Waiting Game - Will it be Worth it?

As the days click by until my next Rheumatology appointment I have to wonder will any of the numerous experimental treatments be worth it? I am progressively getting worse and have been going through all the grieving steps and am now very close to accepting I may never be better than I am now or may get much worse over time. That being said where do I go from here treatment wise. I was so quick to accept experimental treatments in the past, grasping onto anything stating possible symptom improvement - even trying Rituxan (http://en.wikipedia.org/wiki/Rituximab) - a chemotherapy but one that does not cause hair loss etc. (it is not approved for use in Sjogren's but research has shown it helps) I had 2 treatments - felt horrible for months and months and guess what - no improvement. That was a HUGE step for me - as a nurse I had said I would never try chemotherapy unless there was a great chance of improvement or high cure rate for cancer. I wonder now if I was just grasping for straws and if it was even worth it. I have the lasting reminder of mottled skin that probably will not go away and sometimes think about what damage it has done to me internally. The medication they want me to try next is Enbrel (http://www.webmd.com/drugs/drug-16772-Enbrel+SubQ.aspx?drugid=16772&drugname=Enbrel+SubQ) - which has a high incidence of Lymphoma later - the treatment for that Lymphoma would be Rituxan - how ironic. If I choose to say no to the Enbrel am I also saying no to the chance of getting better?? A hard question with no real answer since there is no guarantee it will even help!