I haven’t posted for a while because things have been either too hectic or so quiet that there hasn’t been much to say. However there have been some new developments on the health front that are worth sharing.
After my hip surgery, I noted that my left shoulder was bothering me. I had surgery on that shoulder in the fall of 2007, but that seemed to solve the problem. I assumed that the issues were because I was using my upper body more for mobility — getting out of bed and using my walker then my cane (with my left hand). However, after a reasonable time when I quit doing those things had passed, I noticed that not only was my shoulder not getting better, that I was continuing to lose mobility. I can’t raise my arm above shoulder height and it’s painful to reach very far in any direction. Driving and getting dressed in the morning are adventures every day. Considering the fact that I’m also not supposed to bend at the hip more than 100 degrees or cross my right leg past my midline (which means I have to be very creative to tie my shoes), mornings don’t start as well as they used to for me.
At any rate, I went to see Dr. Tucker my orthopedic surgeon for my final hip check out in December and mentioned the shoulder issue. So he sent me for an MRI the Saturday before Christmas. I spent the period between Christmas and New Year’s shutting down and moving out of my consulting office as I accepted a job with one of my clients — so I was packing boxes and schlepping things around with my sore shoulder. My follow-up visit with Dr. Tucker was on New Year’s Eve. I truly expected the MRI to come back perfectly normal — simply because all my MRI’s come back normal. This one didn’t. They found several small tears in the rotator cuff, tendonitis, and increased arthiritic activity from my MRI I’d had the year before when I had surgery. Ouch! No wonder my shoulder hurt. After discussing the various options, Dr. Tucker injected my shoulder, hoping that would calm down the tendonitis and arthritis.
You know, there are a lot of things you can do on New Year’s Eve — especially in Dallas. If anyone offers you the option to have your shoulder injected, don’t take them up on it. I probably would have waited, but it was New Year’s Eve and I new insurance with my new employer starting on New Year’s Day, but I hadn’t yet received an insurance card. Plus I’d more than settled my 2008 deductible, so I felt like I should get all the good I could out of that situation.
The fact that I had increased arthritis in my shoulder, plus the fact my knees have been killing me and I’d been having increasing stiffness in the morning, basically told me I probably shouldn’t have gotten off the MTX, so I made an appointment to see my rheumatologist.
I won’t bore the reader with the details of that particular office visit. Let it be suffice to say that my appointment was at 11:00 am and I finally got to see the doctor at 3:45. I really like Dr. Cheatum, but his scheduling / office procedures are not patient friendly in any sense of the word.
The net result is that starting this week, I’ll be on Humira. There are a lot of personal lifestyle reasons that I made the switch. The terrible fatigue I experienced with MTX every week after taking it apparently isn’t as much of a side effect with Humira. And you do an injection with Humira every other week whereas you have to take MTX every week, so even if there are some short-term effects, I’ll only have them half as often.
I did some research on the injection. I am using the pre-loaded pen rather than the pre-filled syringes. I don’t like to watch myself get poked when someone else does it and when I had to give myself a shot of Lovenox every day for two weeks after hip surgery, I really hated it. The shot itself was nothing, but it was all I could do to watch myself slide that needle into my skin. At least with the pen, all I have to do is punch the trigger and it does everything for me.
The bad news is is that the injection is supposedly extremely painful. I’ve heard both sides of the story — the injection is easier so you can control it, no the pen’s easier because its automatic. I did pick up a few tips to make things easier. Humira has to be refrigerated and apparently letting it come to room temperature helps keep it from stinging. Icing the injection site to numb it seems to help some people as well. You can do the injection in your stomach or the top of your thighs and apparently the stomach is easier because it has more flab.
Wednesday night I’ll find out the truth. Without going into too much detail on why I picked Wednesday, let’s just say that traveling through airport security with an icepack and a weird looking device, then figuring out how to refrigerate the pen until I’m supposed to use it while I’m traveling can be very complicated. Looking at my travel schedule between now and the end of the year, I don’t see any travel happening on Wednesday night at all.
A couple other notes about Humira for those with RA that read this blog. It can be very expensive. My four-week supply of two pens was about $1570 before insurance kicked in. It covered all but the $25 co-pay and the company that makes Humira will give you a card that helps pay up to $325 per prescription, so that helps. My prescription wound up not costing me anything. (On the other hand, the insurance company is being stubborn about paying for my Celebrex prescription. The mobic that I’m on has started bothering my stomach, so Dr. Cheatum switched me. The pharmacy was going to give me 1 month’s worth, but it was $270, so I told them to wait until we could get this straightened out. I can stay on Mobic for another week or so until we get things taken care of.)
The other thing is that while officially you’re not supposed to feel the effects of Humira for about 3 months, many people start feeling better almost immediately, so I’m hopeful that it will help my shoulder and the other pieces and parts that are getting squeaky.
One of the things that concerns me is that Humira severely depresses the immune system. A virus that gives a normal person the sniffles could very well hospitalize me or worse. And if I have surgery or anything like that I have to stop Humira. So if Dr. Tucker decides we need to fix those tears in my rotator cuff, I’ll have to stop the medicine almost as soon as I started it.
A final word about the other side effects for those of you who are interested. It increases your chance for certain kinds of cancer (particularly some of the skin cancers) by up to 3 times. It also makes you very susceptible to fungal infections — like histoplasmosis which can kill you. It’s not a very pleasant drug and its new enough that the long-term side effects aren’t yet fully understood.
I’ve already tried NOT taking any of the drugs and, based on the shape my shoulder is in, that’s not a good idea. But I’ll take quality of life any day over quantity of life and Humira has the potential to do that.
I’ll post more after my injection on Wednesday. Thanks for checking in.