Why My Second Reclast Infusion is on Hold

[aaa]

First, because I'm moving at the end of September. I can't take the chance I won't be in great shape.

However, the other reason is a bit more problematic. I had a cold in May that turned into Asthmatic Bronchitis. I took quite a while to cure. About a week after the coughing had ended, I began to feel pain under my right breast. It was very sharp. Over the next couple of weeks, I thought I was crazy, as the pain seemed to be moving around. I finally went back to the pulmonologist. He took another x-ray and saw nothing. He sent me to the ER for a CT with contrast (had to rule out pleurisy or a clot). The CT showed nothing.

Was referred to a rheumatologist who took a full series of x-rays specifically for the rib cage. They showed nothing. The pain was still great and it was continuing. So he sent me for a Nuclear Scan (by this point I'm glowing!). Boy, did that find something. Four hits on four ribs on the right side and one on the left. At least I knew I wasn't crazy. The pain really was all over. Unfortunately, they couldn't 100% call them fractures. Those kind of hits can also be something much worse. As I didn't love the rheumatologist (he made some disparaging remarks concerning my DS) I happily moved my treatment to my internist. He had me drop off the x-ray series, CT scan and Nuclear scan films/reports to a radiologist/diagnostician. The result of that is, again, pretty sure they are fractures, but they need another Nuclear Scan (not sure when yet) to determine conclusively. I presume if they're fractures, they will show up on the second Nuclear Scan as lesser hits as they heal.

I believe they're fractures as the pain has definitely lessened. (What's really odd is I only had a bit of pain on the left side the whole way through. The real pain has been on the right side, especially under my breast). I see this as good news...except...it's distressing. I had the first Reclast Infusion in May 2013. My bone loss is better (though not totally stopped). I have never missed a day of supplements in over 9 years. My numbers are normal. So that's the distressing part. I know it can happen no matter how hard you work.

The doctors can't tell me definitively why it happened and/or that it won't happen again. It kind of makes me nervous to sneeze or cough. Did it happen due to the extreme coughing from the Asthmatic Bronchitis? Possibly. But if so, why didn't the pain start till after the coughing had been gone for over a week? And why didn't all the ribs begin to hurt at once? Why was it sort of a domino thing? Who knows?

I know this has been a long post but it's been a long, painful summer. I just hope the second Reclast Infusion will give me more protection.

 

[newanatomy]

Thanks for posting this! I am sorry you are going through this I hope too, that the second Reclast infusion will help.

 

[brooklyngirl]

Wow, that sounds extreme, I hope the next scan finds you all healed up and you can get the next infusion asap!

 

[feeder]

So sorry to hear this. Would scare me a little to take the second treatment but then again you got to do what you got to do. Hope things go better for you the second time and it was just a fluke the first round. Mind me asking how much calcium and what kind you have been taken for 9 years? You really need a break and maybe the rest of the summer and fall will be better for you.

 

[DianaCox]

I'm wondering if you had considered a revision at this point to get more absorption? You're very far out now, and stable, and very slender - would you be willing to consider the risk of regaining some weight to save your bones - assuming nothing else seems to work? I'd be very concerned about being so osteoporotic that coughing breaks your bones - a trip could break your hip or back!

I may be thinking "sweet lemons" but at 61 (in ten days), 11 years out and back to a smidge over 200, my bone health is stable and pretty good, and my PTH was 35 this year (and I take 1260 mg of of calcium/day).

 

[aaa]

Thanks for all the good wishes. Thankfully, the pain has lessened considerably over the last week or so.

That's an interesting thought, Diana. I have to tell you the last Dexa scan I had (2012), I wasn't really osteoporotic. I was at the border of osteopenia & osteoporotic (I didn't have one in 2013 b/c of the Reclast Infusion). It's a thought, though. I wish it could be conclusively proven that I broke them due to the coughing. No one is really sure b/c the pain started a week or more after the coughing ended; but it is something to think about as it was a horrendous cough. [I've decided to take cough medicine the moment I get a cough in the future]. No matter what caused it, obviously, it's something to be concerned abuot.

I do to take a good more calcium than you. Almost 3500 mg./day and 150 iu/Vit. D3/day. My endocrin. did tell me that my being thin has tons of medical advtgs. over my being heavier...the exception being osteo. issues. There I'd do better when I was heavier.

Feeder, I take calcium citrate (sometimes Citracal, other times BJs/Costcos/CVS). My calcium is at normal but sometimes it's a tenth below. The doctors don't worry as they feel that's normal esp. as my Vit D3 is great, as is my PTH.

Addendum:
I knew I'd hear something that made me think. After some discussion (with family/friends) I realize there is something I could do. I could gain weight. I work hard to keep myself where I am. My bariatric surgeon has always wanted me 7-10 lbs. heavier. It would require a psychological readjustment. (And I wouldn't need new tops, just new jeans and slacks). Again, it's something I'm going to think about. I don't know. Could I do it?

 

[JackieOnLine]

my guess is you could gain some weight - but 10 pounds might require new clothes, why do you think it wouldn't?

sorry to hear you have had such problems...

 

[aaa]

LOL, because I don't have much of a wardrobe. I only wear sweats, jeans, shorts and slacks. So I figure I would have to get those larger.

I have an appt. with the endocrine. at the end of August. I think I'll discuss this with her and see if she honestly thinks it would make a difference. Also, I occasionally see a therapist. You know that it'll be a topic of discussion.