Frequently Asked Questions
What is the registry?
The ‘registry’ is also known as the Severe Chronic Neutropenia International Registry (SCNIR). The SCNIR is a global organization dedicated to finding the causes, consequences and best treatments for severe chronic neutropenia (SCN). The SCNIR opened in 1994 after researchers discovered that the hematopoietic growth factor called granulocyte colony stimulating factor (G-CSF) is an effective treatment for SCN. The SCNIR and National Neutropenia Network has a great partnership; however, we are two separate organizations. The SCNIR website also has valuable in formation. The mission of the Severe Chronic Neutropenia International Registry’s (SCNIR) is to establish a global database of treatment and disease-related outcomes for those diagnosed with SCN. Collection of this information will lead to improved medical care and is used for research to determine the causes of Neutropenia. The SCNIR was established in 1994 to monitor the clinical course, treatment, and disease outcomes in patients with severe chronic Neutropenia (SCN). The Registry has the largest collection of long-term data on patients with this condition in the world. Participation in the Registry benefits patients, their families and the physicians who treat them by providing the most up to date information to them on the natural history of SCN and its treatment options. It is important for patients and families to register with both organizations, as they do not share registration information with each other.
The mission of the National Neutropenia Network is to promote awareness, education, and research, and to provide a support system for patients with severe chronic neutropenia (SCN) and their families through a national resource network.
Should individuals with neutropenia receive the COVID vaccine(s)?
Yes, the experts we work with recommend individuals with neutropenia receive the vaccine so they can build antibodies. Individuals with Neutropenia should get vaccinated and should respond to the vaccine. If you have neutropenia and are not vaccinated you are at far greater risk of serious and even fatal pneumonia if you get COVID-19 infection. (we can then include the links to the two newsletter articles that you have done about COVID/vaccinations).
David C Dale MD
Individuals should take the first vaccine that is offered to them and follow the standard CDC guidelines for those who have received the COVID-19 vaccine If they are already observing additional precautions because of neutropenia, those can be maintained. The full description of what the experts said is in our winter newsletter:
What other GSCF or neutrophil boosting drugs are available besides Neupogen? When should an individual try another medication?
Several pharmaceutical companies manufacture and sell G-CSF under their own brand name. Neupogen is the best known and oldest. All have essentially the same effects. There are “long-acting G-CSF the original drug is call Neulasta. It is not easy to use for severe chronic neutropenia and may cause excessively high counts. So the SCNIR does not recommend using it except in very special circumstances. It is used primarily for patients getting cancer chemotherapy. G-CSF is the only approved drug for treating chronic neutropenia. GM-CSF has been used rarely and experimentally but tends to have more severe side effects. No other biological stimulants are proven to be effective.
If your doctor finds you do not respond to G-CSF or you have excessive side effect, you should ask your doctor to consult with the SCNIR or other experts.
David C. Dale, MD
What are the side effects of using Neupogen for a long period of time?
The most common long term side effect is bone pain, which can generally be ameliorated by adjusting dose and schedule (e.g. smaller doses more often). Many patients experience fatigue, but that is usually less on Neupogen than with untreated neutropenia. There is some evidence, still not definitive, of an association with osteopenia (low bone density), so it is worthwhile checking bone density. The long list of other side effects that appear online are either quite rare or relate to its use in cancer patients, who have many other reasons to have side effects not directly related to Neupogen.
Peter Newburger, MD
What recommend any specific dental hygiene tips for those with chronic neutropenia?
My principal recommendation is FAITHFULNESS! Good hygiene means cleaning your teeth every day, flossing and seeing a hygienist several times per year.
David C. Dale, MD
What is Magic Mouthwash?
A non-medical professional can make their own ‘Magic Mouthwash’ by combining equal parts Mylanta and liquid Benadryl. Swish and then spit every 4-6 hours as needed. This can help soothe a sore throat and/or a sore mouth that may have mouth sores. Magic Mouthwash that contains an antibiotic will need a prescription from a doctor. Either product should be kept refrigerated. Please note: recipes from pharmacies/physicians do vary.
Do I need to see a hematologist every year?
The standard of care is to have blood counts at least every 3-6 months and a hematologist visit yearly. That is common practice, but has no specific scientific evidence behind it. It makes sense to maintain a relationship with the hematologist in case of some adverse events or evolution of the disease. However, the patient, as an adult, is of course free to do otherwise.
Peter Newburger, MD
I have neutropenia. When I am sick my white blood cell count goes into the “normal” range. I am repeatedly told my WBC count is completely normal and I am not sick.
This sounds like chronic benign (idiopathic) neutropenia. In fact, although this is a diagnosis, it is benign (not harmful), as the name indicates. That means it does not entail an increased risk of infection, so it does not require any special treatment or precautions. That’s probably what the doctors have meant by “not sick.” Of course, anyone who is ill should receive medical attention for the illness, whatever the neutrophil count.
Peter Newburger, MD
Please note: this page is under development and questions & answers will be posted as they become available. Thank you for your patience. If you have a question that you believe should be on our FAQ page, please contact us. Thank you.