Methotrexate

Thanks in advance for any responses and information.

I'm 36 year old male who thankfully is very active, etc. (SLE Dec. 06)  Recently some joint pain and swelling has gotten worse, along with decreased wbc (already low) and increasing anti-dsdna numbers (already high to begin with) so my Rheumy wants to but me on either a low dose of predisone and weekly methotrexate or just methotrexate alone.  Predisone is a non-starter for me so I wanted to get some feedback on methotrexate as I can def. function and exercise with my current symptoms and unless the methotrexate can slow, halt or reverse disease progression, I'd rather have some pain and not take any more meds (although rare the side effects and toxicity of methotrexate are not something I want to mess with if I can avoid).

Also, just started a gluten free and meat free diet so I'll let you know if that is helpful.  Currently on 400mg/day of Plaq.

Any thoughts on Methotrexate are welcome as I'm am leaning toward not taking it and seeing how continued diet and exercise help, thanks.

Hi, Aspenco and welcome. I don't know anything about the methotrexate to help you. I only take prednisone for my lupus as I have reacted to several other drugs they've tried with me. All I do know is that depending on whether or not you have or develop any organ involvement, you may well widen your options for treatment. I have read that since lupus primarily effects women, men often times have much more severe symptoms. I know there is a man in my local support group who has to go into the hospital quite often with his. I know there are a couple of other men as Rosie pointed out here, so maybe they can help you out. Welcome to the forum and take care,

Aspenco, I also want to welcome you to the forum.

I took methotrexate last year and stopped after a few months because I wasn't sure if the increased fatigue I was feeling was a reaction to the methotrexate. I've been on prednisone for a couple of years and take 400mg of plaquenil a day. I've tried other meds but so far haven't found anything my body will tolerate other than a very low dose of CellCept. Because of this I'm going to ask my rheumy at my next appointment if she will prescribe methotrexate for me again. I believe that finding the right treatment plan usually takes a while and some trial and error. I have also found that I'd rather deal with pain than take too many pain meds and risk becoming dependent on them and having to deal with the fatigue that they cause.

I hope you find the right combination of meds that works for you. It sounds like you're doing a great job of eating well and exercising and of course you know that will contribute to your wellbeing.

I'm glad you're here and am anxious to hear what you decide and how it works for you.

Pat

Methotrexate has worked really well for me.  I haven't really had an side effects to it.  My liver enzymes did jump up in July, but have since returned to normal.  I've read, and experienced, that MTX can really help with peripheral joint pain.  I'm at 15mgs now, with no plans to increase it.

Aspenco,
I have been on methotrexate for 1 1/2 yrs, and I have had great success on it. After a few months of being on it I started feeling like my self before lupus. When I started on it I could not get down past 15mg of prednisone without starting to flare, now I am off prednisone and on 15 mg. of mtx once a week. The idea of going on a chemotherapy treatment is a very scary decision to make, but I have seen the rewards from this med. I admit I don't love feeling ill the day after taking the med, but one bad day for six good days makes it worth it for me.

Good Luck,

Karen

Hi aspenco, I am one who does NOT like to take meds. I went a very LONG time just dealing with pain, numbness, tingling, sleepless nights, fatigue etc. After many years passed, I developed some issues which had to be addressed . . . falling, dropping things, hands going numb preventing me from functioning normally, could no longer go on a walk because of debilitating hip pain . . . blah blah blah . . . anyway, I found out that because I had ignored the initial pain and tingling, etc. . . . I now have permanent muscle loss in my hand and permanent nerve damage in my hip/back and wrist. Most of my pain is caused by inflammation . . . the inflammation is caused by my immune system attacking the covering on various tendons, skin and lining of my bowel etc. The bottom line is . . . if you don't halt the inflammation (the immune system attacking your healthy tissue), you could be allowing permanent damage to you body. I'm lucky this wasn't organ involvement. If I could go back, I would have started the aggressive anti-inflams (including mtx) sooner. Just my humble opinion. Blessings!

I have to agree with Rosie. I was about the same way. I did though want to see what it was like to take the medication but had major doubts that it would really change the way I felt, mostly because I didn't realize at that time how bad I felt. Once the medication started working (a few months after starting it), I could not believe the difference of how I felt. Going for so long with pain, your body starts making you think that is normal to feel that way. It wasn't until I felt good for a change that I realized how bad I did feel before.

I'm not on MTX but I'm on Plaq. May need to stop it soon because of possible eye damage from it and I'm really feeling bad about it. Knowing that I may not find something that makes me feel as good as the Plaq does is really depressing. If you can find that med that as Rosie says, gives your quality of life back... IMO it is so worth it.

Take Care