It seems that I have stirred some interest by asking for thoughts about the drug my rheumy recently started me on, Actemra.
I'd like to give a little more information and ask for everyone's thoughts please:
I participated in a clinical study for Enbrel for treatment of psoriasis approximately 6 years ago. The results were excellent for me, but I had no insurance at the time, so after 9 months, when the study ended, so did my use of Enbrel. Then, about 4 years ago, when I did have insurance, I went to a dermatologist and got back on Enbrel, and things seemed to be just peachy.
But then, the psoriasis started to get worse. So, the dermatologist started me on MTX pills, at a rather low dose (5 mg weekly). A couple of months went by, and we increased the MTX, and so on until I reached the maximum dose that a dermatologist can prescribe, which is (I think) 15 mg. Then she doubled my dosage of Enbrel.
Then the arthritis reared its ugly head. The dermatologist saw my "sausage fingers" and asked me about my joint pains and such, and she recommended that I see a rheumatologist.
So, the rheumy put me on Remicade, and increased the MTX, eventually to maximun dose (25 mg weekly by injection). I stayed on Remicade for 5 months (infusions every 6 weeks or so) and never saw any improvement at all.
Next was Humira. I thought after just 2 months that I had found my "miracle". But, after doing pretty well for about a year, the effectiveness started to wane. So, we doubled the dosage of Humira. Then something strange happened which had never happened to me before. This rheumatologist said to me, "Perhaps you should seek a second opinion. I think maybe I've taken you about as far as I can, and having another brain working on your case wouldn't hurt." So he recommended some other doctors, but I ended up going to one referred by a friend.
This new rheumy tried Simponi, with concurrent MTX 25 mg, to no avail. That went on for 4 months.
That brings me to current time. Since all of the TNF blockers had failed, he suggested that we try the RA drug Actemra, aTL6 blocker, which I had my first infusion of last month. I'm supposed to go in next Thursday for my second infusion. I'm also completely off the MTX for now.
My questions are:
1) Has anyone ever had a doctor (specialist) send them to see another doctor because they "can't think of anything else that might work"?
2) Should I be concerned that all of the TNF blockers failed?
3) Why would he be recommending an IL-6 blocker when there is no indication that it will work? Is he "grabbing for straws"?
4) What's next?
I'm SERIOUSLY getting worried now!