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Ironless 07-20-2011 01:48 PM

Venofer Treatments
Hi, all ~ I've been lurking for several days and wanted to share my story and see if anyone had any advice or similar experiences. My hgb started dropping in April 2010 due to extremely heavy periods; by the end of the summer, I had zero energy and my labs were atrocious despite taking iron supplements. I started Ocella in September, which succeeded in lightening my periods, my labs and energy levels improved slightly, but then plateaued (hgb around 9.0, crit 30 at this time). Flash forward to this spring when everything has started declining now seeing a hematologist every few days. Crit 28, hgb 8.8, Iron 6 (!!!!), Iron Saturation 1.5%, Ferriten 2. MCH, MPV etceteras all low. I started the first of 5 Venofer treatments yesterday morning. By noon, I had a sore throat and ear pressure. By 6pm, I had a swollen tongue and dark red pinpoint dots all over my soft palate and my muscles were achey. Took lots of benadryl, was fine by 3am. I have my next treatment at 11 tomorrow; they are going to give me some antihistamines first..... I am a bit worried about having a worse reaction!

Looking forward to your comments,

writeleft 07-20-2011 02:39 PM

Re: Venofer Treatments
Hi there,

I am sorry you had such a reaction to your venofer infusions, I went through a series of them myself, and was lucky enough not to have any adverse reactions. I sure hope the antihistamines do the trick for your next one. Your strange combination of symptoms must have been pretty scary...

Please let me know how you do tomorrow, and I hope it is symptom free.


Ironless 07-22-2011 08:29 AM

Re: Venofer Treatments
Thank you, Janet ~ my second Venofertreatment went fine! The IV benadryl zonked me out far more than I expected - they are going to halve it on Monday when I get Treatment #3 as I was not able to drive afterwards.

writeleft 07-22-2011 11:01 AM

Re: Venofer Treatments
Oh good to hear...except about the zonked out part. At least you can look forward to the next one being somewhere in between being covered in spots, and being wiped out to the point you could not drive! My next hope for you is that you find some relief from the treatments as a whole.

Thanks for sharing your latest info, and I will be looking forward to hearing how the next one goes...hopefully just perfect.


Ironless 07-27-2011 10:05 AM

Re: Venofer Treatments
Hi ~ Just had my 4th Venofer this morning; 5th on Monday. I had a hydrocortisone drip for treatments 3 and 4 which worked out perfectly; no side effects whatsoever. One thing I have noticed since starting the treatments is that I am super constipated (agh, if it's not one thing, it's another!) Bloodwork has not improved yet, but I guess that can take several weeks (?)

writeleft 07-27-2011 11:06 AM

Re: Venofer Treatments
You are right, one thing or something else! I do remember seeing the effect in the week after the last infusion, and i have not needed another round so far.

Ironless 08-01-2011 08:05 AM

Re: Venofer Treatments
Had my 5th (and hopefully final!) Venofer today... my hgb has jumped up to 10.4 -- the best it's been in over 4 years:) I go back in a month to see if I'm able to sustain this; the md does not think they will be able to get me all the way to normal, but that's okay -- I definitely have energy in this range. My iron and ferritin results are still pending so I am not sure if they have gone up at all yet...

Ironless 08-02-2011 12:26 PM

Re: Venofer Treatments
WOW, get these results: My iron was 6 last Wednesday right before my 4th Venofer and it was 106 yesterday before my 5th treatment! Ferritin also went from 1 to 29! I feel really good -- not used to having so much energy!

writeleft 08-03-2011 02:46 AM

Re: Venofer Treatments
That is what I call RESULTS! Great news...I wish I could remember what my numbers were, but so much has happened since then, there is no way I could tell you. I do not remember anything so remarkable as yours though.

Except for the reaction to the first infusion, at least now you know that you can get great results from this treatment, and you do not have to worry about anemia getting you like it did before, again. I would consider that in itself as an accomplishment!

Thanks for sharing your positive experience, don't ever forget that for every post, there are lots of folks out here reading and learning about their situation and your positive message here is helpful to many others. I wonder how many readers never post, but simply read what others write. From the numbers I see reflected, it seems to be quite a large ratio.

Please come back anytime you have another issue to talk over, or any other questions you have, we are always here to help.


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