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Anyone out there suffer from Anemia? I have had FSGS since 1995 and ever since have had low hemoglobin. My doctor always tells me that she does not know why because my kidney function is too good to have such low hemoglobin. I currently am at 8.6 for hgb and feel so tired. I did have a little GI bleed at one time that we think was from all the years of medicine and it's effect on the stomach. Anybody else have this problem???
I have mild anemia and FSGS, MCD and NS. The anemia just showed up last month. Right now I am not sure about my HGB but I will check it out tonight.
I also have anemia that's unusually severe for my level of kidney function. But it's actually not all that uncommon for anemia to start in stage 2 or 3 when your kidney function is still relatively good.
After being checked out for other causes, I just started a course of IV iron (I know you posted on my other thread). If that doesn't get the numbers back up, we'll add EPO. Beyond feeling crappy, it turns out anemia is an independent risk factor for various bad things like cardiac complications of kidney disease...so I felt it was important to correct it one way or the other.
You DEFINITELY should be taking iron (IV or oral)! I started daily iron tabs (with Vit C) a couple of months ago and don't even need EPO to keep my hemoglobin up and my anemia down. See the other posts on anemia - good stuff there.....
(By the way msoko, you may want to get anoth Neph - anemia is common for FSGS and she should be more informed about treatments & consequesnces)
I suffered from anemia for nearly a year before adding weekly EPO shots to my daily 300 mg ferrous fumerate tablet. That was over three years ago and since then fatigue has been a thing of the past. I do notice though, that the day before I self-inject my energy level can be a bit on the low side.
Msoko, I was interested in your posting because my hemoglobin ran low before I was diagnosed with FSGS. The GP ran all sorts of test because she thought it was connected to my colon problems. Since my hemoglobin crashed two years ago, I have not had any more problems. I asked my neph about iron, calcium, vitamin supplements and he said no because labs did not indicate any supplements were needed. For over a year, my low hemoglobin was a mystery and of course, now I know it was the FSGS all along. When kidneys are not functing correctly, apparently they strip the red bloods from the blood and this causes the anemia. If your kidney function does not warrent the low hemoglobin, maybe it is coming from another cause.
Our daughter has been on oral iron for awhile now. It sure helps her not be so cranky and tired!! It is common in her FSGS and when treated makes you feel much better.
AmosB
have cronic anemia and take epo shots once a month and iron med daily. I am running out of shots and the hemo has to get back down to 26 to get more shots. Was wondering how low your anemia runs. I am on medicare and the dr. tells me it gets to 24 before they pay for a shot and he never has any. So far I have been able to get them from my secondary insurance. I am 73. Does anyone know where you can buy them cheap enough to afford them.
I suffered from bad amenia for years not realizing why I was so tired and weak all the time. Then I was diagnosed with Stage 3 FSGS this past August and realized it was linked to the Kidney Disease. I am taking 1 iron pill a day which brings me at the very low range of normal but I can physically feel that it's not enough. I'm currently 26yrs old and was active all through my childhood but I can't even remember what it feels like to have a normal energy level. So I am defiantly familiar with the low energy level and fatigue and unfortunately the iron pills just aren't enough.
I am in stage 4 and have never had problems with anaemia until a year ago when I started having severe bleeding because of fibroids and, well, peri-menopause. I just about flipped out when my neph put me on epo shots. I had a hysterectomy and was hoping that THAT would solve the anaemia problem, and it did. My numbers are now back to normal. I can't help but wonder if perhaps your anaemia may be due to menstrual bleeding instead of kidney disease. Anaemia is common in women of child bearing age, so might it be an idea to consider this possibility?
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