It’s no secret among the pemphigus and pemphigoid (P/P) community that treatments to help these rare diseases are not always ideal. It’s also common for patients and caregivers to reach out to the IPPF seeking advice on holistic/natural/eastern medicines to treat P/P before the typically used western medicines recommended by physicians.
The IPPF understands that the potential side effects of steroids, immunosuppressants, and biologics can be very concerning. You already have a lot going on with your body and immune system. Why subject your immune system to these medications if you don’t have to?
The IPPF is not against patients trying holistic or more natural remedies. We truly want P/P patients to get into remission by whatever means work for them. However, you need to know one very important fact before trying any natural treatments.
Many natural or holistic treatments work by “boosting” or “enhancing” your immune system. When you have an autoimmune disease like pemphigus or pemphigoid, that means you have a compromised immune system. Therefore, if you “boost” or “enhance” your immune system with an active autoimmune disease, you may be putting yourself at risk of “boosting” or “enhancing” your disease activity.
The IPPF highly recommends that you do your research before you try any natural or holistic treatments. Make sure the treatment you are interested in won’t boost your immune system. The IPPF also recommends that you consult your doctor before trying any treatments. While your intention of trying this treatment will be to make you healthier and improve your disease activity, you may be inadvertently making your disease worse. That is the last thing we want for you, and we know it’s the last thing you would want for yourself.
Therefore, if you “boost” or “enhance” your immune system with an active autoimmune disease, you may be putting yourself at risk of “boosting” or “enhancing” your disease activity.
The IPPF doesn’t want to discourage you from trying something that could alleviate your disease symptoms or make you feel more comfortable. We just want you to thoroughly research the product and consult your doctor before doing so.
Going off of prescribed medication in order to try a holistic treatment is not recommended. Patients who go off of treatments to try natural therapies without consulting their doctors can put themselves in a potentially dangerous situation. Let your physician be on this journey with you.
The IPPF does recommend you take your vitamins, exercise, and eat a balanced diet. We also recommend consulting your doctor about ALL treatments that could help treat your pemphigus or pemphigoid.