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aspenco
New Member


Date Joined Sep 2007
Total Posts : 2
   Posted 9/15/2007 9:52 AM (GMT -6)   
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.

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/15/2007 9:14 PM (GMT -6)   
Welcome to the forum Aspenco!!

I took mtx for about a year and had no problem tolerating it. I was taking 20mg 1x/week. I started with 15mg, but it wasn't enough.

I had been taking plaq for a couple years along with 600mg ibuprofen 3-4x day and it wasn't controlling the inflammation and pain in my joints. I also had extreme fatigue and I could not tolerate exercise (caused a worsening of all my symptoms. The mtx lifted the fatigue and allowed me to start moving around more. I did feel sleepy the day after taking it for the first couple weeks, but a good nap did the trick. Because it lifted the fatigue it was a real benefit.

I'm sorry you are having to deal with all of this. There are a couple of other men on this forum . . . I hope they see your post.

Let us know how your diet change helps things.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

 

Co-Moderator - Lupus Forum

 

UCTD, Hashimotos, Inflammatory Bowel, Inflammatroy Arthritis

 

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 9/15/2007 10:42 PM (GMT -6)   
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,
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/15/2007 11:17 PM (GMT -6)   
Oh . . Aspenco, the names of the men here (that I can think of) are Phndc (Frank) and Bsime (Bill).

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

 

Co-Moderator - Lupus Forum

 

UCTD, Hashimotos, Inflammatory Bowel, Inflammatroy Arthritis

 

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2548
   Posted 9/16/2007 12:26 PM (GMT -6)   
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
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


Audrey Ann
Veteran Member


Date Joined Jul 2005
Total Posts : 815
   Posted 9/16/2007 9:07 PM (GMT -6)   
Greetings Aspenco! I can understand your desire to avoid as much medication as possible but be careful. I take plaquenil, relafen, prednisone and methotrexate which I inject weekly. My rhuemy really wants me off the prednisone and I was off of it for over a year before starting back this past spring. I made the mistake of thinking I was all better and stopped taking methotrexate. Basically I was taking only plaquenil and relafen (an ant-inflammatory) and this led to a pretty bad flare that I am having trouble coming out of right now. The methotrexate was great for me. My fatigue lifted and most of my swelling and joint pain went away. I started to get my energy back and almost felt normal.

Good luck!
Prayers,
Audrey Ann
 
Lupus and RA and LOTS of Medications!
 


 


Trying2BFree
Regular Member


Date Joined Oct 2005
Total Posts : 251
   Posted 9/17/2007 2:12 PM (GMT -6)   
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.

Jeannie ~
   Mom to Ty (4 yrs old)
   and 3 Shelties
 
SLE diagnosis 10/05 now changed to RA 3/06, Endometriosis 5/05, PCOS 1990
Meds: Metformin ER 1500mg (PCOS); Loestrin BCPs (Endo); Methotrexate 17.5mg (RA); Metanx 5mg (RA); Remicade (RA); Lunesta 2mg (as needed)


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 9/17/2007 3:24 PM (GMT -6)   
Hi Aspenco, I have not been on Methotrexate but I wanted to add my welcome to you.
"Des"
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Lodine XL 1000mg, Klonopin PRN, Miralax 17g, Supplements


http://www.healingwell.com/donate


KarenO
Regular Member


Date Joined Jan 2006
Total Posts : 90
   Posted 9/17/2007 6:06 PM (GMT -6)   
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

aspenco
New Member


Date Joined Sep 2007
Total Posts : 2
   Posted 9/18/2007 12:54 PM (GMT -6)   
Thanks for the responses.  To make my inquiry at little more to the point, if anyone is on methotrexate could tolerate/deal etc. with their symptons without the med (that where I currently sit) would you still take it?  Lucikly, I do fairly well each day and feel the methotrexate is a little over the top.

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/18/2007 9:43 PM (GMT -6)   
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!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/18/2007 9:44 PM (GMT -6)   
OH . . . and there is much to be said about "quality of life". When I am properly medicated, I am MUCH more productive.

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 9/19/2007 9:27 AM (GMT -6)   
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
"Des"
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Lodine XL 1000mg, Klonopin PRN, Miralax 17g, Supplements


http://www.healingwell.com/donate


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1387
   Posted 9/19/2007 12:17 PM (GMT -6)   
Hi Aspenco.  I've been taking methotrexate about 1 year and the best way I can describe the benefits are it helps my overall body function more normally.  My blood sugar, blood pressure, bowels, and pain are better controlled taking mtrx.  I take my mtrx every Friday and spend most Saturdays in bed, but it's worth it.  Welcome to our forum!   

Dx: SLE diagnosed 2005, major depressive disorder, diabetes, fibromyalgia, gerd, sleep apnea (use a CPAP), hypertension, IBS
Tx: plaquenil, methotrexate, Imuran, prednisone, prozac, celebrex, lisinopril, actos, lipitor, nexeum, seroquel, arthritis tylenol  PRN: ambien, neurontin, promethazine, xanax
supplements: multi vitamin, C, flaxseed oil, calcium/D
             Better living through chemistry :D    Donna
 

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