It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Osteoporosis Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 01-21-2008, 11:09 AM   #1
Senior Veteran
(female)
 
Join Date: Jan 2005
Location: California
Posts: 2,704
taape HB Usertaape HB User
Who is IV infusions of bisphosphonates?

I was wondernig who is on the IV bisphosphonates and what if any side effects are you having? How do you feel when you leave the clinic and how about after the medicaiton is in your system for some time?

 
Old 01-21-2008, 06:31 PM   #2
Senior Veteran
(female)
 
Join Date: Oct 2006
Location: u.s.
Posts: 1,679
osteoblast HB User
Re: Who is IV infusions of bisphosphonates?

Taape-I do not know about iv bisphos. I just wanted to say hi and let you know that I am hoping that you find something that will work for you soon. What does your doctor say about what you should/could be doing now? Sounds like you are thinking about iv bisphos.

 
Sponsors Lightbulb
   
Old 01-28-2008, 07:01 PM   #3
Senior Veteran
(female)
 
Join Date: Jan 2005
Location: California
Posts: 2,704
taape HB Usertaape HB User
Re: Who is IV infusions of bisphosphonates?

Thanks Osteoblast - I was in to see the doctor today. She said that the IV bisphosphonates are now FDA approved to treat osteoporosis. I was telling her that my insurance initially denied it and she said they were using it off label back then. We discussed some of the side effects. Thanks to this board I knew about as much as her about recent literature about treatment, side effects, etc.,

I'm going to get another DEXA scan in May and then go from there about deciding which treatment I will accept. She was not in favor of using Evista.

I also learned that the PTH patch clinical trial that I wasn't accepted in is on going. It's actually for patients who use on going steriods to treat other conditions who developed ostoeporosis from those medications to see if the Forteo increases bone density despite steriod use. I asked again about starting on Forteo and the Univeristy hospital will only follow the exact FDA guidelines on this.

Thanks for asking about me.

Last edited by taape; 01-28-2008 at 07:04 PM.

 
Old 02-05-2008, 05:03 AM   #4
Junior Member
(female)
 
Join Date: Mar 2006
Posts: 35
Rosaflor HB User
Re: Who is IV infusions of bisphosphonates?

Quote:
Originally Posted by taape View Post
I was wondernig who is on the IV bisphosphonates and what if any side effects are you having? How do you feel when you leave the clinic and how about after the medicaiton is in your system for some time?

 
Old 02-05-2008, 05:21 AM   #5
Junior Member
(female)
 
Join Date: Mar 2006
Posts: 35
Rosaflor HB User
Re: Who is IV infusions of bisphosphonates?

I had my first Reclast infusion yesterday, now 23 hours ago. It took 30 minutes, during which I felt absolutely nothing. Several hours later I began to feel very faintly achey as if maybe I were getting a cold, and that is all I have felt since. After a night's sleep I still feel a little achey but not enough that I would even take anything for it. I have no joint or bone pain, no fever, no headache, none of the other side effect symptoms listed online. My appetite is normal. This morning I am going out to do some errands as later it's supposed to snow. I chose Reclast because I had heard such horror stories of esophageal and stomach problems from Fosamax, which I have been refusing for years. BTW my Blue Cross paid 80% of the $1250 cost; my share was $250. On a yearly basis that pro-rates to less than $21 a month since the treatment is given once a year for three years. I am aware of possible long-term side effects (ONJ, atrial fibrillation) but as I am at the 99th %ile of fracture risk, I put my need for independent function ahead of everything else. If it came to that, I could still get to the grocery store with a pacemaker, but not with a broken back, and I could get A-fib even if I didn't take Reclast. I feel I have made an informed decision. I'm also on calcium and a lot of Vitamin D. My doctor is an osteoporosis specialist. To me this is like flying on a plane: you pick a reliable airline, buy your ticket, and go, and at some point the adventure becomes about trust. God help us all.

 
Old 02-05-2008, 01:53 PM   #6
Senior Veteran
(female)
 
Join Date: Oct 2006
Location: u.s.
Posts: 1,679
osteoblast HB User
Re: Who is IV infusions of bisphosphonates?

Rosaflor-Hi and welcome to the osteoporosis board! I am glad to hear that your Reclast infusion went well. Good luck with this treatment. Let us know how you do. I don't think there have been others on the board who are doing Reclast though with time there will likely be more as it is still pretty new. It's good to know that insurance covered 80%. It makes sense what you said about treatment decisions being like choices in taking a plane trip. At a point you are faced with the options, and with your particular situation you make the best decision that you can.You want to be careful, but it doesn't work to just worry ourselves sick. It sounds like you have achieved a balanced view of your osteoporosis and treatment options.

Last edited by osteoblast; 02-05-2008 at 01:54 PM.

 
Old 02-05-2008, 05:46 PM   #7
Senior Veteran
(female)
 
Join Date: Jan 2005
Location: California
Posts: 2,704
taape HB Usertaape HB User
Re: Who is IV infusions of bisphosphonates?

Rosaflor,
Thank you very much for posting. It's nice to hear from another patient rather than just recommendations from the doctor.

I hope the cold type symptoms go away and your treatment goes along well. It sounds like your scheduled for these treatments for 3 years (once yearly) is that correct? Is the 3 year time frame decided by the doctor or does your insurance cover you for 3 years at a time?

 
Old 02-06-2008, 02:39 PM   #8
Junior Member
(female)
 
Join Date: Mar 2006
Posts: 35
Rosaflor HB User
Re: Who is IV infusions of bisphosphonates?

After all my cheery optimism I have had a rude awakening. I had my infusion at 8:30 on Monday morning and felt pretty normal until 2 PM Tuesday when I started having bone pain that definitely got my attention. It is now 4:30 PM Wednesday and I'm still having it---pelvis and legs. In case anybody else gets this, Reclast sites say that 11% of test subjects got "extremity pain", that sx can show up any time within three days of infusion, and that once they show up they should go away within four days. Meanwhile what I am feeling reminds me of the last time I had a baby, some years back. Tylenol doesn't help. Cold compresses help. This is a bit more than the "flu-like syndrome" I was prepared for. Has anybody else had this?

 
Old 02-06-2008, 05:02 PM   #9
Senior Veteran
(female)
 
Join Date: Jan 2005
Location: California
Posts: 2,704
taape HB Usertaape HB User
Re: Who is IV infusions of bisphosphonates?

Rosaflor
Sorry to hear that your having a delayed response to the infusion. I hope it does go away within 4 days or sooner. You did report this to your doctor, right? I wonder if this type of reaction is also expected to occur for people getting quarterly IV infusions? My doctor said that it is possible to get 4 infusions/year or once yearly.

Last edited by taape; 02-06-2008 at 05:06 PM.

 
Old 02-06-2008, 05:33 PM   #10
Senior Veteran
(female)
 
Join Date: Oct 2006
Location: u.s.
Posts: 1,679
osteoblast HB User
Re: Who is IV infusions of bisphosphonates?

Rosaflor-I hope this eases up for you. Take care .

 
Old 02-07-2008, 09:22 AM   #11
Senior Veteran
(female)
 
DesertBloom's Avatar
 
Join Date: Aug 2006
Location: CA, USA
Posts: 1,484
DesertBloom HB UserDesertBloom HB User
Re: Who is IV infusions of bisphosphonates?

Hi Rosaflor: I'm sorry about the pain, and hope it goes away soon. Sometimes a hot bath with epsom salts might help... Have you tried anything like advil, or tylenol? Good luck we'll be thinking of you

 
Old 02-07-2008, 02:06 PM   #12
Junior Member
(female)
 
Join Date: Mar 2006
Posts: 35
Rosaflor HB User
Re: Who is IV infusions of bisphosphonates?

24 hours later: Reaction has passed. It started 30 hours after the infusion and lasted about 30 hours. Very weird: it just came, did its thing, and departed. Online info says reactions can start within three days and last up to four days so everything fits. In case anybody else gets bone pain, for what it's worth I found that Tylenol did nothing but Advil helped (so I guess the reaction involves some kind of inflammatory process). I'd still choose bone pain over throwing up blood, which is what happened to my friend on Fosamax. Good luck to all.

 
Old 02-07-2008, 02:33 PM   #13
Senior Veteran
(female)
 
DesertBloom's Avatar
 
Join Date: Aug 2006
Location: CA, USA
Posts: 1,484
DesertBloom HB UserDesertBloom HB User
Re: Who is IV infusions of bisphosphonates?

Hi Rosaflor: I'm glad you reposted with your news... That's fantastic that it went away. I read virtually the same thing you did about the onset of these symptoms and how long they last. I can't remember, but did you take an oral bisphosphonate before the reclast? I took Actenol, and had the bone pain, but it didn't last very long. I'm about to finish Forteo and asked the dr about the infused meds, and she said if I had bone pain with the oral then the iv side effects would be much worse. Luckily I kept track of how long the pain lasted after I took the Actenol and it usually hit on the 2nd day after taking it and went away when I was taken off of it several times. I can't say it was horrible because the pain only lasted for minutes each time but came and went sporadically.

I hope your pain doesn't come back and you don't have any further probs. Good Luck...

 
Old 02-08-2008, 01:32 AM   #14
Junior Member
(female)
 
Join Date: Mar 2006
Posts: 35
Rosaflor HB User
Re: Who is IV infusions of bisphosphonates?

To DesertBloom: No, I have never taken a single dose of an oral bisphosphonate. I read online that current studies are looking at Reclast for people who've been on the oral drugs so data may be coming one day. I hope I haven't scared people by reporting my bone pain. It was definitely bearable and lasted only about a day. I just wish I had been prepared for it; this was definitely more than "flu-like syndrome". It's very interesting that people are having such different after-effects and also that the onset of after-effects varies so much. I wonder what determines these two things.

 
Old 02-08-2008, 10:17 PM   #15
Senior Veteran
(female)
 
Join Date: Jan 2005
Location: California
Posts: 2,704
taape HB Usertaape HB User
Re: Who is IV infusions of bisphosphonates?

Rosaflor,
Was the bone pain bad enough to keep you in bed for a day? I'm glad it went away.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
New here, iron infusions again? multipleAInancy Anemia 3 01-11-2009 07:31 AM
Oral vs. IV bisphosphonates and risk of osteonecrosis of the jaw IADT3since2000 Cancer: Prostate 5 01-17-2008 04:40 AM
bisphosphonates side effects in the news Myth Osteoporosis 7 12-19-2007 12:19 AM
Osteoporosis and Bisphosphonates (Fosamax, Actonel, etc.) sparkadoodle TMJ Disorder -TemporoMandibular Joint 8 10-27-2007 11:24 AM
Information Re: Osteonecrosis of jaw and bisphosphonates, Fosamax etc. legallyblondied Osteoporosis 28 09-14-2007 10:20 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



phylwill1152 (22), turtlelady (8), Piano0105 (7), taape (4), Titchou (3), Precious55 (3), Arggg (3), Sensitivo (3), dorri (2), Millard (2)

Site Wide Totals

teteri66 (1180), MSJayhawk (1013), Apollo123 (909), Titchou (856), janewhite1 (823), Gabriel (763), ladybud (755), midwest1 (670), sammy64 (668), BlueSkies14 (607)



All times are GMT -7. The time now is 03:01 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!