Sunday, March 22, 2015

Otezla, Apremilast, a truly effective and remarkable advance for autoimmune disease

My son who has psoriasis, psoriatic arthritis and ankylosing spondylitis diagnoses, started Otezla in mid September 2014. It has been a medical miracle for him.  Nothing he has tried before has worked as quickly nor as effectively. For the first time in a decade, he can freely turn in neck and flex his back. His psoriasis has cleared. For first time in a decade he can pick up a full milk carton or a full pitcher of water.

This morning he laid on the grass on his side resting his head on hand, elbow in the grass reading the Sunday morning comics. What's so special about that?  For a decade his back and neck have been frozen in place. He had to sit in a special straight back chair or lie in bed as his only two "activity" centers. He was comfortable no other places. Our family room TV had to be placed at a precise height and angle so he could see it.  he could no more twist his head/neck to read comics or lie down in the grass than he could fly to the moon.

He can stand in one place for up to 10 or 20 seconds. He runs again instead of a slow pain filled walk. His inflamed lungs are completely normal. He no longer has to worry about odors spasming them shut. In fact he has had NO ASTHMA since he started Otezla. He can sing again. He can talk freely and at length. For a year and a half, he was without a voice due to inflammation in the tendons of his voice box and lungs. He can whistle again! Last week he whistled along in perfect synchrony to the Andy Griffith theme song he heard on one of those old time TV channels.

He is still disabled. He tires easily. His voice volume is not completely normal. He has more flatulence than before Otezla and he did have nausea for the first couple of weeks after taking the pill in morning and evening. BUT he did NOT lose weight. He actually gained weight and now some muscle mass which for his is good. He has been rail thin for a decade. He was never anything like overweight but within a year or so of the first diagnosis, his once athletic 20 year old body melted away to war orphan  thinness, so losing weight on Otezla had been a concern.

Previous to Otezla my son had tried every TNF alpha inhibitor, Enbrel, Humira, Simponi, Remicade, Cimzia. Enbrel reversed his symptoms for a two or three months before it stopped working.

High dose Remicade (seven vials for 120 lb body) infusions every six weeks worked to reverse his symptoms and was the previous best medicine for him. Its effects and benefits continued for about six years before this biologic finally failed him. He took the DMARDS,  Imuran and sulfaslazine with the Remicade to help control symptoms and to help prevent neutralizing antibody formation (perhaps why Remicade retained efficacy for those six years).  During the infusions he was given solumedrol and tylenol as a preventatives for possible scary adverse reactions. To obtain the infusion he was forced to sit in a cancer clinic for three to four hours while the Remicade slowly dripped into his vains. Then he was on a roller coaster of better and worse symptoms. After the infusion he was good to great for a few weeks until in the last two weeks before the next infusion the pain and symptoms started to return. Our family had to plan any outing for the week or two after infusion.

With Otezla, he takes PILLS. Two per day--12 hours apart. There are no more trips to the cancer clinic. No infusion with risk of site infections or site reactions. No medication he has used so far has been so easy. A pill is what we were all hoping for. That is what we now have.

Otezla's mode of action is to block an enzyme, PDE4, that degrades a "good guy" molecule called cAMP which lowers inflammation cytokines including IL-23( a real bad guy for psoriasis). The more cAMP in our bodies the better for reducing autoimmune symptoms.

After reading about Otezla side effects on line, I expected not much from this medication except a lot of nausea, possible depression etc  for a medication that was supposed to be not so effective. Our only hope was that it would be a bridge to get him our son to the time when the FDA finally approved the new anti IL17. But we were desperate. My son's Remicade failed last Spring. His pain, his inflammed lungs, his neck and back were all quickly getting worse. We tried Cimzia in the summer. Not much help. It stopped working at all by late August. By mid September I was in a state of fear again for my son. Without an effective treatment for the inflamation, he not only is in severe constant pain "in his bones" and joints but worse he cannot breathe. He simply cannot pull air into lungs. Within a day or two of starting, his rapid decline stopped--period. No other medication had worked so quickly. Within two or three weeks his symptoms had declined to a point that it took two years for Remicade infusions to match. He has continued to get better and better.

For us Otezla is a true medical miracle. it made not work as well for you or your loved one but it is certainly worth a try.

NOTE 1: Remicade infusions cost our insurance company nearly 70K a year. Otezla is 24K a year. My son was able to stop using Imuran completely--talk about side effects check out Imuran! He still takes sulfasalazine with the Otezla.

NOTE 2: My wife who was diagnosed with PsA last year has not been able to take Otezla yet. Her current insurance company requires her to fail at DMARDS, Enbrel and Humira first. So far DMARDS sulfasalzine (red eyes, exhaustion) and methotrexate (moderate help) have failed to stop her downward spriral. Enbrel only helps but has not reversed her symptoms like Otezla did for my son. This weeks she starts Humira--which did absolutely nothing for our son. She has now been through a year and a half of worsening symptoms and pain, she needed a cane for many months, thanks to Congress allowing insurance companies to force patients to suffer through all cheaper alternatives before insurance fat cats allow patients access to effective meds.