My Humira Starter Kit arrived today by FedEx from my Support Specialist at the Progress Program. Inside was a 2-compartment bag containing a journal, Humira Treatment Guide, 5 Steps card, an information booklet, a magnetic compliance device, a Medical Alert card, a Progress magnet, a DVD, Welcome card, demo auto-injector pen, a cooler bag, a reusable ice pack, and a Sharps disposable container.I am now awaiting their pharmacy to deliver the medication to my home, and a home-care nurse to visit and walk me through using Humira. I have been reading about others' experience switching to Humira from Enbrel. The pattern has been that Enbrel initially relieves the disabling symptoms, but the relief wears off. Noticeable improvement occurs for most after switching to Humira. This is not to say that the same thing won't happen with Humira, or any other biologic; perhaps the beneficial effects are time limited. Unfortunately, we are the guinea pigs for long-term studies on this group of medications.
Hi, I'm Jon. I am a 28 year old from Manitoba who has AS and as someone who has it I find your page pretty interesting. I started Humira in May and I've felt much better since then. I got the same starter kit. I was very intimidated at first but once the nurse who came to my place helped me with the first couple injections (he did it to me the first time and I did it to myself under his watch 2 weeks later) I've been fine. The injections with the pen are pretty easy in the end. I mention that because at first it seems so complicated, with the kit, the nurse etc. I hope your experience is the same as me because it's helped a lot. I'd say my pain was 11 out of 10 on the pain scale and now it's been at a solid 4 or 5 out of 10 since Humira. That's good enough for me!
ReplyDeleteAnyway, keep on updating the page because it's neat to someone else with similiar experiences. You often feel alone when you have AS as I'm sure you have experienced.
This is Jon from the earlier comment, just also wanted to pass along that for me in Manitoba we have Pharmacare and that covers Humira for me once I reached the yearly deductable which was $1600. Does Ontario have a similiar plan? It may vary by how much you make but I'm sure you'll be looking into that. Good luck with the injections from one AS person to another. :-)
ReplyDeleteProgress will pay for your medication in full or will pay your deductible.
DeleteThat way the medication will cost you nothing and once your deductible is paid whether quarterly or semi annual then all your other medications will
be at no cost.
Sorry to bombarb you with these messages - you don't even know me! But one neat note about the Progress people, they call you every 6 weeks or so to check up on you so it does seem like they are pro-active in helping out. For example they mailed out more of those "toxic waste containers" for me, did a conference call with my insurance company etc.
ReplyDeleteHi Jon,
ReplyDeleteI am really glad you're enjoying the site. My intention for blogging about my experience with AS is frequently questioned by people who don't understand how isolating this disease can make us feel, and how meaningful it is to connect with others who share that experience.
That's hopeful for me to hear of your symptom relief with Humira. It's hard not to be cautious trying new medication, especially biologics; I am cautiously optimistic that Big Pharma discloses all known side effects of these drugs to the public--it would not be profitable to do so. But when we so desperately need relief from our symptoms, we're guinea pigs.
I've been so symptomatic over the last month that I can't even get to sleep before 5am because the pain is excruciating, and the stiffness is unbearable. I toss and turn, and just end up walking around the house trying to self-massage with enough pressure to make a small dent. I am hoping Humira will bring the comfort I desperately need right now to get a few hours of uninterrupted sleep.
Please keep in touch and feel free to share your experiences on my blog.
Stay strong. We're in this together.