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Sjogrens Topics => Living With Sjogren's => Topic started by: sceezix on July 24, 2012, 03:58:47 PM

Title: how long? MTX
Post by: sceezix on July 24, 2012, 03:58:47 PM
I am curious how long anyone has been taking Methotrexate? My Rheumy suggested that he would take me off at 2 years, but not sooner.  I haven't started the protocol yet; any info you all have would be much appreciated. thanks,

stacey~~
Title: Re: how long? MTX
Post by: eyeamdry on July 24, 2012, 09:57:14 PM
I have been taking MTX and Plaquenil for over 5 years since the dagnosis of my Sjogrens.  What was your dr's reason for taking you off at two years?  Lucy
Title: Re: how long? MTX
Post by: sceezix on July 25, 2012, 08:58:16 AM
Because I have great concerns about the long term effects of taking MTX, I asked how long I would have to be on it. Initially, he told me "indefinitely" and I expressed my concerns.  He said if I am doing well at 2 years he would take me off, but not sooner.  I asked why, and he responded that "they haven't had much success with suppressing the inflammation to the point that it will not flare up before the 2 year mark."  :-\

~stacey 

Title: Re: how long? MTX
Post by: bjnc on July 25, 2012, 01:13:25 PM
I was on MTX for 11 years for psoriatic arthritis (before I was also diagnosed with Sjogren's).

I worked great for me for the first few years.  However, from what I hear from others, I am one of the few who couldn't tolerated a higher dose than the minimum therapeutic does, 7.5 mg.  Whenever we increased the dose, my white blood cell count went way too low, I got sick a lot, and I got very bad skin infections for what would have been a very minor bump without MTX.

Don't let that scare you, though, as I've never run into or heard of anyone who was that sensitive to it. 

During that time, I had one liver biopsy (I don't think they recommend them anymore.), and it was negative.  I also have no residual side effects from the MTX right now.

Hope this helps. 
Title: Re: how long? MTX
Post by: sceezix on July 25, 2012, 02:01:49 PM
I appreciate the info, thanks.  You are the second person that has told me they could not tolerate the meds after a certain amount of time and were taken off.  Interestingly enough, you are both on Humira and both of you have psoriatic (sp) arthritis.  She became really fatigued after about 5 years when they increased her dosage. 

I really would like to avoid this medication if at all possible.

~stacey