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Old 12-09-2008, 02:25 AM   #1
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Still Anemic after 11 Months of Treatments

Hi,
Latest results:
WBC - 3.9 (4.0 - 11)
RBC - 3.46 (3.50 - 5)
HGB - 89 (115 - 160)
HCT -.29 (.35 - .47)
MCH - 25.7 (36 - 34)
MCHC- 310 ( 315 - 365)
Ferritin - (15 - 225)

And these results are after 11 months of treatment. My attempt at IV Iron ended me up in the emergency ward, and I have been taking oral Triferexx 150, 2 times a day since January.

I have started having spontaneous hemmoraghes in my eyes over the last few months, along with all the other symptoms anemic people seem to have. My question is have any of you been able to successfully go on short term disability until your blood levels are back in the normal range. I can barely make it through the day and the commute home (have fainted twice on the bus) and yet my insurance company denies my claim. I have a job I love, so I have been dragging myself in most days, althougth I really dont feel I am giving them the quantity of work they deserve. Any suggestions or advice would be greatly appreciated.

Daisy53

Last edited by Daisy53; 12-09-2008 at 02:50 AM. Reason: Ferritin level is 2

 
Old 12-09-2008, 09:48 AM   #2
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Re: Still Anemic after 11 Months of Treatments

Daisy53--I cannot understand how you are even able to work, that can be a dangerous situation for you. I too take Poly Iron 150 for the past 2 years. I would like to ask you if you ever found a reason for your anemia and, secondly, did you have testing done to try to get to the bottom of this?

I was DX'ed with anemia and started out on Ferris Sulfate 65 mgs 2-3X daily, which absorbs very, very, well. It is very harsh on the GI tract for some people like myself. I went from a 8.5 Hgb which is moderately anemic to 12.9 within 2 months time. This is record time considering how anemic I actually was, the docs were totally amazed, I had no idea why????

Then, I became very ill from the iron and was told by the GI doc to discontinue all iron supplements and was sent to a Hematologist for IV iron therapy. I was scheduled for an infusion the following week. When I got there my BP was headed off the charts so he decided against IV, I was too ill to risk infusion. I was told go home and resume taking Poly Iron, after the GI warned me not too. So, I did what the Hema asked. I was desperate, all along my Hgb was continuing to drop and I went through this for 7 months time and of course became anemia once again, for the second time.

Then I started getting very scared because NOTHING was being done for me, so, I went from 1 poly Iron to 2 = 300mgs of iron daily. This is what the GI prescribed and wanted me to try but I couldn't take it. Mind you I could hardly take the iron because I had enteritis for 3 months, but I knew it would make blood cells so I did it at all cost. This is when my blood started to go up. I basically figured this out on my own.

Next, I was told that my cause was from heavy periods, so I had surgery (endometrial ablation) to correct heavy bleeding, they also found 7 polyps and removed those. Then I thought okay, all is well. I got to the non anemic stage and then the ferritin started to go up slowly from 2-20 and finally, to 43 in 15 months time.

I went back to the GI doc and he said, I was not absorbing into the ferritin because I was having malabsoprtion from taking PPI's for my stomach issues. He also said, this was a ridiculous amount if time and it showed how iron deficient that I was. Almost 2 years later my ferritin is now 58. Not really all that great but I will take it! I am now taking my PPI every other day in hopes to absorb more from my supplements and food. After one year I decreased the Poly iron to 150 1X daily. I am to remain on this the rest of my life.

There also was another poster here in the past that was prescribed Poly Iron 3X daily. I think this is what I needed to do the whole time. With the first iron even though it is thought that I have malabsoprtion I absorbed it extremely well. This leads me to believe that Poly Iron is less easily absorbed, but it works and that is all that matters to me. Perhaps you need more iron, a differnt type, and/or a solution to your iron loss. There can be several reasons for anemia, not just one. Anemia is only a symptom of something else going on that is using up iron stores resulting in a lowered Hgb. Best of luck to you and keep us posted. FLFLOWERGIRL

 
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Old 12-09-2008, 08:19 PM   #3
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Re: Still Anemic after 11 Months of Treatments

Hi Fflowergirl,
Thankyou for your kind reply and support. I am new to this (or any forum) so hope I am doing this right.
I am going to see my Hematologist Thursday to discuss having a bone marrow biopsy and to get cross-matched for another blood transfusion. Today I passed out bending over to pet my cat, freaked my cat out, but I wasnt hurt.
The iron supplements definitely are not working and since I dont toletate the IV I dont know whats left to try. I eat well and dont drink, so my diet is good.
I'm glad you are able to have such success with the oral supplement. And it sounds like you have maintained a very positive outlook. Please keep in touch, your words of wisdom lifted my spirits.

Warm regards,
Daisy53

 
Old 12-10-2008, 07:58 AM   #4
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Re: Still Anemic after 11 Months of Treatments

Hi Daisy,

What IV iron preparation did they give you? There are three types that are used. I can not use two of the types (Infed and Ferrlicit) because of severe allergic reactions requiring repeated hospitalizations but I am now using Venofer. I still react but they are able to control the reaction with IV benadryl, solumedrol and other medications. I may, over time become very reactive to the Venofer too and then the only option will be blood transfusions. If you had a bad reaction to one does not mean you will to another.

Do your doctor's know what is causing your anemia? I have been worked up from top to bottom. I do have a definite malabsorption problem but they do not know why. I have to get the IV iron every 3-4 months on average since I can not absorb oral supplements and iron in my diet is not absorbed either. My monthly cycles have been stopped by hormones but it has not slowed down my drop in ferritin. The doctors knew that my cycles were not the cause but they wanted to stop all extra blood losses.

Getting IV iron this often is really difficult on my lifestyle and well-being. Even though I feel better after the 8 week course of IV iron, I feel terrible when I am getting it. It is like having the flu for 8 weeks. The trouble with the blood transfusions is that they would not transfuse me until my Hct was below 8. I feel like death long before my Hct get to 8 and at the same time I am trying to work full time, raise my children, take care of a house and volunteer at school, etc. It is not like I can sleep all day in an 80 degree house until they will transfuse.

Good luck and I hope you hematologist has some good options for you.

 
Old 12-11-2008, 03:21 AM   #5
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Re: Still Anemic after 11 Months of Treatments

Hi Kiwilily,
I have used two types, Venofer was the last one we tried and even with the Benadryl and other pre-meds I had a severe reaction. My blood pressure dropped quite low and my arms and legs swelled up quite badly. I also have a faulty heart valve, so my hematologist sent me to my cardiologist after this last transfusion and together they decided not to risk another IV but to try the oral meds instead. However, that was 11 months ago and since my levels are refusing to rise I am going to discuss the option of trying the IV again. I just cant keep running on empty.
The really frustrating thing is after dozens of tests they cant seem to find the cause of the anemia. I went to a Gastroenterologist and was tested end to end - the only thing he found was one small intestinal polyp which was removed.
Thank you for your words of encouragement regarding the IV. It means so much to hear from someone who has also had bad reactions to the treatment but has perservered and come out for the better.
Take care and I hope things continue to improve for you.

 
Old 12-11-2008, 11:17 AM   #6
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Re: Still Anemic after 11 Months of Treatments

I have been Dangerously Anemic for most of my adult life. They tried all sorts of iron preparations for years. I finally was sent to a heamotologist. He said lets try some different things. I have to take massive amounts of B12 and B6 now, but I am functioning. I am still quite anemic, but out of the dangerous levels.

My suggestion would be this, if the iron is not working try something else.

T

 
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