Boy do I hear you! I'm likewise very frustrated having failed methotrexate Enbrel Humira Orencia Rituxan and actemra. I've had to taper my prednisone (down to 6 mg currently) due to severe avascular necrosis with multiple fractures due to steroids. I'm currently bedridden in pain due to severe flare right now. I'm waiting to start imuran next. My rheumy tells me I'm the most severe case of RA he's seen in over 30 yrs practice.

I have never noticed anything that causes my flares. Just one day the drug just stops working if it even ever worked at all. My rheumy says I have a very recalcitrant immune system. Makes me worry that nothing will ever work for me.

Sorry for such a downer note. I'm in a lot of pain right now. I turn to this site as well for support. Even with all the negative med trials I do try to keep hope that someday something will be found. Hang in there. I do Accupuncture and meditation to help me deal with the pain and keep my opiod use as low as I can tolerate.

Wow! We need to start a "worst case the rheumatologists has ever seen" club!

I wonder if our diseases were under control, if we would not come to sites like this? I'm sorry you are both doing so badly, and I guess I am sorry for me, too.

Maybe we need to be in those trial groups that turn off the gene, or use our own blood to stop the nodules from being formed?

Rub a dub dub, we are all in the same tub! Or something!

rawontbeatme - that's a good positive profile name. Make it work! I hope it does. First of all, I think a better way to look at drug failures, is that the drug failes you, not the other way around. More for poolgirl.

My thoughts on TNF inhinitors is that if one fails you, it's likely they all will. Orencia and Actemra seem to bee iffy drugs. I know a couple of people who have multiple years with Orencia, but not mant. Actemra seems to be one of those specialty drugs that helps a few, causes great problems with another group, but I don't know anyone who's lasted long on it.

I have had great success on Rituxan, and hope that you'll have the same good fortune. How long have you been on it? It took a while to get max benefits, for me, but I'm tolling along now. With regard to flares, I don't think I ever had any. Maybe earlier this year, where I was pretty sure I was having increased RA activity when I didn't expect it, but I always looked at RA as always being on, at some level, and it was a matter of how high the dial was set (never 11). Once Rituxan began to work, the dial has pretty much been set at zero.

Do you take a DMARD? I was failed by methotrexate, and happened to be taking Arava when I was also failed by Remicade (and, therfore, all anti-TNF drugs), and drugs like paquenil and Sulfasalazine never had an effect. So, I fly solo on Rituxan. No prednisone or opiods, some ibuprofen, but that's more of an all-purpose thing, rather than RA specific drug. I hope you can begin to taper from prednisone.

Best wishes.

I'm one of those you'd love to trade places with. I'm in drug-controlled remission with low dose MTX and Humira for 6 years now.

I won't bore you with the details, but the reason I didn't go to a biologic right away is because I have latent-TB. Because I'm older, TB treatment is not an option UNLESS my TB activates.

When my max dose MTX started failing, I begged my rheumatologist to let me try a biologic and after much convincing, he did. [Lots of caveats here.]

Before I went on the biologic and I was in really bad shape, there was only one thing that helped keep me together. Mind you, this does NOTHING about arresting the RA damage process. It only helps reduce the inflammation and the associated pain.

Kenalog injections in the joints.

You can only get 2 shots per joint per year. Absolutely must be done by a sports medicine orth surgeon because no other type doctor really knows how to give this injection. It's a VERY painful injection unless given by someone who does it day in and day out.

The Kenalog intra-joint injections are a much better solution than Pred pills in my book.

I totally neglected to answer your question: "What triggers my flares?"

I think there are many reasons.

~ Stress, either emotional or physical.

~ Overusing joints: an elevator was broken recently and I had to walk up 3 flights of stairs. By the next morning my knees were killing me, inflamed........it's been over 3 weeks now and I'm just getting back to MY normal.

~ Taking other meds that might interfere with the efficacy of the biologic.

~ Concurrent illnesses or allergies.

~ Emotional stress [family, work, life in general]

Thank you all for the support and answers - they all helped more than you know. Or maybe you do know!!

Poolgirl - I am so sorry for your pain. I wish I knew the answers to fix this terrible disease!!

crookedstick430 - thank you for sharing! I am on DMARDs, subcutaneous methotrexate weekly. For pain I only use neurontin and Cymbalta. I have an unusual RA with joint pain and inflammation on joint ultrasound, but they do no swell. I have only had my first 2 Rituxan infusions.

californialynn - I feel my triggers are the same. I just didn't really know about the joint overuse. I started a pretty strenuous work out program because docs are always fussing because I do not exercise. Within a week the flare started. :(

MarleneJ - thanks for making me laugh during my pity party!!

Pity parties are the worst! In 2010, after my failed foot reconstruction surgery, I was showering one night and looking at my feet. I just started hating what RA had done to my body, and started crying because I knew it would get worse! The more I thought about, the more I cried. Then I started sort of screaming/crying.

The next thing you know, I could not move. I could not shut off the shower, or get out of the shower, I could only scream. My husband heard me and came and turned the shower off and pulled me out of the shower, towelled me off, and carried me to bed. He held me the whole night.

In the morning, I just felt God saying, "No more pity parties!!" I've tried to remember that when I get down about this disease. But sometimes I get so tempted! Humour does help, I'm glad you realized I was trying to make you laugh, and not mocking you at all.

As for me, I do have some bad days, including a few days ago, I was just weeping instead of sleeping. But in the morning, I went back to "No more pity parties" and I've been doing more or less ok, in spite of the pain.

Where there is life, there is hope! I think! LOL

I had a few of those pity parties early on. Then I rationalized it was wasted energy. Still, from time to time, I soooooo wanted to have that darned party.

But here's what I do: I get up, grab my dog, and go for a walk. The movement activates endorphins and this helps getting rid of the blues. Just get up and MOVE.

As CaliforniaLynn said...anything can trigger a flare.

Stress, Stress....Stress.....not getting enough sleep. Emotional stress. I'm only on MTX injections (started with oral) and they been great up until a few weeks ago.

We're self employed and I run an office that should have 3 people running it. We just hired our first employee in years and I am ball and chained in the office 8-5 pretty much handling every phone call, paperwork, taxes etc. I don't take breaks, lunches and I am on Xanax because I get so bad I can barely talk to customers. The first 2 weeks we hired I was doing almost 12 hour days.....I finally had a breakdown. Husband was doing it too but doesn't have RA. That Saturday we both slept in until 9 AM and if that don't tell a story......in 26 years we have only slept in maybe twice til 9.

But I really try to be positive and walk tall and proud. Today is not one of those days for me ;)