Hello,
I was researching a few months ago, looking for something to try for our disease. I have refused taking oral medications, including steroids and methotrexate because I didn't want to risk systemic side effects. It occurred to me that maybe there was a way that we could try applying steroids topically. To my surprise, when I did an internet search for topical steroids and granulomatous mastitis, I found a collection of case studies that were completed in Turkey over the last 3 years. Their results were published at the end of 2014. I don't have the link to the study anymore, but I downloaded the file. You could probably find it by doing a similar search, but if not, if you send me your email address, I would be glad to share the file with you.
There were 11 patients included in the study. All were treated with topical steroids for 12 weeks. They reported no side effects from using the topical steroids. All of the patients seemed to have a favorable outcome, which may have been caused by the topical steroids.
I took the study to my doctor and told her that I wanted to try it, and she agreed. I used the topical steroid for one month. We used clobetasol cream, which is up to 600x stronger than over the counter hydrocortisone cream, just to give you perspective on how strong it is. We tried applying it twice a day every other day. Unfortunately, I started using it at a time when it was hard to tell whether or not it was helping. I already had 2 very large abscesses that were almost ready to burst through the skin when I started using it. After they burst through and started draining, I was only able to apply the cream to the areas of my breast that were not open, and there was so much going on with my breast that is was hard to tell whether the steroid was helping or not. When I followed up with my doctor after one month, we decided to stop the steroid in order to allow the breast to heal. Topical steroids can inhibit healing. I think it would be best to try this at time when you do not have abscesses; maybe when you have inflamed lumps without fluid.
It was a little problematic trying to follow and understand the pattern presented in the case study. Perhaps this was a little bit of a cultural/geographical difference, since this study was done in Turkey? The drug that they used is not exactly the same as what we have available in the United States, so my doctor consulted with a pharmacist and substituted what they thought would be most similar. Also, my doctor and I both found it confusing trying to understand exactly what dosage they were using, and how often. The way they described the dosing sounded a little strange; it sounded like maybe they used it 2 days a week, with one day in between and then 3 days off. We weren't entirely sure what they meant.
There are some concerns with high dose topical steroids. They can cause problems with the skin, and they are also absorbed systemically, and can effect hormones. If you take high-dose steroids for a long time (longer than 2 weeks), it is best to have lab testing to monitor whether or not they are causing hormonal problems. From what I understand, sometimes doctors are not aware of all the problems that can be caused by topical steroids (for example, a breast surgeon may not prescribe topical steroids frequently, and may not be as fluent in their use as a dermatologist would be), so my advice would be to read up about them yourself, and make sure that you are advocating for yourself, and that your doctor is aware of the potential problems.
Anyway, for now I am not using it, but I would definitely consider trying it again if my abscesses heal and I still have inflammation. Maybe it would help some of you? If nothing else, you could read the study, print a copy, and share it with your doctor. If you have tried it before, or if you end up trying it, I would love to hear how it works out for you.
Have any of you heard of this before?
Jennifer