Discussions that mention prednisone

Anemia board


I am at my wits end with all hemotologist!!!! I am working on my second one, the 1st doctor I had his only concern was to see my spleen removed , but at least he had some life in him and for some reason when I saw him for my appt. I would get him fired up. So I thought I would keep my spleen and check out another hemo. and now the one I have now seems as thought he is bored with his patients? No one knows what brought on my anemia since Aug. 03, so I go to the doctors weekly have blood drawn hope my counts are up (which I am holding a 10) wait for my procrit shot and leave.

I think its time for some new test? Like maybe another cat scan? Ultra sound? Something to see if my spleen is enlarge or whatever! I understand anemia is a SLOW Progress, but I feel I am in Limbo!

I am being weaned of Prednisone which I CAN'T STAND! I have had every side effect there is on the stuff and I was only on 40mg. a day,you would think they would listen to me and maybe have tried something else lord knows I would complain about it every week.

Well next appt. is this Tuesday so we shall see what my counts are and I will complain so more and if I don't get any vibes from this no life doctor I will probably go back to my seach for another hemo.

Hmmmm feel alittle better now that I banged this message out on the computer keys.
I totally understand your frustration. I think our stories are very similar except that my doctor has only suggested a splenectomy if the prednisone stops working. That will be the next course of action for me if my hemoglobin starts dropping quickly again.

My current hemoglobin was 10.4 last week. I am going to the internist weekly to learn about my blood levels and see how the prednisone is working. I started at 100 mg/day, then down to 60 mg/day and am now being tapered off to 20 mg a day. I know what you mean about the side effects....I am starting to retain water like crazy and feel a lot of pressure around my eyes. Hungry, emotional, insomnia, etc. No fun.

From what I understand, the splenectomy is the next real option if prednisone doesn't work (according to my hemotologist). The other drugs can be pretty nasty and don't always work. The spleen just acts like filter to remove red blood cells....take away the spleen, you end up with more red blood cells. Of course, splenectomy is not a guaranteed fix...it's successful in 40-60% of cases.

I also have no known cause of the hemolytic anemia...that's not too unusual. From what I understand, almost half of people with hemolytic anemia don't know why their body started doing this.

Have you been tested for other autoimmune diseases (like lupus, rheumatoid arthritis, hypothyroidism, etc)? My doc told me that people with a tendency to have autoimmune disease (I have thyroid antibodies as well which has caused my hypothyroidism) will tend to develop other autoimmune diseases...autoimmune hemolytic anemia in this case. Just something to think about.

Some of the other things I'm looking into are dietary and lifestyle approaches to managing this disease. I know that stress, fatigue and poor diet will lead to more flare ups of any immune process. The theory is to keep the body in a less stressful situation and our immune system may not go into overdrive....meaning fewer blood cell antibodies around.

Anyway, I hope your venting session helped a little!!! Keep in touch to let me know how things are going.

Jackie
I was diagnosed with hemolytic anemia last month but I know that it's been going on since at least the end of July. From the last week of July onward I had extreme fatigue, shortness of breath, rapid pulse rate, headaches, and I could hear the pulse in my ears (very annoying). The doctor I talked to in August said that she couldn't see anything wrong with me and told me to check in with my family doctor if it didn't get better.

It didn't get any better and finally in October I went to see my family doc. (I had gone mini*golfing with my family and had to sit down after every hole....knew something was really wrong then!). Anyway, a quick blood test and within two hours I found out I was anemic. They thought it was the "usual" sources...low iron, low B12, low folate, pernicious anemia....etc. Finally, all tests came back normal except for things like bilirubin (my eyes were yellow at that point), and they couldn't type & cross my blood easily. Also, the blood slides showed evidence of hemolysis happening.

I see an internist who has consulted with a hemotologist throughout this case. The hemotologist is happy with the prednisone treatment. Only if it doesn't work will they consider a splenectomy. I've done some research and it sounds like a reasonable option. It's just that all the treatments for this are not nice. The prednisone definately has long term side effects and my doc has already told me that he expects to have me on it for another 5 to 7 months. The other drugs (like azathioprine, etc) have very unpleasant side effects.

Personally, I don't know what I'd do if the prednisone stops working. I went from hemoglobin levels of 6.3 to 7.2 to 9.9 to 10.4 in the past 3 weeks on the prednisone. But, I am being tapered now and I don't know if I'll get to 12.0 for a while.

I guess I'll make a decision when the time comes. I have been very careful with myself and trying not to borrow trouble yet. I am starting to do some research on more holistic approaches to this disease. I think I mentioned in the previous post that I need to address things like stress management and making sure I don't get fatigued....I'm a high school teacher and often am run ragged during the school year. I also plan to going to a naturopath or homeopath to look at dietary approaches to the disease.

Anyway, it's good to talk to another person about this disease. So many people haven't heard of it. Hopefully we won't have to consider comparing notes on our spleen removal!!!!

Cheers,
Jackie