Mom was diagnosed at 62 years old. Is on Betaseron. Was with one neuro who prescribed SoluMedrol monthly. (We got rid of him in 2009 because he always confused Mom with another patient and discussed her medical history with a GP that wasn't her doctor. He also prescribed a med that is still in drug trials; he was positive she could get it at her local CVS. He was so stupid he was dangerous!) Her second neuro continued her on it for the past year. Last January bone density scan showed osteopenia. (Mom is gonna be 75 in February...so like what post menopausal woman doesn't have osteopenia!) Second neuro moved into a new office that isn't handicapped accessible...so off we went in search of a third neuro. Second neuro was concerned about hip necrosis from her being on the SoluMedrol for more than 4 years and thought it wouldn't be such a bad idea to take a break and should she have a relapse he'd write up an order for SoluMedrol for 3-5 days. He also suggested we investigate Mom getting onto Boniva. Third neuro says if it's not broken, don't fix it. I help my mom with some of her ADL's (including her shower). I think Mom has lost some muscle mass (thighs) and that is a side effect of prolonged steroid treatment. She's screwed either way you slice it: She's afraid to stop the SoluMedrol because she hasn't had a relapse in at least 4 years, but then she doesn't need a broken leg or hip added to her laundry list of health complications. The second neuro's recommendations make sense but he has been in this new office for more than 6 months and still no ramp in sight. Mom's GP is out of the country on vacation but he would likely side with the third neuro since that's who he recommended. Thoughts?
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Just a side word on the Boniva (spelling?). That may increase bone density, but those drugs have a tendency to make bones more brittle (so if you fall, you can do more damage). It's a catch-22 with MS, because we have the tendency to fall. Something to be really careful about. -
I am not understanding what the third neuro means by if it's not broken don't fix it. Are you saying he wants to continue monthly solumedrol because it has worked so far to prevent progression? Or is he saying to not take Boniva? (Sorry if I'm not understanding). Monthly steroids for so long a time seems awfully risky to me.
There is some controversy about the benefit of meds like Boniva, like Heliotrope said. I'd do more research on that.
I think neuro number two makes sense. Pretty strange that a neuro would have an office that is not handicap accessable!Comment
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An interesting couple of days.
Yes, quite odd for a neurologist to not have a handicapped accessible office. He mentioned some nonsense that he has been waiting on bids from contractors for the past six months. The bigger truth is a remodel would probably cost about 10K. Even crazier is when we got there, I asked if his office had a walker (I would have brought Mom's in addition to her transport wheelchair), they didn't even have a walker. How insensitive. He's a good doctor, but screw him.
Enough about HIS craziness. For what it's worth, Mom's SoluMedrol IV nurse was by today for the first of a five day IM antibiotic treatment. Mom has had a UTI for five years. The nurse gave us anecdotal information that she has a friend with MS who went cold turkey off the SoluMedrol and was slammed with one nasty relapse after another. Mom decided to go with Neuro #3 (yeah, it is confusing Who's on First sorry that it all got lost in translation) and will go 6 weeks between treatments as opposed to 4 weeks. In the meantime, Neuro #3 has prescribed 50,000 iu of Vitamin D in addition to the two Caltrates Mom takes daily.
About Boniva-there are some huge side effects with that med too. Mom's GP is out of the country and will be returning in another week or so; I will follow up then.
I don't have to say it because it's everyone's truth on this website...but this is all pretty exhausting or as Mom says on a regular basis, "I'm tired of me." She is a hoot.Comment
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