Are the side effects worth it?

By Jules Wednesday, July 30, 2008

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What to do? I have been struggeling since 2005. In Nov 2006 I had a horrible episode of Pain in feet, legs and vertigo. Thought I was having a stroke. After an MRI, they thought I had MS, there were 2 white matter legions on my brain that have not changed since. Turned out after PAINFUL tests and lots of suffering, I was diagnosed with Fibromyalgia and RA. I took ,them 18 months to figure this out! I had always had a HIGH anitbody in my blood, but negative RA Factor. I have not worked since November 2006 and have had NO RELIEF!! In the meantime, the RA has caused significant damage to my hands (and I suspect now my feet as well). An MRI in Feb 07 showed some major damage to both hands and wrists. I am scheduled for another MRI of my feet tomorrow. SO...in Feb 08, my Rhuemy wanted me to take MTX, I declined and opted to go with a Natural "Doctor" not MD and try herbs, chiropractic adjustments and diet. After $5,000 I am no better and in fact MUCH WORSE! My feet and hands are unbearably painful most days and swollen and sometimes even discolored from the viens and swelling. I have trouble walking more now and my right index finger and thumb are not functioning well. I have decided I HAVE to do something more now. The question is...WHAT?? My Rhuemy wants to do MTX I AM SCARED TO DEATH of the side effects. I have had a vitamin B, and D deficiency already and have had a White Blood cell count on the low side WITHOUT drugs like MTX. I have a brand new GrandBaby I am having difficulty picking up and walking when she is fussy...I want to enjoy her and know I am deterioating quickly. I am using heating pads, Advil, my spa and over the counter Arthritus "Rubs" and they are not cutting the pain enough. I am so TIRED! I have pain ALL THE TIME, but I function. I mean, I get out of bed, I am not in the bathroom all day due to nausea and although the fatigue is terrible, a nap will usually help me get through most of the day. Yeah, I can't work or do much of anything else but sit around, but I am out of bed and alert.

SO, Please....those of you on MTX give it to me straight...how bad is it? Will I be "down" several days a week? I want to be able to function and am scared to death of the side effects of MTX. How long before you get relief? How long before you can tell if you can tolerate it or not (I mean, how long should I give it a try before giving up)?

P.S. I am ONLY 44 years old!!

THANKS SO MUCH!!

Jules

RA and back pain

Comments (10) | Add comment

AmyAria

7/31/08 11:41am

Oh sweetie, I'm so sorry for what your going through. I've put up several posts and questions on "the meth"...probably too many, but all I can say is that my life has gotten better, not worse after taking it. Not everyone gets all the bad effects. I've had no stomach issues at all, but the worst for me has been fatigue which gets better with each passing week. I don't know, I never want to be the one to tell anyone else what to do. It's such a personal decision. All the same, it seems you've arrived at a rather desperate place. Maybe it's time to give it a whirl, huh? After all if it effects you horribly you can always stop taking it, right? Let us know what you decide to do, there are many like you dealing with these very same struggles that can benefit from your experience. Good luck!

Jules

7/31/08 6:36pm

Thanks for your reply and support, It helps. I went back and read your posts on Meth as well as the replies of others...very helpful. I am heading down the path of taking the Meth. I get the results of my last MRI (feet) on 8/28, if there is more damage, I will for sure take it...if there is none...I will probably torture myself with wondering if I should take it or wait for another few months. I am my own worse enemy with drugs LOL.

On another note, your posting "What's in a Name" was the BEST!! lol. I absolutely HATE IT when people comment about there normal Arthritic joints...like the tenis elbow or "bum" knee. What is up with that???? People hear the word "arthritus" and asume we have a few normal aches and pains from aging! I WISH! Get a new dentist! I have heard MTX and dental work can be dangerous...your dentist should know that!

Thanks Again...God Bless

Goodeggslightlycracked

7/31/08 10:17pm

My heart goes out to you , the pain and struggle to keep the function you have in your hands is really rough. I am at the starting end of that right now. In a month's time saw function in my right hand decline significantly. My Rhuemetologist assures me that the Methotrexate will help stop the process. I started it 2 weeks ago. I take 4 pills one day a week. I take it at night, as the first time I took it, I got real woozy and like I was drunk. Laughed hysterically all by myself at the crazy thoughts that went through my head. Like "What if the slight hair loss it could cause made my hair fall out in a polka dot pattern of bald spots...?" I do feel kind of off balance physically and exhausted for 24 hours afterwards (I need to sleep off and on all day the day following taking the pills.) So far no other side effects. Good luck to you on whatever dicision you make and congrats on the new Grandbaby!

honda_mom2006

7/31/08 10:55pm

I myself, just posted a blurb about a week ago asking the same questions you did about the side effects of the meth. I'm terrified. I've read all the horrible and not the good! I went the the rheumy on Tuesday and she said "you've got permanent damage you need to do something soon or you aren't going to be able to walk in a couple years." Even with that I'm still struggling with a decision. I filled the Rx but haven't taken any. I think at this point we need to ask ourselves if the risks outweigh the positive? Do we want to be able to walk to the car, do we want to be able to zip our jeans, do we want to be able to catch ourselves if we stumble, and in your case do you want to be able to bend down and scoop up that baby? Even if we suffer the worst side effects there are, we can always choose to stop taking the med and go from there! That's the beauty of life: it's OUR choice! I wish I could say it's worth a try but since I'm as afraid as you are, I can't talk! Just know I am here for you if you'd like to talk to someone who is in an almost identical spot in the decision making process...

Jules

7/31/08 11:42pm

WOW...I am so touched by all the responses and support. It helps so much to see I am not alone. I was beginning to think that I was some big baby with some wierd drug phobia! Realizing that there are others who are afraid enough of the side effects to live with the pain just like me helps me. In addition, thanks SO MUCH to all of you brave souls that took the Meth and have shared your experiences...at least I know there are many out there who take Meth and are doing well.

I had my Grandbaby 12 hours yesterday...thankfully, she is a terrific 3 month old and easy to deal with...I have all the baby stuff like swings and seats to switch her from one to the other when fussy rather than holding and standing with her.
But, I AM PAYING BIG TIME for keeping her that long, but her sweet little face and cuddles are so worth it

I find out 8/28 the extent of the damage in my feet now, and I have pretty much resigned myself to taking the Meth then. My poor husband of 27 years is beside himself with all of this, can't stand to see me in so much pain. I think it is time to stop trying to fight it without drugs and give in. Wish I would of given in prior to spending $5,000 on "natural" medicine! LOL I have always been a slow learner and hard headed!

THANK YOU ALL AGAIN

Jules

ange

9/ 4/08 4:34pm

Hi,

I was on Mtx for less than a year, I recommend it, my symptoms were totally gone, a couple of times I had really bad nausea and flu like symptoms so I decided to stop it and of course all my pain and swelling came back. I would say give it a shot, it might work good for you, everybody tolerates medicines differently.

ann

9/ 7/08 12:41am

Hey Jules,

I just read your other letter regarding your RA and not wanting to take MTX. I responded to your other letter re: back pain and when I read this one I just had to respond. I have never heard of MTX before and I have been going through this for along time. Hope you find your answers.

Ann

ann

9/ 7/08 12:55am

Jules,

Hi it is me again...reading comments from others to you and saw that mtx was methotrexate...duh lol....my dose is 8 tablets (20 mg) once every week. If you are taking less than that I think you'll be fine. As with anything new you will just have to see how it works for you. I hope you have great results.

Good luck

Ann

Dorothy N. Jordan

9/23/08 1:57pm

Hello,

I've been on MTX for about 8 years now off and on. I started back in 2000 and up until July of 2007. I'm also taking prednisone along with the MTX. Prior to getting back on these two meds I was in severe pain all day long. I was taking ibuprofen like crazy, because of my stiffness, soreness, and pains in my feet, ankles, hands, and knees. I decided to change doctors to see if there was anything else that I could take or any other alternatives for the RA. As soon I start talking to my new Rheumatologist and informing her of my severe pains in the morning trying to get out of bed to go to work, she started to examine my fingers and noticed the legions and the swelling in other parts of my joints. She immediately stated that she would put me on MTX along with the 5mg daily doses of prednisone. So now I've been on the two combined meds for about three weeks now. She also mentioned that she wanted to see how the combination would work toward the progression of the RA to my joints. She is also thinking about putting me on Humira, but I am refusing to take it primarily, because it has severe and a lot of side effects. I am feeling better now and of course this comes with the low mg of the prednisone. The MTX will not kick in until maybe another 3 weeks. I do understand the pains, the stiffness, and the emotions that come with RA. I found my strength in praying and meditating on God's word. Good luck!!!!!

Dorothy N. Jordan

9/23/08 2:05pm

I wanted to mention also that I take the MTX every Saturday (15mg), and it makes me sick for about a couple of hours which includes (headache, dizziness, and nausea). When I relax and sleep for awhile it lessens the symptoms and I can normally function for the rest of the day. The symptoms will return maybe a couple times through out the week.

Are the side effects worth it?

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