Sunday, October 14, 2012 Georgia Gramlich asks

Q: Wondering what my options are for a new biological.

Can't be a TNF blocker as Enbrel sent me to the hospital with a stroke and neurilogial damage in 2009. Rutixan didn't work for me. Orencia has had me in remission for 18 months but liver enzymes continued to climb. Took me off MTX, then sulfasalazine, still continued to climb. Took me off Orencia two months ago and did a liver biopsy. Bioplsy came back perfect! After two months off Orencia liver enzymes are coming down. Still in high range but closer to normal, at least they are down to double digits now.

I have come out of remission hard and fast. Can't wait to start something to get me some relief. I know there have been several new biologicals approved in the last couple of years. Interested in hearing how they have been working and what side effects people have had. Sometimes I feel treating RA is like playing Russian Roulette!

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Answers (3)

V, Health Guide

10/18/12 8:50am

Hi, Georgia,

I'm so sorry you had that bad reaction to Embrel. Very scary! My experience with biologics is limited to Humira, which didn't work, and Orencia, which is helping me. I have a friend on Cimzia, but that is a TNF inhibitor, I believe. There is a new drug coming to market soon. It is in pill form, which is amazing in itself. I'm not sure if it is a TNF inhibitor or not. My rheumy brought it up the other day. What does your rheumy say? My RD and I were talking about Actemra on my last visit. That drug is not a TNF inhibitor. Perhaps it would be one you could try?

Blessings,

Georgia Gramlich

10/18/12 9:04am

Rheumy is stumped because I guess Orencia does not have a history of affecting the liver. We visited this week and decided to give me one more Orencial treatment and see what my liver enzymes are in three weeks. I will get it today, I am glad to be getting another treatment, because of coming out of remission. But worried at the same time. I have eliminated 5 or 6 other medications once I went into remission, sure don't want to have to go back there. I know the more I can get off of the better for my liver, and the rest of my body. I went so many years with full fledge out of control RA. The main thing that kept me pushing forward was reading blogs about people who were able to get it in remission. Remission was like a dream come true. In the back of my mind I am scared to death of going backwards.

Have not heard of the one in pill form. I will ask rheumy when I see her again next month. Going to have to keep up with new biologicals coming on the market.

How long have you been on Orencia? It took was 6 to 8 months before I was totally in remission with it. Glad it's helping you and hope every month it continues to help you more.

Thanks

Georgia

V, Health Guide

10/22/12 3:18pm

Hi, Georgia!

I have been on Orencia three months. It is the only treatment that has lowered the inflammation markers in my blood. I still have flares, but they aren't as bad and don't last as long as they used to. My RD told me that it does take six months for Orencia to reach its maximum benefit. I have had untreated RA for so long that I am afraid to hope for remission...but that would be awesome! I do have permanent damage, though, because I am sero negative, and I had a hard time getting a diagnosis. I hope you can take Orencia again. You know, I have heard of people having increased liver enzymes when on Orencia, but I don't know how they can tell which drug is doing it, or which combo of drugs. We take so many pills.

Blessings,

Lene Andersen, Health Guide

10/23/12 12:56pm

wow, you really have been hit hard!Having been in remission and then to go out of it is a hard place to be.

We have a post by Dr. Mark on the different medications available for RA that can give you an outline of the different Biologics.You may want to talk to your rheumatologist about Kineret (although it's not used much, as it's usually not nearly as effective as the other. Biologics) or Actemra may also be an option. In addition to that, there are some of the more traditional DMARDs, but given your history with liver issues, drugs like Arava may not be a good option for you.

Where you're at now may be a position of trying to keep you going until a new drugs get introduced. It's not a good situation to be in, but there are tools that your rheumatologist can use, including prednisone and some of the other DMARDs, maybe smaller doses of what you already tried. This may keep your nose above water (so to speak) while you wait for more drugs to be developed. The good news is that this is happening at a much faster rate than ever before. For instance, there's a new Biologic called the JAK that's currently in the middle of the FDA approval process and it's slated for release fairly soon (which in FDA speak is 1-2 years). It's different than the other. Biologics, both in makeup and in that it will be available in pill form rather than injections last infusion, so it may be the magic bullet for you.

I recommend that you have a conversation with your rheumatologist about thinking outside the box in terms of what to do next. Maybe you will be able to find something that can not just get your nose above water, but perhaps feeling much better. Not all people with RA are able to go into remission, so low disease activity can also be an acceptable goal. I hope you'll find something that can get back on track.

Good luck! Please keep us posted on how things go?

Georgia Gramlich

10/24/12 6:11am

Thanks to everyone for the support you have offered. Good news is that my Rheumy decided to let me have another Orencia treatment. I had also quit taking Cymbalta for my fibro and she is hoping that had been the culprit for the high liver enzymes. She said Orencia does not have a history of causing liver problems. I will be having my blood work done the day before my scheduled treatments now so that if liver enzymes are back up I will not be getting a treatment. So wish me luck. I've had one treatment and do not feel any relieve in the pain yet but I have noticed my fatique is not as bad. I will post again in November and let you know the results. Best wishes to all my fellow RA buddy's!

V, Health Guide

10/25/12 8:50pm

Hello again, Georgia,

I hope you are able to get you treatment! I know a few people who had to stop taking Cymbalta due to high liver enzymes. I think you may have found the culprit!

Best wishes,

Georgia Gramlich

10/25/12 10:33pm

I am hoping so!

Q: Wondering what my options are for a new biological.

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