Archive for category Drugs
Ah, late December. A time of beautiful lights, giving, and the great health insurance scramble.
As co-founder of my company, I’m lucky enough to have a huge impact on choosing the health insurance we provide. One of the deciding factors for me is being able to get my Rheumatoid Arthritis drugs at a low co-pay. Through United Healthcare, it’s been $10 per month for methotrexate, $10 per month for folic acid, and $30 per month for Enbrel.
In other words, $50 a month for drugs. A reasonable-enough price to pay for my health. It is the number one reason we decided to keep our UHC plan for 2015.
So shock me, shock me, shock me (Any Empire Records fans? Read on, there’s a gif for you below.) when I get a letter saying that beginning January 1, 2015, Enbrel will be considered a “Tier 4” drug and will not be eligible for the Enbrel Assistance program. After some digging, I found out that this means it’s going up to $250 per month with no opportunity to enroll in any payment assistance programs Enbrel provides.
What? Merry Christmas to you too, United Healthcare.
Their advice? Try another drug.
That’s all good and fine. They’re willing to cover Humira or Cimzia, but I’m feeling pretty violated. I know violated may seem like a strong word for this situation, but that’s how it’s feeling. I’m being forced to put an unknown drug into my body because my healthcare has made an arbitrary change to their coverage. Enbrel is a known quantity for me. It’s effective in treating my RA, side effects are pretty minimal for me, and my body is used to it. Humira and Cimzia are not.
Not to mention, my rheumatologist claims that though the risk of switching is “probably pretty minimal”, there is a risk that I could lose the efficacy of Enbrel if I ever need it again. Joy!
So, have any of you RA folks made the change from Enbrel to Humira or Cimzia? How did it go? Are any of you on Humira or Cimzia? How did you like it?
Thanks for all your input and Happy Holidays to you all (in the non-grinchy, healthcare-trying-to-screw-you way, of course!)
Oh man, I’ve been neglecting this blog! Sorry guys. There’s nothing like that three month rheumatologist appointment to remind me to get writing!
I’ve been thinking a lot about the journey I’ve been on with my RA. I went from the fear that came with diagnosis, to dogmatic hope and determination that I could get rid of said pesky diagnosis, to bleak acceptance, to a sort of new normal.
That new normal is what I want to talk about. I think it probably looks different for everybody.
But, at any rate, here’s what my new normal means for me:
- it means I normally operate with an acceptance of my disease – it’s chronic, it’s painful, it ebbs and flows
- it means I still hold onto the hope that better scientific research may lead to better treatments and possibly a cure
- it means that I constantly remind myself that “chronic” is just a word. Diseases change and even chronic ones may go away
- it means that I am almost ALWAYS uncomfortably aware of my body. At moments when I want to focus, my feet are screaming (like recently standing during the funeral of a friend…I wanted to be focused and be there for all the people who loved him, but there were my inflamed feet, in pain and begging for my attention). At moments when I want to be serene and zen (like in yoga classes when my wrists are acting up).
- it means that some mornings my feet and hands don’t work the way they should. They’re frozen, sore, and just not ready to start the day
- it means feeling that I’m constantly balancing the desire for understanding with the desire to not burden others by complaining. Usually I stay quiet.
- it means I have a new relationship with some powerful drugs. Drugs with life-changing results and uncomfortable side effects
- it means I am a whole lot more patient with myself and others
- it means that not a day goes by when I’m not grateful for my body, my mind, my life and my loved ones
What does your new normal mean for you?
Rude Awakening posted some great answers to the “30 Things You May Not Know About My Invisible Illness” questionaire in honor of Invisible Illness week: Invisible Illness Week: 30 Things You May Not Know….
She also reminded me, it’s that time of the year again! My answers are below.
30 Things You May Not Know About My Invisible Illness
1. The illness I live with is: Rheumatoid Arthritis (plus Raynaud’s Phenomenon and Chilblains)
2. I was diagnosed with it in the year: 2012
3. But I had symptoms since: I noticed what I now believe were RA symptoms as far back as 2009. I’ve had Raynaud’s since at least age 14, though possibly much longer. Chilblains began in 2012.
4. The biggest adjustment I’ve had to make is: Slowing down more often to give my body a break.
5. Most people assume: I’m fine now that I’ve been to the doctor, because I’ve gained weight back and look healthy. They don’t realize that I’m treating symptoms that are chronic and occasionally flare even with treatment – I haven’t “cured” my disease.
6. The hardest part about mornings is: This absolutely depends on the day! Some days mornings are the best, some I have so much fatigue and stiffness I don’t want to move.
7. My favorite medical TV show is: Scrubs!
8. A gadget I couldn’t live without is: Comfy flats and boots, a jar opener, and warm socks and gloves!
9. The hardest part about nights is: Some days it’s fatigue, some it’s pain, some it’s just knowing I have to get up the next morning, some are totally fine.
10. Each day I take 4-15 pills & vitamins.
11. Regarding alternative treatments I: I love acupuncture and find it helpful and relaxing. Would if I could get more massages! I watch my diet and have cut down on many inflammatory foods, including dairy and gluten. I incorporate anti-inflammatory food/supplements into my diet as much as possible: ginger, turmeric, cinnamon, omega 3s. Perhaps most importantly, I try to do something active most days. On rough days, it may just be a very short walk, on good days, it’s runs, swims, boot camps, dance or yoga.
12. If I had to choose between an invisible illness or visible I would choose: Invisible, even though it can be frustrating. Some days I look and feel normal and am able to forget about RA. Those are the best. Plus, being a private person, I prefer being able to choose whether or not I want to share my illness with others. Its invisibility affords me that choice.
13. Regarding working and career: I’m an entrepreneur working on a tech start-up that I co-founded. This means I likely work harder under more stressful conditions than my health and doctor would like. It also means I’m able to work flexible hours that allow me to make my doctor’s appointments and work from home on bad days (even from bed sometimes!). I try to remember to take time to myself to rest and replenish and focus on being healthy.
14. People would be surprised to know: I agree with Rude Awakenings: “Fatigue is as debilitating as pain – some days more so. And I feel like a definition is needed here. Fatigue = flu-like symptoms, not simply being sleepy.” On days with bad fatigue I struggle to do anything, including just talking to the people I love.
15. The hardest thing to accept about my new reality has been: Relying on drugs to feel well and accepting my body’s limitations on rough days.
16. Something I never thought I could do with my illness that I did was: I agree with Rude Awakenings here too: “Talk about it so openly.” When I was first diagnosed, I didn’t think I’d be educating people on my illness or reaching out to strangers!
17. The commercials about my illness: All feature older adults, seemingly in their 60s. They perpetuate the myth that Rheumatoid Arthritis is the same as Osteoarthristis and mainly effects older populations.
18. Something I really miss doing since I was diagnosed is: Not having to wonder how an activity, meal, or drink will effect my RA or interact with my meds. Not having to plan my life and trips around bi-weekly medication, bi-monthly blood tests, and tri-monthly doctor appointments.
19. It was really hard to have to give up: Control over my body. Oh, and dairy, gluten, alcohol and heels (I still enjoy all four in moderation).
20. A new hobby I have taken up since my diagnosis is: Blogging!
21. If I could have one day of feeling normal again I would: Similar to last year – I would just go, go, go all day and night, not worrying about lack of sleep, stress on my body, any of that.
22. My illness has taught me: Celebrate the good days and all that my body does for me. Always be patient and kind to others – invisible illnesses are a good reminder that you really don’t know what others are struggling with!
23. Want to know a secret? One thing people say that gets under my skin is: Agree with Rude Awakening again, absolutely this: “When people equate their grandmother’s osteoarthritis (or their own!) in her wrist to my autoimmune disease.”
24. But I love it when people: Ask me how I’m doing even if I look fine and want to learn more. I also love when people share their own experiences with autoimmune diseases or offer to put me in touch with friends who also have RA.
25. My favorite motto, scripture, quote that gets me through tough times is: I have many. Here’s a kinda nerdy one: “We take what we can get, Champ, and we do our best with it.” – Cordelia Chase. Another one along the same vein: “Do what you can, where you are, with what you have.” – Teddy Roosevelt
26. When someone is diagnosed I’d like to tell them: It gets better. The pain will decrease when you find the right meds. The loneliness will start to dissipate when others with RA come out of the woodwork and you find online communities to connect with.
27. Something that has surprised me about living with an illness is: Most people, even those close to you, do not want to think or hear about your illness. Everyone prefers to think that all’s well.
28. The nicest thing someone did for me when I wasn’t feeling well was: My boyfriend does this well: we’ll order in and watch a movie, and he won’t let me entertain thoughts of guilt over all that I didn’t accomplish that day.
29. I’m involved with Invisible Illness Week because: I want to create more awareness and understanding of autoimmune diseases. There’s so much that is unknown, underfunded and misunderstood.
30. The fact that you read this list makes me feel: Grateful. Thank you for taking the time, and for your support of Invisible Illness Week!
When I first got on medication for RA, I took my methotrexate the day it was prescribed (at one of the most depressing and sober happy hours I’ve ever been to) and my Enbrel as soon as it was approved by insurance and shipped to me. I was so desperate for relief, I didn’t think about what day of the week would be most convenient to take 8 tiny pills that make me exhausted and slightly nauseous. Or which day would be best to remember to take my shot, meaning I needed to be by my refrigerator with privacy, alcohol swabs and an ice pack.
At any rate, I recently decided to maximize fun by cramming it into a weekly drug-fueled night of excitement on what is already the best night of the week: Monday. Just kidding.
Monday nights for me now consist of trying to get a kick-ass workout in after work – usually weights and hip-hop dancing. The endorphins boost my mood and working out makes me feel powerful. That helps combat the feelings of weakness that go along with being dependent on drugs, the confusion I sometimes feel when I swallow pills that I know are both a cure and poison, and the wimpiness I feel when I cringe giving myself a shot.
After that, I make myself dinner and settle in for a night of relaxing on the couch. This is only made slightly less relaxing by icing my leg while my shot warms up, then giving myself my injection of Enbrel. Dinner is only slightly less appetizing when the second course is 8 pills of methotrexate. I find that eating a lot before and a little after taking my pills helps with the nausea.
I also find that some good, distracting TV helps. 🙂
Anyway, that’s my drug day routine. What’s yours? What makes it more tolerable for you?
Also, for those of you that made it through my drug day rant, I have an Enbrel PSA: according to one of the Enbrel support nurses, the FDA has now approved Enbrel to be unrefrigerated (stored at room temperature) for up to 14 days. The only caveat is, once you take it out of refrigeration, it should remain out and must be used within 14 days. For anyone who’s tried traveling with Enbrel (especially on long overseas flights after FAA regulations no longer allow flight attendants to store passenger drugs in refrigerators), this is awesome news.
I was trying to find the post with my Enbrel travel story, but I either never typed it or it’s poorly tagged. I’ll tell it quickly here. When I was flying to Spain I had to take a three hour domestic flight, followed by a four-hour layover in Miami, an 8+ hour flight, a taxi ride, and not being let into our apartment for two extra hours. Needless to say, my ice pack thawed during my layover and my Enbrel travel case was soaked.
This meant tracking down plastic bags of ice in Miami. The best the flight attendants could do was give me a bucket of ice that turned into a cold, wet bucket of water that inevitably got all my carry-on items wet because it had to be stored under the seat but only fit beneath my feet. In all that travel time, the only place that allowed me to use their refrigerator to store my syringes of Enbrel was the cafe in Spain where we killed time. After that fun experience, this news is VERY WELCOME.
I am long past overdue for a blog post! Things have been crazy in my world. My grandfather passed away and my sister had her baby seven weeks early (both are doing well). Meanwhile my works been busy (in a good way) and I’ve been fighting a cold ever since getting back from the funeral two and a half weeks ago.
To top all that off, I’ve been experiencing my strangest symptom yet: hives. I woke up a week ago with huge hives covering the back of my right thigh and a small part of the back of my left thigh. It’s evolved from being lumps, to a big red blob, to small bumps, to now taking on a purplish hue.
I went to my rheumatologist on Friday, and he ruled out the rash as a sign of Lupus. He also didn’t think it was a bug bite or related to my Raynaud’s/Chillblains. He told me to skip my Enbrel this week and follow up with a dermatologist if it was still around Monday, but of course they all seem to be booked through the first week in December. So that leaves me guessing and Googling at what could be the cause. A sudden onset allergy to Enbrel? A random reaction to my cold? Some bizarre complication of RA?
Have any of you experienced anything like this? My solution for now is to go to urgent care if it gets worse, and to do my best to ignore it until it gets better.
Well, my running and office life have once again been sidelined by my health. For the fourth time since getting my wisdom teeth out in June, I’m sitting at home, swollen, bored, exhausted, and on antibiotics and pain meds (oh, and off my RA drugs to let the antibiotics do their job).
The first time was being swollen for about a month after getting the teeth removed. The second two times were when blood started collecting in my right jaw – a hematoma or blood tumor. That happened twice, people! Each time involved making an incision in my gumline/inner cheek under local anesthesia, draining the blood, undergoing antibiotics, and giving it time and rest to make sure it healed.
I’ve been totally fine and hematoma/jaw swelling free for five blissful weeks.
Then, this last weekend I had subtle, sporadic pain in my left ear. I was busy having a blast at a wedding, so I ignored it. Sunday night, I had some pain in my lower left jaw. I noted it, but went to bed.
Then, Monday morning I woke up to one half chipmunk cheek. Whhhhhhyyyyyyy?????
Of course, the oral surgeon who I had been doing follow up care with was out of the office Monday, so I went to a new dentist who ruled out a tooth infection and put me on antibiotics.
I spoke to my marvelous rheumatology nurse at least four times, trying to determine if it could be related to Rheumatoid Arthritis. The short answer is, yes, it could, but it probably isn’t.
So Tuesday I went back to my oral surgeon. He ruled out a hematoma or an infection, but numbed me up, sliced in, drained the area, “smoothed” the bone, and added a “drain” in my gumline to prevent fluid from building in my jaw again. Fun stuff, let me tell you. Apparently, he believes my body was reacting to a stray bone fragment left over from getting my wisdom teeth removed. Great, so could this happen spontaneously for years??
Since Tuesday, I’ve been taking my antibiotics, managing the pain with Percocet and IBProfen, and WAITING for the swelling to go down so I can look and feel like myself again. I’m still waiting.
I’m going in to see my oral surgeon tomorrow to hopefully get the drain out and get more answers. In the meantime, cabin fever is setting in because I’m supposed to be relaxing. Though good for blog posts (as in, I actually find myself writing them), this is pretty bad for sanity.
I’d like to ask you RAers if anyone has experienced lower jaw swelling related to their RA? What was it like and how was it treated?
Alright, officially Invisible Illness Week was Sept 9-15th, but better late than never, right?
1. The illness I live with is: Rheumatoid Arthritis
2. I was diagnosed with it in the year: 2012
3. But I had symptoms since: probably 2010
4. The biggest adjustment I’ve had to make is: listening to my body and taking it easy when I’m in pain or fatigued.
5. Most people assume: they know what Rheumatoid Arthritis is, but they’re usually thinking of Osteoarthritis.
6. The hardest part about mornings are: I move a little slower than I used to. AND remembering to take my vitamins.
7. My favorite medical TV show is: Scrubs
8. A gadget I couldn’t live without is: Oxo Good Grips kitchen tools and my grip jar opener
9. The hardest part about nights are: when fatigue equals a busy mind and insomnia, not sleep.
10. Each day I take 6 -14 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: will try anything. Personally, yoga, acupuncture and changing my diet (no gluten, less dairy and sugar, more veggies) help a lot. If I could afford it, I would get massages more often.
12. If I had to choose between an invisible illness or visible I would choose: I’m a private person, so probably invisible.
13. Regarding working and career: I’ve kept my career, but I’ve embraced (and have been blessed with an office that embraces) a flexible schedule. This lets me start my mornings slower or work from home when I need to.
14. People would be surprised to know: how bad my symptoms were before I went to the doctor. I was really good at the “grin and bear it” denial technique.
15. The hardest thing to accept about my new reality has been: that this disease is chronic. When I was diagnosed I thought I would be the exception to the rule and go into remission within the year. This hasn’t been the case.
16. Something I never thought I could do with my illness that I did was: RUN a marathon.
17. The commercials about my illness: feature older people golfing and make me roll my eyes.
18. Something I really miss doing since I was diagnosed is: going out for a night drinking with my friends. This is a double no for me because the drugs I take (methotrexate) are hard on your liver and I try to be kinder to my body these days.
19. It was really hard to have to give up: alcohol (see above) and high heels. I still indulge in both on occasion.
20. A new hobby I have taken up since my diagnosis is: blogging!
21. If I could have one day of feeling normal again I would: go-go-go ALL day long – run, climb, dance, party. I’d wear high heels. I’d stay up all night. I wouldn’t even give a passing thought to “paying for it” the next day or even week.
22. My illness has taught me: I’m stronger than I think and everyone is going through something, so be patient and kind with yourself and others.
23. Want to know a secret? One thing people say that gets under my skin is: “But you’re too young to have arthritis!” If this were true, I wouldn’t have it and hearing this just makes me feel ashamed and misunderstood.
24. But I love it when people: ask me sincere questions and want to know more about RA.
25. My favorite motto, scripture, quote that gets me through tough times is: I have two I come back to: “Never, never, never give up.” – Winston Churchill; and “So it goes.” – Kurt Vonnegut
26. When someone is diagnosed I’d like to tell them: It’s tough, it’s scary, it sucks. It will get better. You will feel better than you do today.
27. Something that has surprised me about living with an illness is: the supportive community of people I’ve met (mainly through online support groups).
28. The nicest thing someone did for me when I wasn’t feeling well was: just let me cry and then ordered me Chinese food in bed and hung out all day, watching funny TV shows.
29. I’m involved with Invisible Illness Week because: I think awareness of invisible illnesses is important to funding research and finding cures.
30. The fact that you read this list makes me feel: honored and vulnerable