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    Old 02-05-2009, 08:06 PM   #1
    seamist
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    Smile Iron Infusion side effects

    Hi I am new here-first time writer & want to say thanks for all your helpful responses as I had my first iron infusion-in a very small dose-2 days ago- as I had severe reactions to other types of infusions.
    Just sharing your thoughts has helped me with my aches, pains & severe head ache today! Yes I got the leg pains & a little heart trouble the first night but was fortifide with meds to help with that BUT I did not expect the flu like pains & misery today-but hearing it is common among you was a help. I did let the nurse know my dillemas.
    Thanks for being there & I will be having another treatment each week in these small doses & will be prepared next week-I hope.
    I will be in touch after that & compare my days.

    Last edited by seamist; 02-23-2009 at 05:02 PM. Reason: see responses

     
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    Old 02-09-2009, 08:48 PM   #2
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    Re: Infusion

    Seamist--Welcome to the boards. How are you getting along now? Thinking of you! Keep us psoted.
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    Old 02-10-2009, 06:06 AM   #3
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    Re: Iron Infusion side effects

    Hi -thanks for the "welcome" & I am going for the second infusion today & after the 3 days of misery & the last treatment I started to feel better again. I am 'pooped" all the time but I will keep you updated as this week progresses. Good to hear from you-again thanks!

    Last edited by seamist; 02-23-2009 at 05:08 PM. Reason: Help & knowledge

     
    Old 02-21-2009, 02:59 PM   #4
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    Re: Infusion

    Quote:
    Originally Posted by seamist View Post
    Hi I am new here-first time writer & want to say thanks for all your helpful responses as I had my first iron infusion-in a very small dose-2 days ago- as I had severe reactions to other types of infusions.
    Just sharing your thoughts has helped me with my aches, pains & severe head ache today! Yes I got the leg pains & a little heart trouble the first night but was fortifide with meds to help with that BUT I did not expect the flu like pains & misery today-but hearing it is common among you was a help. I did let the nurse know my dillemas.
    Thanks for being there & I will be having another treatment each week in these small doses & will be prepared next week-I hope.
    I will be in touch after that & compare my days.
    I had 2nd iron infusion 2/10{different formula} & came home & then an hour later I ended up in the hospital for 4 days-as heart kicked up & also had a heart cath. done. This formula won't be used again! Due to the doctor being away this week-I have to wait untill 2/24 now & see him first etc.-due to reaction!
    Have any of you folks had the shaky inside feeling, absolutely weak & can hardly make my stairs this week-just curious?

     
    Old 02-21-2009, 05:43 PM   #5
    tricia906
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    Re: Infusion

    Hi,

    Can I ask which Iron you are getting? How do they prepare you & if they prepare people ahead of time why is it so many get bad reactions still?

    Also, if you dont mind, what was your hemoglbn before your Dr ordered IV?

    THX a bunch & I wish you good future Infusions.

     
    Old 02-21-2009, 09:22 PM   #6
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    Re: Infusion

    seamist--Sorry that you are having such a hard time. I wish there was an easier way. Hopefully, they will find the right combo for you without big reactions. Keep us posted.
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    Old 02-22-2009, 08:50 AM   #7
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    Re: Iron Infusion side effects

    Hi-You asked how they prepared me-do you mean with the bags of "side effects" meds? This time it was benedryl & hydrocortisone & iron. As to what kind of iron-I will ask again as so much info was given me-now I feel dumb!
    It will be this tuesday I see the doctor & labs before & I have lots of questions. I am usually on top of all these things. Any more I should ask? Please feel free to inform me-thanks for your replies!

    Last edited by seamist; 02-23-2009 at 05:07 PM. Reason: help

     
    Old 02-22-2009, 08:57 AM   #8
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    Iron Infusion Side Effects

    Hi-I think I answered you in FLFlowergGirl box-oops!
    Thanks for inquiries-I hope to have more answers this week..have you had these done BriansMom444 ?

    Last edited by seamist; 02-23-2009 at 05:06 PM. Reason: need help

     
    Old 02-23-2009, 05:22 PM   #9
    seamist
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    Re: Iron Infusion side effects

    Hi BriansMom444- I did send you a reply in the FLFLOWERGIRL box-I am learning!
    I had 2nd iron infusion 2/10{different formula} & came home & then an hour later I ended up in the hospital for 4 days-as heart kicked up & also had a heart cath. done. This formula won't be used again! Due to the doctor being away this week-I have to wait untill 2/24 now & see him first etc.-due to reaction!
    Have any of you folks had the shaky inside feeling, absolutely weak & can hardly make my stairs this week-just curious?
    Absolutly no energy & blood pressure acts up if I even try to walk stirs or do minor things...very frurstrating..Will see the oncologist/hemotologist tomorrow 2/24
    labs & visit with him prior to infusion..a daughter is coming too as she is trying to grasp this & understand more. I am learning slowly-any light you can shed would be most appreciated.

     
    Old 02-23-2009, 05:24 PM   #10
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    Re: Iron Infusion side effects

    Please see above for your reply-I am not good at this yet! Thanks for any help you can be at this time as it is so new!

     
    Old 02-23-2009, 06:36 PM   #11
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    Re: Infusion

    Hi Seamist........Im sorry you seem to be having bad luck w/ the infusions.

    I do hope they find one that works without complications.

    What happened to your heart? Which infusion did you recieve? Dextran?
    Also, why did they change the formula?

    May I also ask why you didnt take the pill form?

    Im also trying to gather info.

    All the best

    PS: You didnt post in Flowergrls box. I too used to think that because the "POST REPLY" will be at the bottom of the last post. Whoever posted last, well their name is there but EVERYONE in the post will see it.

    I hope that makes sense, :-))

     
    Old 06-16-2009, 08:25 PM   #12
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    Unhappy Re: Infusion

    Hi all-I am finally back-had several iron infusions-one a week in small doses as bad flu like reactions etc for 3-4 days after each. I now waited 3 weeks to test again-I was finally at 30 BUT today I was told way down to 9 & more iron infusions asap now.Tests show no blood internal loss etc but marrow shows bone not making any either....very discouraging to feel so much lack of energy for such a long time. My immune is also very low & I get infections a lot & get put on antibioticcs fast-to curb these.
    Having my daughters wedding in 10 days-I am holding off on the infusion until day after that.
    Have any of you had the same problems of losing your iron & no reason?
    Yes I have been on oral iron at first-way back-not successful & I have to hold off on the immune infusions again as the iron so low-HELP!
    I have been searching the web BUT I will question the hemotologist more.
    I go to Dana Farber & love the doctor & trust him but WHY????
    Sorry to spout off tonight folks-I guess I wasn't prepared for this clout!

    Last edited by seamist; 06-20-2009 at 11:14 AM.

     
    Old 06-18-2009, 07:54 PM   #13
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    Re: Infusion

    seamist--There have been several people in the past that have not been able to hold onto the iron from infusions without a reason found. It is very difficult, I know. I would say question your doctors more. They are the ones that can help you. I hope you have a good Hematologist and GI in this case. Good luck with your daughter's wedding. Take care and keep us posted. FLFG
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    Old 06-19-2009, 09:01 AM   #14
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    Re: Infusion

    Thanks FLFLOWERGIRL-I know I spent so much time on the web checking out Marrow Firbrosis-as I spoke to my late dads Doctor & in the last 6 weeks of his life-discovered by hemotologist-at 97 BUT he died of a quick heart attack thank heavens & never took pills untill the last few weeks!
    Yes it is discouraging BUT I did find Anemia one of the 45 causes of his Marrow Fibrosis..I will have several questions for my doctor when I get there in a week or so.
    I settled down a lot and I will enjoy the wedding-after all this time being so ill-well worth it to get there! In the mix is the fact that came up 12 days ago-I will be moving into a smaller one level home & getting rid of my 8 room home-it all came about so fast & it is on the water front lake-a dream come true-across from my sons family too-only 5 minutes away-God has blessed me- as I was not even looking but going to put in electic stair seat!
    Things are happening & my mind gets busy BUT the body doesn't-I will have to take a day at a time! I so appreciate your encouragement & reply-it seems you help so many-God Bless you. If you have heard of this marrow problem please inform me-ok-again thanks so much & I will write asap I speak to the doctor-yes I do have a gastro man & all tests seem great-no problem there!

     
    Old 06-19-2009, 11:07 AM   #15
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    Re: Iron Infusion side effects

    Quote:
    Originally Posted by seamist View Post
    Hi I am new here-first time writer & want to say thanks for all your helpful responses as I had my first iron infusion-in a very small dose-2 days ago- as I had severe reactions to other types of infusions.
    Just sharing your thoughts has helped me with my aches, pains & severe head ache today! Yes I got the leg pains & a little heart trouble the first night but was fortifide with meds to help with that BUT I did not expect the flu like pains & misery today-but hearing it is common among you was a help. I did let the nurse know my dillemas.
    Thanks for being there & I will be having another treatment each week in these small doses & will be prepared next week-I hope.
    I will be in touch after that & compare my days.
    May I ask what formula they used and what the small dose consisted of...how much and how often? And with the small dose, you didn't have reactions?

    Also, do you recall what the formula and dose was when you did have the horrible side effects?

    I'm about to have infusions, so researching what will work best. It seems the smaller dose (whatever that is) is more compatible to the body.

    Any help you can give me on this is sincerely appreciated. It's all so traumatic and not knowing what to expect or possibly having a better idea of what I can do to help the process.

    How do you feel now? I hope it's much better for you.

    Thank you,
    joisbelle

     
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