Creaky Joints

Re-introduction post

Hello, all! I haven't posted here in a while, and that's for a very simple reason: I don't really like talking about the difficulties I have with my arthritis. Writing about the struggles with my illness can leave me feeling a bit weak, exposed. Thing is, arthritis has been a part of me and my life for so long that discussing it as an issue or a challenge can feel a bit like leaving the bathroom door open--it's just very personal. And I don't want people to see me as "Oh, poor Heidi; she has arthritis." I want them to see me for my accomplishments, exclusive of this disease.

However, I do believe strongly in the power of the blogosphere, and my inbox has become full of enough of you kind folks responding to what I've written here and asking more questions that I've realized that there is a big need for personal information out there.

And of course, this is where I say that I'm not a doctor and that everyone's experiences with Humira vary. It's been a wonder-drug for me, yes, but that doesn't mean that you will respond to it in the same way. I love it and don't have many side effects, but check with your doctor.

In answer to a few questions/tips I've learned along the way:

• If your Humira is damaged at any time (left out at room temperature, etc.) and your health insurance doesn't offer a program to cover damaged medicines, Abbott will replace your damaged Humira dose for free. Just call 1-800-4HUMIRA and tell them exactly what happened. (They've saved me twice now--once when the Humira was damaged during shipping and once when I suffered an overnight power outage.) Hurrah for corporate responsibility!
• Humira now comes in a pen. Advantages: you won't accidentally put the needle in too deeply and the dose goes by faster. Disadvantages: you can't control the speed of the dose, and it still hurts like hell.
• Healthwell Foundation is underfunded and very slow. They are great folks, but you will have to call them a minimum of five times and fax any relevant information three to six times before waiting six months for an answer or reimbursement. Don't get mad; it's just how they are. (I just faxed my reimbursement forms to them for the sixth time--no reason why they only reimbursed for two doses, not all four, even though they did confirm receiving all pages of the last five faxes I sent over the last six months.)
• Healthwell has a form for upping your grant amount. Last year's grant ($1,400) only covered about six months of my medicine, so I found out (completely by chance; they won't tell you) that there is a form to request a higher amount the following year as well as forms for requesting reimbursement for medicine that wasn't covered when the previous year's grant ran out. Yes, it's paperwork. Yes, it's slow. Yes, you'll have to call and fax repeatedly before getting your grant or reimbursement. But really, with the current administration, we're damn lucky they have any funding at all. And they are giving us free money, so again, patience and persistence is the way to go.

Hope this helps. As I find out more about how to deal with Healthwell and Humira, I'll keep posting my experiences. Also, if I may whine/rant for a minute--StupidCare (UniCare), after 18 months of my taking Humira, now requires a pre-authorization form (not sure what the prefix "pre" means here, since I've been taking it for 18 months, but whatever) or PAB in order for me to take the medicine. Not sure why or why they haven't noticed that they've been paying for the med for 18 months, but I'll let you know as the paperwork develops.

I actually think the best solution here is a better job with better health insurance--I'll let you know how that quest develops as well!

Prescription assistance and hand surgery

Two big things today:

1. Just was informed by my pharmacist (and Healthwell Foundation confirmed) that my benefits for the year have ended. Turns out they only cover about six month's worth of copays for Humira, so now I must seek out another foundation to help with the nearly $300 monthly copay. My doctor is very active with the Humira folks, so he's already on it.
2. Went to see a hand surgeon this morning. He doesn't want to do joint replacement yet, with the possible exception of my right hand thumb. Instead, he wants to start slowly, just removing the nodules on both hands. He says that many people get great results simply from removing those annoying soft-tissue nodules that form all over the hands.

I will undoubtedly have that surgery, and I'll let you know how it goes. He suggests one hand at a time, with about a week's recovery time for each, two weeks before I can get back into the pool for water aerobics. :-( I'm already doing some calendar-checking to see when I can take a week off with no adverse effects to my speaking--I'm a little scared and nervous, but I also know this is a simple procedure and a relatively short recovery time.

In the meantime, I have another appointment with the surgeon next week to look at Xrays of my hands before we dive in.  In the next few days, I'll take pictures of my hands and see if we can get some before-after going. Just understand that this is a bit difficult for me to do--I've taken to hiding my hands in pictures, so posting this will be a bit, er, uncomfortable.

But I do believe that building awareness and community are the best ways to reduce fear and help others take charge of their own health, so I'll just have to get over that, now, won't I?

What do you do to avoid getting sick?

So now we come across one of the drawbacks of being on Humira--if you get sick, you have to go off the medication in order to allow your body to heal.

And last week, due to one colleague who refused to stay home when she was sick (don't get me started on this miguided work ethic that says you're noble if you work stick instead of taking care of yourself and respecting your colleagues), I caught a cold. Erg. So I've been off the medication for five days now. I didn't notice much of a change at first, but by Saturday (day three with no Humira), I woke up with stiff hands and knees and in need of a hot shower before facing my day. My tasks were harder that day--I was cleaning the house in preparation for Thanksgiving, and I kept having to rest/stretch as my joints got sore and stiff.

The good news is that the cold seems to be healing quickly--by Sunday, I wasn't sneezing or blowing my nose much at all, and my sore throat seems to be gone. I'm still low-energy, so I'm going to wait another day or two to finish fighting this infection before going back on Humira. All in all, I suppose it wasn't too bad as far as colds go, but it's still pretty annoying to have to be in pain (off Humira) for five days just because someone else decided she simply couldn't take a day off work.

In the future, I'm considering refusing to work in offices in which people are sick. I might not always have the choice of this as an independent contractor, but what do you think? If you're in this situation, what do you do to avoid getting sick and having to go off Humira?

Arthritic hands

My doctor has also ordered X-rays of my hands, wrists, ankles and feet, all of which have suffered from not being on effective medication for the last five years. It was actually a bit tough emotionally to do the series of 24 X-rays. I have a good amount of usage out of my hands--I still type 80 wpm, thank you very much!--but it was shocking to see them laid out on an X-ray slab. I couldn't get into most of the positions the technician requested because of the disfiguration. Just a little shocking/heartbreaking to realize what my hands actually look like.

I'll post a photo if I get my hands on a digital camera soon. And if I go through with the surgery, I'll post updates on what I find out and progress.

Seven months of Humira

A few observations from the patient, seven months in:

• The shots are getting less painful. The only part that hurts now is when I pull the needle out.
• My doc tells me you can now get the shot in a pre-filled pen, like an epi-pen. Cool.
• Did you know that Humira provides a portable cooler for travel? Also nifty!
• "minor irritation at site of injection", my ASS! I get a huge, softball-sized raised area--red, hot and damn itchy for four days after. Still worth it, of course, but my water aerobics students keep asking "what happened to your leg??" :-)

We're also working on reducing my Prednisone, since the Humira is working so darn well. Started at seven mg a day; now I'm down to five. We're taking it down 1 mg a month, and that seems to be working well.

Infections and Humira

So here's the update: the cough did go away after about 10 days, and I was able to take another Humira injection. The good news is that during those 10 days when I was off the drug, I didn't feel all that bad. Now, granted, I wasn't trying to salsa dance for hours on end or pole-vault or anything, but there was just a bit of stiffness, not too much actual pain.

This is really good to know. I was really worried about going on the drug because it's so easy to get sick these days, especially if one's immune system isn't normal. I was really scared that what would be a minor inconvenience for some (coughing a bit for a week) would turn into a major personal crisis for me--too much pain to work, etc. Happily, that has not yet been the case so far!

Still coughing

Ah, this is getting difficult. My cough is much worse, and I'm working a show this week. The odd thing is that I feel fine and energetic--I just have this awful-sounding cough that keeps me up at night. And now I'm 12 days late with the Humira injection. I don't mind the cough, but I do mind not being able to do my Wonder-Med injection!

I'm calling my doctor today to see if there is anything to be done. Updates to come!

Cough

[cough, cough] Still have this lingering cough. I feel mostly OK, with my energy back to about 60% of normal, I'd say. But my joints are getting all stiff again, and I can't take the Humira until the cough goes away.

Grumble, grumble, grumble!