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This is a short, but vital, post. If you’re anything like me, you’ve had more than your lifetime’s share of needle sticks. Chronic pain / illness patients get a lot of blood drawn, right? Well, I’ve been getting blood drawn at my family practice doc’s office for the last few years. But the last time one of their nurses drew my blood, I had a 3″ x 2″ bruise AND a huge lump! If that wasn’t enough, I actually had a needle scratch near the site too. Clearly, this nurse was NOT skilled at venipuncture. And the lump? It was there because she not only punctured my vein as she entered, but then kept on going and punctured the other side of the vein too.
This was of course completely unacceptable. I called the doc’s office to let them know (kindly) that this particular nurse had been sorely lacking in skills. And remind them that it’s especially unacceptable on a patient who is immunosuppressed. They did apologize, and suggested that I request a different nurse the next time. Yup … you bet!
Instead, I decided to do what I had done some years ago. I decided to make friends with some people who do nothing but venipuncture – at a local diagnostic lab location. I chose Quest Diagnostics because they had been processing the blood from the doctor anyway. So I assumed (rightly) that my health insurance would cover that lab. And let me tell you, this was the right choice!
The lab tech was fantastic! Friendly, professional, no waiting, and most of all … really, really skilled at venipuncture. The bruise is only the size of a pencil eraser, if that! Minimal pain and maximum patient satisfaction. Definitely worth the switch!
I really do love Humira. It has helped me huge crazy lots. All the other medications took me from 10% of normal to 70% of normal, which is pretty great. But Humira has brought me to 95-100% of normal. And I am so grateful!
On the downside … the injections. My rheumy showed me the first time. Two weeks later when it was up to me, I didn’t remember how the pen worked. I ended up with a massive bruise, and a slightly bruised ego too. And after a few injections, I discovered that injecting into my belly is not for me. After some hints and tricks from another RA patient, I felt like Humira injections were mastered. And everything has been just ducky for nearly a year.
Today I had a first though … so I thought I’d share. Just because.
I was in the middle of cooking this afternoon and I realized that I had twice ignored my iPhone reminders for my injection. I was afraid I’d forget my dose. So I quick ran upstairs for a bandaid and grabbed my supplies (alcohol swab, injector pen, etc.). In the middle of this cooking endeavor, I stopped to do my injection.
Probably I shouldn’t have been rushing. Probably I should have stuck to my usual schedule. But either way … I had a little incident.
When I injected the Humira today I must have hit a blood vessel because I had seriously spurting blood for about 30 seconds. That’s never happened before. It was a little freaky … maybe even a bit scary. Thankfully the blood clotted pretty quickly. And hopefully I won’t have much of a bruise. Next time I will look for blood vessels close the surface of my skin …
All in the fun day of an RA patient!
As a holistic health coach, I am blessed to be part of a large and vibrant community of progressive-thinking folks. I have learned a tremendous amount about nutrition and ultimately about wellness from my training and experience. In fact, it’s this kind of naturally-based healing/health that I have focused on my whole life.
Many years ago I was a leader for Weight Watchers … my first experience with “diet” and nutrition programs. I’ve done yoga for years, and spent a lot of time at gyms working out before that. I’ve had acupuncture. I’ve trained in Reiki and receive it regularly. I’ve received other types of energy healing regularly for years. I’m a massage therapist who depends mightily on a weekly massage (and have for 6+ years). I love having green smoothies and shopping at my local farmers’ markets. I believe in the power of prayer. And for the most part, I’ve always tried a lot of natural healing methods before turning to medical care.
And despite all this stuff … the RA symptoms started. Reiki and massage didn’t help (although they certainly didn’t make anything worse). I tried to keep eating healthy, but my ability to exercise became severely limited. I had to cut my work schedule back by 20% to keep the incredible pain in my hands at bay. Symptoms didn’t get better when I wasn’t working either. Weight gain ensued … and it was all depressing. I hung in there with the natural healing methods as best I could, but I knew it wasn’t going to be enough. I’d reached a fork in the road.
It was time to pursue medical diagnosis and treatment. You’ve read about that process here on the blog, so I won’t repeat it. But let me summarize the results: I feel a thousand percent better! Practically my old self. I continue to pursue all my natural health and wellness methods, which support the medical process that keeps me going.
What I discovered is that it isn’t a fork in the road, but a new path. I don’t have to give up the things that have always helped me. I don’t have to feel guilty about getting the medical treatment I need to be well. In fact, my rheumatologist has been pretty darn impressed with my incredibly low inflammation levels. The other RA indicators are still positive, but my liver is processing the meds in the healthy way and my overall symptoms feel mostly under control.
So for those who might judge because I’ve chosen to integrate these (sometimes opposing) paths … take a walk in my shoes before you tell me I’ve done myself wrong. And remember, I wear mostly “sensible” shoes now … not the beautiful higher heels of my youth. So it may not be as easy or much fun to be in my shoes … but I’m happy here. Isn’t that what life is all about?
**This blog post is part of a larger Blog Carnival organized by Rheumatoid Arthritis Warrior, Kelly Young. Please visit the other posts as well … this carnival’s topic is “Resistance to Rheumatology Treatment”**
Sometimes it pays not to take “no” for an answer. Especially when the “no” comes from one of your medical treatment team.
I have had pretty decent results from the Plaquenil and MTX. But maybe it’s the Type A personality inside me … I’d like even more results and any reduction in long-term damage I can get. So I’ve been preparing to start a biologic drug. First we did the TB skin test and the necessary blood tests — all negative. I researched and made the decision to go with Humira.
And then the rheumatologist said he didn’t think we should submit the paperwork to my health insurance. Once I picked my chin up off the floor (surprised much?), I got my pushy self going. I had a list of why we should move forward with a biologic drug — all the things that would bring me closer to the old normal life. They sure made sense to me.
The reason why we shouldn’t submit? Because my rheumy just didn’t think the health insurance company would approve this medicine for me. My response? We’ll never know unless we try. No one will punish me for trying and getting rejected. And I just have to know where I stand.
He asked me to wait until my next appointment (6 weeks away). And in the meantime his staff would work on the situation with the health insurer. Sounded like a fair plan to me, so I agreed.
Would you believe this? Four weeks later, and it turns out my health insurance doesn’t require pre-approval for Humira! So what would have happened if I hadn’t been that pushy patient? I would have missed out the opportunity to take a medicine that has a lot of potential to help. I don’t know about you, but if I hadn’t pushed I also would have been sorely pissed to find out later that I could have been taking the medicine all along.
So the first shipment of Humira arrives this week. Thank goodness I’m not afraid of needles!
~~ Would appreciate any hints / tips / tricks though ~~
Y’know back in the day … the most intense medication I had in my cabinet was OTC NSAIDs or some cold medicine. There were a lot of vitamins and minerals around the house … and I took them regularly. These days … it’s a whole different story!
One Rx NSAID and two DMARDs later (and Rx vitamin too) I have one more decision to make. My rheumatologist believes in treating this (luscious) RA aggressively and I agree with him. So we are going to add a biologic on top of everything else. But which biologic is now the big question?
I have to consider my health insurance company’s tiered formulary, because a biologic moves out of the Tier 1 drugs I now take. The rheumy suggested one drug that’s in Tier 2 and another that’s in Tier 3. And two more that aren’t in the formulary at all. Picking my battles, I feel like I should start with the Tier 2 drug … considering it’s more likely to be approved.
Tier 2 drug: Humira
Tier 3 drug: Enbrel
Non-formulary: Orencia or Remicade
I’m also looking at some of the practicalities of my life. I’m not needle-phobic although I’ve never had to inject anyone else much less myself. So maybe an injectable would be okay. If I can’t do the injections, then my husband will be another option. Although he swears he could never do it … and I tend to believe him! I also like that Humira is bi-weekly or weekly.
At 45 I still have good veins in hands/arms. So it wouldn’t be hard to do infusions, but why start there yet? I also know that I don’t sit still very well unless I’m completely exhausted. So the idea of sitting for an infusion doesn’t seem like a lot of fun. I’m also a small-business owner and making money depends on my presence. So that’s another nail in the infusion coffin.
I’m really leaning towards Humira, despite all the dire warnings and possibilities of major side effects. There isn’t a single biologic that doesn’t have similar warnings. Additionally, I have read some very positive reviews of how much it has helped RA patients. And the alternative of joint damage just isn’t an option I’m willing to take lightly.
If you were in my shoes (what you know of them), what would you do? Thanks!