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Question About Anemia

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I was wondering if anyone else here has anemia.....if so, what do you do for it? Also what is the cause for anemia? Does it have anything to do with UMCTD?

 

I recently got results back and it is clear that I have anemia. I guess the next step is to find out why.

 

Thanks,


*WestCoast*

 

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Guest Sherrill

Hi Erin,

 

I have struggled with anemia for many years. I've probably had it ever since I got sclero, over 10 years ago now. But I have it even worse now with my renal failure, which is common.

 

I think the best thing I can do is give you two links to the main website. One is Anemia of Chronic Disease, and you'll see my name on that page.

 

The other is to My Experience with Anemia. This page tells you more than I would write here.

 

Hope this helps.

 

Warm hugs,

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Erin,

My hemoglobin went down to 6 when my stomach lesions bled. I got three transfusions and was put on iron. My anemia was due to watermelon stomach, lesions in the stomach that bleed spontaneosly. It's a rare disorder of the stomach and is usually associated with scleroderma.

Nan

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I have been anemic since lymphoma treatment 4 years ago. During the treatment I took Procrit injections to bring up my red count. The anemia continued long after the cancer treatment. The doctor assumed this was due to scleroderma.

 

The Procrit definitely increases the red count (hemoglobin) so that I am not anemic. It is an injection that I give myself once a week.

 

Best of Luck,

 

Craig

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Thank you so much, everyone, for your impute!!! It sounds like many of you have had successful treatment for your anemia...do you feel better now that you no longer have the anemia?

 

Did you find that anemia makes you tired, irritable, or any other symptoms?

 

Thanks again,


*WestCoast*

 

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Guest Sherrill

Erin,

 

For me the anemia is an ongoing battle! Because of my kidney failure, which almost always causes anemia, I can never relax and say I don't have it any more. The anemia of chronic illness is also something which you have to keep at the whole time, though it's not so bad as the kidney failure anemia. I guess I have both! :(

 

But anemia can certainly make you very tired and fatigued, but then so can scleroderma! But if you can get the anemia controlled it should help.

 

Before I started getting treatment for my renal failure anemia I ended up in hospital five times in fifteen weeks, with my Hb as low as 5! Each time I had a transfusion with 3 units of whole blood, but 3 weeks later I was back again.

 

I had all sorts of tests, but they came to the conclusion that it was the renal failure anemia, so treated me for that, and my Hb stays at a reasonable level now, between 11.2 to 12.0.

 

Before my renal failure I had the anemia of chronic disease, and my Hb would be around 8 or 9.

 

I hope you can get satisfactory treatment.

 

Warm hugs,

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Hey everybody!! I, too am anemic. It started pre-sclero. They thought it was "female" related so out went all of those pesky organs (BEST THING I EVER DID!!!!). Oh well, it didn't make a diference...multivit withiron now, in the beginning it was iron supplements. I am still borderline and have been told I have Anemia due to chronic disease. Hang in there!!


Peace :)

Barbara aka relicmom1

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Hi Erin

 

I've got issues with anaemia as well. Mine is to do with my kidney failure. Apparantly the kidney when not functioning correctly fails to produce a hormone called erythropoeitin which is the hormone that produces red blood cells. So now I have give myself an injection every week with the erythropoeitin to boost red blood cell production. I do feel a little better for it (i've only been on it for about a month).

 

Cheers

Monika.

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Hi Monika,

That is very interesting. I have not heard of this treatment before. Did the Dr. prescribe it for your kidney problems or specifically for the anemia? Does it increase your energy?

 

Thanks~


*WestCoast*

 

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Guest Sherrill

Hi Erin,

 

I have been on erythropoietin for 6 years now. This is only because of the anemia I have caused by my kidney failure. Erythropoietin, as Monika said, is a hormone produced by the kidneys, and of course when they don't work, neither does the erythropoietin. This hormone actually stimulates the bone marrow to produce the red blood cells.

 

Shortly after my kidneys failed I ended up in hospital 5 times in 15 weeks, with my Hb as low as 5! I needed 3 units of blood to bring it up each time, but in 3 weeks I was back again! Once I was started on the erythropoietin, EPO as it is known for short, my Hb slowly came back up, and I haven't needed a transfusion since.

 

However, when you are on EPO it slowly uses up your iron stores, (ferritin), and you periodically need an IV iron infusion to bring those up again. I have had several of these over the years.

 

But, EPO is a strong hormone and not to be used lightly. There is a recent warning from the FDA (see below) that it is being used too much, in too greater quantities, and without due regard to the risks. I was warned right from the start that when using it my Hb should not go above 12 (120 for Aust. NZ). If it did I ran the risk of strokes, heart attacks etc. as it makes the blood thicker. Some athletes use it illegally to increase the oxygen in their blood, and take a risk in doing this.

 

For me of course, it's been a life saver. Before it was discovered and manufactured, around the late 1980's, people with kidney failure had to have blood transfusions all the time, which didn't do them any good in the long run!

 

Just in case you're interested......... the genetically engineered hormone which is used for patients comes from Chinese hamsters' ovaries! It's very expensive to produce, and I think one injection can cost around $300 or more!

 

Here's a link to 2 items from the Dialysis webpage on www.sclero.org.

 

Anemia in Kidney Disease and Dialysis Anemia is common in people with kidney disease. Healthy kidneys produce a hormone called erythropoietin, or EPO, which stimulates the bone marrow to produce the proper number of red blood cells needed to carry oxygen to vital organs. Diseased kidneys, however, often do not make enough EPO. As a result, the bone marrow makes fewer red blood cells. If no other cause for EPO deficiency is found, it can be treated with a genetically engineered form of the hormone, which is usually injected under the skin two or three times a week. NIDDK. (Also see: Anemia)

 

Erythropoiesis-Stimulating Agents (ESAs): FDA Public Health Advisory. ESAs have shown a higher chance of serious and life-threatening side effects and greater number of deaths in patients treated with these agents. FDA Advisory, 03-09-07.

 

Hope this helps.

 

Warm hugs,

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