Stelara and Psoriasis

Last year, I started getting a shot called Stelara for my psoriasis.  Psoriasis is an auto-immune disease.  Where normal skin regenerates every 30 days, in the patches where there is psoriasis, that process can be sped up to every three days, making you have awesomely dry skin.  It is commonly found on the joint areas, like elbows and knees.  However, it can also grow in places where there was trauma to the skin, so imagine needing to be very careful while shaving.  I am very lucky that, on me, it generally sticks to my elbows and arms.  I also don't have it on my scalp, so I consider myself very lucky.  I have met people with it over almost every inch of their body.  I cannot even imagine how painful that would be.  Psoriasis is an incurable and not well-understood disease.    

Anyway, psoriasis is especially difficult if you're a pole dancer because traditional "fixes" include very heavy creams and ointments.  Makes you slide right off that pole.  If you had told me five years ago that I would not be slathering lotion on myself on a daily basis because I would be a pole dancer who needed my skin to stick, I would have laughed at you.  Some medications are also steroids and thin your skin.  You don't need your skin to slide right off on the pole either.  Another helpful treatment for psoriasis is exposure to the sun (helpful for skin cancer as well).  Since I didn't have time to come to the doctor's office for light box UV treatment, I did talk him into allowing me tanning booth time as an alternative.  Even though it's not the right kind of UV exposure, it still helped a little.  I also found that when I lost weight, my psoriasis was almost completely gone.  Stress is also a factor and my psoriasis coming back also could have been connected to very stressful things going on in my life around the same time. 

My biggest concern about taking Stelara is that it is an immuno-suppressant.  The last thing I need, especially now that I sit on BART almost two hours a day with lots of icky germs and coughing people, is to be more prone to catching a bug.  I have found, though, that staying somewhat active and taking echinacea have really kept me pretty healthy.  My doctor did say he didn't notice people getting sick more often on Stelara, but that they may stay sick longer if they did happen to catch something (and I noticed the same thing when I first started the shot but feel like I haven't been really sick in quite awhile -- knock on wood, that was not a challenge, Universe!).  I find if I get that feeling of itchy throat or a couple of sneezes, I take some Zicam and go to sleep early and I'm good to go.  

The bigger issue has been that my insurance company now deals with my shot differently (thanks, Obamacare!!).  It is no longer a "pharmacy" item, it is a "medical" item.  So it takes forever to get it approved and they are often late in getting it to me.  I only need to get this shot every three months but it is commonly two to four weeks late thanks to the incompetency of the insurance company and the crappy pharmacy they force me to use.  When the shot is late, the psoriasis starts to return and it often won't fully clear that cycle.  Getting the shot is also time consuming.  I could give myself the Enbrel and Humira shots at home.  Stelara requires me to go into the doctor's office.  And the office is not near my home or work, so it's one more thing on the to-do list.  That kind of sucks.  

Anyway, so if you want to check out some really bad before pictures, you can check out the link above (or you can look here).  And here are a couple of photos from this month.  My before-shot photo on November 4th and my after-shot photo today (the 19th).  Yeah yeah, you probably can't tell a huge difference but I can!

"Before"

"After"

Stelara For The Win

Last March, I wrote about switching to Stelara shots for my psoriasis.  I was worried about Stelara.  It is a pretty heavy immuno-suppressant, but as a pole dancer unable to use heavy creams or ointments to treat my skin condition, I was willing to give it a chance.

Well, eight months in, I have to say I like it!  I had my first shot in early April of 2012.  In the beginning, I got a shot every month.  Now I only go in every three months.  With Enbrel and Humira, I was able to give myself the shot at home with an epi-pen type device.  With Humira, I do have to go into the doctor's office, which is a little less convenient.  It also forces me to pay an office visit co-pay.  However, I have been able to qualify for assistance from the manufacturer of Stelara, so I haven't had to pay a co-pay for the drug at all. 

About two shots ago, my insurance changed how it handled the billing of the drug, so I was a month late in getting that shot.  I noticed a huge difference.  Even when I finally got the shot, my skin never fully cleared that round.  However, with the next shot, my skin went back to being clear. 

I haven't noticed being sick more often.  I do notice staying sick longer, though, if I happen to catch a cold.  So I try to be very careful around other sick people and I take echinacea to hopefully boost my immune system (although, one would wonder if taking something that supposedly boosts your immune system when you're taking something to purposely suppress it is counter-productive). 

I did find out the hard way how expensive a Stelara shot is if you lose your insurance.  I was told in September to look for a new job.  My former boss had offered to pay my medical insurance for the month of October.  He then "forgot" and canceled it without telling me.  The pharmacy mailed the shot to my doctor's office (waaaay earlier than it needed to be....Curascript mail pharmacy is really a shitty pharmacy; if anyone is looking for a mail pharmacy, I do not suggest them).  The claim was denied by my insurance company and I saw online that I was being charged almost $12,000 for that shot.  I opted for COBRA (with an over $700 premium) to avoid that bill. 

Anyway, these days my skin is pretty clear, and I don't have the lung problems like I did with past medications.  I am overly aware of people who are sick around me.  I also have to be super careful because I am more apt to catch tuberculosis.  But for the most part, I just live my life and am happy to have "regular" skin again. 

March 25, 2012

April 5, 2012

April 13, 2012 (after first shot)

May 3, 2012 (day of 2nd shot)

The Psoriasis-Stelara Modification

So catching everyone up on this whole mess...I started Enbrel in July 2011 to help with my psoriasis.  Pretty much nothing happened.  I switched to Humira in October and pretty much nothing happened (except I started getting a bunch of upper respiratory infections).  You can see my last Big Bang Theory themed update here:  http://lolorashel.blogspot.com/2012/01/psoriasis-humira-conundrum.html

So, now...drum roll please...I'm going to try Stelara.

I don't want to take Stelara.  

Why am I doing this to myself?  All of these shots are immune-suppressants that cause me to get sick.  All for clear skin?  It sucks because my normal therapy for psoriasis is super thick and greasy lotions or ointments.  Well that just doesn't work for pole dancers!!  [Insert foot stomp and minor tantrum here.] 

Some of the serious side effects of Humira are:

Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue; unusual hoarseness); black, tarry, or bloody stools; blood in the urine; burning, numbness, or tingling; butterfly-shaped rash on the nose and cheeks; change in the appearance of a mole; chest pain; confusion; fainting; fast or irregular heartbeat; mental or mood changes; muscle pain or weakness; new or worsening joint pain; open sore that does not heal; persistent pain, swelling, or redness at the injection site; red, swollen, blistered, or peeling skin; severe or persistent headache or dizziness; severe or persistent stomach pain; shortness of breath; signs of infection (eg, fever, chills, or persistent sore throat; persistent cough; flu-like symptoms; warm, red, or painful skin; increased or painful urination); swelling of the ankles, hands, or feet; tremor; unexplained weight loss or weight gain; unusual bruising or bleeding; unusual lumps; unusual skin growth or other skin changes; unusual tiredness or weakness; unusually pale skin; vision changes; vomit that looks like coffee grounds.

Sounds pleasant!  

Some of the side effects of Stelara are:

Stelara may increase the risk of infections and reactivation of latent infections. Serious bacterial, fungal, and viral infections were observed in subjects receiving Stelara.  Serious infections requiring hospitalization occurred in the psoriasis development program. These serious infections included cellulitis, diverticulitis, osteomyelitis, viral infections, gastroenteritis, pneumonia, and urinary tract infections.

Individuals genetically deficient in IL-12/IL-23 are particularly vulnerable to disseminated infections from mycobacteria (including nontuberculous, environmental mycobacteria), salmonella (including nontyphi strains), and Bacillus Calmette-Guerin (BCG) vaccinations. Serious infections and fatal outcomes have been reported in such patients.

Stelara is an immunosuppressant and may increase the risk of malignancy. Malignancies were reported among subjects who received Stelara in clinical studies.

One case of reversible posterior leukoencephalopathy syndrome (RPLS) was observed during the clinical development program which included 3523 Stelara-treated subjects. The subject, who had received 12 doses of Stelara over approximately two years, presented with headache, seizures and confusion. No additional Stelara injections were administered and the subject fully recovered with appropriate treatment.

Serious infections and possibly cancer?  Sign me up!  I'm also nervous because it specifically says they don't have a lot of information on people who get allergy shots and I'm over three or four years into my allergy shot commitment.  

I feel like I'm on a train that I can't quite get off yet.  I was hoping I'd lose a bunch of weight and not need anymore medications.  That has not been the case.  In fact, now that I'm reading more about Humira, that may have been one of the things working against me.  I am a little more nervous about Stelara because, even though it has been approved by the FDA, there are no long term studies on how it affects people.  In ten years, my arm could fall off and I may have to say, "oh I'm guessing that was because I took Stelara back in the day!"  At least I am sticking with somewhat known medications.  My doctor did offer to put me in a study, which would have given me free treatment.  But then I'm a human lab rat.  No thanks!!  

Anyway, here are some photos to show how this stupid disease can look even from day to day.  One day I'm horribly red and disgusting.  The next day, not so bad.  But I still have not had clear skin in almost two years -- and this is the worst outbreak I've had in longer than I can remember. 

March 3 (before my Humira shot):

March 4 (day after final Humira shot):

March 5 (two days after Humira):