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A couple weeks ago, I rquested information from other celiac listers who were or ha used Forteo for osteoporosis.  I was preparing to have spinal fusion surgery & the neurosurgeon wanted me to start on Forteo prior to surgery.  

Many on this list said they did okay once they got their calcium and vitamin D levels up, but that it took a while.  

Equally as many said they could not tolerate Forteo or were afraid to give themselves a shot.

I began the Forteo 1 wk. prior to the surgery.  I experienced severe leg pains & cramps from top of leg bone to foot beginning the 1st night, severe enough pain to cause sleeplessness most of the night.  I also experienced severe skull pain, loss of hearing on the right & jaw pain on the right, becoming progressively worse each night.  I had talked with my rheumatologist who had previously checked my calcium & vitamin D levels & said they were fine, but I shoul increase Vitamin D to 3000 units per day and Calcium Citrate to 1800 mg. per day to see if this helped.  

I came through the surgery ok, but was not able to have all of the repairs needed because of the poor condition of my vertebrae,

However, I went 3 weeks w/ only sleeping 1 hr., then walk the floor w/the severe leg pain 3 hrs. til time for the next pain pill, sleep 1 more hr., etc. & it continually got worse.  

I finally quit the Forteo without anyones permission & gradually am improving.  The skull pain left immediately, the leg pain & jaw pain is getting better.  I am beginning to sleep 4-6 hrs. per night.   I did discuss this with the Neurosurgeon & he agreed it probably was something disagreeable for me.

Interestingly, this neurosurgeon is very popular & very highly thought of in N. Michigan (Traverse City) & at my checkup, everyone in the waiting lounge area had same surgery & all were placed on Forteo too & everyone visited &  compared symptoms.  One man's symptoms were same as mine only so much worse that he could no longer walk.  One other person had similar symptoms, also.  

I did find hidden in some of the Forteo literature that you should not take it if you'd ever had "Rickets".  I don't know a lot about rickets, but did have severe malabsorption syndrome for years, prior to diagnose after 59 yrs. of illness.

Thanks everyone for all the iinfo & input & for all the well wishes on my surgery.

Mary in MI  


      

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