Topical Steroid Treatment

[eluriajen]

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

[luvmy4bbs]

Hello
I was diagnosed with GM on May....I was pregnant at the time and found a lump on my breast. My obgyn was scared it might be breast cancer. He initially treated me with antibiotics because he thought it was mastitis. But after it not working he revered me to a breast surgeon. I delivered my baby and tried breastfeeding,but it seemed to activate my breast. I have two abses on my breast that are draining pus. My breast surgeon suggested surgery to remove that lump and some of the scared tissue. She wants to send all the tissue to the lab and make sure theirs nothing funny brewing in it. I'm scared thattut might continue to flare up, or worse not heal right. I have been to so many doctors and it seems like a lot of them have never seen this before.

[Sallycinammon]

Hi Jennifer,  I was diagnosed with IGM several weeks ago and have now been referred to a nearby hospital where a couple of Doctors have also had success with using steroids, but they inject them into the Breast ( rather than using creams).  They have treated 18 women over the last few years and had very good results with all.  I had my first injection last Friday and am due back in on 10th Aug for another.  They think it might take 4/5 treatments to clear things up.  The two doctors are in the process of writing a report on their work to share with other medical professionals and do seem to think they have found a really successful way of managing IGM.  I will report back to let people know how I get on.  I gave been ill since Feb 15 but only recently diagnosed with IGM but am very hopeful that I am finally on the right track with this treatment.  I have read that Turkish report you mentioned too - the results do look very promising.  I hope your treatment is working out well for you.

Best,

Sal