Monday, January 26, I had my first Actemra infusion. I’m not sure how to feel or react to this, exactly. Hooray? Congrats to me? Holy shit? THIS BETTER WORK? In any case, it’s a new chapter in my RA life. Actemra is now the fifth biologic drug I’ve tried since I first began biologic injections/infusions, starting with Enbrel in autumn 2002. I can’t believe I’ve been on them that long! Luckily (I’ve been very lucky) I haven’t had problems with side effects with any of these still fairly new medications.
Before beginning Actemra on Monday, I received bi-monthly Remicade infusions for about seven years (for the second time). I had been on Remicade once before from approximately 2004-2007, then I switched to Humira injections because I moved to France briefly to teach English (my doctor and I decided it would be easier to do injections in a foreign country rather than trying to sort out getting infusions while abroad). When I returned home to Minneapolis from France, I switched to monthly infusions of Orencia, basically because I really hated giving myself shots; I never got used to doing it. I can’t remember how long I stayed on Orencia, but my rheumatologist and I decided that if I was going to stick with I.V. infusions, Remicade seemed to work a bit better for me. So after a brief time on Orencia, back to Remicade it was.
A few months ago my rheumatologist and I finally decided that it was time to change my RA treatment and try a new biologic. Remicade just didn’t seem to be working that well anymore. I was on prednisone more often than I wasn’t due to frequent and stubborn flare-ups. One of our main goals for my treatment has always been to stay off of prednisone. And now that I try to remember, I think it’s been at least a few years since I’ve been off of it consistently for more than a few months at a time.
So! While starting a new medication can be scary and worrying, I’m also trying to be hopeful and positive that Actemra will be a good turning point in helping to stabilize my RA and maybe even put me into “remission” for the first time. I’m so ready to have a good long stretch of significantly decreased pain and flares and especially a nice lengthy period of NO PREDNISONE.
I had my Remicade infusion yesterday and it went fine, as usual. And it was boring, as usual. There was a young girl in the “infusion bay” next to me who was watching TV and had Ru Paul’s reality drag show blaring. So annoying. There was a young guy in another bay blabbing really loudly too, which was also getting on my nerves. If I have to sit hooked up to an I.V. for three hours I’d prefer it to be quiet, but eh, what can you do? I had planned to read a lot more of my book but instead wasted a lot of time playing with my new iPhone. So addictive! That’s all I have to report, really. I’m glad the infusion is done until the next one in eight weeks. Then I’ll have to start fighting with my insurance company and deal with the stress of getting financial assistance for the year. My insurance “starts over” January 1st AKA turns to crap. I know I shouldn’t complain though because at least I have insurance. I can’t imagine what it must be like for people who have RA or other chronic illnesses who can’t afford insurance. It’s criminal, really. I end up paying a ton in out-of-pocket costs, but I’d be so far in debt if I didn’t have any insurance.
Ah, what else is new? I drove again tonight for a bit. Exciting! I also have not taken any pain medications today, although I might have to pop a Percocet before bed. Ok, I’m going to go watch a movie or something.
Sorry, I know I forgot to post yesterday. However it was a strange Monday which felt more like a Sunday, so…ah, yeah. I also didn’t get out of my pajamas all day (lazy). Surprisingly my work was closed due to a crap-load of snow we just got Sunday and yesterday. I’m so sick of this weather. CABIN FEVER. Will Spring ever come? I am growing more and more doubtful. And restless.
In RA news, my right hand and wrist are starting to flare up. I’m a few weeks overdue for my Remicade infusion, so maybe that’s why. I just scheduled my Remicade appointment for Friday afternoon, so it will be good to get that over and done with until the next appointment in April. Not surprising, but I also found out recently that PANF (Patient Access Network Foundation) is currently out of funds, so after this infusion Friday I will have to pay all out-of-pocket costs for my future Remicade infusions unless they get more money. This is worrying, but it has happened and worked out in the past so I hope by the time I need another infusion they’ll have more funds for RA. I just can’t afford to pay $1,000 every two months for one medication.
TONIGHT is Week Two of the karaoke contest at Grumpy’s. The theme this week is “the 70s” – I think I’ll be singing Hanging on the Telephone by Blondie and Heroes by David Bowie. KARAOKE MANIA! When my RA or the weather or any other little stupid thing is getting me down, it’s always really great to get together with friends. I can’t wait for tonight. Hope I don’t bomb.
I finally heard back about the status of my Medical Review from the Peace Corps yesterday – bad news. I have been officially NOT accepted into the Peace Corps because I did not pass the Medical Review thanks to having rheumatoid arthritis. The woman on the phone really didn’t have much additional information (nor did she seem to know what she was talking about when I tried to ask questions). She just kept saying that I wasn’t accepted because of one of my medications, Remicade, and that I need to have lab work done every three months because my condition is chronic. I think she repeated this at least three times. Yes, yes I understand. I tried to bring up the fact that I have lived in both Ireland and France and while living abroad found a way to get the medication and treatment I needed to keep my RA stable. She just told me that I’ll be receiving a letter from the Peace Corps soon with instructions detailing how to write and submit an appeal. I’ve decided I will submit my appeal and see what happens. What else can I do? Despite having a chronic illness, I really do think I would be a great asset to the Peace Corps and could make it be a wonderful experience. I realize on their end that I am probably a risk and liability to them, but I still don’t think it’s quite fair.
Sorry for not updating yesterday but I stayed home from work sick and basically spent all day lying on the couch watching TV in my pajamas. I don’t have that much to report right now anyway. I seem to be having a small flare-up in my right shoulder at the moment which started sometime last week. The pain isn’t that bad, it’s just more of an annoyance. I think I should be able to get rid of it without having to resort to going back on prednisone. I hope.
Regarding other exciting RA info – I keep meaning to call PANF (Patient Access Network Foundation) to see if I still have available funds from them to use toward my next few Remicade infusions. I’m due soon for my next infusion and I don’t want to have to put it off, of course. This shoulder flare-up is making me suspicious of needing the Remicade soon. PANF helping me out with my deductible/out-of-pocket for the insanely expensive Remicade infusion is wonderful and I appreciate it so much. However I’m also not looking forward to having to deal with all of the paperwork crap and waiting two months for everything to go through from Fairview billing/health insurance/PANF. Dealing with all of that is such a huge pain, but I know I shouldn’t complain. Without the help from PANF and/or the HealthWell Foundation, I would not be able to get the medication I so desperately need.
I had my Remicade I.V. infusion today which went well, as usual. Today’s session was especially nice because for most of the three hours I was there, the entire place was empty. QUIET! While nurses took my vitals, pumped my veins with a steroid, saline, and finally Remicade, I tried to relax and read my book. These bi-monthly infusions are kind of a pain, but I prefer them over having to give myself injections of Humira or Enbrelweekly or bi-weekly (which I have done before). The Humira injection is especially painful due to the preservative that’s in it (the worst stinging pain you can imagine as soon as the needle pierces your skin). Yes, I’d much rather have a nurse gently hook me up to tubes than to have to stab myself with a sharp dangerous needle every two weeks in the fat of my lower abdomen or upper thigh. I’ve been on and off Remicade since 2003, and throughout all of the tests and trials of other similar medications, so far it’s been the one that has worked best. I feel very fortunate that during my decade of having RA I haven’t had a lot of trouble dealing with side effects from all of the strong medications I’ve been on. Other people I know and have heard about have suffered almost more from the meds than the actual RA. It’s a very frustrating and “Catch-22” situation – what’s worse, the disease or the drugs?
Here is some “fascinating” information about Remicade from their website — if anybody’s interested in what is coursing through my veins at the moment:
REMICADE is a biologic therapy that recognizes, attaches to, and blocks the action of a protein in your body called tumor necrosis factor alpha (TNF-alpha). TNF-alpha is made by certain blood cells in your body.
The immune system protects the body by responding to “invaders” like bacteria, viruses, and other foreign matter that enter your body by producing antibodies and putting them into action to fight off the “invaders.”
In plaque psoriasis, rheumatoid arthritis, psoriatic arthritis, adult Crohn’s disease, pediatric Crohn’s disease, ulcerative colitis, and ankylosing spondylitis, TNF can cause your immune system to attack healthy tissues in your body and cause inflammation and damage.
If these diseases are untreated, it can cause permanent damage to the body’s bones, cartilage, and tissue.
REMICADE will not cure inflammatory disorders, such as plaque psoriasis, rheumatoid arthritis, psoriatic arthritis, adult Crohn’s disease, pediatric Crohn’s disease, ulcerative colitis, and ankylosing spondylitis, but blocking TNF-alpha may reduce the inflammation in your body.
A possibly lengthy, hopefully not boring post about the hula-hoops I have to jump through and numerous handstands I must do in order to afford to get this treatment. Without insurance , the total charges for Remicade and its administration = $6,275.00 – EVERY TWO MONTHS. I probably don’t have to tell you that my crappy insurance doesn’t pay for all of it. Thank God for The Patient Access Network Foundation, which has allowed me to continue with Remicade and therefore let me live a fairly normal life (instead of one of intense pain and probably bound to a wheelchair). But yes, more on this later.
(P.S. My knee is better and it does not miss the peas)
I’m driving up to St. Cloud tomorrow morning (EARLY! auuugh…6:30) to take photos for the Arthritis Foundation. There’s an arthritis fundraising walk going on there, similar to the annual one in the Twin Cities and the JAM walk I volunteered for in March. It’s a really nice course/path by the river and I’m looking forward to it. I just hope I can drag myself out of bed and get there in time. I am NOT a morning person, and I’ve had to wake up super early every day this week for Census training. It will be worth it though. Let’s hope I get some good pictures (I’ll post them on here sometime soon, probably).
Sleep…sleep…I JUST WANT TO SLEEP. uhhhhhh.
And my body is hurting worse as I wait to get accepted for Remicade assistance. I worked two hours this morning for the Census and then 5+ hours at Dan’s typing/data entry. By the time I left there my wrists, hands, and shoulders were throbbing. My right hand is starting to swell, too, which is worrying. I just hope my application with the Health Well Foundation goes through next week. Why must these things take so long? I need my drug now! I refuse to go back on prednisone.