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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ever gone off all meds??

lionprincess00
lionprincess00
So I have a couple threads out there detailing my hair situation. I went to the rheumatologist today to discuss the fact enbrel is causing me to loose massive amounts of hair (she's reporting this to the manufacturer btw).

So my vectra while on enbrel, arava, and Plaquenil was 19 aka no real disease activity. She said enbrel may have lowered it and I still do have activity, or perhaps I've made it to a medical remission. I feel good, swelling gone etc, but I still have twinges of pain. Light twinges, and appx one week a month I feel more lowsy than normal.

She suggested going off everything, and since I've been off arava 3 weeks, that means discontinuing enbrel AND Plaquenil. Wait and see. If RA symptoms return, then I have prednisone and my Plaquenil to return to. If it isn't enough I can reintroduce arava as well.

She wants to see if I managed a drug induced remission.

So, my question lol. If you've gone off EVERYTHING, how soon did pain return. A week, two? A couple days? Love bcatz to chime in since enbrel caused remission. Thx all!
altoclef
altoclef
I have read that in PsA, early and aggressive treatment (within the first six months) increases the chances of remission, something that is quite rare with PsA. Not sure how that translates to RA, and I don't remember how quickly you were diagnosed and treated. If you did jump on it quickly, though, that may up your odds. Fingers crossed.
lionprincess00
lionprincess00
First flare 9/9/13
First doc appt 9/30/13
Weaned older baby
First methotrexate December 13, 2013

And played around with different meds since.

So yes, quick treatment, and aggressive from highest metho dose within 3 weeks, to switching to arava, adding Plaquenil and then adding enbrel....since Dec 13 last yr. Maybe it is real remission. We shall see.
2scicrazed
2scicrazed
Broken record. Diet induced remission here for 18 months and counting......
deleted_user
deleted_user
I hope that you are n remission! Good luck!
Dreamchaser-Linda
Dreamchaser-Linda
I got sick of all the drugs, went a whole summer happy and drug free. Lasted 3 months got a flare that lasted a year and had to continue the RA drugs again.

Lin
lionprincess00
lionprincess00
Well I want to throw out there I do NOT think I'm in remission. My shoulders hurt, my jaw is tight, and I feel pain twinges in certain hand and toe joints. It's a muted feeling, but there.

I read Plaquenil has a 30-60 day half life, arava has a half life of about 2 weeks, and enbrel 100 hrs give or take.

So Plaquenil isn't out of the system until an avg 315 days or 10 months
Arava isn't out for an average of 98 days or appx 3 months.
Enbrel an avg of 700 hrs or about 1 month.

So it's feasible people, like in Dreamchasers sake, feel ok for months off meds until they finally wear out of the system and you find yourself in another flare.

I suppose by late July my pain will be kicking into high gear if I'm not truly in a remission.

Side note, does these long half life's freak out anyone else? 10 months to rid your system of Plaquenil???!!! That's nuts!
nonightshades
nonightshades
it freaks me out, i've been so tempted to stop it but haven't had the guts to do so. i am not in remission. I can manage with diet but when i do the weight falls off of me to the point that i don't look healthy. Case in point, Sunday morning my weight was 158 (6', small boned) and you could see every rib, my hip bones, etc. I don't think that's good so I've increased my intake of breads, beans and this morning was 164 but in doing so all fingers have stiffened, shoulders popping, elbows getting sore. My shirt size has gone from XL to M this past year. I'll figure it out, the correct balance I mean but I know that within a year or so it'll have to be without the plaq. Please keep us updated lion.
deleted_user
deleted_user
When I got off all of my meds, I changed my diet completely (no nightshades, no gluten, clean eating). That helped me with not having any pain whatsoever. I also began juicing, took supplements and did Pilates. I still follow this routine and it has done wonders for me. Have you considered seeking alternative medicine treatment? That helped me a lot. My hair was falling out in chunks and had all of the other horrible symptoms when I was on prednisone so I seeked a naturopathic doctor. Just make sure you have a plan when you're off all meds because you don't want to return back to them. Good Luck! :)
Kimberley97
Kimberley97
Dr wanted to test me out one time because I'm sero neg and he got to thinkin mayb I didn't realy have RA. WORSTmistake EVER!! I was curled up crying like a baby after about 2-4 weeks without meds and took me forever to get it under controll. Haven't been off since and got a new dr immediately blessings to you
Christine26
Christine26
My Rheumatologist tried to hold off on my Rituxan last year and my Nutritionist doctor tried to manage the Ra via Gluten free diet and she tried to have me hold my biologic which as injectable at the time. I did not notice a difference in pain and in I was calling the Rheumatologist to get an appt. quick to get a Rituxan appt. With the injectable biologic I had to give in and take it as I could not hold out but for 2-3 days after the med was due.