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?
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.
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.
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?
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.
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.
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?
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?
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.
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
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.
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...
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.
Hi Taape---No, I didn't stay in bed but was taking life easy anyway, for a few days after the infusion. Had cleared my calendar, having read about the famous "flu-like synrome" which, it turns out, I never got, no fever or malaise. I did not get nausea and in fact had an excellent appetite through the whole thing. It's now been a week (tomorrow morning) since my infusion and I am back to regular exercise (swimming, walking a few miles, free weights, housework). I know that some of the bisphosphonates bad news can be very long-term so I guess we will all be waiting forever for the other shoe to drop but, for now, things look fine. I would choose Reclast again. My friend forgot to remain upright after taking her Fosamax, bent over to pick something up from the floor, and an hour later threw up blood. I'll take a backache any old time instead of that. Advil was a big help. Good luck to all.
Thanks Rosaflor,
The first Fosamax pill I took put my stomach and throat on fire, never again! I hope you don't have any other side effects and can just go about life making more bone. I hope your friend's stomach recovers.
Thanks for responding, taape. I feel as if my decision to take Reclast was kind of cold-blooded: after reading everything I could find online (there's a complete description of the research behind it) I figured that the worst thing that could happen would be if I developed atrial fibrillation, and that scared me less than having a broken back or hip, which I am at great risk of doing due to advanced osteoporosis. My husband has had severe heart arrhythmias since 1991 so what-all they can do for arrhythmias is not unfamiliar territory to me. In their bag of tricks they have medications, pacemaker, defibrillator, CRT, ablations and other surgical procedures, etc.. I put independent functioning right at the top of my list of priorities, and I figured that, in the worst-case scenario, with a pacemaker or whatever I could still make it to the grocery store, pharmacy, post office, doctor's appointment, but with a broken back, it's not so certain that I could even get out of my apartment. At the same time I feel astonished that I so easy accepted a drug that has been approved for clinical use only since 2000 since my husband is a quite conservative pharmacologist who always hovers and says, "Don't take that yet---we don't have much longitudinal data" (one example is hormone replacement therapy, about which he turned out to be right on the money). But at 74 I am beginning to get the point that we older folks can't avoid ALL trouble but maybe sometimes we can choose our trouble. At least, I hope things work that way.....We do what we can to inform ourselves and make the smart decision, but, at some point, accepting any treatment becomes an exercise in trust.
What does your doctor say about what you should/could be doing now? Sounds like you are thinking about iv bisphos.
