Im 24 and have just been diagnosed with Cyclical Neuropenia. Apparently this is down to one of my genes mutating and is very rare! I need to decide whether to start the growth injections, and my consultant has told me that there is a small risk of Luekemia so I'm obviously a bit concerned. Would be good to hear from anyone going through something similar.

HI. I am 26 y/o mother of a 7y/o boy. We both have Neutropenia. Ours is not cyclic but pretty similar in systems and sickness wise. Difference being is ours does not come in cycles. We just stay neutropenic. We take 1cc of GC-F (neupogen) injections daily.
If you would like to E-mail me feel free to cjbncjb@aol.com

Marie

I have Cyclical Neutropenia and have been on the injections (once a week) for a year now and can't believe the difference it has made to my life.

I hadn't realised how much energy the condition was sapping from me on a day-to-day basis.

My consultant was concerned about the risk of Luekemia but recent investigations that she found indicated that this has never occurred in people with Cyclical Neutropenia although it is a risk with other types of Neutropenia.

The only risk she pointed out was the danger of developing osteoporosis in later life. She recommended that I have a bone-scan when I am over forty and ensure that I eat lots of calcium rich foods and do lots of weight bearing exercise.

I hope this message helps with your decision making.

My daughter was diagnosed with severe neutropenia at 15 months. She has trouble gaining weight and the doctor ran blood tests and her ANC came back at 69. We saw the hematologist, did the blood draws, and he noticed a cyclic pattern, but her count never goes over 1000. He calls her an atypical cyclic neutropenic. She had a bone marrow biopsy done two weeks ago (she is now 20 months old). I think the hematologist is going to have us try the injections with her next time she gets sick (which actually doesn't seem to be very often, she just gets very very cranky and runs very low grade fevers every once in a while). Do the injections really help? It's hard to know what she may be feeling; we think we can tell when she is very low in ANC because she is very fussy, doesn't eat and runs slight fevers (around 100F). Can someone describe what they feel, being neutropenic? I would like to try and understand what she is going through so I can help.

Hi, I am 45 years old and was diagnosted with cyclic neutropenia 12 years ago, I have been pretty healthy, my main problem is fatigue. My doctors are not much help, they say cyclic neutropenia does not cause fatique. Recently my counts have changed, and there is a greater difference between the highs and lows, my last count was 400. Oddly I never get any fevers, I just feel like I have the flue, and I am very tired. I have done a lot with vitamins and herb over the years and quit because my hemotologist thought I was causing the neutropenia with the herbs. I have stopped them 3 months ago and have had 3 infections since. How is the energy level in people with neutropenia and any ideas why I do not get fevers?

Renee

I found this article interesting, I did try something like this, It did seem to work, but I quit.

[www.findarticles.com]


Hope its helpful

I found this article interesting, I did try something like this, It did seem to work, but I quit.

[www.findarticles.com]


Hope its helpful

Renee, I also have cyclica neutropenia, recently diagnosed, and never run even a normal temp. Lowest in past year was 91.9 F. I wondered whether this might have something to do with my hypothroid condition. Do you happen to have thyroid probs as well? It is hard to understand why so many doctors don't believe their patients. How can they know they we aren't tired? I hope you will return to your natural remedies since you seemed to have good results. Also, it seems important to maintain healthy eating habits and exercise as often as we feel able. Are you taking G-CSF? I am asking my doctor to let me try it. Again, hard to believe that a physician would withhold available treatment.

Frustrating illness, frustrating circumstance. Keep the faith!

patti111

I am 52 and have been neutropenic for 7 years. This is a result of felty syndrome which is a side effect of rheumatoid arthritis. So basically, my body kills my white cells. For the past 5 years University of Michigan doctors give me neuprogen injections weekly. They keep my count above 1,000 if i take them regularly, thus avoiding serious infections, and i have less fatigue. I hope this helps you!