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):

The Psoriasis-Humira Conundrum

I've been watching too much Big Bang Theory.  I freakin' love that show.  I just ordered a bunch of books off Amazon to help me learn bigger, cooler, nerdier words.  :-)

So I'm on here whining about my psoriasis about once a month, I guess.  I first started Enbrel shots in late July.  This was supposed to be the miracle drug.  You shoot yourself up, suppress your own immune system, and VOILA!  Clear skin!  You can check out my two-week update which includes photos here:

http://lolorashel.blogspot.com/2011/08/enbrel-and-psoriasis-two-week-update.html

That wasn't working for me so my doctor then changed me to Humira.  Let's see if we can make you even more tired and apt to catch colds....all in the name of beautiful skin!  You can read that October post here:

http://lolorashel.blogspot.com/2011/10/psoriasis-and-humira.html

So now I am four months into the Humira shots.  Sure, my skin is clear-er than it was.  But its not completely clear.  At my last appointment (barely two weeks ago), my doctor brought up the possibility of taking another step up and trying a drug that really has only been around for a couple of years.  You can read about that here:

http://lolorashel.blogspot.com/2012/01/found-motivation.html

So basically, be an experimental rat.  I'm thinking no thanks.  You want to know when my skin was at its best?  When I was thinner.  So I am going to stick to this Paleo plan, the Twirly Tuff workout and probably just stop taking the medication altogether.

I am going to include a couple of recent photos.  From the pictures, it looks pretty clear.  But a lot of the skin is still rough and some days, its redder than others.  I really have not had a break-out this bad since before my weight loss.  So I have to believe that losing weight is the key -- not drugging myself up.

And here's a picture from June 2011:

Progress?  Yes.  Full victory?  Not yet.

Psoriasis and Humira

So I am currently three months into taking Enbrel shots for my psoriasis.  Enbrel is an immune system suppressant.  My last update was at two weeks:  http://lolorashel.blogspot.com/2011/08/enbrel-and-psoriasis-two-week-update.html

At two weeks, everything was going well.  My psoriasis had easily gotten 50% better.  But for the last two and a half months -- nothing.  So my doctor is switching me to Humira. 

According to my doctor, it goes like this...

Side effects:

Placebo:    ***
Enbrel:      *****
Humira:    ******

Effect of medication on psoriasis:

Placebo:   ***
Enbrel:     *****
Humira:   **********

So if that makes any sense...there might be a little more chance of side effects (oh, only infections like TB or cancer like Lymphoma), but a much higher chance of the medication working.  The only side effects I really dealt with while on Enbrel were headaches and being sleepy.  Mostly those happened in the beginning and then tapered off.  Maybe that meant the drug wasn't working??  Since the shot is given directly into the skin, my gastric bypass wouldn't have anything to do with absorption issues. 

Anyway, I took my last Enbrel shot on Monday.  The Humira comes on Friday.  I was taking two Enbrel shots a week.  With Humira, I take two shots on day 1, one shot on day 8, one shot on day 22, then one shot every other week.  So that will be nice...not having to shoot myself twice a week.  It burned and I wasn't a fan.  I just hope I don't have to deal with being super tired and getting headaches again.  That wasn't fun.

I did find an awesome lotion made by a local guy at a Farmer's Market.  It has been helping a lot this week.  Although psoriasis is a "smart" disease and it gets used to whatever magic product you find and it eventually stops working so who knows how long it would have helped anyway.  The stress in my life hasn't gone down at all (if anything, it's going up), and I'm sure that's not helping the disease either. 

 So let's see how Humira works!

Latest photo (certainly better than when I started, and looking especially good today because I cheated and put on lotion even though its a pole day):