Health Boards
Mon-28-08-2017, 19:37 PM
Hi all -
I just wanted to introduce myself and share my story in a succinct manner.
- Diagnosed with psoriasis in 1988 after a bout of pneumonia. I was 17 and it was awful.
- From 1989 to 2004, I had my own skin lamp. It was huge and felt like a physical and mental anchor. My condition was so bad that I would have to take it home with me on breaks from college (fortunately I went to school only an hour away). It was ok - the natural sun was better - but it helped keep things in check. It did nothing for my scalp. Looking back on this period, I am not sure how I made it through. I wanted to study abroad, live in NYC, etc. but the need for this lamp made those plans next to impossible.
- In 2004, I moved to Florida from Atlanta. I got rid of the lamp as the bulbs were done and I just didn't feel like dealing with it anymore. From 2004 - 2011, natural sun and various creams helped a little. I guess I just grinned and bore it.
- In 2011, my skin got really bad and I took the plunge with Humira. Within a few weeks, I was getting clear.
- In 2015, plaques returned to my legs. I started on Otezla along with the Humira and that did the trick.
- In 2017, I had to switch insurance and my new carrier (Florida Blue) would not cover Humira and Otezla. So my derm switched me to Stelara which was a complete failure. The dosing intervals were too far apart and the plaques returned in full force to my legs.
- I went back on Otezla and decided to fight the insurance company but it's a difficult battle. It will only approve 1 biologic.
- So now, I've just begun Cosentyx. I had the first two doses last week. Haven't seen much improvement and my plaques are itchier than ever. I am hoping I have good results. Been kind of lethargic from it and usually I am pretty high energy.
My derm wanted me to try Tremfya (a new med from Jaansen) which was approved in June. Two other derms had never heard of it so I opted not to be one of the first to try.
I should also mention that I have been self-employed since 2001. I was on my wife's corporate plan from 2005 to 2011. However, when we were done with Cobra, trying to get insurance was such an uphill battle. Fortunately, Obamacare kicked in right when I needed to get a new plan and that allowed me to get my meds covered. Otherwise, no carrier would insure me.
I can't afford $25,000/year in meds but I can afford good insurance. However, our system is so messed up that it's just hard to buy it no matter if you can afford it. I have no clue if Florida Blue will approve the Cosentyx (especially since we're in appeal on the Otezla - I don't even know how to cancel an appeal or what number to call to do so!). It is such a mess and new legislation doesn't seem to address any issues of mine.
So anyway, greetings. Please send some good vibes that Consentyx is going to work for me! Thanks,
Jonathan
I just wanted to introduce myself and share my story in a succinct manner.
- Diagnosed with psoriasis in 1988 after a bout of pneumonia. I was 17 and it was awful.
- From 1989 to 2004, I had my own skin lamp. It was huge and felt like a physical and mental anchor. My condition was so bad that I would have to take it home with me on breaks from college (fortunately I went to school only an hour away). It was ok - the natural sun was better - but it helped keep things in check. It did nothing for my scalp. Looking back on this period, I am not sure how I made it through. I wanted to study abroad, live in NYC, etc. but the need for this lamp made those plans next to impossible.
- In 2004, I moved to Florida from Atlanta. I got rid of the lamp as the bulbs were done and I just didn't feel like dealing with it anymore. From 2004 - 2011, natural sun and various creams helped a little. I guess I just grinned and bore it.
- In 2011, my skin got really bad and I took the plunge with Humira. Within a few weeks, I was getting clear.
- In 2015, plaques returned to my legs. I started on Otezla along with the Humira and that did the trick.
- In 2017, I had to switch insurance and my new carrier (Florida Blue) would not cover Humira and Otezla. So my derm switched me to Stelara which was a complete failure. The dosing intervals were too far apart and the plaques returned in full force to my legs.
- I went back on Otezla and decided to fight the insurance company but it's a difficult battle. It will only approve 1 biologic.
- So now, I've just begun Cosentyx. I had the first two doses last week. Haven't seen much improvement and my plaques are itchier than ever. I am hoping I have good results. Been kind of lethargic from it and usually I am pretty high energy.
My derm wanted me to try Tremfya (a new med from Jaansen) which was approved in June. Two other derms had never heard of it so I opted not to be one of the first to try.
I should also mention that I have been self-employed since 2001. I was on my wife's corporate plan from 2005 to 2011. However, when we were done with Cobra, trying to get insurance was such an uphill battle. Fortunately, Obamacare kicked in right when I needed to get a new plan and that allowed me to get my meds covered. Otherwise, no carrier would insure me.
I can't afford $25,000/year in meds but I can afford good insurance. However, our system is so messed up that it's just hard to buy it no matter if you can afford it. I have no clue if Florida Blue will approve the Cosentyx (especially since we're in appeal on the Otezla - I don't even know how to cancel an appeal or what number to call to do so!). It is such a mess and new legislation doesn't seem to address any issues of mine.
So anyway, greetings. Please send some good vibes that Consentyx is going to work for me! Thanks,
Jonathan
to Psoriasis Club.
It's not as good as Stelara for psoriasis but it's got rid of psoriatic arthritis for me which is what I needed sorting the most.
