For most small cuts and scrapes, you may not need to infuse factor into your blood. Standard first aid works fine. Clean the cut, apply pressure and cover with a Band-Aid. Easy peasy. You only need factor infusions for things like deep cuts, joint or muscle bleeds, surgery or major trauma1. We’ll deal with that below.
Most minor injuries are typically handled with non-medical treatments and the R.I.C.E. protocol. That’s REST, ICE, COMPRESSION and ELEVATION2.
Remember and you’ll usually be good to go.
Pain Management
When it comes to managing the day-to-day pain, it starts with a good discussion with your doctor. And be ready to discuss a few things, like: your pain in full, what makes it better or worse and how it affects your life.
One way to control pain is with prescription medicine. You and your doctor could consider pain medications, adjuvant therapies, nerve blocks or transcutaneous electrical nerve stimulation. These regimens all have their pros and cons, so be sure to ask a lot of questions3.
Another option is physical treatment at the site of the pain. This includes therapies like R.I.C.E., physical therapy, massage, splints, surgery and topical ointments4.
However, medication and on-the-spot treatment aren’t the end-all and be-all. Psychological control of pain through exercise and yoga, mindful meditation, and cognitive reframing are ways to use the power of your brain to channel your energy away from pain and towards something positive5.
Whatever you do, any or all, work with your health care professional to choose pain management options that work on your terms.
Pain medications to avoid
Pain medications all have pros and cons. You should speak with your doctor if you are in pain to see what medications might be appropriate for you.
Aspirin. Don't recommend it. Acetylsalicylic acid can interfere with clotting. Also, check your over-the-counter medications, because many household medicines have aspirin6. Check the label, yo.
Acetaminophen can be considered for minor pain relief. Follow the directions carefully and only take the recommended dosage. As always if you have questions, talk with your doctor or HTC6.
Infusion 101
An infusion is where clotting factor is given intravenously, or infused directly into the vein. A powder form of your missing clotting factor is mixed with sterile water and inserted into a vein either on your hand or arm through a butterfly needle. How much factor you will need depends on a number of variables7.
If you can't infuse yourself at home, you can go to a hemophilia treatment center (HTC) or doctor's office. Your caregiver can also learn how to do home infusions from a healthcare professional or hemophilia treatment center. Even if you don't do home infusions, you should always have factor on hand in case of emergency. If you're going away from home for a time, it's probably good to have some with you then, too8.
Possible complications with factor replacement
When some people infuse, or take factor treatment, their immune system makes certain proteins called inhibitors. These inhibitors are antibodies that fight the factor therapy, treating it like a foreign substance. As such, inhibitors interfere with the infused factor and prevent clotting. If you suspect this, contact your Hemophilia Treatment Center immediately9. They’ll help you out.
These types of inhibitors happen in about 20-30% of hemophilia A patients, and are reported in up to 50% of previously untreated patients9. If you’re in that group, make sure to talk with your HTC about special factor treatments.
Prophylaxis and On-Demand
There’s two ways to take your factor treatment: prophylaxis and on-demand.
Prophylaxis
Prophylaxis is a fancy word for taking your treatments on a regular schedule. Like say every Tuesday after tacos. The thing to remember about Prophylaxis is consistency. With this course of action, you’ll be pro-active and infuse in timed intervals7.
On-demand
While Prophylaxis treatment is given on a regular basis to proactively reduce bleeds, On-Demand treatment is used as soon as possible after an injury or bleed7.
Precautions for invasive procedures
If you have an invasive procedure, you should know a few things.
More often than not, circumcision is when your parents learn you have hemophilia. Makes sense, right? Sometimes, the blood loss is so much that it requires transfusion, while others suffer no complications. But that’s usually when your folks find out6.
Use your head when it’s time for invasive procedures. For example, get all of your immunizations, even though this might bruise a little. Talk to your HTC about the best way to go about this4.
Tattoos and body piercings are invasive procedures and are potentially dangerous in patients with hemophilia. If you’re thinking about either, talk to your HTC or doctor first. Then pick a place that is licensed, uses clean instruments and uses dyes only once4,6. And, if you’re getting a tattoo, get one you won’t regret when you’re 50.
Pro tip: in scheduling surgical procedures, book it early in the day and early in the week. This way if you need lab and blood bank support, they are more likely to be available4.
1 World Federation of Hemophilia. Guidelines for the Management of Hemophilia. 2nd ed. 2012. http://www1.wfh.org/publications/files/pdf-1472.pdf. Accessed February 25, 2015.
2 National Hemophilia Foundation. Playing it Safe. https://www.hemophilia.org/sites/default/files/document/files/Playing-It-Safe.pdf. Accessed June 15, 2016.
3 World Federation on Hemophilia. Inhibitors in Hemophilia: A Primer. 4th ed. April 2008.http://www1.wfh.org/publication/files/pdf-1122.pdf.Accessed June 14, 2016.
4 National Hemophilia Foundation. Caring for Your Child With Hemophilia. 2001.
5 Blanchette VS, Breakey VR. Revel-Vilk S, eds. SickKids Handbook of Pediatric Thrombosis and Hemostasis. Basel, Switzerland: Karger Publishing; 2013.
6 Steps for Living. Pain Management.https://stepsforliving.hemophilia.org/step-out/non-factor-treatment/pain-management#otc-pain-relievers. Accessed September 29, 2016
7 World Health Organization [website].http://www.who.int/cancer/palliative/painladder/en. Accessed June 14, 2016.
8 Witkop M et al. Haemophilia. 2012;18(3):e115-e119.
9 Mindful [website].http://www.mindful.org/mindfulness-practice/mindfulness-and-awareness/five-steps-to-mindfulness. Accessed June 14, 2016.
10 National Hemophilia Foundation. Parent FAQ. http://www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx?menuid=197&contentid=62&rptname=bleeding. Accessed June 14, 2016.
