Autoimmune disease can take a number of different forms, including rheumatoid arthritis, lupus, multiple sclerosis, type 1 diabetes, and around 75 other, less well-known diseases. These diseases often stem from a genetic predisposition, but they also need an environmental factor to take hold.
Although these environmental triggers are poorly understood, some women claim that contraceptives, such as IUDs and birth control pills, directly caused their autoimmune disease. Out of the estimated 24 million Americans who suffer from these diseases, 80% are women. So is it possible contraceptives play a role?
What the experts say
Dr. Lisa Sammaritano, Associate Professor of Clinical Medicine at the Hospital for Special Surgery and Weill-Cornell Medical College in New York, explains that various parts of our immune systems are meant to fight off disease and infections. But sometimes the immune system can actually cause inflammation within the body. The underlying reason for this is not completely understood. But Sammaritano says it’s believed to be the result of the immune system mistaking parts of the body for external infectious organisms.
They’re not true genetic disorders in the way that, say, sickle cell is or other things…or cystic fibrosis—where there is an identified gene abnormality, and that is passed on to offspring or not passed on to offspring.-Dr. Lisa Sammaritano
Sammaritano explains that autoimmune diseases are, “…not true genetic disorders in the way that, say, sickle cell is or other things…or cystic fibrosis—where there is an identified gene abnormality, and that is passed on to offspring or not passed on to offspring.”
So if you’re the child of someone with an autoimmune disease you’re at an increased risk of also having an autoimmune disease but it’s not a certainty. So what environmental factors further increase the risk?
“That could be an infection that triggers the immune system and then doesn’t let it quiet back down again, as it normally would. Or other things… For example, we think of sunlight, UV radiation, as a possible trigger for systemic lupus. So there are all kinds of suggestions about what kind of environmental triggers might be important for different autoimmune diseases,” says Sammaritano.
Assistant Professor of Medicine at the University of Colorado-Denver, Dr. Kristen Demoruelle explains that exogenous estrogen from oral contraceptives has been associated with an increased risk of one autoimmune disease, lupus. But, again, it’s hard to come to any definitive conclusions beyond that without more extensive research.
There’s been a few studies in lupus that have suggested that oral contraceptive pills may increase the risk of developing lupus. On the other hand, oral contraceptive pills look like they may decrease the risk of developing other autoimmune diseases.-Dr. Kristen Demoruelle
“No studies have shown a causality between hormonal contraceptives and autoimmune diseases. But there have been some studies that have found an increased or decreased risk for developing certain autoimmune diseases with hormonal contraceptives. For example, there’s been a few studies in lupus that have suggested that oral contraceptive pills may increase the risk of developing lupus. On the other hand, oral contraceptive pills look like they may decrease the risk of developing other autoimmune diseases,” says Demoruelle.
So what does that mean in terms of autoimmune diseases being triggered by IUDs? Demoruelle’s study in 2014, presented to the American College of Rheumatology, found that women using IUDs may be at increased risk for producing antibodies linked to rheumatoid arthritis. Furthermore, case reports presented to the World Allergy Organization have linked autoimmune progesterone dermatitis to use of an IUD. But studies haven’t yet come back with enough evidence for researchers to say there is a definitive causal relationship.
To that end, Sammaritano says she’s seen side effects that may be from IUDs. But she can’t say with any certainty that the contraceptive causes autoimmune disease.
A first-hand account
That’s what makes cases like Kristy Griffin’s so hard to explain. Griffin, a woman who primarily suffered from Hashimoto’s disease, claims the use of an IUD caused her to contract Sjogren’s disease.
“They inserted that [IUD], and I was back within a week. One week. Something was absolutely, horribly wrong,” says Griffin.
Her reported symptoms included being unable to get out of bed and barely able to move her joints.
“At the time I thought that the hormone levels had… caused a flare up of my Hashimoto’s. Because the joint pain was always something that had been a trigger for me before if I had a flare up with the Hashimoto.”
After visiting more than one doctor who told Griffin IUDs could not cause those symptoms, she tested positive for antibodies for Sjogren’s syndrome–another autoimmune disease that Griffin says is sometimes called ‘lupus’ evil sister.’
Her rheumatologist said the IUD had to come out right away. Soon after, Griffin’s condition improved.
So where does that leave women like Kristy? She says her rheumatologist was aware of a potential connection to autoimmune disease, and diagnosed it immediately. To her, the causal relationship was absolutely a reality.
But experts like Demoruelle and Sammaritano caution that too little is currently known for them to begin advising against specific methods of contraception. Especially IUDs, which have the benefit of being a long-acting reversible contraceptive–generally accepted as the most effective form of birth control.
- Dr. Lisa Sammaritano, Associate Professor of Clinical Medicine, Hospital for Special Surgery and Weill-Cornell Medical College
- Dr. Kristen Demoruelle, Assistant Professor of Medicine, University of Colorado-Denver
- Kristy Griffin, Hashimoto and Sjogren’s disease sufferer
Links for more info:
- Lisa R. Sammaritano, MD – Hospital for Special Surgery
- Kristen Demoruelle, MD – University of Colorado Anschutz Medical Campus – Division of Rheumatology
19-20 Can IUDs and Other Contraceptives Trigger Autoimmune Disease?
Reed Pence: This is Radio Health Journal. I'm Reed Pence. This week: Might some contraceptives make autoimmune diseases worse?
Kristy Griffin: The doctor said, no way… He's like, I think you're fine. And I'm like, I'm really not. And if you think I'm fine, I'm going to go to another doctor.
Pence: What we know and what we don't about a possible connection. When Radio Health Journal returns…
Pence: Autoimmune diseases include disorders that everyone's heard of: rheumatoid arthritis, inflammatory bowel disease, multiple sclerosis, type 1 diabetes. They also include another 75 or so less familiar ones like Sjogren's Syndrome and Myasthenia Gravis. Of the estimated 24 million Americans who have autoimmune diseases, about 80% are women. They occur when the immune system goes haywire.
Dr. Lisa Sammaritano: We all have an immune system, or most of us do, that is supposed to fight infection. And it's set up to do that. And there are various components of the immune system, different kinds of cells, antibodies, other things we call cytokines. And together that protects us from infection.
Pence: That's Dr. Lisa Sammaritano, Associate Professor of Clinical Medicine at the Hospital for Special Surgery and Weill Cornell Medical College in New York.
Dr. Sammaritano: In some cases, for reasons we don't completely understand, the immune system can turn against us and can actually cause inflammation within the body. Presumably, mistaking parts of the body for external infectious type organisms. And so when that happens, that's what we call an autoimmune disease.
Dr. Kristen Demoruelle: We think of autoimmune diseases as an abnormal or dysregulated immune response. So instead of the immune system attacking a foreign invader, like an infection starts to attack your own cells or your own organs. So your body really thinks your own cells are foreign and it starts to attack them as if they were a foreign invader or an infection.
Pence: Dr. Kristen Demoruelle is Assistant Professor of Medicine at the University of Colorado, Denver.
Dr. Demoruelle: There's definitely genetic predispositions to autoimmune diseases, and they vary on the strength of how strong that genetic predisposition is. For example, with rheumatoid arthritis, a kind of general and easy way I like to explain the risk is that, in general, about 1% of people in the United States will get rheumatoid arthritis. If you have one first-degree relative with rheumatoid arthritis, so that being either your parents or your sibling or a child, that will increase your risk to about 3%. If you have two first-degree relatives with rheumatoid arthritis, it can go up to about 9%. So I think that highlights two important points with the genetic predisposition: that the risk is increased if you have it in the family. But it's not 100%. And we also see certain people develop autoimmune diseases who don't have a family history as well.
Dr. Sammaritano: They're not true genetic disorders in the way that, say, sickle cell is or other things…or cystic fibrosis—where there is an identified gene abnormality, and that is passed on to offspring or not passed on to offspring. So, as the offspring of someone with an autoimmune disease, you are both more likely to have that autoimmune disease and to have other autoimmune diseases. They've actually shown that in a recent study, looking at offspring of women with lupus. They were more likely to have things like Hashimoto's, thyroiditis, and other autoimmune diseases.
Pence: Autoimmune diseases can range from mild to life threatening, depending on the location and the severity of the inflammation. And even if someone has a genetic predisposition for an autoimmune disorder, they may never get one at all if they don't run into an environmental trigger.
Dr. Sammaritano: That could be an infection that triggers the immune system and then doesn't let it quiet back down again as it normally would. Or other things, for example, we think of sunlight, UV radiation, as a possible trigger for systemic lupus. So there are all kinds of suggestions about what kind of environmental triggers might be important for different autoimmune diseases.
Pence: Sammaritano and Demoruelle say one potential trigger may be hormonal contraceptives.
Dr. Sammaritano: For example, estrogen is something that has been associated with an increased risk of lupus. Estrogen in the form of exogenous estrogen, such as oral contraceptives, cigarette smoking. There are a lot of environmental triggers like that that have been suggested. But it's hard to know for sure, obviously, because the data are limited.
Dr. Demoruelle: No studies have shown a causality between hormonal contraceptives and autoimmune diseases. But there have been some studies that have found an increased or decreased risk for developing certain autoimmune diseases with hormonal contraceptives. For example, there's been a few studies in lupus that have suggested that oral contraceptive pills may increase the risk of developing lupus. On the other hand, oral contraceptive pills look like they may decrease the risk of developing other autoimmune diseases, like rheumatoid arthritis. So hopefully that's not confusing, but it does highlight that a lot more research needs to be done in this area. Some of these studies can be a little complicated to interpret because they use different approaches to try to answer these questions. And so sometimes we're left with contradictory results, where one study may suggest an increased risk, and one study may suggest a decreased risk. But overall, it seems that they could influence the development of some autoimmune diseases. But I think we just really need to know more about how exactly that's happening.
Pence: The consideration of other contraceptives as a possible trigger is a little more undecided. But don't tell that to Kristy Griffin. She's a 38 year old woman from the Mountain West, who already had Hashimoto's disease, an autoimmune disorder that causes an underactive thyroid. Last fall, her obstetrician-gynecologist told her that using a hormone releasing IUD would help with an unrelated condition, uterine fibroids, and buy her some time before she'd need a hysterectomy. It didn't work out.
Griffin: They inserted that thing, and I was back within a week. One week. Something was absolutely, horribly wrong. I was so tired I couldn't get out of bed. My joints, I could barely move. And I said something's wrong… At the time I thought that the hormone levels had activated caused a flare up of my Hashimoto. Because the joint pain was always something that had been a trigger for me before if I had a flare up with the Hashimoto. And he's like, IUDs can't do that. And I'm like, I'm beginning to think they can.
Pence: Kristy's OB GYN sent her to her general practitioner for a thyroid hormone test.
Griffin: So I went into the general practitioner and I said the same thing. These symptoms started right when this IUD went in. And the doctor said, no way. He's like, I think you're fine. And I'm like, I'm really not. And if you think I'm fine, I'm going to go to another doctor. They tested my thyroid levels and they're like, you're fine. You're imagining it. I absolutely wouldn't take no for an answer, so I went to a different doctor who instantly realized that it was probably a different autoimmune disease that I was dealing with, and tested for the Sjogren's.
Pence: Kristy tested positive for antibodies for Sjogren's syndrome, another autoimmune disease that she says is sometimes called lupus’ evil sister. She had never had Sjogren’s before.
Griffin: You're looking at this list of symptoms that are going to hit you throughout your life: Dental decay, problems with saliva to the point where people aren't able to eat properly, swallow their medications…chronic fatigue to the point where about 25% of people with this disease will eventually go on disability. About two thirds of people will end up with lung disease, and a ton of people have issues with neuropathy, and gastrointestinal issues as well.
Pence: The new doctor, a rheumatologist, said the IUD had to come out, right away. Kristy's condition improved.
Griffin: Almost immediately. So I still have Sjorgen’s, and I can still have flare ups, and I will for my entire life. But when that thing was put in, I had an immediate flare up that was just horrendous. And within a week of it coming out, that flare up stopped.
Pence: But does that mean that autoimmune diseases can be triggered by IUDs? Demoruelle’s study in 2014, presented to the American College of Rheumatology found that women using IUDs may be at increased risk for producing antibodies linked to rheumatoid arthritis. Case reports presented to the World Allergy Organization have linked autoimmune progesterone dermatitis to use of an IUD. But studies haven't yet come back with enough evidence for researchers to say there's cause and effect. Sammaritano says she's seen side effects that may be from IUDs. But autoimmune diseases? She can't say that.
Dr. Demoruelle: I had one patient who had a progesterone IUD placed and developed hair loss. And, you know, pretty unusual side effects, but it all got better when she had the IUD removed. So I do think that IUDs, as with any kind of medication, can cause side effects. But really, not ever, has there been a suggestion that an IUD causes an autoimmune disease. In fact, the hormones that we worry about with respect to causing lupus, like autoimmune disease, that hormone is estrogen. That is not the hormone that's present in the hormonal IUD. That has a progesterone-like compound. So I'm not aware of any data that would support an association.
Dr. Sammaritano: IUDs have not been linked to causing autoimmune disease, but this is certainly an area that needs more research. I think with the increase or the prevalent use of IUDs, it's even more important for us to consider if these contraceptive methods are having systemic effects, and whether or not they may be influencing autoimmune disease. Something like an IUD, which can cause inflammation in the female genital tract, that's probably part of how it has some of its contraceptive effect. We need to understand more about how this inflammation at these mucosal sites could be influencing these diseases. And we really don't know at this point, but that's certainly an area of interest going forward.
Pence: In fact, far from warning women with autoimmune diseases away from IUDs, Sammaritano says, for them and for most women, IUDs are a first line form of contraception.
Dr. Sammaritano: They are very much safer and better tolerated, usually, than IUDs in the past. And their efficacy is less than 1% chance of pregnancy over the course of a year, as compared to something like 10% chance for an oral contraceptive. So we actually encourage our patients with autoimmune disease to get IUDs. Because we think that it's a good way to prevent unplanned pregnancy. For our patients, pregnancy is a huge issue. It isn't something that we take lightly, because especially for lupus and antiphospholipid, it can really pose a lot of health risks. Having active autoimmune disease at the time of conception is not a good prognostic factor for outcome, either for the patient or for the outcome of the pregnancy. So because of that, we are very proactive about counseling about contraception. And obviously IUDs are an important part of that.
Pence: So where does that leave women like Kristy? She says her rheumatologist was aware of a potential connection to autoimmune disease, and diagnosed it immediately. But Demoruelle says too little is known to caution against specific methods of contraception. And, once triggered, autoimmune diseases tend to never go away.
Dr. Sammaritano: In general, we consider autoimmune diseases to be chronic diseases. They can go into phases of remission-like states. But in general, we don't consider them to disappear or go away completely. I think one area where we know a little bit more about getting rid of a potential trigger is in smoking and rheumatoid arthritis. We know smoking is associated with rheumatoid arthritis. If you stop smoking, it does take a little bit of time, but eventually individuals will decrease their risk back down to the general population. And so that would be an example of a time in which, if you know what a potential trigger is, removing that could be helpful for preventing the disease.
Pence: Medication to treat autoimmune disease focuses on cutting down inflammation. Some immunosuppressant drugs are even borrowed from the transplant population. But some medications have severe side effects and shouldn't be taken for too long. Kristy's on anti-inflammatory medications and over-the-counter drugs for dry eyes and dry mouth. But she knows her life will never be the same. And she doesn't want anyone else to go through the same thing.
Griffin: I'm one of those people that kind of starts planning their hiking season before the ski season has even ended. So for me, we're talking about a complete change in my life. Everything that I wanted to do with my life, I'm probably not going to be able to accomplish that.
You can find more about all of our guests on our website, radiohealthjournal.org. I'm Reed Pence.
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