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2 days late on MTX never felt this bad

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Rheumatoid Arthritis
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Posted 9/11/2010 1:15 AM (GMT 0)
I usually take my MTX on Wednesdays but this week I had to get my blood test and since as I told everyone I over did it on the weekend with drinks I didn't want to take my MTX on the same day as the blood test.
Wednesday I thought I'd go then take my MTX but I left my lab papers at home. Thursday I went to the lab but had left my papers at the office. So finally today I managed to get to the lab with my papers. Good thing I had made an appt. and I still had to wait in a room full of coughing people for half an hr. past and I was on my lunch hr. I kept imagining they had TB. The tech gave me a good stab- I am black & blue. I went back to the office and quickly took my MTX.

I had cut my self from 8 2.5 mgs. per week to 6 so I was already feeling less comfortable pain wise. I usually notice pain in my wrists, hands, ankles & feet on a daily basis but this week my knees, hips and shoulders have joined the band. I am also super tired.

I have a lot of nerve cutting myself back anyway. Who the heck do I think I am the dr.? But I am so fed up with him not being able to get rid of my background pain and him reminding me how bad I was and how good I am in comparison. Then last time when he referred to my horrific onset as a "rheumatic episode" it made me 2nd guess my dx of RA. After all I am sero negative. Plus he told me I had to make a choice between MTX and alcohol so I thought I'd try weaning myself off I guess.

Guess that isn't going to happen.

Now my mouthful of teeth are aching too. This happens to me on and off. I have had a bunch of dental xrays and all kinds of exams. I even had some kind of gingival flap surgery that ended up causing me more pain. The dentist cannot find a reason. I think it's RA but my RD says no way.

Does anyone else get a mouthful of aching teeth?
Posted 9/11/2010 6:20 AM (GMT 0)
Weary,
The RA can affect the teeth, mine crunch a lot when the bone structure in the jaw snaps but on occasion just them
themselves hurt. Nearly every part of my body has been affected at one time or another as this stuff can travel
the body afflicting at will. Not too many people understand this. I also found out from my physical therapy dude that
since I've had the arthritis for so long it's taking me longer to heal from the knee arthoscopy where they shaved the
bone to get the arthritis out of it. Still hurts and swells up and it been almost 6 weeks. The Bromelain is helping the
swelling if I take 3 caps along with the Super Cissus RX. I need to get back on the Malic Acid, though.

If you get bruised from the needles ask for a "butterfly" needle which is like the ones they use on kids. It's the
only kind I can have as my veins are small and pretty well hidden. If they use a large one they usually miss the
vein and make a mess out of my arm. I've had one time they gave up after missing 10 times....I was so black and
blue it looked I got in a fight.
Nana Monster
Posted 9/14/2010 3:41 AM (GMT 0)
I agree, go for the butterfly needles, I got sick of looking like an addict with bruising up my arms, positively butchered by the blood place, so my rheumy now sends me to the hospital blood collection place. They use the butterfly needle and my bruising days are over or if I bruise its tiny in comparrison.
I think cutting back your mtx you are going to end up in a huge flare, I may be wrong but unless you are replacing it with something, something will give... that something will be your joints. Mtx so controls your inflammation. I had to go off it once to fight pneumonia and I got so sick, I couldn't put my jeans on my knees were so swollen. They were telling me to walk the wards for the pneumonia, I was hobbling the wards, my knees were balloons and my hips were on fire, I was oh so happy when I went back on the mtx. My inflammatory markers dropped from 300 to 8 in a week. Please be careful.
The last flare took me 3 months to recover from, I wouldn't wish it on anyone, golitho
Posted 9/14/2010 2:01 PM (GMT 0)
Thanks for the responses! I actually don't like the butterfly needles- to me they pinch the whole time they are in and the blood comes out so slow. I usually don't have this problem with bruising. I think this tech was just in too big of a hurry as the waiting room was full and she was alone. I filled up my tubes like I was a soda fountain! :)

Golitho- I know when I had to go off of MTX for 3 weeks I flared pretty good too. I only cut back because I was second guessing I have RA again I guess...
I'm sero negative and my doctor has been wishy washy lately. He called my horrific onset where he swore I was the worst case of RA that ever presented to him in all his years of practice (he's about 75) a "rhuematic episode" and says I am in remission because of my normal inflammation markers and have no significant swelling. The daily pain & fatigue I have he tried to explain away as residual as a result of the "rheumatic episode" or possibly fibromyalgia which I think is starting to become a catch all disease. Besides my pain is in my bones not mucsles. I always call it bone pain because I don't seem to feel the pain between the bones which are the joints and where I should be feeling it right? To me my finger bones hurt, my wrist bones, ankle bones, feet bones ache!

So- I guess I really do have RA if cutting back on MTX puts me in a even less comfortable place?
Posted 9/25/2010 4:23 AM (GMT 0)
Yes. My teeth have been hurting off and on now for a couple months. Been on 6mgs MTX injections weekly since January.
Posted 9/27/2010 7:43 PM (GMT 0)

i am on 15 mg of pred every day. i have gained weight in the belly region i one month. i am hungry all the time.  now he says he is going too put me on mts.  will i gain weight on this as well, and have the moon face.  i feel horrible. my eyes are swollen into little slits.  i have too take pain pills no matter that i am on pred. i feel depressed and sick at heart. i have 5 types of arthrhitis. my mamma died of interstitial pulmonary fibrosis, and i am scared too death. i do not mean too depress every one out there and am truly sorry if i have. i just need some one too talk too i guess. i am new on here, and i read every thread.  god bless each and every one of you.

Posted 9/27/2010 9:53 PM (GMT 0)
Welcome phoo! So sorry you are feeling so poorly- it sounds like you are recently diagnosed and I remember that to be a very tumultuous time full of a lot of different emotions. RA is kind of like a rollercoaster ride- hang on- you be OK.

I had terrible weight gain with prednisone because like you said you want to eat everything in sight! Once you get on the MTX and it kicks in they will taper you off of the prednisone and that problem will go away. I did not find I have weight gain because I take MTX.

I wish you all the best that you start feeling better soon!
Posted 10/1/2010 9:03 PM (GMT 0)
Sorry to hear you are starting to flare. I've done that to myself a few times, either cut back on the MTX or like this last time stopped it altogether and lasted for three months. However, at the end the pain and fatigue were truly horrifying. I thought I could just start back on the 8 pills....bad, bad, bad idea! It was like the first time I took MTX all those years ago, I was sick and could hardly get out of bed. At this point, I'm getting back on at 4 pills per week, and I'm back on the Leucovorin.

As far as alcohol, I wouldn't mix the two together! I remember the time I had a few beers the day after I took the MTX and my dh had to drive me home, and we ended up stopping along the way because I was not feeling so well, I'll leave it at that. I never mentioned it to my doctor, since we're not supposed to drink while on it anyway.

I hope you feel better soon, most of us have been in the same boat, I know it is painful.

Posted 10/1/2010 10:09 PM (GMT 0)
Hi momto3
I actually never went into a flare- I just feel more painful these days. For me I call a flare when it hurts so bad I have to wrap the affected joints in ace bandages or slather the ice hot continuously.

Doesn't your doctor get mad if you stop your MTX of your own accord????

I fessed up that I had been drinking but I haven't told him I cut my self back 2 pills.
Posted 10/2/2010 3:56 AM (GMT 0)
Hi Weary,

No, I went off in July after I was diagnosed with Osteoporosis at age 39. I was really worried that maybe the MTX had contributed in some way. My rheumy understood, but felt the MTX played no role, and he is looking into other possible causes, such as my parathyroid. A flare does many different things to different people, this I know. Hopefully you will not reach a point where it is unmangeable for you.

May I ask why you drink and take the MTX, doesn't it make you sick?? It is such a toxic medication as it is, and that cannot be good for your body.

I admit I enjoyed being off of the MTX for that short amount of time, and I had a few margaritas,  (my favorite!) they were fantastic!

Posted 10/2/2010 2:04 PM (GMT 0)
Hi Momto3

Drinking does not make me sick. Pre RA I had a martini every night at 9 PM and sipped it til 11 which is when I go to bed. I live a very stressful life and this took the edge off. On the weekends we socialize with other social drinkers. Wine with dinner and a drink or two while we talk.
I miss it very much.
Posted 10/5/2010 12:43 AM (GMT 0)
Hi Weary,

I'm sorry to hear you have such stressful work, and that can't be good for the RA either.  It seems we can't win can we??! I'm not much of a drinker, but my husband and I try to have date nights on occasion, and it seems they always fall on or the day after the MTX, so that means having  iced tea, but gosh I would love to enjoy a bottle of wine every now and then, I just had that unfortunate mishap of alcohol making me horribly sick and hung over the next day, and I'm fearful to try it again!

If it doesn't bother you, I don't see anything wrong with a drink every now and then, I mean it seems we give up so much for RA already right?

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