Living with ITP


Just as its name is difficult to pronounce, immune thrombocytopenia (ITP) can be even harder to live with.

ITP can affect both children and adults. And, those living with ITP experience a roller coaster of physical and emotional challenges as they try to monitor platelet counts, balance treatment side effects and manage the fear and reality of relapse.

The good news is there are steps you can take to help minimize some of the most common challenges ITP presents and improve your overall quality of life.


Improve Fatigue

Many people with ITP and other autoimmune diseases feel tired much of the time.1,2,3 There are several reasons why those with ITP may experience fatigue, including an iron deficiency and anemia. Persons with ITP can often have other autoimmune diseases, such as thyroid disease, or have an underlying cause for the condition such as infection.

Some things you can do to boost your energy include:


Stop Bleeding

One of the scariest things about having ITP is the possibility of uncontrolled bleeding, particularly from your nose or gums. Some recommendations that can help you in an emergency include:

  • Carrying the medications aminocaproic acid (Amicar®) or tranexamic acid (Cyklokapron®) to help prevent and reduce bleeding. Both agents help stabilize clots and decrease bleeding. Ask your doctor if either of these medications would be helpful to take before dental visits and after, if there is continued bleeding.
  • Keeping over the counter nosebleed treatments on hand.
  • Keep ahead of blood stains on clothing by dousing the spots with hydrogen peroxide; it makes the blood disappear and doesn't seem to harm the fabric.
  • Salt pork or bacon has also been used to stop nosebleeds.6


Take Care of Your Caregiver

A big part of feeling better with ITP is having a caregiver who cares. But, caregivers need attention, too. Caregiver burnout is real and can lead to chronic stress, fatigue, insomnia, anxiety, depression, addiction and chronic health issues including heart disease, Type 2 diabetes and stroke.

Caregivers can get helpful support and guidance from PDSA experts and the following national organizations:


Wear Medical Alert Jewelry

You can stay safe and in style by wearing medical alert jewelry. Some resources to help you alert paramedics and others of your medical condition include:

(These links are provided as a public service and do not imply endorsement or support of any product, program or organization. The information on this website is provided for educational purposes only. Consult a healthcare provider concerning your particular condition.)


Cope with Corticosteroids

Corticosteroids, such as prednisone can have damaging effects and cause many problems for people with ITP.5 However, there are things you can do to lesson side effects including weight gain, muscle loss, bone loss and mood swings associated with prednisone use. Coping with Prednisone can help guide you to a healthier life while taking steroids or after you have stopped.


Laughter is the Best Medicine

Comedian Rocky LaPorte kept us in stitches at the PDSA 10th anniversary party in Chicago. Now hear excerpts from his new CD or order it online.


References

1. "How Inflammatory Disease Cause Fatigue." Medical News Today. 19 Feb 2009. http://www.medicalnewstoday.com/printerfriendlynews.php?newsid=139443

2. Newton JL et al. “Fatigue in adult patients with primary immune thrombocytopenia.” Eur J Haematol. 2011 May;86(5):420-9. http://www.ncbi.nlm.nih.gov/pubmed/21323737

3. Blatt J et al. “Fatigue as marker of thrombocytopenia in childhood idiopathic thrombocytopenic purpura.” Pediatr Hematol Oncol. 2010 Feb;27(1):65-7. http://www.ncbi.nlm.nih.gov/pubmed/20121557

4.Snyder CF et al. “Health-related quality of life of immune thrombocytopenic purpura patients: results from a web-based survey. “ Curr Med Res Opin. 2008 Oct;24(10):2767-76. http://www.ncbi.nlm.nih.gov/pubmed/18715526

5. Berti D et al. “Impact of corticosteroid-related symptoms in patients with immune thrombocytopenic purpura: results of a survey of 985 patients.” Clin Ther. 2008 Aug;30(8):1540-52. http://www.ncbi.nlm.nih.gov/pubmed/18803995

6. Humphreys I, et al. “Nasal packing with strips of cured pork as treatment for uncontrollable epistaxis in a patient with Glanzmann thrombasthenia.” Ann Otol Rhinol Laryngol. 2011 Nov;120(11):732 http://www.ncbi.nlm.nih.gov/pubmed/22224315

 

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