 Posted 20/06/2011 20:25:51
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Hi, I have now had my appointment with Dr. Stevenson in London. I would really recommend (what JD originally recommended to me) that you meet this doctor at the Royal Brompton. He has measured my VItamin D which registers as insufficient. He has also looked at my bone turnover which apparently has an influence on subsequent pregnancies and the likelihood of this happening again smlindas.
Carolina
Carolina
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Posted 20/06/2011 20:32:04
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I am new to this forum and I am replying to all of your posts as I have had a similar experience to yourselves. I had my beautiful little boy in 2005. Three weeks later, I started to experience awful back pain. I was unable to bend over to pick my baby up, and needed help on an day to day basis to help with looking after him. Working for the NHS, I was entitled to access to the fast track Physio service that they offer for clinical staff. I had a year of intensive Physio, which I sometimes came out of in tears! They promised me that it was "just" post pregnancy back pain and that it would be gone within the year! I guess I was lucky, as once I realised at the end of my maternity leave, I would be unable to return to my role, I was referred to the Occ Health team, and I saw a lovely nurse who (again) luckily had not only been a midwife, but also an Orthopaedic nurse, and recognised that it was definitley not PPBP, but more like Osteoporosis, and further tests concluded that she was right! (I also had 5 vertebral fractures! and a very poor bone density which has never recovered) I am now alot better pain wise,although I cannot lie flat on my back as it is very painful, but they feel the one of the possible reasons that I ended up with it is due to very low levels of vitamin D, and I have just been given an 8 week course of very high vitamin D tablets to take. I am now at the stage where I would love another baby. I hate the idea of my little boy being an only one!( Mad! I know!!) I have never been offered the AA drug, and I am not sure why. Any advice? Kind regards. x
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Posted 20/06/2011 20:43:36
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| Thank you for your reply. The other thing that I wonder is, every so often I still have the let down feeling that you get when you are just about to feed your baby, so I guess I should get that checked out too! I was also on the Depo injection, and have a distant memory of being put on HRT at 25! Hmmm! Think I need to have a conversation with my Rhuematologist!! x Linda.
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Posted 22/06/2011 17:50:34
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| Sorry, I didn't make reference to the vitamin D comment in my earlier message. How low is your vitamin D levels. Mine was measured at 9 when I was first diagnosed. It is now 18 apparently. (18 what, I don't know!) Does the Dr have any idea why your levels are so low? Did you ever go on the Depo injection? Are you incredibly pale (I am!) The other thing I was wondering is has it made a difference to your general immunity? Oh! And one last question. Did the support group ever get set up? Kind regards. Linda. x
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Posted 12/08/2011 09:54:26
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| I SUFFERED THIS CONDITION IN 2007 WITH MY FIRST PREGNANCY AGED 32YRS WITH TWINS (OSTEOPOROSIS OF THE RIGHT HIP) DIAGNOSED BY XRAY/MRI AFTER MY BOYS WHERE BORN WHICH THEY SAID WAS SEVERE. THE CONDITION WAS CRIPPLING STARTED OFF ON CRUTCHES AT 6 MONTHS PREGNANT/PHYSIO SAID IT WAS PELVIC GIRDAL PROBLEMS.(NORMAL FOR TWIN PREGNANCY DUE TO SIZE/WEIGHT GAIN) BY 7 MONTHS WAS IN A WHEELCHAIR LIVING/SLEEPING DOWNSTAIRS. UNABLE TO GET IN THE BATH/SHOWER HAD TO RESORT TO HUSBAND WASHING ME DOWN WITH HOSE PIPE IN BACK GARDEN ( I LAUGH NOW!!!) HAD CESERIAN SECTION AT 37 WEEKS 5 DAYS. STILL UNABLE TO WALK AND PHYSIO IN HOSPITAL NOT WORKING I ASKED FOR XRAY WHICH REVEALED THE PROBLEM. AT THE TIME WAS BREAST FEEDING (LOOSING MORE CALCIUM). THREE MONTHS LATER I WAS WALKING AGAIN WITH CRUTCHES BY 5 MONTHS UNAIDED. (FULL MOVEMENT OF HIP NEVER FULLY CAME BACK) MORE HAPPY I COULD WALK AND FINALLY PUSH MY PRAM 14 MONTHS LATER I FOUND OUT I WAS PREGNANT AGAIN PANICKING IF THIS WOULD RE-OCCUR LOOKING AFTER TWIN BOYS WHO HAD JUST TURNED ONE. DOCTORS COULDNT ANSWER THIS AS THERE IS LITTLE LITERATURE AROUND ON PREGNANCY RELATED OSTEOPOROSIS. I RESEARCHED THE INTERNET COULDNT FIND ANYTHING. I LOADED MYSELF WITH CALCITONIN THROUGHOUT THE PREGNANCY WHICH I BELIEVE HELPED. IN FEB 2009 (39 WK 6 DAYS)A BEAUTIFUL HEALTHY DAUGHTER BY CESERIAN ALTHOUGH GOT PAINFUL TOWARDS THE END MANAGED TO KEEP ON MY FEET AND WALK AROUND HOLDING MY BABY. BREASTFED FOR 2 MONTHS THEN STARTED WITH PAINS IN HIP/SPINE MY DECISION TO WEAN NOW JUST INCASE THIS WAS IT RETURNING. TWIN SONS NOW 4 YEARS OLD, DAUGHTER 2YEARS I STILL HAVE HIP/SPINE PAIN AND LIMITED MOVEMENT OF THE RIGHT HIP IN SOME DIRECTIONS WHICH CAN GET YOU DOWN BUT IM BLESSED WITH THREE BEAUTIFUL CHILDREN AND A FANTASTIC SUPPORTING HUSBAND. FOR RESEARCH I HAVE NO FAMILY HISTORY OF OSTEOPOROSIS / SUFFERED BROKEN FIBULA AND TIBULA IN LEFT LEG WHEN I WAS 11YRS OLD. I AM DUE TO HAVE XRAY OF THE HIP SHORTLY AND POSSIBLY A 2ND MRI WILL UPDATE WITH FINDINGS I HOPE THIS HELPS OTHERS
MUMOF3
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Posted 12/08/2011 14:38:38
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Hello Darlotoni. Thank you for sharing your story on the forum. You really have had a tough time too.
It's interesting that you mention that you think that taking the Calcitonin helped during your last pregnancy, as I was told I didn't have a Calcium deficiency and that the Osteoporosis was caused by a lack of Oestrogen during my pregnancy. As I've mentioned before, I do think everyone should have their Vitamin D levels checked. I also hope you are getting some good medical support, as this is such a rare type of Osteoporosis, that so many doctors seem unaware of it. I did make up my bone density again over the years and I really think that regular exercise and a good balanced diet have helped me achieve this. As I'm now at menopause age, I'm on HRT, to make sure I don't lose any more bone. I did try bio-identical hormones for a while, but they didn't suit me, so I'm back on conventional HRT again.
Best wishes
JD
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Posted 29/02/2012 15:30:35
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Hi. What a sense of relief I felt on finding this forum! I was diagnosed with Transient Osteoporosis of Pregnancy after my son was born 2 years ago (1st pregnancy) and suffered fractures in both hips and two back fractures. I too had very low Vitamin D levels and according to my DEXA scans, the bone density of an 85 year old (I was 35). I was treated with bisphosphonates and told to take Vitamin D. It was explained to me that as the condition was transient, I should expect to return to 'normal' in 18 months to 2 years. I'd really love a second child, but am terrified of this happening again and feel very confused about whether to go ahead or not. Has anyone had this with their first, but gone on to have problem free seconds?
Thanks
Abby
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