I Love My New Dermatologist!

So if you didn't know I have a disease called Hidradenitis Suppurativa or HS for short.  I'll do a post all about this disease later for those who are interested.

I had a wonder Dermatologist in Pennsylvania at Penn State Hershey.  When we moved to Louisiana I asked her for a recommendation but as you can see in the graphic below, there is not a single Dermatologist in this state that knows enough about or specializes HS.

The states in purple have at least one Dermatologist in the whole state that specializes in treating HS.  See all the purple surrounding Louisiana?  Anyone with HS needs to live in one of those purple states(and near a Dermatologist's location within that state)in order to receive effective treatment.

I tried here in Louisiana to find a Dermatologist who could treat me.  It was almost after living here a year(11 months)before I found what I thought was a Dermatologist who had a clue about this disease.  But once I had my first appointment with her, I found I was sadly mistaken.

So I reached out to 4 HS specialists-2 in Texas, 1 in Arkansas and 1 in Mississippi.  Only the one in MS returned our calls so we set up an appointment with her.  

Earlier this month Hubs drove me the 3.5 hours to her office(north of Jackson)and we hoped for the best.  We brought paperwork and information from my PA dermatologist so we could hit the ground running.

It turns out this doctor is friends with my old Dermatologist.  They go to medical conferences about HS and give talks there-my old Derm gives lectures about Adult HS and my new Derm handles Pediatric HS lectures.  

So we had our appointment and she needed to now write a prescription for the drug I am on presently for my HS condition, which is surprisingly still keeping me in remission.(Most HS sufferers need to change biologics or go on Remicade infusions after a few years, as the biologic drugs used lose their effectiveness over time.)

We had a funny moment when the doctor's nurse took us into the exam room and was setting us up to see the doctor.  She noticed that we had traveled quite a ways for this appointment and asked us where we had come from.  I told her and she said she and her husband live across the river from our town in the neighboring town.  I wondered why she took a job in Mississippi and then she asked me what Dermatologist I had seen in my town.  I told her the name and the name of the group practice and she got a knowing look on her face.

It seems this nurse had tried to get a job where she lived with a Dermatological practice that does "serious" or Medical Dermatology.  She had contacted this same practice I had tried to use and then they had tried recruiting her.  When they took her out to wine and dine her this nurse had asked point blank, "Does your office do Medical Dermatology?"  To which, the local to us Dermatologist has responded NO.(Funny how this office, when contacted by a potential patient with HS is told, "sure, we treat that!")  At that point the nurse had declined any job offer from this Dermatological office and went looking elsewhere for a "real" dermatologist and had landed at this U of Mississippi affiliated doctor's practice.  The nurse stays in the Jackson, MS area all week for work and travels the 3.5 hours home on weekends to be with her husband and then back again on Mondays.

Turns out I am not crazy when I got a bad vibe last August when I had an appointment with this dermatologist in Louisiana if this nurse also ran away from a job offer from her. lolz

New Dermatologist wants to see my back in 3 months.  This is a hardship traveling so far so frequently(a 7 hour drive total)but I am hoping such a frequent visit schedule is just because I am a new patient to her.  Perhaps I'll be able to see her 2 x a year like with my previous Dermatologist in PA, who we had to travel just under 2 hours to get to.  I'll ask if she does telehealth appointments the next visit(but sometimes Medicare and Supplement plans don't cover these types of visits so I'll have to get more information on costs is she allows them).

Anyway there have been issues with setting up my Rx for the medication I need because of going on Medicare with a Part D supplement and her office staff not willing to send my Rx to a different specialty pharmacy that MY Part D requires me to use and wanting to use the pharmacy that they have a relationship with.  It's all fine and good to use whom they regularly use but won't do me any good because my Part D plan requires me to use X and not Y.  That's been a small hassle so I am glad I stockpiled my medicine while still on private insurance, otherwise I'd have missed doses waiting for this to get straightened out.

I feel I am now in the right hands medically, for my HS, though the medicine I need will cost me $2,600+ to fill the first two times on Medicare Part D as there are no generics.  The first fill, along with all the other medications I am on, will put me in the dreaded Medicare "donut hole" but the second fill + other meds filled will get me out of the donut hole and put me into the "catastrophic phase" where I will get the medicine for free for the rest of the year.  It's still a large chunk of change to fork over for drugs but at least I won't have anxiety over this going forward. 8-)

Sluggy