don't know what happened to the last half of my post..... Guess I'll retype it. grrrrrr. My first blood work test before starting mtx my crp was .5, which is in the normal range of

Ok, I give up. It did it again. Guess I'll try this again later because it is just adding to my frustration that it is cutting it off after a couple of sentences...

If you were trying to use a less-than or greater-than symbol, this site sees that as a hostile act and cuts you off mid-sentence. Try again without the little sign.

Thank you altoclef! That would be it. Not sure why that symbol would be considered hostile, but whatever. Ok, so let's try this again. My first blood work test before starting mtx my crp was .5, which is in the normal range of less than .8 and now it is 4.52 almost 10x higher. I took mtx for the first 4 weeks which was absolutely terrible!! Had much worse pain, plus lots of all new great issues like severe fatigue, brain fog, and joints unmovable in the morning. I switched to sulfasalazine 10 days ago, and for the last 4 days felt like an elephant is sitting on my chest, especially at night. Makes it too uncomfortable to sleep. For me, it seems the meds have made RA significantly worse. I don't think that it's just a coincidence that I started taking meds and all of a sudden all the symptoms get significantly worse, plus new worse symptoms. I am so angry and frustrated. I feel like I should quit taking this crap and go back to doing what I was doing before. Scary thing is I'm afraid the meds had popped the clown out of the box and don't know if cleaning them out of my system would put him back in. Sorry to go on such a rant, I'm just sooooo frustrated. I feel like I've screwed myself by taking this stuff.

it takes time, I don't think I even started to feel a bit better for 3 months, but I did start to feel better, almost sounds like you are having a flare...are you taking prednisone?? or anti inflammatories???

any chance you are allergic to sulfasazaline? you are short of breath?call the MD on that one.

i was allergic to sulfasazaline, lots of hives, itching and swelling including my throat.

as to MTX, i struggled for 2 years with it. I wish i had given up at the beginning. whether it was the pills or the injectable it did nothing but make me so miserable that I could not work. so in the midst of not being able to support my kids i decided that i was going to really verbalize with the doc. it was fine with her to have my course of action be a biologic alone. BUT I had cycled through every DMARD already. it's a crap shoot the mtx brain fog. but between that and only being able to not feel the negative affects for 2 out of 7 days of the week, i had to say goodbye mtx.

for you, not sure. maybe you could wait longer or try the injectable. if you try to complain to doc they are going to blow you off this early in the game about mtx, extreme fatigue is something the blow off and are NOT interested in.

BUT the elephant on the chest, that aint so good. call about the sulfasazaline will you?

Ros

Thank you Ros, I am taking prednisone. I did call my dr and she had me stop taking it, so now I'm on to Arava, 3rd drug in 6 weeks. I was just venting my frustration that my RA was better controlled when I was taking no drugs, and it seems that the start of taking meds did nothing except cause it to become very active and cause all kinds of issues that I had never had before starting drugs. It seems counter intuitive.

here's a hug then i get it

imagine my surprise to have plaquenil, sulfasazline AND Arava all cause allergic reactions in my one by one. to have the prednisone they give me in the hospital for opportunistic pneumonias from mtx absolutely slay me. here i was plowing through DMARDS which are making me sicker than the RA AND making the RA worse. i get it. hang in there. you'll arrive at some sort of pharmaceutical and personal truce/plateau/improvement eventually but you get demoralized by the promise and gloss of pharma in the process.

Ros

Wow Ros, so what eventually worked for you? I'm going to wait a couple of days and then start Arava. Dr is talking biologics but I'm hesitant to do those. They are more scary than the demards.

after ALL the dmards and as a prednisone refuser, a biologic alone was what I ended up on. Enbrel a year or two then Humira a year or two and now I am on orencia. the black box drugs. the nsaids do crap for me. sometimes i take a muscle relaxer if I am out of my mind. or drink whiskey.

just finished an infection of weeks and weeks and doing dental surgery this week so I am so c r a b b y from being a shade of my medicated self.

you are early and cycling through your disease modifyting what the heck is it call anti rheumatic drugs or dmards. a lot of folks have been successful on arava i hear. i had a swift allergic reaction to it. have you had mri's on any of your joints to get picture confirmation of where the affects of synovial fluid have taken you? the wrist ones are not fun but conclusive. i only ask that since you seem to be relying heavily on your blood work as an indicator.

we kind of have the same mind set. the reason I refuse to take actemra is it a third interference, in a cellular manner.

i am crippled lately at work walking trying to use my hands, with wrists that do not work. this is the affect of not having had the orencia while i healed from this infection this month and last month. consequences suck.

i believe that folks have been treating with humira for decades and decades though. in terms of studies on cancer outcome from RA treatment with the black box warning drugs.

hang in there

Ros

Ros, my heart goes out to you. I can't imagine not even being to take prednisone. This disease is scary and so are the drugs you take to treat it. I haven't had any MRIs, but have had an ultrasound on my hands. There was a good amount of swelling and fluid, but no joint damage yet fortunately. The blood work just confirmed to me that the mtx had made the RA significantly worse. Before taking mtx all the blood work was in the normal range. The dr diagnosed it by feeling the joints in my hands and by the ultrasound. Taking the mtx really seemed to let the cat out of the bag. I now understand the fatigue people talk about. Didn't have that problem before mtx. Now I'm just trying to get back to the level I was before starting mtx, but afraid the cat won't go back in now that it's out and that really frustrates me. I started meds thinking it would help, but instead set me back 10 paces.

You sound like one of the very difficult to settle cases on here.

I am surprised prednisone, if you are actually taking it on any regular basis, hasnt settled you. It is a really big gun (WMD even) for inflammation which is what is causing the pain and then after that trying to find something to curb the attacks from the immune system. You had so much trouble with the post that you may have mentioned it and lost it in retelling.

Not all but many of us are given very high doses of prednisone which quickly is tapered down or even off. You dont say this. If this didnt happen I would think that getting everything to a place where you are under some sort of equilibrium would take a very long time.

you know something Iretz i think you are right.

i remember stopping the mtx after one pneumnonia hospitalization and being miserable. sicker than before. counting on your paces to shorten. stay strong.

i agree not taking prednisone, stinks.

i have a nice thing called prednisone misery rebound that lasts and lasts... there was no bridge, no "reset" only misery at a higher level once i tapered to zero upon conclusion of pneumonia therapy.

my adrenals are the only thing not tinkered with lately. better than nothing :)

Ros