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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Roller Coaster Ride

WarriorGal
WarriorGal

So....I've been waiting since May for Orencia to work. Three infusions so far, another 7/27 and on Prednisone and Nuycenta in the meantime. I try to take the LOWEST amunt of prednisone possible and supplement with Nuycenta. 


Soooo....when I have a good day, I tell myself: "YAY! Orencia is working!" Then I have a bad day and know it's NOT.  And it's an emotional roller coaster.


Just wanted to vent that.  AND, I just learned from a freind HERE on DS that in Canada, docs don't make RA patients stop their meds for infections!!!  Something else to be REALLY pissed about!(And no lectures please about anger!)


I WILL say that when the C. Dif did not clear up with the meds my primary precsribed and I went to an infectious disease doctor, he said: "Take your Orencia and let ME worry about curing this C.dif infection!" So, that's when I resumed Orencia. 


My Canadian friend suggested that the only difference is not medical but U$A fear of litigation! Could very well be. I am told I need to take PROPHYLACTIC anti-biotics before having any dental work done (I can't even remember why). I do not take it. When I get to the dentist they ask me: "Did you take your anti-biotic?" And i say "Yes."



oceans11
oceans11
That's pretty interesting in regards to the difference between the Canadian doc's & US doc's. I also read (not sure if it was on here on not) but when it came to MTX & alcohol, in the US we're allowed at very MAX like 1 or 2 beers a week, yet in Europe they're allowed 1 pint a DAY!! I'm not 100% sure that's fact or just random internet junk, I would love to give a source. I just found it interesting how restrictive they are here in the US, but maybe that's not always a bad thing.
WarriorGal
WarriorGal
I guess if drinking alcohol is important to you and you're on MTX, you'd need to research that. Not an issue for me on both accounts: n to on MTX and I don't drink!

As for the Canada/U$A difference on DMRADS, the U$ approach is far more cautious. They are telling us to stop because of the POSSIBILITY that we would not be able to properly fight an infection. I will never stop for an infection again, nor will I take antibiotics again, unless I am near death (and then nothing will matter anyhow!)
mikejakus
mikejakus
Did they get your C Diff in check? I sure hope so it sounds really bad, I had no idea what it was and had to look it up. What a horrible ordeal you have been going through. I hope the C Diff is gone and you are feeling better. I am also rooting you on with the Orencia coming around and working for you again. Big ole hug for ya..:)
happychat
happychat
Oh the rollercoaster ride. I am sitting right next to you. I have been sick for 3 plus yrs but just diagnosed in April of this year and it sucks! Everytime I come off of prednisone within a wk. I am back on it. The doctors want you to watch your wieght, exercise, eat healthy, stop smoking ( I know it's bad I am a critical care nurse for pete's sake) but I do the best I can everyday. Some are better than others as you know . I went to my rheumatologist 2 wks ago thought I was doing good so did he and then within a couple days BAM here comes the pain. Ugh!!!!!! Is all I can say.
WarriorGal
WarriorGal
mikejakus - yes the C.Dif is now cured, thank you. It was quite an ordeal. It was treated and I was ok for a week and then kit relapsed which is quite common. then I went on a SIX WEEK treatment! It's finally gone for good for now....

happy chat - what are they giving you other than prednisone??? have you started any biologics??
californialynn
californialynn
RE ".....Just wanted to vent that. AND, I just learned from a freind HERE on DS that in Canada, docs don't make RA patients stop their meds for infections!!!": I don't know that that's entirely true. I have a friend who's an RN in Canada and she says that it depends on the type of infection.
WarriorGal
WarriorGal
I had forgotten, but that's why - my knee replacement. But I will continue to let the think I am taking it and NOT.
happychat
happychat
WarriorGal I take methotrexate it's been 8wks today. I know I just need to be patient. But something changed the other day. See they labelled me an addict a yr. ago and put me on a Butrans patch for my pain and this was before I finally got my diagnosis this year of RA. Anyways I was having really bad palpatations I did my research and medication elimination myself bc no one else was interested in helping doctor wise. It took 3 wks and 3 days of withdrawls from that stupid patch and now suprisingly my pain medication works again at half the dose. See the Butrans patch blocks the opiod receptors so my medication was not able to help. I love motrin the best but bc I have been taking it for 9yrs for pain control bc no one would listen my kidney doctor told me no more NASAIDS. I do not want to end up on dialysis bc of it. I have enough issues. Lol