Updated: Jun 30
It is important to keep in mind that biologics are not a cure; ensure your expectations are in line with what this treatment can offer. Biologics are intended for those with moderate-to-severe HS. Depending on the severity of your disease it can take anywhere from three to nine months and up to a year to see a difference or improvement and everyone responds differently.
Biologics are meant to decrease the severity of your HS. In some cases it can help eliminate seepage and decrease and or eliminate seepage from the areas that are tunneling. For those with moderate HS it may help shrink some of the tunneling, but it will not remove the tunnels. It may reduce abscesses that have been hanging around for years, and may even eliminate them all together. It will hopefully eliminate future flares in reoccurring areas as well as new flares, but keep in mind there is no guarantee you will be flare free or that you won't develop new flares while on this type of treatment.
It is very common for HS to get worse before it gets better. During your treatment your condition may also wax and wane (get better and worse), even if you've been on this for years. Hidradenitis is a systematic type illness more so known as an auto inflammatory illness, meaning you will still have bouts of inflammation or flares. It is important to remember that when things are going well and the flares seem under control, but then return, before you give up on this treatment, give it a little more time. It is also important to try not to stress over this process as stress can cause more flares.
Don’t Give Up Your Regimen
It is common when starting a new type of HS treatment that they abandon any other treatments or regimen they’ve been following. No matter what treatment you’re starting, continue to do everything you can to treat your HS. Don’t fall into the trap of becoming less diligent because you're on a new treatment. You still need to pay attention to your triggers and continue to address them as you have been. Continue what you have been doing topically, just like you did before. If you were on prescription topical creams, continue to do that. If you were getting steroid injections prior to treatment and still have stubborn abscesses while on a biologic, continue to get steroid injections.
Biologics can be life changing for many many people, but be careful not to fall into the trap of being less diligent about your HS because you started a new treatment. This disease must be treated internally, externally, emotionally, and mentally.
Immunity to a Biologic
There are times, depending on the severity of your HS, when Humira is not enough or stopped working. Hidradenitis has a keen way of getting used to or "immune" to treatments. This is not uncommon for inflammatory illnesses, especially autoinflammatory diseases. When and if this does happen, sometimes a combination of treatments are necessary. This could mean you add another biologic or possibly an immunosuppressant to the mix. The other option would be to stop Humira and try a completely different biologic or immunosuppressant, or combination thereof.
There is no one-size-fits-all treatment for HS. It takes diligence, some trial and error, and sometimes some creativity between you and your physician to figure out what works best for you and your disease.
Tips for staying healthy while on a biologic or immunosuppressant:
Maintain Good Hygiene
Make sure to wash your hands thoroughly and often. When washing, don't overdo it on the antibacterial soaps and hand sanitizers (it’s OK and good to be exposed to some germs).
Limit Contact with Sick People
When you are on a medication that weakens the immune system, it’s best to limit contact with people who are ill. Be sure to use precaution at places where there are several people and germs.
Care for Open Wounds
Reduce the risk of infection by thoroughly washing your hands before and after taking care of any cuts, wounds, lesions or abscesses (HS and non-HS). Keep wounds covered with a sanitary bandage and make sure to watch for proper healing.
Don’t Touch Your Face
Viruses and bacteria can easily enter the body through the eyes, nose, and mouth.
Practice Safe Food Preparation
Always wash your hands before and after handling food. Avoid eating raw eggs, unpasteurized milk, raw milk cheeses, raw meat, and raw unwashed fruits and vegetables. Make sure to cook raw meats and other temperature-sensitive foods to the proper temperature.
Plan Ahead Before Traveling
Be sure to pack face masks, hand sanitizer, and enough medicine to last the duration of your trip. Take extra precautions if you will be spending time in close proximity with other people who may be sick, such as on an airplane.
Take Care of Yourself
Overall well-being is important to maintaining good health and a healthy immune system. Drink plenty of water every day and eat a balanced, nutritious diet. Get a good night’s sleep. Reduce stress in your life. If you can’t remove the stress completely, find ways to manage it with yoga, journaling or music.
Signs of Infection
If you notice signs of infection such as cough or fever, notify your doctor right away.
Research: Paradoxical reactions under TNF-α blocking agents and other biological agents given for chronic immune-mediated diseases: An analytical and comprehensive overview
This is an awareness article for educational purposes only and is not intended to replace the advice of your doctor or other health care provider.
Written by Denise Panter-Fixsen
Edited by Brindley Kons