Expanding on my earlier discussion on Actemra

General
1

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!

2

That's really interesting, that the doctor turned over your care to another doctor. I wonder if it might be time to go to a University center or similar where they specialize in Psoriatic arthritis. I know that over time biologics will fail. It may take a short time or a long time.

Why are you off the MTX now? Have they tried other DMARDs instead? If you build up antibodies superfast to the biologics, why not try out different DMARDs or combinations of them? This might be a better long term management strategy.

3

IL-6 blocker may or may not have an effect directly on PsA (the evidence isn't clear) BUT that doesn't mean your docs are guessing. The only Disease that Actemara is a first choice Drug for is a particular form of idiopathic Juvenile arthritis. For every other disease, especially RA it is ONLY being used on label when the patient has failed DMARD mono-therapy and at LEAST TWO biologicals. The made a very interesting discovery along the way. When there are actual antibodies preventing the TNF inhibitors from working actemara has a much higher efficacy rate not to mention improvement rates greater than 20%

There has been some suggestion that the failure of traditional Biologics because of antibodies is a good thing, Following IL-6 blocker therapy everything works better. In the US alone there are close to 180 registered studies trying to figure this thing out (not to mention what is happening in labs all over) They are all involving RA of course because frankly there are a lot of RA sufferers. Its pretty hard to find a highly symptomatic PsA patient that is clean of other complicating conditions.

What this amounts to Larry is that YOU are perfect for what appears to be as exciting a therapy since the introduction of Enbrel. maybe even close to that of Aspirin.

From what I am hearing from some of my research buddies is that if the IL-6 - anti TNF relationship can be defined and where and why those antibodies are produced figured out, we are talking a near if not actual cure. AT the very least a vaccine type treatment (similar to what the Shingles vaccine is) that could eliminate the disease for a high portion of the at risk population is possible.

I'm no Pollyanna Larry, but were I in your situation I'd be excited............. the worst that can happen is you will start over on your Bio's. There is a higher chance they will work the second time than the first any way

4

Stoney,

The doctor took me off MTX because Actemra is supposed to be as effective with or without DMARDs, plus I was having severe "next day hangover" problems with MTX. First, I couldn't sleep for 12 hours, then I wouldn't wake up for 24 to 36 hrs sometimes. I'd be in a fog for 3 days, and then, I started having bloodwork problems (increased liver enzymes being the worst).

Probably the luckiest thing for me is that I live in a suburb of Houston, TX, with the Texas Medical Center being only about a 40 minute drive (in Houston traffic!) for me. My rheumy's office is right off the edge of the actual Med Cntr, and he participates in clinical studies, with a CS division right in his office.

5

Lamb,

I read the articles you linked to in your response to my first thread on this subject, and that's pretty much what prompted me to start this expanded thread. Thank you for that!

The fact that Actemra is not FDA approved for PsA in the U.S. worries me some. And, as you stated, progressive joint damage keeps me HIGHLY motivated. My rheumy did an MRI on my left hand, which is the most visibly damaged body part. Looking from the outside, you can see that my fingers are bent and twisted already, and that's after less than 10 yrs with this disease. Dr. wanted to get a "baseline" picture (MRI) for comparison purposes later on down the road. Both of my hips and both of my knees are affected, but the worst of my problems right now is the enthesitis that can pop up anywhere on my body at any moment, and never completely goes away.

So, will just go along for now and see where this road takes me. Perhaps you're right, and I'll be one of the lucky ones! I'm always optimistic!

6

Wow. I am so impressed with your doc’s honesty. I think that it must be difficult to admit your limitations or even that you’ve just hit a wall with a patient’s treatment. Kudos to that doctor.

Everyone has already offered such great advice that I’ll keep my mouth shut. :-I
But I did want to praise your doctor. That’s a class act.

I have my fingers crossed that Actemra is the ticket for you.