I went through something similar to you. I was on prednisone for a year. The first time we tried to taper the disease came back, The second time we tried to taper, we added methotrexate. I very much disliked that drug (the side effect of feeling like I had the flu once a week). I never got a chance to see if tapering slowly with methotrexate would really work, because when the year was up I was taken off all meds. (Tricky story here - my rheumotologist thought that maybe he was barking up the wrong tree, maybe there was an infectious agent in there, and he wanted to see if the disease would come back enough so we could take more tests.) Well, while the disease was coming back, I found a website that described healing clay and I used it for a year and basically cured myself. I have posted many times about the clay on this site. If I had it to do all over again, because my breast was really really bad before I started any therapy, I would take prednisone and use clay at the same time and as I was tapering off prednisone, I would use the clay for as long as it took (years if necessary) to feel like it was not coming back. My disease started in summer of 2009, I started treatment in fall of 2009, I started the clay in the beginning of 2011 and I am still using it at night.
The clay is calcium bentonite clay - inexpensive. There are others in this discussion group who have used methotraxate. I hope they chime in and let you know whether it did anything. Good luck!
Thanks for getting back to me. I will look for your posts on the clay here. I am an on the decrease and can see and feel that I will be managing a flare up in the next weeks.
My husband and I decided no more Prednisone. Since I am part of a group of Doctors who are studying the disease I do not want to throw their work, as #1 it took me a long time to get to them and #2 I hope that whatever they try with me and learn from me will help other women. But I can't do that at that paying my health to Presdnisone. I will most likely try the Methotrexate but I will look into your clay as well. I have seen your posts and just need to find my way back to them.
Thanks again Amy!
I just started using methotrexate this weekend. I am supposed to take 10mg once a week for two weeks, then 15mgs once a week for two weeks, and then 20mgs for two years! I am wondering what dosages others are taking. To be honest, 10 mgs made me feel quite sick and I am wondering how I am going to be able to handle 20mgs. Is 20mgs excessive? Did a smaller dose do the trick for anyone else? I am an average size person (5'6, 120 pounds).
I find the doses used to treat IGM quite frankly mind-blowing in comparison to other prescriptions for these medications that I hear about. I cannot find anyone else who takes as much predinisone as we do for any other ailment. Also the duration that we take these medications is absolutely frightening. I now not only deal with the IGM but the ramifications of what the steroids are doing to the rest of my body. My bones, my eyes, my kidneys. You would think that avoiding steroids after so much would be a necessary step for doctors to take. Even if it means pain or disability for the patient.
I know personally though, that once I hit 30mg in my decrease regiment from 60mg, I start to get the inflammation and other symptoms back. i just don't function without it. Double-edged sword, I guess.
Keep up letting us know how you are doing on the Methotrexate. Especially if the dose changes. Methotrexate is kind of my hope drug right now but I do not want to exchange one demon for another.
Thanks for sharing
Unfortunately, neither predinsone or methotrexate are fun choices. I had a long discussion with my doctors and it came down to this: They thought being on prednisone long term was worse for the body than being on methotrexate long term (meaning two years).
The advantages of prednisone is that it helps make the symptoms of IGM more bearable almost immediately. However, they thought the prednisone did very little to actually "cure" the problem. It basically helps make you more comfortable while you wait the disease out.
Methotrexate, they said, does more to address the underlying problem. They shared with me one very limited study and explained the theory of how it works. The trouble is methotrexate takes two months to really take effect.
At the moment, I am on prednisone (40 mgs) and methotrexate (10 mgs, working my way up to 20mgs). I will start tapering off of the prednisone in one month, as the methotrexate ramps up.
Neither drug is a very fun option. The good news is that if I really hate the methotrexate, I can just stop. No need to taper off of it like prednisone. That's why I reluctantly decided to give methotrexate a try. Take my second dose tomorrow.
well, I have thought about posting while I was struggling with this thing and never did. I googled it today and found your post. Don't know why it stuck me to post after over a year of this crazy thing.
I would like to say that I hated the steriods and when I dosed down it came back. I was told to go back to what was working for me. I went back and dosed down slowly. I didn't have a good dr. monitoring me or anyone who had dealt with this before. I was scared to dose down and would have to go back and check my notes as I was updating the dr.'s as to what I was doing. Scary. I have to say that I was juicing, eating raw garlic( and didn't care if it smelled. Taking the vitamin D's as well as omega3's,.I tried tumeric and didn't like the way it made me feel.
I was told I would never be normal and I asked the Dr. to define normal. I have to say that I was also taking antibiotics for an infection, and then a cough but it seemed that the combination helped. I have been off Steriods since December and have the Dr.'s asking me what I am doing.
The funny thing is that I had to be careful with any excercise or chest/arm movements as it could trigger things.
Dr.s to not get much into the natural part of it but I believed it helped. Juicing brocoli, spinich, garlic, tomatoes, apples, oranges and everything.
I think going down extremely slowly was key. I would cut my own pills in half, to half the dose.
My Dr.'s that delivered my son and others where saying chemo.the metho.drug. There are soo many things that I did, but what ever it was it worked and there is hope. That is my point. I was even walking and the movement from my arm use to bug me. I have come such a long way.
Everyone going through this has been through alot. You know your body and the Dr.s I have seen didn't know anything about it. Saying my prayers and trying not to stress. The steriods where horrible and I think if it did come back I would have thought about the chemo option. But dropping the dose very very slowly as well as the extra stuff I think was key.
I could go on and on. But just wanted to say I am drug free, its been over a year since this thing started, you can get better and things change.