Duration of Methotrexate treatments

[SherpaTat]

I am currently on 20 MG of methotrexate per week and 5MG of predinsone daily, which has tapered down from 60MG daily.
I have been on these drugs since August.
If you are taking methotrexate how long have you been on it?

[Pandora1962]

Hi again everyone. I had an apt with my Rheumy on Thursday. He is thrilled. He said that he went to a conference and someone presented on Granulomatous Mastitis. He was able to smile and listen with interest. The presented case was believed to be related to Wagners Syndrome (or something that sounded like that to me). He is testing me for some levels of I am not sure what to compare to the presented case.
Anyway, we discussed the drugs I am on. For 4 more months I will continue with the Methotrexate as is, then we will slowly wean.
The plaquenil is the interesting drug for me. Never have any of you mentioned this drug. However, he claims it is a marvelously safe drug that is used to moderate many granualomatous conditions. He treats several granualomatous conditions with it and is so pleased with it. For a girl that never heard the word Granualoma until she got mastitis, I found this facinating.
You all might just want to start asking your doctors about this drug.
My bottel says "Hydroxychloroquine Sulfate 200mg" Generic for: Plaquenil 200mg.
I noticed I spelled it wrong above. Anyway....have fun looking that all up.
Mary

[Red11483]

I have been on methotrexate since March at first with prednisone then dosed off prednisone through  August and upped the methotrexate to five pills a week. I have hair thinning and some nausea but its manageable.  My abscesses are less frequent from weekly at my worst to almost 11 weeks now bit I feel I'm getting a new one deeper in the tissue currently.  But overall I feel its helping my rheumatologist is thinking about another year on it but it depends on my body and what I want he says. Anyway compared to my GM at  its worst I am a fan of it and the benefits outweigh the side effects for me but its a personal decision.

[JoJo45]

Hi Pandora:

SO, so happy to hear that your breast is healing and you are feeling relatively well.

I have followed your story through your posts (thanks for sharing and posting so much faithfully), especially when I was sick and out of the loop for some time this summer and fall.  It is sincerely appreciated by me and I am sure many of the members of the forum.

You have been through it all and again, so thrilled to hear of your healing.

Best wishes for continued positive improvements.

Cheers, Jo

[Pandora1962]

Hi everyone, I got booted out of the system somehow, and never made work of resetting my password etc. till now. I see my Rheumatologist next week Thursday. I take 15 mg of Methotrexate (6 tabs) once a week. It is combined with a daily doses of Folic Acid, vitamin C and 400 mg of Plaquinenil. As of October 31 I am completely off the Prednisone. As near as I can tell I have absolutely no side effects. I do get extremely sleepy around 10 at night now, but I choose to believe that is an ABCENSE of a side effect from Prednisone. My hair seems dry, and it may be shedding more than usual...on the other hand, winter is approaching and I am almost 50. It is not a lot, so I am not concerned. As far as the GM goes, my wounds are healed up. I still feel one small bead of a lump where my last abcess was...but that seems to be all. That is so much smaller than it had been, and I am hopeing in time it will be gone completely. Surface scars remain from all the incisions etc...but the shape and texture are all very "normal." So, after 11 months of dealing with this, I am hopeful that the end is in sight. I know he wants me on the drugs for several months yet...but with no side-effects, I am pretty ok with this. Also, the drugs are SOOOO much cheaper than trips to the surgeon for draining. Anyway, you asked...and I am doing really good.

[Amy669]

Hi.  I was on prednisone for a year.  As I tapered off, I was on methotrexate for a number of months.  When I got to a low dose of prednisone, I started to get a bit worse.  My rheumatologist said: You may have to be on methotrexate for the rest of your life.  The surgeon said: for the rest of your life?  You can't do that.  The body can't take that.  Better to cut the breast off.
My rheumatologist took me off all the meds (probably because he didn't want me on prednisone for more than a year).  As the disease started to come back again slowly, I started treating with healing clay and now I am OK.  For almost a year of using clay, no more abscesses.
The methotrexate gave me nasty symptoms.  I felt like I had the flu one evening a week.  I had some dizziness in the beginning, but it went away after a while.

[SherpaTat]

I have had abscesses since April of this year, but was not diagnosed until late July.  I have been on the meds since then.  The methotrexate is OK.  I take it once per week and feel very sleepy, dizzy and nauseus for about 24 hours afterwards.  I am losing some hair.  My doctor tells me it would be OK to stop the methotrexate suddenly, but not the prednisone.  I have been slowly tapering off the prednisone...I really hated being on that drug.  I barely slept at all while on high dosages.  I would get up every day by 2am, and obviously that really affected everything else.  
I am still getting the abscesses, but at a slower rate.  I am trying to decide about getting a double mastectomy.  On good days I don't want one...on bad days I want one right away.

[callmemaddie]

Dear SherpaTat,

I am currently not taking methotrexate, but am planning to start treatment in the near future.  I wish I could answer your question.

I am wondering how have you felt while taking the methotrexate.  Have you had a lot of side effects?  Do you wish you stayed fully on prednisone?   Unfortunately the negative part about having GM is that we are limited on treatment options.  The meds seem to be our only hope at this point to suppress the immune system to rid the body of the inflammation.

From the little I know, it seems like GM patients can stay on the meds indefinitely.  I heard from one of my doctors that it can take over 1 year to rid the body of a GM outbreak.  Then if that turns out okay, the patient likely will have to stay on the meds for at least another year to stabilize the body.  The one thing I know is that patients have to slowly taper off the meds. It is really bad to stop any medication "cold turkey" because it can cause a big shock to the system.

It seems that there are more questions than answers for everything related with GM.  Unfortunately since GM is such a rare condition, there is not a lot of readily available information to refer to.

I wish I had more information to share with you.
If I may ask, how long have you had GM?

Best wishes in getting the information you need.