Feh. I saw the Dermatologist, and he says I don’t have psoriasis. So, no psoriasis, no psoriatic arthritis. Hmmm. The Rheumatologist was really sure, wrote a diagnosis, etc.; I thought the trip to the Dermatologist was pro forma, apparently not.
I also took more blood tests that the RT (I’m tired of typing “rheumatologist”) ordered, more than I’d seen a doctor order ever, so we’ll see what happens with that. I see the RT sometime in July, so we’ll find out what she now thinks given new information.
Sorry if this thread has become my rheumatology blog, I thought someone else might find the story interesting. And if not, thanks for letting me vent.
Sorry it’s taken me so long to get back to you; been dealing with some stuff, and was out of town for a while.
I get my Remicade every six weeks. Some people go every eight. How often kind of depends on the response to treatment. The last week or so, I start feeling it. My rheumatologist told me they could move it to every five if I want, but I’m not ready for that yet, so leaving it where it is.
The different drug companies that make Enbrel, Humira, and Remicade handle their discount/financial assistance programs different ways. With Enbrel, you called them to enroll (my doctor’s office gave me the info) and they paid what was left after my insurance paid - the full amount for six months, and then the next six months at 50%. I also got some support phone calls and a nifty insulated lunch bag deal and a free sharps disposal container. (Enbrel is self-injected). They described this as a ‘customer loyalty’ program with no financial qualifications to meet.
Remicade classes their program as a financial assistance program and you have to meet certain financial and coverage criteria to get the assistance. I didn’t qualify; my coverage is too good. We have an HSA and I’m well paid and I’m not having any problems paying for my drug. It keeps me functional and I’m grateful it works so well for me. I’m able to work because of it.
There are lots of different options for people who need financial help with meds. With very new drugs, many companies do offer coupons, discounts, loyalty programs, etc - you just have to know to look for them. The company’s information website for the drug is often a good place to start. These offers won’t help everyone, but they’re at the very least something.
There’s also participating in clinical trials, if you live in an area where that’s available. There’s extensive info on available trials at nih.gov. It’s something I would consider doing at some point if my treatment options get thin - tons of new arthritis drugs in the pipeline, and I live in an area where a lot of this goes on, thanks to Washington University.
My insurance company, which really is a great insurance policy/coverage by my employer, said I couldn’t get Humira until I had tried Enbrel or Remicade for six months and they don’t work. Then I could get Humira. So, they approved the Enbrel, and it worked like a charm. Of course, my oral meds worked for two years like a charm. :eek:
I think all of the TNF inhibitors cost in the same range on a per/week/month basis. All of the drug companies do indeed subsidize to some extent the cost.
When I was originally diagnosed 2 1/2 yrs ago, the Dr. originally would have put me on oral Methotrexate, but I drink alcohol and Methotrexate would kill my liver. So, he put me on oral azulfadine and plaquenil(sp?). They take up to two months to kick in, as does methotrexate I believe. But the TNF inhibitors work the same day.
I was very lucky. My doc got me into the program for Humira. I’ve been one of the guinea pigs from day one - did the blind study for the first year (although I figure out my regimen after about the second month) and I’ve been on the extended study since. Just started year 8.
Cool, thanks for the data point. I was wondering if I might fall in that group as well. I may call the other DermaDoc that my RT recommended; the first DermaDoc was someone my wife had seen and recommended. I didn’t feel like he’d done more than a cursory job, basically just talked to me, asked what my issues were – I told him my issue was a blood test sent me to an RT who sent me to him, and what did he think? Jeez, no wonder healthcare spends so much money in this country – why can’t these doctors talk to each other, instead of sending me on pilgrimages. [/rant, sorry]
Not on my Mother’s side; my Father’s reply was “not that I know of”, but he’ll check with his sibs and let me know.
I finally got my second go at my rheumatologist today. It was a bit anti-climactic. All of the blood tests she ordered came back normal – liver function, kidney function, yadayada, all normal. The only odd thing was my blood sugar was just barely high (101, vs <= 100 normal), but I’d seen that before with my GP, so no surprise. She still thinks I have psoriatic arthritis, in spite of what the dermatologist reported.
Dr. Rheumatologist’s big thing was: how do I feel now, after 7 weeks of using Aleve/naproxen 500mg * 2 daily? I admitted I feel a whole bunch better – less stiff, more flexible, less pain. She offered me the option of adding one or more drugs if I thought I needed more (Methotrexate and/or Sulfasalazine, if I’m decoding her scribblings correctly), or just stick with the Naproxen. I chose door number 3, keep taking Naproxen and wait to see if anything changes. And now I’ll see the Rheumatologist in 3 months, or please call her if things change.
This has been a very weird trajectory to me. I’m glad I followed up, but I feel I’m chasing a phantom a bit. I had one odd blip on a blood test, plus soreness (admittedly pretty bad, some days). I have no idea if I do or don’t have what this doctor thinks I have. I’m glad I’m less sore, but I’m not sure I want to take 1000mg of Aleve every day, forever. OTOH, if I really do have psoriatic arthritis, I need to keep a careful eye on any chance of joint damage, because my current joint health will never be better than it is now. So… shrug, I’m not sure what I’ve learned.
