What is Rheumatoid Arthritis

Rheumatoid arthritis (RA) is traditionally considered a chronic, inflammatory autoimmune disorder that causes the immune system to attack the joints. It is a disabling and painful ...

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Advice:
Methotrexate usage
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I have pretty severe RA, 5 years or so in and already have deformation in my hands and feet. i was put on prednisone to get me moving again. it works, but sucks. i was told methotrexate will get me off the prednisone.

well so much for that. so far i take 6 pills, feel awful for 2 days, random chest pains (chest pains are continuous all week), and coughing, don't notice much for 3 days, and then start to stiffen up for the 2 days before i take it again. so it is doing something, but not much. this is week 9, same consistency of effect. so i'm thinking more? 20mg instead of 15?

i also tested the get off prednisone theory with the mtx. i started day on day off, 20mg. did the day off for 2 days, then went right back to 20mg a day (i tried 10mg a long time ago, it was about as effective as not taking any at all). the second day off, was worse than the first, when my neck froze up again, not being able to turn my head to the left. that hasn't happened for a year. so i'm starting to think it's not backing off. not at all.

so far i'm in that group 'prednisolone dependent with limited response from immunosuppressants'. AWESOME. so basically here's the other catch. i have no heath insurance. self employed pc tech with a cooking job on the side. life is getting really really hard. i cannot afford any other drug from the looks of it. orencia, avara, all of them are insanely expensive. $1700 a month, are you serious??

does anyone know of another medication that isn't made partially of gold? because this stuff is getting very hard to deal with. i'm not getting painkillers. i refuse. i hate them. they may work, but what good is feeling good, if you just sit on the couch and not care about anything. i don't need DUH'ed out, ya know.

i'm a very very strong willed person and ra still hasn't gotten me fully down yet, but it's working on it and i need some advice :-|
Posted on 10/24/09, 10:10 am
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Reply #1 - 10/24/09  1:39pm
" I had a similar response to MTX and my Dr. switched me to Arava after about 15 weeks of the "watch and wait" phase. The Arava was much much easier for me to tolerate. It has not done the trick on its own and we've added humira, which seems to be showing some promise. I know that Humira offers financial assistance if you don't have insurance, and I do believe Enbrel offers something of the same.

Good luck in finding something that works for you - please keep us posted. "
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Reply #2 - 10/24/09  3:41pm
" It might be worth noting that for me, I didn't see the full improvements of MTX until week 12 or 13.

Oral MTX was always awful for me too. When I switched to the injections, it got so much better. BY the time injection day comes around (I inject in the evening so I can sleep through most of the side affects) my body is pretty sore. THe day after the injection My brain is a little foggy, and I tend to be quite nauseous, but the other five days of the week are pretty good. My son and some of my friends also experience less side effects from the injections than they did from the pills. MIght be worth talking to your rheumy about. I don't know if the cost differs much because we have fabulous medical coverage and I live in a country where medication is government subsidized.

Enbrel does have a co pay program available.

Also there are other DMARDs that can be more effective for some patients Thant MTX that do not cost as much as the biologics (although can cost more than MTX), like Auranofin (Ridaura - I know you said not partially made out of gold, but oral cold can be helpful to some patients), penicillamine, hydroxychloroquine (plaquenil), azathioprine (Imuran), and minocycline (Minocin). Some of these are used on their own, and other in conjunction with MTX. Your rheumy would know of more, and which might appropriate for you, as well as which have generic versions available, and which do not. It might be worth talking to him about this. "
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Reply #3 - 10/25/09  9:25am
" Humira works very well for me and they have great financial assistance. For a $5 co-pay they cover the monthly Humira injections and MTX. "
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Reply #4 - 10/25/09  10:53am
" MTX tore me up, on it for 2 years. My gums in my mouth would just fall apart, very painful and bloody, not to mention very gross. I had HORRID headaches, stomach aches and no pain reduction. My RH factor went down but the Dr finally took me off. Look for the financial assistant programs, I am on one too.
Good luck to you, I am uber resistant to everything and I was painkiller free for a long time, but eventually I found one that didn't make me sit on the couch. I have a 3 yr old and need to be able to function. It doesn't keep me pain free but at least it takes the edge off so that I can be a mommy, wife and employee. =)Laura "
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Reply #5 - 10/26/09  12:22pm
" hello, i also am from il. i have been on mtx for 3-4 years.....i live in the quad cities. good luck. i don't seem to have any side effects.. hugs, deby "
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Reply #6 - 10/29/09  2:15am
" Couple of things...

1. I'm not quite understanding your getting off prednisone. Are you stopping the prednisone all at once, or tapering? If you've been taking it for a long time, you really need to back off slowly. Check with your doc on a good tapering regimen, but be prepared to take a while.

2. There are other generic alternatives to MTX: plaquenil (Hydroxychloroquine sulfate) and sulphasalzine are two.

3. Drug manufacturers have plans to assist you with costs on some of the other, more expensive drugs (of course they do), but I don't know how long these programs last.

Sorry you're having a tough go of it, and I wish you all the best in finding some relief. "
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Reply #7 - 10/29/09  11:18am
" I'm going forward with the MTX pills, i'll give it 16 weeks. I have looked into the financial assistance programs for humira and enbrel,
up till now i have had but only 1 visit to a rd. i was diagnosed, of couse it's pretty obvious, lol, and he charged me $400.

so i've been working with a walk-in clinic doc to get the pills and stuff i need, but he is not comfortable doing anything more than this. understandable. so i have searched for a rheumatologist everywhere that i can afford. i think i found one, $82/visit. we will see how well that goes. i'd like to check into some of those other cheaper dmard's in the meantime in case the mtx don't work out.

thanks very much for all the replies, i haven't really talked to anyone about this and it has been very helpful! :)

about the prednisone, i've used it for awhile, and i tolerate it fine. i just don't want to take it anymore. i break open my knuckles alot because of it, now even worse with mtx. healing takes forever.

i've tried every way you can take it. 'the lowest, effective dose'. day on,day off 20mg. 20/10mg day/day 10mg a day didn't work at all, 20mg a day is the lowest effective dose and it's alot. i'd just love to not take it :) it's not making me gain weight, but i was told it take alot of my body's calcium and effect muscle strength over time. "
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Reply #8 - 10/29/09  1:29pm
" My doctor gave me two more pills after my pain had stopped. I take 7. He said he was still seeing things that I didn't feel. I only take MTX and Nabumetone. I don't have side effects at all but I have felt a tiny bit of aches they day before my next MTX day. My doctor is not worrying about that. He said that is normal. My test have all come back great for 15 months now. No Inflammation. I do feel some grinding in my feet when I have been exercising or running. He said that is my damage I had in my toes before I found out I had RA. It feels like I have a balled up sock at the bottom of my shoe. He says I need better shoes and those gel things. We go to the same gym so he watches me.

I think Pred caused more pain from getting off it than why I started taking to begin with. I hate that stuff. I think there is a rebound effect that keeps people hooked on it. "
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Reply #9 - 10/29/09  2:19pm
" Are you taking any NASIDS? AS you come off the pred you need to already have some in your system. It will still suck until your adrenal gland starts working again. "
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Reply #10 - 10/29/09  3:25pm
" Just want to echo reply #6 - taper, taper, taper - 1 mg or .5 mg at a time, SLOWLY, GRADUALLY ... my RD told me to stay at a given dose for a month or 6 weeks before going down another mg. "

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