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Osteoporosis - anybody have infusions to prevent it?


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17 replies to this topic

#1 smurfette

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Posted 27 July 2008 - 08:18 AM

I have terrible esophageal spasms ad my esophagus is very sore as a result of severe GERD so my doctor wants me to have an infusion of anti osteoporosis meds. We are trying to get Reclast infusions approved but I am not sure that the insurance co will go for it because I am under 810 years old and have never broken my hip and pelvis. I an interested in anyone's experience with the infusions and if there was any improvement with their dexa scan scores.
Smurfette

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#2 Margaret

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Posted 27 July 2008 - 09:58 AM

Hi Smurfette ,

I don't know anything about the infusions, but when my son was first diagnosed he had horrible esophageal spasms. They gave him nitro tablets.....the kind that heart pts carry and stick under their tongues. They really helped him with the spasms. Have you tried them?

Take care, Everyone.
Margaret

#3 razz

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Posted 27 July 2008 - 10:25 AM

Smurfette,

It just so happens I have had an experience with Reclast. I was getting boniva monthly intraveneous infusions for my osteoporosis. Even tho I'm not 810 years old (I'm about 800), the insurance approved the infusions, no problem. I did want to let you know I had a bad reaction to the once-a-year Reclast infusion. Normally, I would get a slight headache and minimal flulike symptoms from the monthly infusions and I thought it would be the same with the yearly. Quite the opposite. I woke up with a huge headache, swollen eyes and felt like I had been hit by a truck. :blink: I was under the weather all day and when next March rolls around, I'll be back to monthly infusions or monthly tablets. Everyone's going to react differently. Just I'd let you know.


P.S. I'm really 49 years old and the insurance gladly paid for it, no problems. :lol:


Razz

:)

P.S.S. I haven't had a recent dexa score but will ask for one next month to see if there's been any improvement.


Razz
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#4 Annie N

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Posted 27 July 2008 - 02:08 PM

Hi Smurfette
I also have stomach problems and then needed an infusion. I don't recall having the medicine you're supposed to get, but I had 2 infusions and neither one gave me any trouble. They warned me inadvance that I might feel flu like symptoms, but I felt fine. I haven't had another scan. My problem turned out that my body wasn't holding onto the calcium I was taking, I was passing it out. I had to do a 24 hour urine. After the infusion, no calcium was leaking out anymore, so I've been declared cured, I guess.
Good luck with the insurance company - mine wouldn't pay for it either!

Annie N.

#5 Kamlesh

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Posted 27 July 2008 - 04:43 PM

Hi Smurfette,

Before my Toupet Fundoplication surgery, I used to get once in a while esophageal spasm. One ended me up in ER as it felt like heart attack. My doctor prescribed Hyoscyamine. It gave me immediate relief.

Now after the surgery, I am getting more esophageal spasms, and my surgeon told me to ignore it and as my body is getting used to, it will slowly go away.
Kind regards,

Kamlesh


#6 smurfette

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Posted 27 July 2008 - 06:24 PM

Hi everyone! Thanks for your quick replies! You have all given me things to think about.

Margaret I take Levsin and Procardia for the spasms twice a day and I have quick acting Levsin for break through. I have not had Nitro but it sounds like a plan. I will ask my doctor because the spasms, which, as you said Kamlesh, feel like I think a heart must feel - crushing pains from back to front, hard to breathe. "Scared you're dyin' and scared you're not!"

Kamlesh Hyoscyamine is Levsin, which is what I take daily, so we are on the same meds for the same thing. I am glad to hear that you had success with it. Good luck with your recovery. I hope the spasms that you have now disappear and that you feel better immediately. Unfortunately it did not work for me completely.

Razz thanks for the heads up about the side effects. My doctor wants me to try Reclast because it supposedly builds more bone than Boniva and I have lost some. Did you hear that? You are just a sweet young thing so you have more time for the infusions! I was told by the rheumatologist's office that it would be a problem but I have to check back again. I will see what they say and if it does become a problem then I will unleash my husband the lawyer on the insurance company. Enough already - they love our premium money and hate to pay for my meds! It sounds like right now I am in the same boat as Annie. It looks like some companies try to get out of paying. Let the games begin, my husband will have a little fun trying to get me covered as a necessary med. for my condition and in light of family history - my mother has osteoporosis.
Smurfette

Chocolate, It isn't just for breakfast anymore!

#7 razz

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Posted 27 July 2008 - 07:06 PM

Smurfette,

I'm not sure what the difference is between monthly Boniva infusions versus the once a year Reclast infusion. It most certainly will help build bone mass. The reason I went with the once a year infusion was for the convenience. I hope your insurance covers it. I have Medicare and a supplemental and it ended up getting covered.


Razz
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#8 smurfette

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Posted 28 July 2008 - 05:53 PM

Razz,

Thanks for your kind input. I was told that the Reclast is more effective in terms of building more bone and in more places (both hip and pelvis) and therefore it is not just a matter of convenience. However, since it may all be moot until I hear from my doctor as to which one of the infusions is ok'd by my insurance carrier, right now I am taking calcium supplements and will wait a few more days until checking in with my doctor again to see what is going on. Under normal circumstances I would be chomping at the bit to find out what is happening, but since I am in no rush to get stuck with a needle, I don't mind hanging loose on this one.

I will let you know what I find out and whether it is true about the difference in bone building and where.
Smurfette

Chocolate, It isn't just for breakfast anymore!

#9 JJ-Knitter

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Posted 30 July 2008 - 09:11 AM

Hi Smurfette!

I'm getting Boniva infusions because I have compression Fx's in my back and all the GI/Esophageal stuff which was making taking the oral version problematic. The insurance company never questioned it even though I too am only 800, just having had a birthday. Next DEXA scan is in Sept. so I'll post how it goes.

It was really interesting to read about the esophageal spasms people have and how they are treated. I thought my first one was a heart too! LOL :lol:

JJ

#10 smurfette

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Posted 30 July 2008 - 03:10 PM

JJ
You are just a Young 'un. Do you know why Boniva rather than Reclast? Do you suffer any reaction to the infusion? Please advise us all of your DEXA results so that anyone who should be getting DEXA's and infusions can learn about them.

Thanks for your reply and be well!
Smurfette

Chocolate, It isn't just for breakfast anymore!

#11 JJ-Knitter

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Posted 31 July 2008 - 04:31 PM

Hey Smurfette,

I somehow must have lost my first reply.

No, no reaction to the infusion unless you count a brief spell of feeling cold and pain in the arm 5 minutes or so after the infusion has finished.

I think the doctor may have chosen Boniva because that's what I was on when I could still do the oral route.

I'll be interested in the DEXA results too 'cause so far they've all been in the normal range. Too weird~ The doctor says it doesn't matter if they are in the normal range, the compression fractures indicate osteoporosis / idiopathic metabolic bone disease. Hmmm... :huh:

#12 Denelle

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Posted 31 July 2008 - 04:37 PM

Hi,

What is a dexa scan? I am getting a bone density scan done next week. I am in premature ovarian failure and have been having issues with my phosphorous level. Both of these can lead to bone loss.

Thanks,
Denelle

#13 JJ-Knitter

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Posted 01 August 2008 - 03:08 AM

Hi Denelle,

DEXA = Dual Energy X-ray Absorptiometry and it's really simple, painless and quick. It's more sensitive than a regular X-Ray, uses less radiation, and is cheaper.

If you remember to wear clothing that doesn't have zippers or other metal bits, you won't even have to put a gown on. I usually wear a sports bra, silly T-shirt, underpants, and pull-on stretch leggings. That way I don't have to change and somebody gets a laugh!

Good luck with your test!

JJ

#14 Cheryle

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Posted 04 August 2008 - 10:49 AM

I'm trying to convince my doctors I need the infusion type of medication, Reclast. I've been taking Fosamax since I have been on Prednisone for a year and a half.

Now I've been diagnosed with Esophageal Dysmotility, my general practitioner has taken me off Fosamax because of potential damage to my esophagus. He can't prescribe it as it has to be given in a hospital or clinic setting, and when I speak to my other doctors, they don't seem to understand the request. My rheumatologist just told me to get my general practitioner to prescribe Boniva. I read up on Boniva and it clearly states that it is a contraindication to take it if you have Esophageal Dysmotility. So I'm not about to take that. I don't mind the needle... I figure what's one more needle in my life.

Last week went to ask my GYN for a Reclast prescription and she barely knew what I was talking about. She did order a full body bone scan, but told me if it shows my osteopenia is worse, she will refer me to an Endrocrinologist. That sounds odd to me, what do you think?? If you are taking it, who prescribes it for you?

My insurance will cover it and it will cost me only a little more than a years worth of Fosamax.
Cheryle

#15 smurfette

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Posted 04 August 2008 - 07:40 PM

Cheryle,
I have the advantage of having a sister who is an OB/GYN and I put the question to her. She knows my issues and said that any of the oral meds are of course out of the question for me due to dismotility. My rheumatologist said the same thing. The issue then becomes Boniva or Reclast. Boniva does not build bone in both hip and spine - Reclast does. For my time and money I want the one which is the most effective. As an OB/GYN she even gets samples so she prescribes the drugs to her patients. I cannot understand why yours does not know about this stuff. My rheumatologist is prescribing it for me, although my sister does prescribe it for her patients.

My sister lectures around the country about Menopause and osteoporosis. She knows about these issues but I have been dealing with my rheumatologist about them. Both of them are well versed on these drugs and favor Reclast. My battle is going to be with my medical insurance company because they only ok Reclast for the very elderly. I have no idea why.

I think you need a medical team that understands sclero and esophageal dismotility. This is a disease that requires experience or else a willingness to learn about the disease and consult with doctors who do know about the disease. It sounds like your current team is way out of their league and are not willing to learn. I would check with the list on the board for doctors in your area that specialize and make an appointment with one of them.
Smurfette

Chocolate, It isn't just for breakfast anymore!

#16 Cheryle

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Posted 06 August 2008 - 05:11 AM

Smurfette,
Thanks for the response. It's good to know my instincts were right.
I am dismayed with my GYN not knowing or prescribing the Reclast, and have already decided to look for a new one. I'm glad to know that Reclast is better than Boniva for rebuilding hip and spine, as I was already showing problems in my left hip from last years scan. I had a new scan Friday and will get results this Friday.

My rheumatologist must think Reclast is only for the elderly as does your insurance company, I recall she did mention she thought I was too young for it.

I could not find any Doctors in Georgia on the board list. Unbelievable isn't it, with Atlanta being such a large city. The 2 doctors I've heard about in Atlanta who are 'specializing' in Sclero patients aren't seeing new patients. I may have to go out of state. I think Alabama has a Clinic, I think I will check into that.

Thanks again.
Cheryle

#17 smurfette

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Posted 06 August 2008 - 11:34 AM

Cherlye,
My insurance co. just came around so there has got to be hope for you too! Wow!. I cannot believe that there is no one in GA that can help you! Do their offices refer patients to anyone else? Emory is such a fine university I cannot believe that they do not have any specialists in Scler Have you called the dept of Rheumatology? I don't know how far you are from there but I know that it is a great school. Are any of the managers aware of contact in Georgia? GA is such a sophisticated state with lots of schools and hospitals I am stunned that there are only two doctors with any experience in scler to help you.
Smurfette

Chocolate, It isn't just for breakfast anymore!

#18 Cheryle

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Posted 06 August 2008 - 02:02 PM

Smurfette,
Believe it or not, I do go to Emory. I see both my rheumatologist & Pulmo there. My rheumatologist is the co director of the department, and I went to her because she does specialize & research in autoimmune diseases and I also have UCTD and a subset disease of Myosotis. At my first appointment with her she told me I most likely had CREST (I 've suspected for some time now, but the first 3 rheumatologist's I saw before her never would acknowledge my symptoms..... I wonder now if it's because I do not have Raynaud's and most people do??) <_<

I'm going to go take my evening meds and go to bed, I'm suddenly really tired.
Thanks so much for your input.