Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...

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chewylover 10/15/2013

Hi there, I'm feeling so confused any comments would be helpful. I have been on enbrel, humira, and now orencia with methotrexate ofcourse with all of them.
Enbrel had side effects, Humira left my knees swollen and painful, Doc moved me to Orencia. Now Doc says I'm in "remission". I am losing 3 days a week to illness from high dose of metho, then Orencia just makes me feel like complete crap. I'm not throwing up but nauseous and malaise to the point of not being able to do much but lay around for 3 days a week.
I have 2 kids, I can't live this way!!! Do you think Doc will switch me back to Humira.... if this is "remission" I'd rather have it with Humira less side effects same pain. I feel so stressed because my ability to function is in someone else's hands, and finding a compassionate Rhuemy doesn't seem likely in my town from reviews I'm afraid to let go of the not great to have something much worse.
Last night I skipped my metho just because I'm so sick of feeling like crap, I almost feel like being really crazy and skipping my Orencia too.

deleted_user 10/15/2013

trishcorsi?? where are you ..what is the name of the drug that helps with nausea and hair loss ??
hi chewylover ...i take this drug that helps with nausea ..it begins wit 'L' cant think of he name rite now ...someone else will come along to give you the name , maybe the RA dr can prescribe it for you as well..and i have seen on here other methods of helping with the nausea ..sorry for your added stress and pain ...

Angelpuss 10/15/2013

I think Leucovorin is the med Tammi was thinking of.

Lori57703 10/15/2013

Are you taking folic acid while you are MTX? From what I have read it can help tremenously with some of the side effects.

Hope you feel better soon.

Kimberley97 10/15/2013

I'm not sure about humira but I was surprised to earn that I can never go back on remicade again. It worked so well for many years but eventually quit so I switched to humira which also work for a few years and quit then on to enbrell gave it a good try but didn't work now orencia for me I had my first infusion last week and it kicked my butt. Anyway dr said remicade will never work again if you've come off it you can't go back. Blessings hope you feel better. I also keep wondering how I can have so much pain without RA being very active or in a flare

bcatz 10/15/2013

get your dr to prescribe the max dose of folic acid. Also, see about DECREASING your methotrexate....like drop one pill and see if that helps.

The fatigue and stomach nausea sure sounds more like the methotrexate.

YEs, you can go back to a drug. It may or may not have same results. Weird huh?!

chewylover 10/15/2013

Yes, I'm taking folic acid, 1gm a day, but, these drugs seem to affect my thinking. Last visit he asked me if I was depressed, I said no cause I don't want to add more drugs, but maybe something for that could help my overall cycle of pain, or help me to think more clearly... I get like extended brain fog from metho then a day to recover then next day orencia.

deleted_user 10/15/2013

Ask your doc to switch you to subcutaneous injections of methotrexate instead of tablet form (it will be the same dose). While this may not eliminate the nausea 100%, it should vastly improve it. If for some strange reason the doc refuses, you can break up your methotrexate dosage over a 24 hour period, over several meals, to give a small bit of reduction of nausea. But for you I really think methotrexate injections over tablets will be the answer to your nausea issue.

Regarding Orencia, how long have you been on it for now? It can take several months to feel the full benefit from a new injection.

chewylover 10/15/2013

First of all thanks so much to all the replies, I've been suffering "in silence" for so long it's so nice to be able to share. I've been on Orencia for almost 4 mos. -and I'm already doing the injection form of metho. I sometimes wonder if I'm fighting fibro, the fatique and back pain etc. My doc seems doubtful but, I don't always have my worst pain in his office. If I had fibro "my hair would hurt" his words.
My point being maybe I should reduce my metho a little, if the pain is fibro the metho drop wouldn't hurt I guess.....if the joints go crazy I'll know I was wrong. Do you all feel like you're your own doctor?

chewylover 10/15/2013

Also just looked up Leucovorin, sounds promising, I'm going to ask my doctor. Thank You!

altoclef 10/15/2013

Sounds to me like it's time for a set and a chat with your doctor. There are other biologic drugs- maybe one of them would not knock you out so badly. If Orencia is working well, how about lowering the MTX? From what I can see, this whole disease presents a series of bad choices and we have to choose the least bad, but if the treatment is worse than the disease you need to find a different drug combo.

chewylover 10/15/2013

Yes well said! thanks I'm seeing this all clearer now after rebelling against my mtx dose and hearing from y'all. Truth is I reduced my mtx dosage on my own about 6 months ago and was scolded by my old doc. I was told this bouncing my dosage around is making my hair fall out. So I actually didn't think of reducing it again, because I feel like I'm breaking the law to do so, lol...Anyway I think Orencia is helping and hopefully newer doc will agree about reducing mtx.

Caren28 10/15/2013

Hi chewy,
Just one more idea for you. While methotrexate is the gold standard and what most RA studies include, there are other drugs that work in a similar manner and might have fewer side effects for you. I've been on two,Imuran and now Arava. Both are daily pills. For me, the small daily dose instead of one big weekly dose has been much better for me. I had no side effects from the Imuran, but it didn't work well enough for me. I had a lot of nausea when I started the Arava, but once I learned to never take it on an empty stomach, and to not let myself get very hungry, the nausea has been tolerable. (My doc also gave me Zofran for really bad nausea, but I hardly ever need it.) it might be worth discussing one of these drugs as an alternative to methotrexate. Good luck!
Caren

deleted_user 10/15/2013

chewylover ...i didnt get the point earlier that some poeple adjust there meds themselves..i was to scared to alter any of them until recently ..the only one i have backed off of is teh prednisone ..just a little ...when you give yourself teh METHO ..do you feel odd rite away ??
sure hope you feel better soon .

Christine26 10/16/2013

Hi Chewy and welcome. So sorry you are feeling poorly in spite of being on DMARDS and biologic. When I was on Orencia which held me for 2 years, I was on Plaquenil and Arava and that worked pretty good for me except after a while I had vision changes right after receiving the Orencia. Anyway that was worked out with changing times of meds around. I don't see the point of being on medication and having so many days out of the week that you are not feeling well. I would be giving the Rheumatologist a call as well and let him know this combo is not working for you. If the doctor does not know, he cannot help you out. You could at least have something for the nausea feeling or switch DMards or the Orencia. How long have you been on Orecia. It seems like not that long. If it is making you ill there are other choices in Dmards and biologics. Hope you and doctor find the answer and correct charges.

Christine26 10/16/2013

To add I have not gone back to a biologic I have stopped, but it has been mentioned by my Rheumatologist since I have been through most biologics. I am on Rituxan now. I have changed back and forth from the various DMards though.

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