I have had my diagnosis for quite some time and it has taken me a while to get to a group of doctors who have actually treated others with this illness. I have been on prednisone for about 17 months now without interruption. I am now dealing with the side effects of the medicine that treated me, allowed me to keep my job and take care of my family for the last year and a half.
I am undergoing some tests and then the doctors have a plan to try methotrexate to control this disease.
Who is using methotrexate now? Who is it working for you? Am I possibly going from the frying pan into the fire moving towards methotrexate as a treatment?
I know everyone responds differently to these medications and that everyone's experience with this illness is also different, but I was wondering how women are doing with this other medicine.
My husband and I are very concerned about the steroids and have made the decision that we will not return to them once I have finished decreasing this round. We are willing to try the methotrexate but do not want to have to deal with similar health fallout from such a strong medication.
What are the experiences of the women here with methotrexate?
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.
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.
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.
So I just finished three weeks on Methotrexate (at 15 mgs now). I am happy to say that the first week was the worst. Since then, it honestly has not been that bad. I definitely prefer methotrexate over prednisone (in terms of how if makes me feel). I take it once a week on Saturdays. I do 7.5 mgs on Saturday morning at 8 a.m. and then 7.5 mgs at 8 p.m. I am able to sleep through the night soundly. On Sunday, I feel like I have a little hangover, but nothing terrible.
Except for that first week, I am still able to have fun and be active with my kids on the weekends. I am completely fine by Monday morning when I head off to work. Overall, methotrexate is much easier than I thought it would be . . . so far. :)
thanks for letting us know how you are doing. I have heard people feel like they have the flu when they first take it and then the feeling goes away in about a day.
Let us know how you are doing. in the long haul. Crossing my fingers for you!
I just finished nine weeks on Methotrexate and it is starting to take effect. (My doctor told me it would take 8 weeks to kick in.) The lump is much smaller now and not as sensitive. It seems like I am moving in the right direction!
I am taking 20 mgs of Methotrexate and it is tolerable. I sometimes feel a little sick to my stomach the day after I take it, but nothing terrible. I can definitely handle it, if it controls the IGM.
I am just waiting now for the lump to go away completely and then I will start tapering of the prednisone. That day cannot come soon enough. I really do not like the way prednisone makes me feel. I feel like I have not slept since I started taking it 2.5 months ago.
I am also using the clay occasionally and taking some vitamins (Omega 3s, Vitamin D3 and Turmeric).
Thanks for keeping us updated. I am crossing my fingers for you that the you get off that prednisone and can manage it alone with the methotrexate. That is my goal too.
I have been on this prednisone non-stop for over a year and a half. The side effects are certainly awful.
The clay definitely makes it feel better while I am using it. I really can't say whether it is helping to heal it. I am trying so many things that it is tough to know. I don't think it is hurting though. :)
Thank you for your response.
I find it interesting that you talk about exercise and arm movements causing problems and flare ups. I have had a sprained ankle, tooth pulling and even a mamogram precipitate a flare up. I was convinced that trauma caused flare ups. But also thought I was crazy for thinking this.
I also took care of very sick parents for years (while holding a full time job and having a small child) prior to this condition appearing.
Does it come about from trauma or stress?
I also find incredibly hopeful that you have been drug and flare up free for over a year. I am so happy for you and have a little more hope myself to try more things to help myself.
Take care and thank you for taking the time for sharing. It was most worthwhile for me to read your post. I am a little more hopeful now thats to it!
How did you find the clinical trial? I am looking for one now and I don't know where to begin besides contacting doctors who have conducted past studies. How did you find a current trial? I have been going through this since 2009, with symptoms appearing in 2008. I am 28 years old. I need to see a specialist as I've primarily seen surgeons due to flare ups requiring emergency interventions. I saw a specialist when this first arose while I was living in Spain, but have not since then. Has anyone seen a specialist in North Carolina? Oncologist or rheumatologist?
I wanted to update everyone on my journey with methotrexate. So I was on it for 8 months. I had absolutely no symptoms during that time. THEN, I started losing my hair at a rapid pace, so I stopped taking it. Three weeks later, I had a mass in one breast. :(
I am at the one year mark with this disease . . . I was hoping I could go off the drugs and be back to normal.
I am using the clay now and eating an anti-imflamitory diet. I may go back on methotrexate again if this doesn't get better in a few months.
I recently went to my dr and they want to put me on methotrexate in 5 months from now if it doesn't get better. I've had a hard mass but two days ago I felt a little hard lump ugh I think it's probably an abscess and my skin by the lump is turning a little reddish :( my dr told me if I take that drug I prob won't be able to have another baby anytime soon because of the side effects. Now I'm scared that u have lost your hair while taking that drug I already have thin hair as it is. Please let me know how u are doing now.
My mother in law takes methotrexate for a different condition and her hair really thinned out too.
I recently saw a rheumatologist, he ran some tests to check if I had any other issues going on. I'm supposed to check in with him tomorrow. He said he was going to do some research regarding treatment/medication. I already told him I don't really want to take methotrexate.
I'm curious if anyone healed without taking these drugs? If you did, please let us know. From what I read, everyone relapses when getting off the medication.
I, like many, have been on and off steroids (prednisone) for years for my GM. Short bursts, long high dosages, low dosages, everything for anywhere from weeks to literal months or a year at a time. I did Methotrexate a couple years ago, and it didn't do anything differently than the Prednisone did, if that. Most recently I saw an rhm doctor who was hesitant to say the least about putting me back on Methotrexate, considering the Prednisone eventually doesn't "solve" GM but more so lessons the side-effects of a flare up (the swelling) and can "shrink" down the area...
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