gynaecologist about that.

    FYI - she was unable to refer me to the gynae direct, as GPs have to make referrals. I have an appointment with my GP later this afternoon to ask for the referral to the gynae.

  • Just a quick update on this one. I went to my GP yesterday to ask for a referral to have the Mirena removed. The GP strongly advised against it as she said that the probability of the endometriosis recurring without it was very high. She said there was a limit to the number of laparoscopies one can have to remove endometriosis due to scar tissue being created and so Mirena really is the best option.

  • Very interesting question. I had a severe reaction to the mirena coil in 2007: constant bleeding, worsening of long standing migraines, and physical collapse on 3 occasions. My Gynae and GP said there was too little hormone for the mirena to be the cause, but after the 3rd collapse I insisted on it being removed. The bleeding and "collapses" stopped but I continued to have horrendous migraines, premenstrual pain and fatigue, to the point that I stopped working in 2009. I was subsequently diagnosed in 2011 with Lupus, Sjogrens and Hughes (although I suspect I had suffered undiagnosed since childhood). I too had endometriosis and fibroids and had a hysterectomy in 2010. My vote would be to remove the mirena.

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