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Old 10-28-2007, 11:10 PM #11
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LizaJane LizaJane is offline
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Join Date: Aug 2006
Location: Brooklyn, NY
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LizaJane LizaJane is offline
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LizaJane's Avatar
 
Join Date: Aug 2006
Location: Brooklyn, NY
Posts: 805
15 yr Member
Default Billye and Mrs D.

Billye, This is not something to be proud about. If you take sleeping pills, and awaken during the night, you are totally at risk getting out of bed. That's how most older women end up breaking their hip--they get out of bed in the middle of the night on sedatives. A commode is a simple thing, and, really, it's not hard to rinse it out during the day. It will keep you safe, and that's what we all want for you.

In terms of the forteo, it is reported, and I've read the studies, to help bone pain even before it helps heal the fractures, and it did that for me. Yes, after 2 months I had new neuropathy symptoms, more like small fiber, and my doctors decided to stop it. Those symptoms disappeared within days, and are NOT a reason for you to defer this. There are zero reports of this anywhere; my calcium AND my magnesium were high, and my cholesterol and triglycerides. Something was going on with me, and we don't know if it's the forteo or something else. My neuro said he saw 5 cases of small fiber neuropathy over those 2 weeks, and thought they were viral.

But here's my question for Mrs D: Billye tells me the endocrinologist she saw told her she can't take Forteo until she "builds up" her vitamin D level. So she said Billye has to wait at least month. As we all know, a month is a very long time in Billye's life. My understanding is that if you take the active form of vit D by mouth, you have a good level pretty immediately. Also, if her levels aren't great, all it means is that calcium isn't going to be absorbed well in the gut. So what's the harm in starting the Forteo in this case? I don't get it. I was told, when taking Forteo, to take NO MORE than 500 mg Calcium/day, because they don't want the calcium to go too high.

Does this make sense to you, Mrs D? Wings, I know you've been reading about Vit D--does a person have to spend a month building up stores of this to be able to absorb Calcium?

Billye, I wish we could all be there to fight for you. The pain is exhausting you, and I don't think you have an advocate.

Also, what about IVIG for the rheumatic disease?

Finally, I was given leucovorin when I was given Methotrexate, and while I didn't take either, just stared at the bottles, I was told to take the leucovorin 8 hours before the mtx, then something like 8, 12, 24, 35 hours after. He wanted me to using it as "rescue". I dont know the exact hours, but it wasn't just one dose.
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--- LYME neuropathy diagnosed in 2009; considered "idiopathic" neuropathy 1996 - 2009
---s/p laminectomy and fusion L3/4/5 Feb 2006 for a synovial spinal cyst
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