Desparate 4 advice 31 years old with a baby

• By nobonesaboutit
• Posted June 9, 2008 at 2:32 pm

Dear NCH,
I was on forteo injections for 2 years. I am 49 and on steroids for 34 years. I didn't know I had osteoporosis until my early 40's. I raced my son up cement steps and fell breaking 4 ribs. Thereafter, I started breaking ribs when I sneezed or coughed. Then came the compression fractures and the gapping hole in the front pelvis. I can't tell you the pain I was in. It got to the point that I was bedridden for days, on vicodin4times daily, couldn't even get up to fix my family dinner. I had tried fosomax-esophogeal erosions, didn't work anyway. Nose spray cacin-whatever it is-didn't work and swelled up my sinuses. Anyway it got down to forteo. I too was scared but it did help me a lot the first year. The second year it was just too costly and the Dr said to use it every 2-3days. My bone desity went down and now they want me to do Reclast. Yes, we are guinea pigs for the drug companies but osteoporosis can be deadly as I was getting to that stage. It took a lot of at home rehabilitation-starting back to walk w/a walker, then a cane, then going to big stores with shopping carts I could push around just to get walking again. Forteo helped me a lot and now I'm still improving with walking and strength. I also take calcium and vitamin D prescription strength (50,000iu each week). Get sunshine. You are already having the debilitating results of osteoporosis but you need to take care of this before you have no future with your new baby. You already have your mom taking care of you-listen to your Drs and decide. I'm enjoying my "second chance with my 2 sons. There had been times I thought my mom at 78 years old was getting around much better than I -and she was! Forteo was a miracle for me-I think about the chance of bone cancer but my dying due to complications of osteoporosis was for sure. It does sound like you need to find out the underlying cause for you to have this-it's not a normal thing for a person so young to be this affected. Good luck and let me know what you decide and how it's going-ok? I live in Ohio-USA-isn't the internet amazing?!

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• By NCH
• Posted June 11, 2008 at 6:34 am

Thank you for your reply nobonesaboutit! Although scary to read it sounds like you are doing much better as you talk about a second chance with your children. Have decided to take the Teriparatide injections and hopefully will start them after my hols at end of June.

As you said future compliations from the drugs is a maybe, future complications from the Osteo is a definate! Started some light excercise, bit of walking, stationary excercise bike and using resistance bands plus making a real effort with my diet although it has never been terrible. Hopefully all these things combined with the drugs will help.

I really hope you're doing better as it sounds like you've had a really awful time. Did the effects of the drugs not stay with you for long after you stopped taking them?

Don't think I will get to the bottom of why I have the condition, checked again with my local Dr and he says if I wasn't absorbing calcium it would show in my thyroid tests, which are fine. Have been checked for Celiac disease also and clear.

All I can think is I have always been naturally slim, I suffered from depression as a young adult for 3 years which I belive can contribute and I took Estrogen down regulator injections for 4 months to help with a Gyne condition (they didn't work though). Maybe this combination on top of 'just having thin bones' didn't help?

Thanks agian and best wishes to you and your family x

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• By SaraMeeks
• Posted June 11, 2008 at 8:25 am

Taking care of two young children involves body mechanics that put you at severe risk for more injury.
I would suggest a visit to a physical therapist who is skilled in osteoporosis management--not always easy to find. I have a list and could send you names if you would like--please contact me privately at sara@sarameekspt.com and I can do that.
I also believe a brace is necessary in your case. You are fortunate (in a way) in that there is a relatively new brace that actually strengthens your back while, at the same time, limiting your movement into ranges that could cause more fracture. It is called the Spinomed III and I can also give you information on that.

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• By nobonesaboutit
• Posted June 11, 2008 at 4:13 pm

Dear NCH,
I'm glad you could make a decision. These are not easy decisions to make, knowing the possible side effects. It -forteo did help me greatly. The effects did not last after ending the medication or even when I cut it down to every 2-3 days due to the fact that I have to remain on the steroids which lower bone density. I understand medications like depoprovera or Danitol can also have these effects-is that what you had to take?
I'm curious- how much will your cost be for each pen of forteo? We've heard alot in our country how we are paying so much for our meds as compared to other counties. I don't know if you ever heard of the American film by Michael Moore Named "Sicko" comparing our health care to other countries. Here, my cost for each pen/one month supply, was about $750.00. Even on a send away Rx system, they wanted over $1100. for a 3 month supply. That was WITH my health insurance.

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• By AmberFlloyd
• Posted September 22, 2008 at 12:13 pm

Hi!

I was on teriparatide for 9 months, before coming off halfway through to get pregnant (I now am I initially got pregnant 2 weeks after coming off the drug, but sadly mscarried. I don't know if this was because the drug was still in my system, but I expect so! So far, I've now had a healthy pregnancy up to 19 weeks, with no osteoporosis related problems so far. I have broken my back twice, but had no probs for a couple of years.
i wouldnt worry too much about the risk of bone cancer, although i know its hard not to! the studies were performed on rats using a very high dose of teriparatide, also over a longer relative time period to the human dose.
I too am in the UK, and know what you mean about there being nothing out there!

x

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• By NCH
• Posted September 22, 2008 at 3:01 pm

Thanks for your responce and congratulations on the pregnancy. I still haven't received the teriparatide injections and had no further news from my consultant. Think there is problems with the PCT funding them. Where are you in the UK? I'm in Lancashire

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