Friday, March 9, 2012

good and bad

as i mentioned in my last post, i'm medicated.

the biopsy that the dermatologist took confirmed that i do have eczema (atopic dermatitis), which is good in that it's not anything life-threatening, but bad in that eczema cannot be cured. i've been told my whole life that i have it, but this dermatologist was the first to suggest a biopsy. i've spent thousands of dollars over the past few years at various doctors trying to find something that is triggering the eczema with no luck so far. typically, most people find that eczema is triggered by an allergy to something - food, detergent, pollens, etc. while i do have a number of allergies, avoiding them has not made a difference. i am still currently thinking that i could have something else going wrong internally (hormone levels, adrenal function) and because something is out of whack, it is irritating my skin.

horse pills

the dermatologist said i was a severe case (go figure) and recommended i go on cyclosporine. the good news is, it's working. things aren't perfect, but they are noticeably better. prior to starting the medicine, i was never comfortable, i was always itchy, and i was usually in pain (from the itching mostly). i couldn't concentrate at work, i haven't slept through the night in over two years, and i was very irritable.   i spent the weekends sitting on the couch because i was so uncomfortable. now, my skin is almost totally clear, the itching has subsided (but isn't fully gone), and i'm a more productive employee. i'm still not quite sleeping great yet, and josh would quickly admit that i am still irritable, but at least i'm comfortable. 

the bad news is, it's working. cyclosporine is an immunosuppressant. obviously, suppressing your immune system is not exactly a good thing. it was originally used in kidney transplant patients so that their body wouldn't reject the new organ, but has been adapted for use in other conditions such as eczema. unfortunately, it's not going to solve the problem - it will only provide temporary relief while i am on the drug, and i can only be on it for 6 months to a year. any longer than that will lead to very bad long-term side effects like liver failure. cyclosporine can affect your electrolytes and triglycerides, so i have to go in every two weeks for blood testing to make sure my levels are still normal. 


while i'm glad it's working, i can barely stomach the expense. one month of medicine costs $254. let's hope i don't have to be on it very long! part of this is because i am on the hsa plan which (i thought) doesn't include prescription coverage. i tried using a 75%-off any prescription coupon (found online) but the walmart employee told me that my insurance discount was greater than the coupon (making the starting price of this medicine $1000?!?!?). i tried to explain that my plan does not have prescription coverage and then remembered i was talking to a walmart employee, so i just gave up. (i am hoping my pharm friend gracie can help explain??) i had this filled at walmart because i figured it'd be cheaper there than other pharmacies, but i may call around to the walgreen's and cvs's to see if they'll tell me how much it would cost me there.

so, no real progress has been made just yet, but i am comfortable and hopefully can find a doctor who will do some more tests soon. in the meantime, at least i can workout a little - when the soreness from tuesday's run goes away.
Share:

31 comments :

  1. Wow, I hope things work out for the good..... No more bad!

    ReplyDelete
  2. Maybe try Costco pharmacy. Many say their prices are better. I hope it all gets sorted for you soon!

    ReplyDelete
  3. Continue to keep my fingers crossed for you, that there is SOON another solution than expensive horse pills! You are a trooper!!!

    ReplyDelete
  4. Girl I totally understand. My son has horrible eczema. He is always scratching and I feel so bad for him. We did all the allergy testing and things never come up. I am going to have to check that medicine.

    ReplyDelete
  5. Good lord! That is CRAZY for one month. I hope that you don't have to be on it for long either!

    ReplyDelete
  6. Happy for you that you have some relief, albeit an expensive and not permanent one. I had friends who took such meds for conditions like Lupus and IBS, and then one of them was completely fine, while the other was fine for a couple of years and then had to get back on the med. So, lets hope that you will have a good long term outcome. It sucks the med is so expensive, but I always say that when it comes to health, everything is worth it. Laughing at your comment about the Walmart person. Hopefully Gracie can help. Good luck!

    ReplyDelete
    Replies
    1. yes, the expen$e sucks, but it's worth it to get a little relief/comfort. hopefully i can make some progress on finding real answers in the meantime!

      Delete
  7. Have you tried giving up nightshades (potatoes, tomatoes, peppers, etc.)? Some people are allergic and symptoms include skin problems. I found my skin cleared up some when I stopped eating them, but for me the result wasn't worth giving up so many things I love to eat.

    ReplyDelete
    Replies
    1. i haven't tried nightshades, but i have tried eliminating other things from my diet (dairy, gluten, corn). i may need to try eliminating nightshades... i do eat a lot of potato chips after all!

      plus, i do think that a number of problems are caused by food intolerances. not allergies per se, but different people's bodies just can't handle certain foods the same as others.

      Delete
  8. It's good you are getting some relief but bad about the cost and the side effects. Seems like a tough situation. Hang in there.

    ReplyDelete
  9. Not that I'm trying to one up you at all but if it makes you feel better the med my doc put me on for my issues is $540 a month. I didn't realize the cost until the new year and my HSA started over. I went to get my next round and when they told me the price I think I may have actually peed myself. Needless to say I called my doc and made him put me on something else that's only $50. It's not nearly as effective but it's better on the pocket book.

    I'm going to keep my fingers crossed that you'll have no need of this drug long term because you'll have finally found an answer!

    ReplyDelete
    Replies
    1. medical costs are ridiculous. and this is *with* our coverage!! i mean, i know we both have hsa/deductibles to meet, but still.... pricey.

      unfortunately i don't think there's a cheaper type of this medicine (i'm on the generic), but i will be mentioning the cost when i have to go in for my blood work check-up.

      Delete
  10. That is an enormous pill and even more enormous cost. :/ Also sorry that you still don't have a long term solution. Hopefully in the meantime another doc can help.

    ReplyDelete
  11. sigh. Sorry about the cost. I hope they don't realize they made a mistake. My husband one time did not give them a new insurance card so they billed our old insurance company. Six months later we got a bill for the pills he had gotten. grrrr.
    I hope you feel better soON!

    ReplyDelete
  12. I just started itching from a script that would cost more than a $1000......WTF?

    It sounds like a step in the right direction for you and I hope it is not a long-term necessity and that this drug helps open up other doors for this Dr.

    ReplyDelete
  13. While the relief is good...it is still sucky. Hope you get something figured out.
    My vitamin is smaller than that..and I have trouble swallowing even that...

    ReplyDelete
  14. Oh no - talk about being between a rock & a hard place!! I'm sorry you are going thru all this. :( Glad to hear that you have a bit of relief though!!

    ReplyDelete
  15. Holy smokes that's expensive for one month. I hope it works for you Lindsay. Sorry to hear but glad that this will hopefully bring relief.

    ReplyDelete
  16. I'm gonna do a little research for you...

    ReplyDelete
  17. man, it's good you are figuring out what's wrong. but DAYUM that sucks. so sorry. i'm making a sad face for you. i hope you can find a long term solution soon. my husband has eczema really bad on his hands. i found soaps and detergents are a culprit for him, and while it's lessened it, it's still there. he has it on his hands pretty badly. so i'm curious to see what you find! i can't figure out what else is causing his. other than maybe paper, which unless he wears gloves all day at work, will never be an option to cut out of his life.

    i know how miserable his makes him, especially at night. i feel for you.

    ReplyDelete
  18. Wow! That's darn expensive! Bummer that it's only a temporary solution - hope you get some answers soon. Glad you are at least feeling some better though.

    ReplyDelete
  19. Wow. You have a lot going on. It must feel great to feel better but suck that it will not last. Good luck finding a cheaper place.

    ReplyDelete
  20. what if you buy it on the internet from Canada?

    I'm sure you're searching the web for alternatives and it'll be an experiment to see what helps/hurts/no change. You may want to consider a journal to document changes.

    ReplyDelete
  21. Glad you found something that can help. Rx costs are horrible. We have an HSA plan too, and though it doesn't have rx coverage, it does give us discounted rates. I cannot believe how much $$$ it would be otherwise. Mail order is sometimes cheaper -- but you usually have to get 3 months at a time. Best of luck to you!

    ReplyDelete
  22. This will sound weird, but our dog, AJ, had this! He took a pill called atopica (it was $5/pill), but I remember that it was a cyclosporine. He was itchy all the time and the pill, which he took once a week. I can't imagine feeling itchy all the time and how frustrated you must be. When I had my back issue, I was in pain about 24/7 and it is depressing. I hope you can find something soon. Have you looked into natural medicines, altertnative or acupuncture? I have a friend with celiac disease, and she's had some success with alternative treatments.

    ReplyDelete
  23. Those discounts never work. Email me. gracethackeratgmaildotcom.

    ReplyDelete
  24. Argh, how frustrating about the cost of the medication! You can usually look around online to see what other pharmacies will charge for different meds, and to see if there are prescription programs (through the pharmacies or through the company that makes the drug) that might help defray some of the cost. I'm also sorry to hear that you're only getting semi-temporary relief. Maybe by the time you have to go off the cyclosporine, you'll have found out what's causing the eczema.

    I'm glad to hear things are feeling a little better in general, though. I hope that pattern continues!!

    ReplyDelete
  25. Well the good news is that you now know! Of course there is the bad news too...the medication and cost!

    My mum had/has is pretty bad and she got "prescribed" a series of sunbed sessions...just wondering that (or a move to somewhere sunnier) might work longer term?

    ReplyDelete
  26. I give cyclosporine to a lot of my liver transplant patients......those folks have to be on it for an eternity, I can't even imagine. Before getting a liver transplant, recipients have to go through all these crazy financial screenings because it's some ungodly price for all the transplant meds (like $5000 per month or something like that), it's crazy. And yeah, cyclosporine has a lot of not great side effects, but it's all about weight the cost-benefit ratio of course, as you know!

    Thanks for sending along those links for the OC marathon reports. Some of those photos looked like they were in the country, pretty scenery. Looks a little hilly though. Someone told me the course changed for this year, I hope it's more flat.

    So I had e-mailed the race director of the Virginia Creeper marathon last week and he said I would have a spot if I wanted it :) So I sent my $10 and registration in....I figure if I get injured/sick or whatever before then, losing $10 is not the end of the world, haha.

    ReplyDelete
  27. WoW really hourse pills!
    The positive view is that I think you are in the middle of the iceberg, I soon you will find the root.
    big hugs!
    Tania

    ReplyDelete
  28. Yikes! What is it with medicine costing so much lately. I hope this helps for you and you can figure out whats triggering it.

    ReplyDelete

Instagram

Rick the Marathonman

Rick the Marathonman
Running in Memory of Rick

Follow CTK

Followers

Archives