Sunday, July 17, 2011

Sunday morning

It is Sunday morning and I have to go pick up 4 prescriptions at two different pharmacies. I find it hard to come to terms with the money being spent at these two pharmacies when i have found little or no relief from the pain of Rheumatoid Arthritis. This is hard because our family finances are incredibly strained at the moment and I am worried about just having enough money to feed my children. I decide that it is better to pay with cash for the drugs and write a bad check for the food, something I wish I didn't have to do right now but with a husband not working and me making a lousy $800 a month it is a necessity. I take a deep breath and try to relax my shoulders which are causing me a lot of discomfort lately. Do you know you use your shoulders every time you move your head or your arms, yes painfully I know this is true.
I pull up to the first Pharmacy which is handling my Methotrexate which is a "specialty" medication. I am pretty sure means they can charge you more money for it. I walk in and pass all the cosmetics, vitamins, and beach attire and head for the back corner of the store. The pharmacist welcomes me and takes my name and looks up the order. She is a small women of Asian decent, very pretty and sweet looking, I smile and wait. "Ok Mrs. Thomas we have your order ready" she says. I pull out my ATM card and swipe it, the register beeps. "Oh Mrs. Thomas I want to make sure you are not taking Ibuprofen with this medication," she says. I look at her blankly and say, "I take 800 milligrams of Ibuprofen 4 times a day." Her face goes cold and suddenly she looks not so nice and friendly, "Mrs. Thomas if you take Ibuprofen and Methotrexate together it can cause severe damage to your kidneys and can cause internal bleeding. You should talk to your doctor about this. I am sure she put you on the ibuprofen before you started the methotrexate and after about 6 weeks of the methotrexate you should have little or no pain and should not need the ibuprofen." I looked at her blankly and thought oh how ignorant you are of the realities of this disease. I wanted to actually yell at her but I didn't I smiled and said, "I also take Enbrel injections, pain pills, and muscle relaxants and my pain never goes away." We finish the transaction and I leave to go on to the next pharmacy to retrieve two other orders.
How do we educate people about this disease? How do we explain that Enbrel, Humaria,methorexate are not miracle drugs. They do work for some people but not for everyone. My only hope is that the drugs are preventing me from having further joint damage, I don't even wish or hope for them to remove the pain for it seems that I will just have to live with the discomfort. I do long to wake up in the morning and just feel good, to feel like I have the energy to face what is ahead of me.

11 comments:

  1. Big sigh here. Question -- how much do people pay for these RA drugs? I haven't started any but I so want to know how much they are. I know it depends on insurance and such but can you give me a rough estimate?

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  2. Oh, Mama I feel for you. I have also had a number of frustrating and also a few embarrassing situations at pharmacies. I'm sure most of us have. Keep your chin up, I'm saying prayers and sending them your way...

    @Jane, My insurance does not cover the methotrexate I inject weekly, but it's only about $20 / month. I also take Enbrel, and my insurance does cover it. There is also an assistance program; you can read about it at Enbrel.com.

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  3. Ooo no, that's awful that the *Pharmacist* didn't even realize that the drugs don't take away the pain for nearly everyone on it (only like 25% of people are "completely satisfied").

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  4. Thank you for sharing the story. I laughed out loud - and certainly not at you. It is the familiarity of the scenario. I have found that if I am wearing makeup and nicely dressed that day, I get "the look". You know what I'm talking about. The look that means "you can't possibly be in this amount of pain if you are able to walk and talk and get yourself dressed". Sometimes it's best to go to the pharmacy right after waking up in the morning when we look how we actually feel...lol. Take care and thanks for the post!

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  5. Thanks for your comments, keep them coming!!

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  6. Ugh. I hate comments like that. I try to educate people when they are completely ignorant about Psoriatic Arthritis, but it's really sad when it's a health care professional.

    Jane - Humira is $1500 a month. There is a patient assistance program. After all my DH's medical expenses (and mine) we qualified for free Humira until we were on better insurance.

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  7. Please, everyone... young has it right... check into assistance programs!! I pay $30.00 a month in copay and that's it. I take humira every 7th day and could not imagine having to pay for it outright. No thanks ... also, be sure to do your own checking on contraindications of meds. It could save your life!

    I just found out on top of everything else, I was also dx'ed with psoriatic arthritis.

    Now, I'm afraid to stand under a tree. I'll walk away with lyme disease... when does it stop?
    Hugs
    Tammy

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  8. Thanks guys for your comments, great stuff. I do have co-pay assistance for Enbrel and I pay $50 a month for that but I have to pay out of pocket for methotrexate and I failed to mention that my daughter is also on medication too for JIA. The point of the blog was that I don't qualify for medicaid, I didn't have the money to buy medication and food, I had to make a choice. Even with assistance for medication at the time I was really broke. Things have turned around a little bit, My hubby is working two jobs, we did get some food assistance and in a few months we will be able to breathe a little bit.

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  9. So far I just seem to get the sympathetic looks from the pharmacist. I guess some of them must understand to an extent.

    @Jane, I pay $11.99/month out of pocket for my MTX (I take 15mg/week) and $75/month out of pocket for my Enbrel (50mg/week). I haven't started the Enbrel yet though cause I may have to have an MMR vaccine first. The 50mg dose of Enbrel is $2300/month without insurance. I did get a discount card, but my insurance is now requiring me to order it from one of their contracted specialty pharmacies, so I will need to fax the card to them.

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  10. IT's true that NSAIDs with MTX can cause the chemo to build up in your kidneys. That's why we do liver panels and blood tests so often. Also may help people who don't have insurance to check out the customer program at Costco.

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  11. I have been on a myriad of medications over the last 13 years. Currently I'm on Remicade infusions (full price 9K) once per month at a hospital $200 copay. If not at a hospital it costs me $2,300. I also take narcotics (you're not supposed to divulge this information because you become a target for increased home invasion & personal attacks. These drugs are held in the Pharmacist's safe. The Pharmacy helped me get some discounts when I went to pick up my first month's supply and found out it was $793. Yes, I burst out crying right at the counter. Now I pick it up every two weeks (the card stipulates it can be used that way) and pay $263. X2 for a total of $526. That is a savings of $267. That is for ONE medication. I have a long list of other things I take and although I won't list them here the balance for those corand exceeds $300.The total per month is $1026. This does not include Doctor appointments at $40 each. This amount exceeds my old mortgage payment. Luckily my house was paid for some years earlier. This is the best combination of meds I have ever been on although I still experience pain but not to the extreme I have previously. I am disabled and collect Social Security benefits. After my medical expenses are paid ....what I have left of the Social Security check is a whopping $435 per month. My husband works and if it were not for his income we wouldn't have sufficient money for gas/electric/water, food, phone, insurance, gas, (we both drive old cars/no payments) and all the regular household expenditures that arise. If something happened to his income we would be in serious trouble.
    I cannot complain...how can I? He is already burdened with enough stress, responsibility, etc. If I complained every time I was in pain....it would be unbearable for him. I feel lucky because I DO get these meds and there are so many people in the world who can't afford them or don't have access to them.
    People generally do not understand the pain and horrible fatigue that comes with RA.
    MAY I RECOMMEND A WEBSITE?
    "You Don't Look Sick.com" then look
    for "The Spoon Theory"
    The woman who wrote is has Lupus but many things in it address the problems we all face when suffering from any chronic illness. Print a copy and give it to your Doctor, your Sister, your pharmacist, a friend. I believe it helps them to understand in very simple layman's terms what we are going through. Try it. It has helped me. I will pray for everyone with RA.

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