Checking in after my Reclast IV Infusion

Hello out there,
I thought it was time to check in with all of you to let you know I had my Reclast IV Infusion on Wednesday the 27th of February.
I was very nervous about doing it - though I researched as much as I possibly could about it, I never came to a place of complete certainty that it was the absolute right thing to do. The best I could come up with was it was probably going to be okay and and it didn't appeal to me any more or less than any other of the options; alternative, burying my head in the sand and so on... not all that logical I know, but it's the truth.
The IV was not a big deal for me, no physical discomfort of any sort. Emotionally, I was pretty freaked out, but I would expect that of any of us. It was done around 3:00 in the afternoon at the Infusion department of Oregon Health Science University. I was there for probably a total of 2.5 hours.
That evening my family gathered at my house to eat dinner together, my husband and I had picked up roasted chicken and salad. I even made a peach cobbler for dessert.
I was very tired by 8:00 pm and fell quickly to sleep. I awoke at about 1:30 am with a fever of 99.8, joint, bone and muscle pain and chills. Through the night my temp increased till I was at 102.4, the pain increased as well.
By morning I was experiencing transient joint, bone and muscle pain and fever. All that went on for several days.
My doctor reminded me of the discussion we had prior to the procedure about flu like symptoms sometimes being a side effect of the Reclast IV Infusion. I just didn't think of it as flu because it didn't feel like flu. I just hurt really bad and my temperature was out-of-wack!
By Saturday evening, though I did not feel well, I asked my husband to take me to the cabin in Brighton. I just wanted to be able to hear the river and snuggle in front of the fire. He said he was concerned that it may not be in my best interest to be away from home, but I really wanted to go.
We did go and it was great! It helped me to be away from the house and took my mind off of the realities of daily life.
I started feeling a little better by Saturday, though I felt emotional and had a good cry while we walked hand-in-hand by the river.
I'm happy to report that by Sunday I was doing good, other than feeling easily tired out.
I should also mention that on Thursday, the day after the procedure, my doctor recommended I use Tylenol for the fever and take my pain medication as needed for the transient joint, bone and muscle pains.
One week later I am doing very well - no fever - no transient pains. Only time will tell us if the Reclast did it's job, I sure hope so.
It's time for my third dose of calcium, magnesium and Vit D, I'd better go -
sdonesley

By rosaflor
Posted March 5, 2008 at 11:33 am
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Welcome to the gang. I am now one month post-infusion and having no problems except that my appetite for protein and dairy has not abated and I am struggling with my weight. I go completely crazy when I pass the cheese counter at the supermarket, but I guess this is good news as I must be making bone. So far I am very pleased with Reclast. In spite of the post-infusion reaction I would do it again in a minute rather than take the pills that cause gross problems for so many people. It seems to me that Reclast is the least-bad choice of many choices that we'd just as soon skip. Best of luck.

By myboy226
Posted March 11, 2008 at 1:49 pm
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Hi, I'm new. I am scheduled for my first reclast infusion this Friday. I was diagnosed 10 years ago; now at a very young 53 I am told that something must be done or I will be in a wheelchair by 60! How terrifying that is; especially since I have always been so independent and hope to remain that way.
I have had no problems except my back hurts more often than it used to. Now I feel like I am basically an egg shell and I'm so afraid of something happening. It is pretty severe at -3.5 T-score.
I can't wait to do this procedure - I hope it provides immediate protection - I don't know how that works and how do they decide that it's needed once a year, vs every 6 months or 2 yrs, etc.?
However, I am having some anxiety about the pain, after reading the experiences of so many.
I would of course appreciate your comments, prayers, etc. THANK YOU.

By rosaflor
Posted March 11, 2008 at 5:32 pm
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Reply to myboy226: Friday is the big day! Probably you have read everybody's experiences posted on the board. When the infusion goes in you feel nothing; it takes 30 minutes. The first day people seem to feel nothing---I didn't and others have reported the same. Then, at some point in the next 24 hours, most people feel something. Some don't get anything but a little joint pain, some report getting chills & fever, others report getting achey, others get bone pain (mine was a pronounced ache in my pelvis and thighs). This reaction period doesn't seem to last more than 24 hours so don't panic: this too will pass. Some people have found relief with Tylenol; I found that Tylenol didn't impress my bone pain one bit but Advil knocked it out. Then, that was just about the end of it---maybe a twinge once in a while, but hardly noticeable. I haven't heard of anybody feeling sick or nauseated, in fact many of us get a really sharp appetite almost immediately. Ever since my infusion I have been craving protein and dairy like mad---fish, chicken, cheese, ice cream, milk---have gained five unwanted pounds!---but am trying to be patient with this as I believe I am making bone and that, for now, is my priority. I am now a month past my infusion and am pleased with my decision, especially when I read about people's difficulties with Boniva, Fosamax, and Forteo. Hang in there. Oh, one more piece of advice: you want to drink like a fish all around the time of the infusion. I drank extra fluid all the day before so I'd be really well-hydrated. The day of the infusion (8:30 AM appt) I got up at 6 and swigged tea and water then I took a bottle of water with me and drank it in the waiting room. Then after the infusion I came home and drank tea, decaf, water, and juice all day. I held my AM diuretic pill until after the infusion. I gather they don't want the drug to sit on your kidneys. Best of luck. We will all be thinking of you on Friday. And Saturday. And then you're done! For a year! (To read all the Reclast posts write Reclast in search box upper right-hand corner of screen.)

By myboy226
Posted March 11, 2008 at 5:44 pm
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Thank you for your encouraging words! So tell me (if you can); will it relieve my back pain right away - does it start to work that fast? It seems to be getting worse every day; I even wake up most days with back and neck pain - it even caused me to have the worst migraine recently, I was throwing up and it was awful.....

I thought I was really fine; now I have this feeling that I'm getting worse by the day and it is so scary!

By Tricia2
Posted March 12, 2008 at 10:47 am
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Well, its been almost 5 weeks since I had my Reclast IV. I am happy to report that I am starting to get stronger. I have several compression fractures in half of my spine.
This last month has been very interesting. I have some really strong days where I can walk without any help(no walker, no brace) and then other days, like Monday where I need all the help needed to walk. But I think physical therapy has alot to do with this. I have been doing weight bearing excercises for the last 2 1/2 weeks and my pt added extra weight this past Friday. So I think that hit me by Monday when I went back. Yesterday I didn't feel too bad.
I still have a lot of pain but its getting more tolerable. Its mostly all the muscles from my back and around my ribs. The more I move, the better off I am, but I do have to rest every once in awhile! I still can't lift anything, a glass of water is about it(so hubby still stuck with fixing dinner). But I am able to bend down and get back up a little easier if I happen to drop something.
I do have that feeling of "I know I'm starting to get better and I want it all now". But I do know that it will take time and lots more therapy.
I was fine the day of taking Reclast, but had a fever and chills the day after. It was bad for awhile, but worth it to start healing my back. Do drink lots of water before and after, I know this helped me.
Best of luck to you.

By myboy226
Posted March 19, 2008 at 4:33 pm
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Well, I had the infusion last Friday and it was not bad other than the fact it took 3 tries to get a vein. I was expecting the worst on Saturday, but I have to say I hardly felt anything, some minor shooting pains here and there and that's it. I feel so free that I no longer have to take pills or even think about it for another year! I think this drug is a blessing! I also have to say regarding appetitie; mine has been less than before, so far no cravings. I recently started on meds for inactive throid, so that may have something to do with it too......

By sweetie
Posted April 14, 2008 at 10:38 am
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I am to have the infusion this Wed. 16th. I will be the first one in Enid, Ok to receive it. I am thankful for your site and friends like you to talk to about Reclast. It is a scary thing to go through. I have read all the information that I can so I guess I am ready. I will do as you all said to do (drink, drink, drink Water that is!) Let me know how you are feeling since your procedure as time passes.

By sharo
Posted April 14, 2008 at 3:21 pm
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I had my Reclast infusion March 12 ... I posted my reaction somewhere on this page. I went shopping the next day but that night had aches and chills, no fever. Tylenol took care of it. Felt fine next day and have ever since. I had had a persistent SI joint area pain for years and now it seems much better, at least so far. Good luck.

By sweetie
Posted April 17, 2008 at 11:45 am
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I had my Reclast infusion yesterday 4/16 and so far I have had no bad reaction yet. I drank alot of water and took 2 Tylenol before the procedure. I will let you know later if I had any aches or pains in the next 2 days.

By sweetie
Posted April 26, 2008 at 11:40 am
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Since I had my Reclast IV, I have not had any problems thank goodness. I don't know what I was so worried about.
I hope it stays that way. Good luck to any one else that wants to do this.

By TootziePop
Posted May 21, 2008 at 1:26 pm
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I was just told about this treatment yesterday. I am scared to death of it. It seems to new to me? It has not been on the market that long? I was told I have severe bone loss. I do not have a lot of pain only in my knees which I am not sure that is coming from the Osteoporosis. Any help would be appreciated!

By sdivas
Posted May 21, 2008 at 1:35 pm
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Hello, I wanted to reply to your post although I am not on Reclast. None of us, including health professionals have a crystal ball that will forsee our future. I think of anything I really dislike about any health concern is using fear as motivation to make any decision. I've been in the -3 range for over 10 yrs; hip/spine. Fortunately, I'm fracture free. Personally, I don't think it's a good mental image that you have been given. I do wish health professionals would make suggestions based on "right now" and not the "what if" or in your case stating you will be in a wheelchair. I wonder how anyone can make that prediction. Decisions are always difficult regarding medication. I think those decisions should be make from gathering information to make an informed decision, and not out of fear.

By JilleWhite
Posted May 22, 2008 at 5:34 pm
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You are in Enid? I am in the Tulsa area. The dr. is talking to me about Reclast or Forteo. Does anyone know.. reclast I guess is in the same family as Actonel/Boniva/Fosamax... does it have the same risk to the jaw bone as those do? I took all three of those over the years, and have had jaw problems for about 5 years. I do not want to take anything that could further my jaw problems.. HELP! Jill

By TootziePop
Posted May 22, 2008 at 6:58 pm
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Hi Jill,

I have taken these meds that you mentioned too. I had no jaw problems but they did nothing for me. I am leary of this reclast as it is so new. I haven't seen anyone on here that had it a yr or so ago , that makes me nervous. I am not interested in experiments, I want something I know has shown good results. I haven't been able to find that. I so hope you find some answers . I personally would not take anything else that could cause me further jaw damage. That is just my opinion.

By JilleWhite
Posted May 22, 2008 at 11:47 pm
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I feel just like you said... very fearful and leery of doing anything that might cause further damage... I'm too young to mess with it! UGH! I have an appt. with my Internal Med. dr... want to discuss all of this with her, plus Livial. Have you heard of that? A "Safer" hormone that apparently has some bone building qualities to it. Also, going ot be more serious about taking my Vit. D, taking Osteopeak again (natural supplement) and possibly go back to taking Eniva Vibe (liquid multivitamin)... I had good results the year I did those things... I have restarted the Vit. D,and Osteopeak.. just gotta order the other stuff...
thanks for your opinion!
Jill

By MotherGoose
Posted May 23, 2008 at 7:09 am
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JilleWhite:
What are your jaw problems?
This might be -- most likely -- related to an entirely different situation, such a your temporomandibular joint. One bone -- your jawbone or mandible -- connects to your skull as (2) separate joints -- in front of each ear. This is how we open our mouths. Many folks have problems with these joints. THis has NOTHING to do with osteoporosis. (I will say that bone loss does show up in the mandible early on with no pain involved. Dentists pick up on this when doing Xrays.) Symptoms that may be related to TMJD (temporomandibular joint dysfunction) include but are not limited to: clicking, difficulty in opening ones mouth widely, tooth-grinding, headaches, etc. If one joint is slightly out of kilter, the other joint will be, too, but not be bothersome. Picture this -- one joint may be slightly to the rear of "normal" which makes the other joint be slightly to the front of "normal", since this is the same bone, different joint.
Osteonecrosis -- that is so feared by those that hear about it -- did show up in cancer patients undergoing large intravenous doses of biphosphonates and who had poor oral health. It is very rare in others taking small doses by mouth.
It would not appear that this latter condition is the cause of your jaw problems

By JilleWhite
Posted May 23, 2008 at 11:56 am
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My jaw problems have been blamed on TMJ.. but since I've been on Fosamax, Actonel, Boniva, I am "afraid" to just label it "TMJ".... there was a spot on my xray that could not be explained & thus far, I've not pushed for them to explore it...

By TootziePop
Posted May 23, 2008 at 12:11 pm
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Hi Jill,

I am awaiting a call form my rheumatologist for some answers to a whole list of questions that I have. She is recommending the reclast for me. I will let you know of any information I can get a hold of. I have read a lot about jaw problems with these meds. Take caution! Talk and ask as many questions as possible. Take Care!

By TootziePop
Posted May 23, 2008 at 6:16 pm
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I got no call as I expected. These Dr's have no consideration for us. I have to ask? I went to my rheumatologist for this the past week. This is what she recommended. She gave me no information on it at all. I mean nothing. Everything I found out I found out from this site. They charged 225.00 for the visit. She never mentioned about drinking the water or side effects. Is this normal? Or do I have a bad Dr.?

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