Pregnancy-associated osteoporosis

cathyd
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I was diagnosed with osteoporosis at the age of 37, two months after my first child was born. At that time I started having severe back pain. X-rays and MRIs showed multiple vertebral compression fractures and a subsequent DEXA showed that my bone density was extremely low (Z score at spine -4.7 and at hip -2.5). I was breastfeeding at the time and was eventually told by an endocrinologist ( 4 months later!) that nursing sucks the calcium out of your bones. I finally weaned my daughter at 7 months.

I'd like to have another child, but am terrified that I'll experience more fractures. I haven't gone on any medications because the endocrinologist says they don't know how long they remain in the body and what effect they would have on a fetus. My bone density has been increasing steadily post-weaning. My hip score is almost normal, but my spine score is still in the osteoporotic range.

Has anyone experienced this also? Did you go on to have more children? This condition seems to be extremely rare as it is hard to find information on it and many doctors, including my OB, are not familiar with it. Any information would be very much appreciated!

Cathy

31 replies

T1

I'm 31 years old and am 34 weeks pregnant with my second child. Fortunately, my osteoporosis was diagnosed when I was in my late 20s, so we (me, my husband, my OB, my endocrinologist) knew what we were dealing with during my first pregnancy, as well as during this pregnancy (my son was born in 12/2004).

I nursed my son exclusively for six months, and I've been able to wheedle 3-6 months of nursing this next baby from my doctors. You have a wise endocrinologist - from my understanding, under no circumstances should you take an prescription osteoporosis meds until you are sure you are done having children. It's good that your bone density is increasing - that's exactly what it should be doing now that you've weaned!

Discuss this with your endocrinologist and your OB, but it is my understanding that pregnancy isn't nearly as hard on your bones as nursing is, so pregnancy = OK, nursing = discuss with your docs.

And, as you've learned, there's next to no literature out there on nursing with osteoporosis, and most breastfeeding resources are absolutely no help on the issue. Basically, my docs gave me a VERY WARY okay on nursing this next baby for 3-6 months under the condition that I not start running again until well after I've weaned, and also that I go out of my way to avoid fractures. I can accept those conditions, and my husband keeps me in line with the ladder-climbing, etc. ; )

In the meantime, I take plenty of calcium, vitamin D, I eat a calcium-rich diet, I practice yoga, I'll do post-partum pilates, and because I'm having a c-section (my son was a failed induction followed by a c-section - and a broken rib during labor!), I'll be in the hospital for several days, I'm going to have a DEXA a day or so after I deliver, and a few more times while I'm nursing (my doc is curious, and so am I).

Good luck, and let me know if you need help tracking down resources. There's a doctor in Canada who is researching lactation and osteoporosis, and I participated in a great premenopausal osteoporosis study in NYC that I highly recommend.

Marty1

Wow this is very interesting to me.

In Nov I was diagnosed with osteopenia - my scores were -2.0 and -2.1. I am 36 years old.

I weaned my 3rd child in September after nursing her for 18 months. My first two I nursed for 12 months and 14 months, respectively.

I've always eaten well and supplemented my calcium during pregnancy. I had no idea that nursing could be so harmful to your bones.

I have a strong family history of osteoporosis and am trying to avoid any medications other than calcium/ vitamin D supplements. I think that out family is complete, but I am still not 100% sure with that decision.

I'd love it if you could share any information that you have with me.

Thanks,
Marty

knowplanb

Please write me. I can put you in contact with someone that can help.

cathyd

I had no idea that nursing could be so harmful to your bones either. The nursing literature rarely mentions it or states that bone density recovers 6 months after weaning. I don't know where that comes from because they never cite any studies. From all I've been able to research on the internet and from what the 2 endocrinologists I saw said, it can take 3 years post-weaning before bone density returns to pre-pregnancy levels. My bone density had improved significantly 2 years after weaning. Your numbers aren't nearly as low as mine were, so maybe it's possible that your numbers could get back to normal after a few years?

In my case, the endocrinologist advised that I not try to get pregnant again for at least 2 years after weaning. Of course, my OB said given my age I couldn't wait at all!

Another thing that you never hear about is how important it is to get adequate calcium in the post-weaning period. Why don't our doctors tell us this? I found out from research on the internet. It sounds like you're watching that though.

The only other thing I can say is be EXTREMELY careful how you lift things. My endocrinologist told me to prevent further fractures, it's very important to keep objects as close to your body as possible when lifting them and of course, try to keep your back straight. Lifting things out away from your body increases the pressure on your spine exponentially. This is easier said than done when dealing with children! But what caused my first fractures was simply lifting my daughter up in her car seat - they are so awkward to carry!

There have been some studies done on osteoporosis and pregnancy, interestingly enough, all done in Europe or Great Britain. Google pregnancy associated osteoporosis and you'll get a number of links to medical research journals.


I hope this helps.

cathyd

Thank you so much for your reply. My OB also says that pregnancy is not as hard on the bones as nursing. Unfortunately, my endocrinologist has said no nursing if I have another child. My Z scores are just too low. But I can live with that as long as I can get through pregnancy and delivery without more fractures! I feel for you with a broken rib during delivery. I know how painful those are!

I would be interested in any resources you have. The only information I've been able to find on this condition is from studies done in Europe - perhaps it's more prevalent there?

Congratulations and good luck to you with the birth of your second child. I too would want a DEXA scan right after too!

MelissaRichardson

Dear Cathy
I had osteoporosis of the hip in the last trimester of pregnacy, 18 years ago. Symptoms gradually subsided after the birth of my son, and I continued to breastfeed for 12 months. Bone density score returned to normal within that period. I was not intending to have another child as the first pregnacy was so painful, and at the time I could find no-one who had had my experience and who had risked another pregnancy. However, I was determined and I did go on to have another child 5 years later. My endocrinologist monitored the bone density throughout the second pregnancy - when levels began to dip inthe last trimester I had daily injections of calcitonin. I had no symptoms at all with the second pregnancy and delivered a second beautiful son.
If you Google the disease you will find various references which say that it rarely recurs in subsequent pregnancies.
Good luck
Melissa

cathyd

Thanks very much Melissa for your inspiring story! I too had not known anyone else with my experience and have been second guessing whether I should risk another pregnancy. I'll ask my OB about calcitonin injections - anything I can do to prevent more fractures!

46ma7su

Cathy -

My story is the same as yours - but I gave birth to my first child, a son, 22 years ago at the age of 31 and was started looking for answers to steadily worsening pain in the lower (lumbar) back that begun about a month and a half after his birth.

While I ended up seeing doctor's at the foremost clinic in the PNW, back then they indicated that I was such an unusual case that they (1) weren't willing to write pregnancy induced osteoporosis and (2) strongly advised me NOT to try having additional children.

Breastfeeding resources at that time, while extensive, did not indicate this could be a problem. Of course, I wasn't planning to have osteoporosis. The only cases in my family were a handful of members who showed symptoms past retirement age.

While I wondered if breastfeeding might be a factor and inquired about it from the time I learned I had suffered 3 compression fractures in my spine, I wasn't advised to stop until the doctor's had eliminated other causes for my bone loss. So I ended up weaning him at five months.

It was a scary time - particularly because starting with my personal family physician who helped me with the birth, no one was primed with the kind of information it appears is out in the world today (even what little it is). A few on my medical team were more interested in me as a clinical phenomena and I felt a lack of attention, address and connection almost to this day for the part of me who was the frightened new mom.

Before I was sent home with instructions to return having completed menopause, one of the younger doctor's inquired if I might participate in a secondary study by contributing a section of my hip. He added that what discomfort I might feel at the time should not be much more (than apparently I was going through at the time).

The worst memories I have from the era was the terrible sense of isolation. I asked my doctors for example if support groups were out there for women like me. Their reply was they highly doubted it. I also asked them for referrals to articles, books to help educate myself...and they told me with exception of a few articles in medical journals (not written for the layperson)...most likely there wasn't anything.

I'm posting this because I want you to know that I empathize with your situation, and also admire how you are going about coping with the large plate of issues you've been handed in this chapter of your life.

And I want you to know I'll be among those unknown and unnamed folks who are cheering and offering prayers and encouragement for you and your family from the sideline.

From the looks of the input and advice you've received here, I'm also glad to discover that women today have more information and options (be what it may) than I did back then.

Best wishes,
Been There in the PNW

tam512

Well I am very happy to have found this posting. About a year ago I was diagnosed with pregnancy-induced osteo with a similar story... persistant back pain about 4 months after my second child was born, eventually got MRI, showing MANY compression fractures, and a bone density of -2.9 in the spine.
IT's a year later, and i'm still dealing with the pain of the fractures, but am wondering about having more children. Although I am happy that we have two healthy children, my husband and I always planned on a big family.
My OB thinks i'm nuts to even consider it (although he didn't come out and say that, but it was certainly his opinion based on the expression on his face!), and i'm seeing my endocrinologist in a few weeks to discuss it. She had told me that she "wouldn't rule it out" when I was initially diagnosed. 6 months after my diagnosis (which was when i stopped breastfeeding), my bone density had gone up to -1.4, so i was happy with that, but i just don't know if it's crazy to go through another pregnancy with the chance of this happening again.
I have a question for the member who said that her bone density was monitored during the second pregnancy.... Did you get Dexa's throughout the pregnancy, or was there another way to monitor? I just figured it wouldn't be possible to monitor BMD during the pregnancy.
Thanks!!! This is wonderful to find a discussion on this topic!!!

kate5

I have a similar story...6 months into nursing my third baby in 5 years, I was diagnosed with severe osteo at 36, with 7 vertbrea fractures.

My questions: how did you/your docs know that your osteo was pregnancy related?

I'm scheduled to start Forteo, but wonder if mine is pregnancy related and will just get better on its own...
Thanks!

cathyd

Well, in my case, my bone density numbers were so bad at the time I suffered fractures that the docs said I must have had either osteoporosis or osteopenia before I got pregnant that was just made much worse through pregnancy and breastfeeding.

One endo I saw 6 months after the osteo diagnosis mentioned Forteo as an option, but my thought was don't fool with Mother Nature. All women lose bone density during pregnancy and breastfeeding and all the research shows that women regain it naturally over time. So I said no to Forteo.

I've had annual DEXA scans since then and my bone density has improved so significantly on its own in the past 3 years that my new endo (didn't like the old one) said no medication currently available could achieve those results so I was better off waiting until my bone density finally stopped increasing before considering medication. Unfortunately, my bone density numbers are still in the basement, so I'll have to go on something once I'm done having children.

Hope this helps.

Cathy

NCH

Hi everyone

Just found your posts and relieved to hear there are others in my situation. After having my daughter in Nov 07 I started to suffer from severe backache that was not taken seriously by my doctor. To cut a long story short eventually weeks later had a x ray which showed I had 3 fractured vertabra. My daughter now 6 months old and I still need help lifting her etc although the pain is alot better. Get my Dexa scan results this Thursday, so fingers crossed although my original x ray did diagnose fractures caused by osteoperosis.
I'm in the UK and has taken ages to get results and have no info other that what i've found myself. Awful not being able to care for my baby myself and like you am still keen to have another baby!!
Just thought would tell my story and wish others in same situation all the very best for the future xx

cathyd

Hello NCH -

I'm so sorry to hear that you share our problem, but happy you found this site. I know just what a terrible feeling it is to not be able to take care of your child by yourself. For me, that was the hardest part of all this. My husband and I ended up having to hire someone to help me with our daughter for 4 months until my fractures finally healed. But they did and then I was able to lift her. I never took it for granted again!

Since you're in the UK, have you checked out the National Osteoporosis Society website? You probably have but thought I'd mention it just in case. They had a helpful brochure about pregnancy associated osteoporosis that I sent away for and their website said they had a list of people who had experienced it who have volunteered to talk by phone or email to those newly diagnosed with it. It seems from my research that there is much more awareness of this condition in the UK than here in the US.

The very best of luck to you too!

SaraMeeks

I am not familiar with all the issues surrounding getting pregnant again, nursing etc; however, I do hear several of you saying you have been told to avoid fracture. Did any of the doctors actually tell you how to do it or send you to a physical therapist skilled in osteoporosis management.
I would suggest a few things:
1. Practice good body mechanics -- that means learning how to lift and do other ADL's without undue bending, twisting and side-bending of your back. Not an easy thing to do with small children!
2. Consider wearing a brace. There is a new one called the Spinomed III that actually is a active brace--designed to be used when you are up and active and which strengthens, not weakens, the back. You can contact me privately for information on this brace or go to www. mediusa.com for information.
3. Do exercises that strengthen your back extensors. Strong back extensors help reduce the incidence of fracture. It would be best to get professional instruction.
4. Avoid spinal flexion exercises such as abdominal crunches, sit-ups, knee-to-chest, toe-touches etc. These have been shown to dramatically increase risk of fracture.
Hope this is helpful. Osteoporosis can be a very scary thing because it is frequently silent and one can sustain silent fractures for years without realizing it.

MotherGoose

Dear Kate5:
Are you finished with childbearing? Noble an activity as it is -- along with nursing -- you DO owe yourself and your family as strong a body as you can muster. (I had 5 children in 12 years).
As for diagnosis, well, where else do you think this bone loss came from?
Anorexia in earlier years? As an "elite (female) athlete"with amenorrhea?
Bearing and nursing 3 children in 5 years IS quite a burden on your body -- although your case is not common.
Those vertebrae did not heal in their original shape -- like a fractured arm might. Do not risk further bone loss as you get older. Back problems do not get better as we age -- they just get managed better (we hope).
You have many years ahead of you and need your strength -- physical and mental -- for a good life raising those kids!
Get another opinion on the Forteo, but do not discount it because it's not "natural" or whatever. This is not something that can be shrugged off.
There is some good advice amongst these replies.
Keep us posted with your progress.
Lucy Buckley PT aka Mother Goose

AlisaB

I'm so happy to have found this website! I am 28 years old, and have been struggling with back pain and related issues for the last four months, after the birth of my second child nearly seven months ago. I have seen at least five medical doctors during this process (physiatrist, primary care, OB-GYN, rheumatologist and interventional radiologist, plus a chiropractor and physical therapist), and none of them have even heard of postpartum (or pregnancy-related) osteoporosis. So it has been a very long, painful, and frustrating road, just getting to this diagnosis.

I am a registered nurse, so I feel like I have a somewhat unique perspective on all of this. At times I have been very thankful for my nursing background; it has helped me to push my doctors to order the tests I have needed to find out if I have this disease. What is so frustrating about all of this is feeling like no one believes me; when I've mentioned osteoporosis, most doctors have just smiled and told me I couldn't possibly have it because I'm too young.

During the last four months, I have lost my job and my ability to take care of my two children. I have felt that most of my doctors have not listened to me; I told several of them about my research and the possibility of having postpartum osteoporosis. Many of them were willing to hand out the pain pills, but it took two months to convince one of them to do an MRI. This showed four compression fractures in my spine, which finally led to a DEXA scan. This showed osteoporosis in my spine, with a T- and Z-score of -4.3 (I also have osteopenia in my hips, with T- and Z-scores of -2.1).

In terms of treatment, I have done several things: first, I had to give up breastfeeding my daughter. This was one of the hardest things about this whole ordeal. I breastfed my son, who was born in October 2005, for thirteen months. I was so proud that he never had formula, and I felt like I could tell other mothers that exclusive breastfeeding was not only possible, but wonderful. It was so hard to give up this unique bonding experience between myself and my daughter.

Second, I am taking some medications. I take daily calcium supplements, and my rheumatolgist has started me on Forteo. We chose this medicine, rather than bisphospate, because it does not appear to stay in the bones long-term. The plan is for another dexa scan in six months to determine if my bone density has improved. (According to my rheumatologist, doing a dexa more often than this will not show any change in bone density. They are usually only done once a year.)

Third, I had a procedure done two days ago called vertebroplasty. It's done under conscious sedation, and basically a large needle is inserted into the broken vertebra(e), and the fractures are filled with bone cement. I have heard that in some cases this can provide immediate relief, but as of right now, my ribs still really hurt. There is also pain at the injection site, but this will go away. I think that it will be a few more days before I know if it has truly helped.

I also want to share that in my research, I have found that once treated, postpartum osteoporosis is almost always transient-- it goes away and does not come back, even with another pregnancy. I am very happy with the two children I have, but my husband and I always planned to have a large family. I am definitely planning to have more children, but I have no plans to get pregnant again for at least two to three years-- the time it will take for the osteoporosis to be corrected, and then some time just to be healthy. Hopefully there will be a way to monitor my bone density during my next pregnancy, and I will be able to know ahead of time if breastfeeding will be safe. Does anyone know how monitoring can be done during pregnancy?

Once again, I'm so glad that I found this website. It is so helpful to know that there are other people out there who are also coping with this disease. I hope my story has been helpful to others, too. I'm looking forward to hearing your replies.

--Alisa

pgreene

Alisa,
I was diagnosed when I was 33 which was 3 years after the birth of my youngest child. I have 2 daughters and breastfed both for a year. This was back in 1996, and I had several tests to determine the cause of my osteo - none of which were positive. I have to believe that it had everything to do with pregnancy and breastfeeding. I also believe that possibly my bones never reached their full potential for density due the fact that I was inactive as a child due to asthma and scoliosis. I also think it might be genetic. When my daughter had a fusion for scoliosis at the age of 12, the doctor said her bones were softer than they should be and my mom had severe osteoporosis which is why I think genetics might play a part.

I really think we need to get the word out to teens and young adults how important it is to be active, take calcium and vitamin D, etc. I'm not sure how to go about it but maybe the NOF can help. It seems that more and more younger women are being diagnosed.

Peggy

AlisaB

Peggy-- Thank you so much for your reply. I think your idea about getting the word out to teens and young adults about ways to prevent this from happening is great. I'm not sure how it can be done either, but it seems there are lots of programs out there to prevent other diseases (obesity, diabetes, cancer, heart disease-- the list goes on). So I'm sure something can be done.

It's interesting about your family history of osteoporosis. No one in my family has ever been diagnosed with this, which was yet another reason that most doctors were extremely hesitant to even test me for it. However, my daughter was born without fingers on her left hand-- she has a normal thumb, and she has skin and a bit of muscle where the fingers should be, she just has no bones there. And the really weird thing about that is that my great grandmother (all through the female line) was exactly the same. She was born in 1899, and I'm sure this sort of thing was not known about then, but I wonder if her mother had the same condition. So I definitely agree with you that there is a genetic thing going on here. Maybe some day there will be something that can be done to prevent this from happening to women who are at risk. Has your daughter's doctor said anything about her being tested for osteoporosis now or in the future (especially if she has children)?

When you were diagnosed with osteoporosis, did your doctor recommend that you stop breastfeeding? Or had you already stopped by then? Did your diagnosis come about due to pain? What, if anything, did you do in terms of treatment? I too have had every test in the book to determine the cause of my osteoporosis, and everything is coming back normal. It's been four months since all of this started, and my rheumatologist is just now starting to believe that it's related to pregnancy and lactation. Everyone keeps telling me that this disease is very rare, but I don't think it's as rare as they say-- I think it's very underdiagnosed, and there are a lot of women who have it who will never know. I hope there is something the NOF can do to change that.

Thanks again for your thoughts. --Alisa

Courage

Thank you everyone who has taught me. I too, have been waiting for this discussion to come up. My husband and I feel that we are not done yet with children. I just had a Dexa scan. I will gladly share when I get the results. I have had osteo since I was 38 yrs. I have a long medical history that is so dizzing. I am in the process of talking with a new OB and haven't spoken with my Endocrinologist yet about wanting to get pregnant. My Endocrinologist can't pinpoint when and how my osteo started. I am just sad today that I even have it. I don't feel so couragious today. It will pass and tomorrow will be fresh. I am on the right supplements for osteo and trying to keep consistent with my walks for an hour. Currently, my GI doc and I are trying to wean me off endicort for Crohns. So, far it isn't going very well. We are weaning very slowly. Why it isn't going very well is because I am starting to show Crohn symptoms again. I will watch it. Very confused today, I am sorry if I am not making much sense. I could use alittle input and support, please.

AlisaB

Dear Courage-- I'm sorry to hear that you're having a difficult time right now. I understand your feelings of sadness and fear; I think it's really difficult for anyone to deal with the feelings of not having control over your own body. It can be so sad to have a disease (or in your case, several) that makes us unable to just live our lives the way we want to. I also know that it's hard to believe when other people tell us that this will pass, and we won't always feel like this. I have learned that a good way to try and deal with the sadness is to just let yourself be sad; cry if you have to, and talk to someone who will listen. But don't let yourself be sad all the time; even though it's hard, try to do at least one thing each day that's normal-- laundry, eating dinner with your husband and child(ren), going for a walk. This is what I try to do, and I think it helps me to remember that even though I'm sad, I don't want to be sad for the rest of my life.

I hope that this helps you. I wish you well.

--Alisa

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