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Old 11-08-2012, 05:11 PM   #1
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Venofer IV infusions

My hematologist has me going in for infusions twice a week for 9 weeks for a total of 18-100mg treatments. My ferritin was below 1 and hemoglobin under 8. Has anyone else had this many treatments?

 
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Old 12-24-2012, 09:49 AM   #2
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Re: Venofer IV infusions

I am new to this whole iron infusion thing. I haven't had one yet, but I just went to the hemotologist this morning as was told I'd need the same infusions but 100 mg once a week for 6-10 weeks. my ferritin was less than 0.5 last week when I had my blood done.

 
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Old 12-24-2012, 10:13 AM   #3
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Re: Venofer IV infusions

Hi there,

I have gone through several rounds of infusions of venofer over the last years.

Although they can be time consuming, the infusions themselves are a piece of cake. The infusion center is very comfortable, with each patient seated in nice recliners, where juice and snacks are either provided, or can be brought in yourself. Most infusions will take a few hours, during which time you are free to read, use your computer, watch TV, or whatever you like to pass the time. There is no pain, and I found it to be relaxing.

I felt much better too, as my levels began to rise. Both times, I did not need the full round of treatment that was initially prescribed.

I hope your anticipation is eased a bit by knowing that it is a positive step in regaining your health. My best to you...

 
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Old 12-24-2012, 08:30 PM   #4
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Re: Venofer IV infusions

I started mine Nov. 2 and still have 6 more to go. The first one I had a little muscle soreness and upset stomach. Since then I have been fine. Before the infusion they give me Tylenol and once IV is started I get Benadryl and steroids in the IV. I only have one good vein so that is starting to get old. I hope they get you in pretty quick, when my dr discovered how low my ferritin once he had me start infusion the next day. I was low and after six infusions I had not felt any relief. I wish your dr would let you go twice a week. After 12 infusions my energy level is maybe 50%. I am really glad my dr has taken such great care of me. Have they figured out why you're anemic? I am having a hysterectomy 12/26 so i should be good from here on out. I hope that you start feeling better soon.

 
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Old 12-25-2012, 08:39 PM   #5
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Unhappy Re: Venofer IV infusions

Quote:
Originally Posted by Huttotom View Post
I started mine Nov. 2 and still have 6 more to go. The first one I had a little muscle soreness and upset stomach. Since then I have been fine. Before the infusion they give me Tylenol and once IV is started I get Benadryl and steroids in the IV. I only have one good vein so that is starting to get old. I hope they get you in pretty quick, when my dr discovered how low my ferritin once he had me start infusion the next day. I was low and after six infusions I had not felt any relief. I wish your dr would let you go twice a week. After 12 infusions my energy level is maybe 50%. I am really glad my dr has taken such great care of me. Have they figured out why you're anemic? I am having a hysterectomy 12/26 so i should be good from here on out. I hope that you start feeling better soon.

how low was your ferritin before you started infusions?
my doctor told me on Monday that they'd need to submit everything to insurance first and because of Christmas it would take a few days longer to get an approval. honestly, I would've started the infusions that same day if I could've. I just want to feel better already

 
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Old 12-29-2012, 02:44 PM   #6
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Re: Venofer IV infusions

I just switched to Venofer after a bad Dextran reaction. Huge difference. I still have some slight side effects but so much easier on me. I have had (I think) four of them this month and am starting to feel better. Yay!

 
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Old 12-31-2012, 02:45 PM   #7
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Cool Re: Venofer IV infusions

My levels were below a one is what the doctor said to me. Not sure how low. My insurance pays all but $66 for each infusion which will be about $1500 out of pocket. I am feeling much better these days but it was not an immediate fix it is a slow gradual one but worth it in the long run. Six more infusions and I should be done. I am eating a lot of baby spinach, potatoes with skin and lean red meat. I cook almost everything in cast iron skillets now. I had a hysterectomy on 12/26/12 so I am hoping that helps as well. My hematologist wanted that fixed and gyno agreed. Are you craving ice or gum? I was going through packs of gum a day and chewing more ice than my machine would make. If I didn't have either of those two things I went into panic mode. After a few doses I noticed I was leveling off and now the desire for both are gone. I can clean my house without being exhausted all day. Walking and climbing a flight of stairs was a nightmare. I thought my asthma and age was getting the best of me. I hope your doctor can get you in soon so you can feel better sooner. Take it easy until you get everything fixed. Low iron can mess everything up. Best wishes!

 
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Old 01-01-2013, 06:21 PM   #8
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Re: Venofer IV infusions

I'm going in for five Venofer infusions total. Then I go back in a month to see if my levels are up. I definitely have more energy now. It has been more than a month since I started them. They were supposed to be one a week but, for various reasons, I had to push out a couple. I'll find out at the end of January how the Venofer worked. Have to say, I like it much much better than the other iron. Oh, and yes, I had severe ice cravings (pagophagia) for a couple years. After my very first iron infusion, I no longer craved it. In fact, it's been a year since that time and I order my drinks without ice now! Strange, I know.

 
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