Archive for category Drugs
You ARE a Beautiful & Unique Snowflake
Posted by My RAD Life in Dealing, Drugs, RA/RAD, Symptoms on September 22, 2012
I finally met someone who also has RA. She’s the new pharmacist at my pharmacy. She asked me how I like my methotrexate. I didn’t really know how to answer. “Like” seems like a strong, simple word when talking about any drug with side effects. I would like it more if it was obviously doing its job, but I think most my progress is from the Enbrel.
She told me how she’d had a terrible time on MTX. She had done monthly injections (infusions?) and had many of the side effects that are associated with chemo, including losing her hair. She’s now been switched to two other drugs and taken off the MTX and prednisone.
As nice as it was to meet someone with RA, the encounter left me a bit shaken. Her wrists and hands definitely show the signs of RA. And she hasn’t found a drug regimen that works for her yet, meaning it’s still getting worse.
It’s so important to remember that you are on your own journey. Her experience isn’t mine and doesn’t have to be. It’s so easy to get caught up in the horror stories. To see the disease path as inevitable. But it’s not. It’s really and truly not. If you’ve just been diagnosed, know that there are more drug options, more knowledge on the disease and more medical breakthroughs and research happening than ever before. We have a ways to go until we understand RA or have a cure, but it’s an exciting time in medicine.
Seriously, before you read another blog post or go to another support group, take a deep breath and remind yourself that you ARE a beautiful and unique snowflake (or at least your RA is ;).)
Injection Woes
Posted by My RAD Life in Dealing, Drugs, RA/RAD on September 13, 2012
I’ve been doing so well on my Enbrel injections that I started thinking I totally had the hang of it.
Last night, I stuck to the routine. I took my shot out to let it warm up, I tried to relax. I iced my right thigh and sterilized the chosen injection spot. I checked the expiration date and looked to make sure the liquid was clear and the little bubble was acting like it was supposed to. I took the lid off the pen and pressed it to my thigh.
And, boom. My heart starts racing and my thumb REFUSES to press the blue button to release the needle. What the hell? I’ve done this a bunch of times now. I know how much it hurts (yeah, sometimes it hurts quite a bit, but I know I’m able to deal with it).
I actually had to talk myself down from a full on panic attack. And then, of course, I got frustrated at myself for not being able to do something so simple. I put the pen down and paced my apartment, trying to calm my nerves.
Finally, I was ready to try again. Pen on thigh, my thumb pushed the button. NOTHING. I hate when this happens. I mentally prepare for the shot, and you push the button and for some reason it doesn’t release the needle. Ugh.
It took a couple more tries to actually get it. Re-positioning the needle, trying the button… When it finally did go, of course I wasn’t prepared, so I was a little surprised and probably pushed on the needle harder than I should have. End result: painful injection (it stung more than normal, bled a bit, and I wouldn’t be surprised if it bruises), mentally exhausting, and I’m dreading next week.
I don’t want to discourage anyone. There is a part of me that knows the weekly injections are an easy task that I’ve already mastered. I shouldn’t make it such a big deal.
Anyone have any tips for getting over the mental block of self-injecting? Or tips on making the experience less painful? Thanks to all of you! ❤
My Left Wrist
Posted by My RAD Life in Dealing, Drugs, RA/RAD, Symptoms on August 21, 2012
I wish I had had enough foresight to take before and after photos, but unfortunately I didn’t. After two cortisol shots, my left wrist is almost back to normal!
A bit of history: I hadn’t verbalized it, but pre-diagnosis I noticed that there was something odd about the bone of my left wrist – there seemed to be two little boney wrist bumps where there really should have only been one. I didn’t really spend too much time thinking about it. Just a little, huh, that’s funny. Fast forward to my first rheumatologist visit: my doc – “How long have these rheumatoid nodules been here?” me – “Say what?”
Of course, him pointing them out and giving them a scary name only brought them to the forefront of my mind. As I began treatment, they didn’t seem to be going down. Then, several months ago, they seemed, in my mind anyway, to be getting worse. Where there were once two smallish bumps, there were now three merging into one massive, swollen, misshapen wrist.
Whenever I caught a glance of it, my mind immediately leapt to the gloom and doom thinking of, oh my god, the disease is getting worse, treatment’s not working. Then there was a little voice in my head telling me I was embellishing both the severity of the physical deformity and what it meant to my disease prognosis. Both voices were making me a bit crazy.
Needless to say, I started wearing some big bracelets. Out of sight, out of mind, right?
This isn’t mine, but it’s similar to the style I was wearing.
Well, not exactly. My next rheumatologist appointment rolled around and I asked if he thought my left wrist was getting worse in an off-handed way. He didn’t say yes, but he just said, “I’ll shoot medication directly into it, that should work better.” Right. In my doc speak, that means yes.
Before I knew it, he was spraying cold numbing spray on my wrist and poking two massive needles of cortisol into either side. Truly, it didn’t hurt much. If you ever have to do this, it’s really nothing to be afraid of. It was more psychologically painful than anything (that’s right, I’m still not used to needles). The spray feels a bit uncomfortable and my wrist stayed kind of numb for awhile after.
Other bad news (at least I take it this way), my doc and I decided to raise my dose to eight Methotrexate pills per week (up from six) along with weekly injections of Enbrel. It’s hard not to be discouraged, because when I first saw my doctor, he threw out early fall as the time we may be able to have my RA in remission and take me off some drugs. The new time is March 2013. Just in time for my marathon for those of you who are faithful readers.
I’m trying to replace discouragement and disappointment of my progress with optimism. And hey, if I’m going to be on this crazy toxic drug, I might as well be taking enough for it to be effective.
I guess I was a bit shaken after my appointment (I need to stop going to these things alone), because I got into an accident with a parked car while parking at my apartment. I was trying to not use my left wrist, which wasn’t something my doctor told me to do but between the shots and the numbing spray, it felt weird to use it. My car is hurting worse than the other guy’s. For those of you who think you might be getting this procedure, bring a friend to drive you home.
The good news of all this is that my wrist is back to the size and shape of a normal person! No more big bracelets (unless I wanna wear them – they are pretty). No more constant reminder of my disease! Yippee!
Post injection. It pretty much matches the other side now.
Medicine Milestone
Posted by My RAD Life in Dealing, Drugs, RA/RAD, Symptoms on July 26, 2012
I filled up my first sharps container and sent it away in the mail today. I gotta say, I felt a glowing sense of accomplishment. Damn, that’s the number of times I’ve stabbed myself in the thigh, the number of pep talks I’ve given myself, and how far I’ve come.
So I deserve a gold star, or a gluten/dairy free cupcake LOL.
On that note, I wanted to tell you that I’ve had two weeks of perfect injections. No blood, drama, pain or swelling. No freakouts, tears, or anxiety. Here’s my new process: let the needle warm up for half an hour – definitely not less. When it’s even a little cold it stings more and I think it results in more welts. While it’s warming, preferably by the bathtub, I do something relaxing and distracting. A foot bath or read or both. About five minutes before, I ice my thigh. Then, during the shot I pull my skin a little tight, take a few breaths to relax and always press the injection trigger on the exhale. Afterward, I’ve been applying a natural, plant-based anti-swelling ointment that I found at Pharmaca. I think it does help reduce swelling.
Anyway, hope these tips help you. And congrats to all of you who have already reached your first sharps container milestone!
Visit to the Rheumy and the Enbrel Chronicles
First of all, I want to say that I love my rheumy. He is always optimistic about my improvements and the possibilities of getting better. As he assured me during our last visit, “You’re probably 80 percent improved since the first time I saw you, but I promise you will get much better from where you are today.”
Hearing him say how far I’ve come is a great reminder to appreciate your victories instead of focusing on what still isn’t perfect. So I had a small celebration for the realization that it’s been more than a month since I’ve had severe morning stiffness – woohoo!
I’ve made progress, but I have a ways to go. It sucks that I was in the middle of a mild flare when I saw him (still am), which is effecting my feet, wrists, energy and digestive system (or is that the meds, ugh). It made it all the more frightening when he said I have to go down to four methotrexate pills per week from six because the results of my liver function panel weren’t good. I just hope that going down on the meds don’t make my symptoms worse.
I asked him if my current flare might be related to the 10K I ran over Memorial Day weekend, to which he replied, “You can drive yourself crazy trying to figure out what causes what with this disease.” True, and I know that I’m guilty of this.
I explained that pre-diagnosis I was planning on training for a marathon in 2013, so I was worried that running wasn’t good for my body. He encouraged me not to give up that goal, which I love him for. So I guess despite the pain (it usually hurts after, not during running) and fears of making it worse, I’ll keep the goal and see how my training goes.
I also asked him about a weird blood burning sensation I’d had in my arms, especially near my elbows. That one stumped him a bit, but he said it wasn’t a concern unless it was happening frequently. If the symptoms are frequent, one concern is that the Enbrel is causing some sort of neurological side effect (great…). I haven’t had it since then, so I guess I’ll follow the “don’t worry” advice.
One more thing of note, I must of hit a blood vessel or vein giving myself my Enbrel shot last night because it bled, a lot. Eww. Aside from being gross (I’m a total wimp when it comes to these things), it’s fine. It barely even bruised compared to some of my less bloody shots, so go figure.
My takeaway from all this is to try to worry less and really, really try to not let RA rule my life, choices, or mood. Easier said than done, but that’s what I’ll try to do.
EDIT: Just want to add that during my first run after this doctor visit I choked on a bug – it just flew down my throat, gross! And so, another lesson (channel Stewie – What did you learn?): a) don’t run with your mouth open, and b) don’t run at dusk. Let’s hope this isn’t a bad omen for my training, haha.
Double Whammy
Posted by My RAD Life in Drugs, RA/RAD, Symptoms on June 5, 2012
Along with a mild flare and a new fun symptom (more on that in a minute), I got a call from the nurse saying that my blood tests flagged my liver function panels as high. For me this means dropping down to four doses of methotrexate per week instead of six and following up with another blood test in a month. This scares me, and is especially bad news to get on a day when your symptoms feel worse than they have in awhile. I don’t want to mess with my meds if their helping. Will my symptoms flare? Will it slow remission progress? So many questions.
Also, there’s this sense of I coulda done more to help my liver while it’s working so hard to process these crazy chemo drugs. I haven’t 100 percent abstained from alcohol (my rheumy said five drinks per week was fine) for example. For those of you on mtx, did you cut alcohol completely? Anything else you’re doing to help your liver?
And then there’s this weird feeling I’ve had all day as if the blood in my arms is burning. Like my arms are on fire from the inside out, especially by my elbows. Has anyone experienced anything like this? Is it a vitamin deficiency, med side effect or RA side effect? Or maybe I’m going crazy. I’ll be asking my rheumy tomorrow, so I’ll let you know what he says.
Despite the burning and flare symptoms, I made myself lift some weights and do some yoga. The distraction was great at least, but now it’s back to burning.
New Drug to Head to FDA Approval Panal
Posted by My RAD Life in Drugs, RA/RAD on May 4, 2012
U.S. panel seen backing Pfizer’s arthritis drug hope
Like any new drug, reading about this makes me both optimistic and wary. The idea of a pill drug to replace injectables is very appealing though! Check out the story here.
Why Nurses Matter
I’ve had two more reactions to Enbrel injections. The injection itself usually goes fine (except for this last time when the blue button wouldn’t push down again and it seemed like the liquid went in too fast…), but then the injection site starts to itch and turns into a big red welt that’s both itchy and painful.
The last time it happened I contacted my doctor. I’m lucky enough to have a doctor who is available via email. This is great and I applaud him for answering my questions so quickly. The only problem is, along with the promptness, he can be very abrupt. Sometimes that stings.
His reply to my question about the welts and whether or not I should be concerned or if he had advice was a very short, “…it’s pretty common. Hydrocortisone is fine to use. Let me know if you want to switch drugs.”
No I don’t want to switch. Not if this is starting to work (Is it? I’m not always sure.). The last thing I want is to start treatment again and get used to another drug. So I took it as a sort of “stop complaining” message.
About an hour later, the nurse from my doctor’s office called and said that she knew the doctor had been in touch already, but she had some thoughts. She told me that it could be that I was applying too much pressure to the pen. She suggested holding it more lightly.
It wasn’t much and I’m not sure it’ll work, but man I loved her in that moment. She took the time to realize that I might be looking for more help than he’d given and to offer real, heartfelt, personal advice.
Thank you to her and all the kind nurses out there. We don’t thank you guys enough.
Injection Insights
Posted by My RAD Life in Dealing, Drugs, RA/RAD, Uncategorized on April 18, 2012
But I think it gets easier...
In the last post I said I’d become a stabbing pro. I may have exaggerated a bit, but I will say that it has gotten much easier. It still hurts and it’s still not fun, but I don’t have to give myself a five minute pep talk before injecting myself anymore. I don’t have to countdown from 10, just to start the countdown again (it only takes the one countdown). I just take a deep breath, breathe out and press the blue top of the injection pen, count to 15 as the medicine flows in and I hear the second click and, walla!
I will share a few slight incidents in the Enbrel Chronicles however.
First up, traveling with Enbrel.
My third shot would find me on a trip to Costa Rica, which meant traveling with a medicine that had to be refrigerated but couldn’t be frozen. I packed it in my backpack with the Enbrel travel ice pack and a larger ice pack. This actually stayed cold enough to make it through six hours on a plane and five hours in a car.
I lucked out, because in Costa Rica I had a fridge in my room. When we arrived the room wasn’t ready, so the very, very nice woman at Hotel Luna Lleyna in Playa Tamarindo (I highly recommend this place, but that probably belongs on a different blog) stuck my medication in the beer fridge. When the power randomly went out for a day, she filled a big container with ice to keep the medication cold.
All of this refrigeration was a bit of a pain, but dealable. Laughably, when I finally gave myself the injection, I didn’t let it warm up enough – it didn’t quite make it to room temperature – and the shot hurt quite a bit and left a bruise that lasted for the rest of the trip. I won’t make that mistake again!
Second, the glitchy blue button…
I was feeling confident about my injection after Costa Rica. I had done this a few times. It hurt, but it wasn’t that bad. I also now knew to make absolutely sure it was at room temperature, so I let the pen warm for 35 minutes before sitting down to give myself the injection. I did my little internal pep talk (not the five minute version, the 30-second elevator pitch version) and my countdown and pressed the blue top, nothing. I adjusted the pen, did the countdown, and pressed again, still nothing. I did another countdown, changed my finger placement and pressed again, nothing.
I began randomly pushing it from every angle, nothing, nothing, then randomly CLICK! I think I visibly jumped, but did manage to hold the pressure to my leg.
Not sure why it was so glitchy, but some of the medication definitely ended up on my thigh rather than in it.
Finally, a weird injection site welt.
After the startling injection the week before, I was a bit nervous, but this injection turned out to be easy and pain free. I was relieved. I felt I was finally making headway.
Then, about 12 hours later, while at work I may add, my thigh started itching. I was wearing a skirt, so I scratched and was appalled to find an orange-sized welt at the injection site. I Googled it and found it was relatively common, so I refrained from freaking out.
I used hydro-cortisone cream and the welt eventually turned to a bump and eventually faded (it took about 24 hours for it to disappear). I’m hoping that was a one time thing, but I’ll keep you updated.
Learning to Stab Yourself In The Thigh Isn’t Easy
Posted by My RAD Life in Dealing, Drugs, RA/RAD, Uncategorized on April 14, 2012
Alright, I have to admit I’ve been a bit of a slacker at updating this blog in real time. By now, I’ve (almost) become a pro at injecting myself with Enbrel, but I wanted to share my experience of my first injection.
OK, so first the good news. After some runaround with my insurance (and contemplating the worst case scenario of having to move back home because of expensive drugs), I got approved for Enbrel at only $30 per month. I was thrilled. I immediately filled my prescription.
Now the not so fun part… I went to the nurse to learn how to inject myself. I was nervous. I hate needles. In fact, one time, when my little sister was about 7 and I was 16, the nurse had me get my flu shot first to show her how “easy” it was. I nearly fainted. (Embarrassing, I know.)
Anyway, the nurse was very sweet. She sat with me and gave me all the information – the injection sites (I’ll go for the thigh, thank you very much, the stomach still freaks me out), warming the Enbrel to room temperature, possible problems and side effects (that part was scary). Then she informed me that I would be giving myself my first injection.
I went a little pale. Yes, I know I was there to learn how to do it, but I thought she would just tell me and then give me the shot. After all, it was my first one! But no, the nurse kindly informed me that “it doesn’t matter how long it takes – and there are no cameras in the room, so if I want to cry, I can cry – but I wouldn’t be leaving without giving myself a shot.”
I gulped. We practiced with a needleless pen. The thing I had the most trouble with was applying the right amount of pressure and not getting startled by the “click” noise. Finally, I felt I was ready (mind you, this was about an hour later). I got the pen ready, held with one hand perpendicular to my thigh, the pressure making the blue tip disappear into my skin. Then with the other hand I pulled the trigger (OK, that’s a little dramatic, I just pressed the blue button). I heard the click, counted to 15, and watched the blue replace the clear liquid in the pen’s window. Then I released, my first shot over, a spot of blood on my thigh.
Yes, it hurt. Yes, it was gross. Yes, I was a bit shaky and white. But I was elated and proud. I had “graduated” from stab school. I had conquered my fear. And hopefully this was the beginning of beating my RA into remission.
-
You are currently browsing the archives for the Drugs category.
My RAD Life 