RH Visit - Losing hope | Arthritis Information

I had a very long visit with my RH yesterday, well over an hour. and the underlying message was, Enbrel has failed, humira has failed, i am on max dosage/schedule of Remicade and its not working as well as it was, so its up MTX to 25mg, and keep a stash of steroids for when i get a flare, and wait for the next new drug that will treat PA, his estimation is summer 2010. Oh and he added as if it would meke me feel better that although not the most destuctive PA he has ever treated, mine is proving to be the most dificult he has ever had to treat. Lucky me i have the RH stumped

Not the outcome i was expecting. I now have to come to terms with having a long time to go with my disease in its current state. I have lost 50lb in the last 7 months, thought i was close to my goal but he raised the bar on that now i still have 23lbs to go.

i now have to do what i have been resisting for a while and thats talk to my company about options to work from home to reduce fatigue and stress. i work for one of those recently merged banks, its not a good time to ask for special treatment when 30% of the workforce are facing layoffs.

well thats my vent, guess the silver lining is that i am lucky to have a RH that will spend that kind of time with me. And its a confirmation of what i have been fearing for some time.

Vent over.

That's rough Clufus. Sorry you didn't get better news but I guess by the way you were feeling you knew all that. Lets hope either the MTX increase makes some kind of difference or that they have a faster break through with the new meds.

Keep venting- we are here for you.

Hi, our stories are the same, except when Remicade failed me I decided to go back to Humira, with an increase in MXT and added Sulfasalazine and it was the right move. I'm now in RA and PsA clinical remission. Yes, I can tell the difference. Sometimes you can go back to a biologic and it will work. Talk further with your RD about this option. Good luck. Lindy

Clufus Im sorry to hear this. I too have failed with all my meds...currently on MTX and tramadol...I keep coming off MTX too as I have been having kidney infection, I rely on my steroid injections to keep me oing and although they are supposed to last 3 month,im lucky if I get 2 weeks. Its quite soul destroying knowing theres nothing they can give you anymore, maybe they will come up with a miracle drug soon...your RH sounds lovelyDon't give up, Clufus! Lindy has good advice. I am making my way through negative drug results right now too. When the last available drugs fail, I WILL find something else! Do whatever you can to relieve stress, that really effects how you feel.

Good wishes, Clufus. Hang in there!
Let's widen the perspective here a bit and look at your disease as a broader picture.

I see that you were dxed in 2004, so you must be coming onto nearly five years post dx.

I am at nearly four years post dx and have been through much of what describe.

Recently I became aware of a reality that I needed to accept in order to manage my RA better.

The reality is that if you are quite severe RA wise then it can take anything from five to ten years to stabilize your illness.

Not a nice reality hey, but unfortunately it is how it is.

And in our Westernised culture we want it fixed and we want it now. That's how it should happen.

What I found as I embraced that reality for myself, I began to live more of my life again. I stopped fighting it and struggling and instead accepted that we are getting somewhere here but it is very slow progress. It's going to take time, patience and adjusting.

And I was the least patient person is the universe before this disease taught me differently.

Allow yourself to feel sad, that's healthy and part of the process...but then don't give up.

Never give up.

Good luck to you. I have heard about the new IL-6 drugs that are coming out. But in the meantime I wonder if your insurance would let you try the others again?I am sorry to hear all of that, Clufus. I hope more options become available for you really soon.

Much hugs to you.