Hey, I'm new to this board, I just thought that I would share my story. I'm 22, female, just got diagnosed with RA this past winter/spring. I had been having RA pains since I was 18, at first the doctors pretty much dismissed it. Then they told me I had palindromic rheumatism and watched it, until they decided it was time to put me on meds and classify it as RA. I am on 400 mg of Plaquenil a day, and 20 mg of Methotrexate a week on injections. I was on oral dose, but the doctors weren't happy with the results. I'm still tired and I was getting mouth sores and my joint pain wasn't gone. My doctor says she wants me to be symptom free and I really haven't improved much since March when I went on all the meds. Mostly the pain is my toe joints and hands, with occasional pains in wrists. The thing that I find really annoying is that the pain isn't even that bad, it's just that I can feel it and know it's there. So in that way the RA really isn't that bad which is fabulous, but at the same time the meds still aren't helping which scares me for the future. Also the fatigue is crap. I hate it, that's the worst part of this whole thing.
Anyway my question is...at what stages of disease were people put on biologics? Enbrel, Humira, Arava etc. I'm curious as to other people's experiences with meds and why mine aren't working even though the RA seems to be relatively mild. THanks!!
Brit
Welcome Brit. This is a good place to come to learn from other's experience and also make some good friends who truely understand what you're going though.
I'm on MTX & Humira. I just started Humira in December. I'd been on MTX three years before that and had increased the dosage to the point my doctor felt like it was time to add something more. I was diagnosised over 11 years ago now and have been from one medication to the next at times with good results. It's a life of constant ups and downs...I'm never sure what exactly tomorrow will bring.
Again, welcome to the forum. We're glad you're here.
Hi Britenny. I started with plaq and pred in Dec. '04, on my second visit to the Rh doc. My response to those two meds was not great, so in Feb of this year, doc put me on mtx. In May, we added Enbrel. Point is, in a matter of a few months I went from zero to Enbrel. Doc recognized that I was in the early stages and he wanted to prevent as much damage as possible.
I still deal with daily foot pain, perhaps we'll add to the med mix or take something away in the near future. I hope that the pain (which is mostly tolerable) is not indicative of joint damage. I also hope your fatigue will pass as most of mine has (least for now).
I found that by researching RA on the net, I was able to convey to the doc some of my knowledge and ask about various treatments, giving him a certain level of comfort and allowing him to treat me a little more aggressively.
Good luck and don't give in.
Hi Brit and Welcome to our group,
So glad to see that you have joined our group. you came to the right place, not only is everyone very caring they also can be extremely funny and we all know how much laughter, soothes the aching soul.
I have been on MTX, for over 2 years. In the beginning I thought it was not working either, till I decided to stop it and go it on my own. Three weeks later, I was in absolute pain. Everything hurt. I was glad to go back on it and I never did that again. Medications can take some time to start working and fatigue goes hand in hand with RA that is still out of control. You may have to be on more than 2 drugs at a time. I am sure your rheumy will try to add something else to your meds for better control of the RA. I just read that the drugs Azulfindine,Plaquenil and MTX together are a good combination, and work better than just the MTX and Plaquenil. I am on all 3 of them and they seems to be doing quite well for me. I still have some discomfort but all in all, much better than I was 3 or 4 months ago.
I hope that you soon feel much better. Just hang in there, it will get better.
Toni
Hi, I've noticed that someone on this board...sorry can't remember takes Provigil for fatigue. Has anyone tried this drug and what are its effects and side effects? I'm having really bad fatigue and am wondering if I should bring this up to my doctor. Thanks!
Brit
Hi Brit....
Welcome...
You've come to a GREAT place to vent, whine, complain, offer information, obtain cyber space hugs, and most of all not feel alone. What a GREAT group of people here.
I am sorry though to hear of your diagnoses at such a young age. It's difficult as you have stated. I find it just plain un-nerving that there is constantly pain no matter what level it becomes very frustrating on a daily basis.
I was place on MTX first then about 5-6 later I was placed on Enbrel. I've been on the mix of the two for almost three years. I was diagnosed about 3 and a half years ago.
The way it was explained to me was; the sooner we are placed on the regimen the better we will be in the future. Talk more with your RD about starting it. I personally noticed a difference within two months.
Hang in there... Brighter days are coming for us all !!!!!
Welcome Britenny!Olive--(and anyone else), did you find a big difference then between the MTX and the Enbrel?
I find my main problem is the fatigue. I am so tired all the time, and hopefully I'm going to be in law school this fall and I just can't afford to have no energy. Also it's difficult because being tired is such an indefinable problem. You don't look sick, you're not throwing up and having fevers, but you feel like garbage. It's so irritating to me because I feel so lazy, but I can't help it, and then some days I wonder if maybe I'm only feeling tired because I think i'm going to be tired that day. It's just such a vicious cycle. Does anyone else find the fatigue the WORST part of this disease?
Britenny
WELCOME BRITENNY
I also hate the fatigue. I was dx in April of this year. Symptoms started pretty severely last Sept. I am getting on Humira as soon as my insurance approves it. I had a reaction to mtx and sulfa stuff (spelling
Anyhow, I think patience is the key. Not one of my strong points but ra is a challenge and I think I need patience to win this struggle ! Welcome aboard. Welcome! I have to agree the fatigue is just horrible
I hope you get your med situation correct Nice to have you here,
Cant offer you any advice on biolgics since Im only on Plaquenil and Celebrex and Ultram for pain. But you will receive a lot of good advice from other vets of the disease. Sorry you had to join us cuz of RA, but I am also glad you found us cuz of your RA!
Take care Shawnie Britenny, Welcome to the board! Hope we get to know ya!
Why don't you check out the roadback foundation.org there is some very interesting info there.
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