Hi, my anme is Natalie and yes, I am 41, live in pgh, and recently diag. with ra in addition to sjogrens and celiac. I have a wonderful husband and a great 11 yr old. I am blessed for that. My other family has been out of the picture since I became so ill. Actually, I have always been ill, and I don't know why it took so long to get this diagnosis of ra...I just woke up one day with big hands and feet thinking that it would go away. It didn't, and now I know. I am thankful to those members here who ans. my post about mtx which I am on now in addition to plaquenil which had been working wonders for 2 1/2 years until it suddenly hit a wall.
Truth is...I have hit a wall in more ways than one...Always a type a personality with a good career, I had to leave it behind several yrs ago as I was so sick and yet they could never figure out ra. I work part-time and I can hardly do that well. I am feeling sorry for myself right now as I am in a dark place. This is totally out of my character. I never cared much for whining. Question: how long did it take for mtx to work? I feel sicker now than before I started. I have no energy and cannot even turn the steering wheel in the car as it hurts. Also, prior to getting diagnosed, my husband and I planned a get away for our 18th wedding anniversary to a wine and food festival. Does anyone have a glass or 2 of wine on mtx? I was told no way period by my doctor's nurse, but I never got to ask my dr. I know this sounds trivial...I jusst have sooo many questions, and I feel so alone. maybe this will pass. I have always been the life of the party...would you believe that?! lol. Maybe this will pass.Hey Natalie,
I know Pgh. very well - what part do you live in?
It's really hard when, one day, your life grinds to a halt, but people around you go on the way they did before. Our kids don't understand why one day you can't walk across the room, why reaching into your wallet is suddenly agony, why you avoid driving at all costs. I love playing the piano & the hammered dulcimer, and I haven't touched either one in months. Right now, I'm not even in agony the way I was a few months ago, but I'm afraid to kick it up again, and I don't want to do that.
Whine away. We've all been there, and there are people here who know a lot about just about everything. You're not alone in this crowd.
Hi Natalie,
I would think you should feel some benefits of the MTX within 8-12 weeks. If not, mention this to your doctor...it might need to be increased.
As far as drinking a glass of wine while on MTX goes...well...my doctor says I should not have anything to drink while on MTX. I am not nor have I ever been much of a drinker, but I do occasionally have a glass or two of wine. Maybe tell your doctor about your anniversary plans and see what he/she suggests?
Kelly
How kind of both of you to answer back so quickly...I am from Oakmont Pennsylvania, just outside of Pgh Fiona. I think this damp weather is also a hindrance to my health and spirits. Thanks for the encouraging words. Kelly, thanks for your reply...I have been on mtx for 3 weeks now...yes I know, I am impatient, however, when I started plaquenil it seemed to work so quickly that even my dr was in awe. Maybe I need to give it more time based on what you said. It has just been a bad weekend. I seem to be "losing" days in bed. I don't like that. I am an avid gardner, painter, and I craft soaps and lotions for a hobby. I am now sitting and looking at my huge inventory of essential oils and such and saying, "I'm just too tired." Its just so hard you know...I look at my hands and they no longer look like mine, all puffed up. Does that go away when the mtx starts to work? Does your energy return?
Once you're on an amount of MTX that works for you, you'll have much better days where you're energy level seems normal, but then there are days where it's not. It's so hard to say how this will go for anyone with RA. A lot of ups and downs, but from what I have found for myself is at the beginning of this journey, it doesn't look or seem like anything will get better, but it eventually does get better.
I've been on MTX for about 14 years and I still get swollen hands..feet..etc, but I'm certainly better than before I was on MTX. Right now my hip is killing me, but probably tomorrow it'll be gone. It's just so unpredictable.
What amount of MTX are you on?
Natalie my rheumatologist says that I should keep alcohol to a minimum. I asked her what that meant. She said that some Dr's suggest 4 alcohol free days a week. She didn't like that as she thought some people might think that meant you could binge for the other 3 daysHi Natalie, Sorry the meds are not working so well for you. It can take a long time to figure out the right combination and dosage. My experience was to start with prednisone, then plaquanil, methetrexate and finally enbrel. In gneral, the doctor will probably keep adding meds until the inflamation is under control. Right now I'm on all of these and hoping to get off prednisone soon. I still have bad days but my energy level is better and I don't have as much joint pain. Remember too that depression goes with the RA scenerio. It's scary to have this serious illness and frustrating to try to work, have a family life, and do the serious work of taking care of your body. We are glad to know you and talk to you. There is plenty of support and information from this group.
You are feeling natural responses to a life-changing situation
and it is nothing to feel ashamed of. This disease can be really
tough and unforgiving at times -- you have obviously seen both sides of
the coin.
I wish you luck on your medication quest. I am in the very
beginning of that journey. I really am hoping for the best but
prepared for the worst. Anything is possible.
Dark days are dark days, and we all go through them. It is part
of life and you sound like a proactive person. You can do what
you can do, but the rest is left to the medication.
Welcome
Hi Natalie and welcome. I have lost days too and when this first came back I lost almost 9 months. I was in bed or just couldn't go out because I was in so much pain and on pain killers. I slept most of that time away and the tasks that I had wanted to get done just collected dust. I also wasn't aware of what was going on in the world too much.
I'm on 8 methotexate and folic acid and that took awhile to work for me. I don't really have any side effects. My hands are still swollen but then maybe I'm eating too much salt and need to cut back.
The methotexate has really made a difference. There are things I wouldn't even have attempted months back that I'm able to do now. I can even make plans to do certain things whereas before I would have said no there's no way I could do that. I'm thankful to be on it. It's working.
Hope you feel better soon!
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