Third loading dose of Remicade

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Two days ago, on Monday, I completed my third and final “loading” dose of Remicade leading into the regular schedule of an infusion every six weeks. Because I hadn’t responded to the first two doses, my rheumatologist increased the Remicade from 6 mg/kg to 7 mg/kg (an approximate 16% increase).

This morning I flared. This is not the best sign that the Remicade is or will be working well.

The infusion went well. It was a different infusion nurse and, as much as I liked the first one, I liked this one better. She got the IV started on the first stick (which NEVER happens) and I didn’t have any side effects during the infusion. As I’d had a headache previously I took some Tylenol ahead of time. The infusion did make me very tired and I wound up going home and sleeping the rest of the afternoon.

I did pretty well yesterday, but this morning I woke up at 2:30 with my ankles and wrists severely hurting. Then the “real” flare started and seemed to move from the bottom of my feet up through my knees, hips, back and shoulders. I felt like if I moved, I would cry it hurt so bad. I finally got back to sleep around 5:30 and when I woke up at around 8:00, most of the severe pain had passed although I was very, very stiff and I was still sore when I moved around.

Part of it may be the fact that my prednisone dosage has dropped from 10 mg to 5 mg a day, but it’s still not a good sign to have a flare after having such an intense dose of biologic medication less than 48 hours previously.

My next infusion is scheduled for mid-November with my next rheumatologist appointment in mid-December. However, if I continue to have issues, I’ll move that appointment up earlier. It does take time for biologics to work so I still have hope that I will start showing improvement.

I hope whatever your day holds it brings both health and happiness. Thanks for checking in.

When You Can’t But You Do Anyway

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… While employees with sick leave benefits have some flexibility to take the day off (as long as it’s not too often), others have to make a choice of going to work or not getting paid. RA sufferers who are also caregivers – moms and dads and those taking care of aging or ill family members – are probably the most conflicted. Like the commercial says, sometimes you just can’t call in sick …

Read the full post at: http://rheumatoidarthritis.net/living/cant-anyway/

More, more, more

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I hate more drugs. Sometimes it seems like all I do is manage my and my husband’s respective drug therapies and it seems like I’m always swallowing a pill. But sometimes, I guess, more is better. We’ll see.

I saw my rheumatologist last week. It was the first appointment after the first two loading doses of Remicade. Per Remicade’s website, the recommended dosage for RARemicade is 3 mg/kg of body weight repeated every eight weeks after the loading doses (loading dosage is one infusion at weeks 0, 2, and 6). Because I’ve “failed” at previous treatments, my rheumatologist started me at twice the normal dose (6 mg/kg) with anticipated infusions more often (every six weeks rather than every eight).

In some ways, the rheumatologist appointment was good because I was in terrible shape. Don’t you just hate it when your RA conveniently takes the day off when it’s time to see the doctor? It’s kind of like when your car quits rattling when you see the mechanic. There’s not much to talk about. But this time when I saw the doctor, my joints were swollen, I was in pain, I was fatigued, my hip bursitis was back, and I’d put on 15 pounds thanks to the interim prednisone supplement. The first two loading doses of Remicade clearly hadn’t had much, if any, effect. While I understand and accept that it can take several weeks for biologic treatments to start working, I have to admit disappointment that with each passing day I seemed to be getting worse. (Note that I’m also on 20 mg of Arava/leflunomide in addition to the prednisone.)

To me, changes needed to be made and my rheumatologist obviously agreed because she was the one who spoke first. In the short term, she’s reduced my prednisone to 5 mg/day to help slow the weight gain, but she also did a steroid injection for my hip bursitis to help calm that down, especially since we’re cutting back on the daily dosage. That did help, almost immediately.

In the longer term, she increased the Remicade infusion to 7 mg/kg. Other than a bit of a headache during the infusion, I haven’t noticed any negative side effects (or any positive ones for that matter), so I don’t know why I get nervous about upping the dosage. I trust my doctor and the Remicade site indicates that dosing can be as high as 10 mg/kg every four weeks. I just keep thinking that with all these drugs that I take, that there is some tipping point where my body will rebel at all the chemicals I put into it.

In addition to the changes to Remicade and prednisone changes, my rheumatologist has prescribed Tramadol for pain. She prescribed it early on in our relationship but I quit taking it because I took it at night and felt “hung over” the next morning. This time it seems to be controlling the pain but without so much of the after effects. Of course, I’m consulting now rather than having to show up at a corporate office every morning, so even if there is some carry over, there isn’t as much impact to my daily life.

So more Remicade, more pain medication, less prednisone. Two steps forward, one step back. (Or is it the other way around?)

I hope your day is filled with more of whatever makes you happy. Thanks for checking in.

My new iPhone6

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I thought I’d diverge from the usual health-related topics of this blog and just put a few comments out there about my new iPhone6 and my experience with the Sprint retail store.

I looked online for information about the phones both from Apple and what my carrier (Sprint) offered and decided to go into a Sprint store so I could talk to real person.

I wound up getting the iPhone6 rather than the iPhone6 Plus due to the sheer size of the instruments. I have small hands and handling the smaller version is going to be enough of an issue without choosing the larger one. I did get the 64MB of memory rather than the 16MB, which is probably overkill for me, but I tend to load up on books and movies when I travel.

I wound up getting the model with the silver back which has a white face rather than the one with an all-black face like I prefer — simply because that’s what the store had available. I don’t really care one way or the other it’s just going to take some getting used to.

Transitioning was easy. All my contacts and settings were basically transferred from iCloud right down to the wallpaper on my phone. I did have to re-download my Kindle books from the cloud and input the password to my mail accounts (and I’m assuming any other apps that I use) the first time I used them. I also had a bit of a time synching Bluetooth to talk to my car, but nothing really too taxing. Of course when I first tried to synch with my computer, I had to upgrade to the latest version of iTunes, but that was a minor inconvenience as well.

Overall, I like the phone. The buttons are rearranged a bit to make it more usable in the larger size, which is good. I haven’t tried out the new camera/video yet which is supposed to be one of the hottest new features. The other notable new features include faster processing and longer battery life. Any addition to the battery life will be greatly appreciated as my old 4S would run out of battery after then end of a full day (or even not-so-full).

I have to admit that while my Sprint sales rep was very personable, he really wasn’t that knowledgeable.

  • I had to tell him that Sprint offered a minimum of $200 trade in against an iPhone6 (he originally offered me $142 or so for my old model).
  • It took him a couple of tries to get the option that I wanted for purchasing (purchase the phone outright — which was basically covered by their buy-back offer), and sign-up for a two-year contract at their ridiculously low $50/month.
  • He somehow managed to add in a $5/month international calling fee, which I then had to call Sprint customer service to remove. (I didn’t see the final bill until I got home and saw the email.)
  • While in the store, I wanted to do a final back up to the iCloud. (I hadn’t anticipated actually buying a phone today), and he “connected” me to a wireless network that wasn’t really working, so I wasn’t able to do that. Fortunately, the phone was recently backed up and I don’t think anything was lost.
  • He kept trying to sell me Sprint’s insurance plan and I kept asking about AppleCare+ because I like going to the Apple stores for support. I wound up not taking the Sprint insurance and he didn’t sell me the AppleCare+ so now I have to either call Apple or go by a store within the net 60 days.

Honestly, I did more selling/explaining about the programs and phone than he did.

It will take time getting used to the larger format and I need to buy new chargers and other accessories since I moved from a 4S to a 6. The Sprint store I was in was pretty sold out of most of those items, as I imagine many stores are at this time. I was just amazed that I could walk in off the street and buy one.

I think this will work. I carry my phone in my purse which is fine. My husband, however, carries his phone in a holster on his belt and I’m not sure he’ll like the larger size.

We’ll see. Thanks for checking in.

Being (In)visible

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People who meet me for the first time are usually quite surprised to find out at some later point that I’m a cyborg – a term that I think my replacement hip, shoulder, and knee as well as the rods and screws in my spine well qualifies me. I’ve often wondered if these prosthetics, which are implanted deep under skin and tissue, were visible if it would help people understand when I am sometimes compelled to comment that I have rheumatoid arthritis and that I’m not having a good day.

Read the full post at RheumatoidArthritis.net: http://rheumatoidarthritis.net/living/invisible/

Good news, bad news, quick update

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I thought I’d provide a quick update.

I had the second of the three “loading” doses of Remicade this week. The good news is that next to swallowing Xeljanz tablets, I must say it was one of the most non-events of my RA history and certainly one of the most boring. There were a few tense moments as the infusion nurse searched for a vein. I was expecting another hour-long search and stick mission like we had last time, but she hit the first vein she tried. (I can count on the fingers of one hand the number of times that’s ever happened to me.) After that it was sit back for two hours and ignore the daytime television program that was on. I did get a low-grade headache about 45 minutes into the infusion. The nurse gave me some Tylenol and added an additional 100 cc of saline solution to help keep me hydrated, both of which helped.

The bad news is that I’m not seeing any positive results of the Remicade yet. That’s not really bad news because it’s only been two weeks since I started treatment, so it’s a bit early to tell if it will work or not. It’s weird because during the infusion I feel these little “pinpricks” in my various joints. First a knuckle will tingle, then an elbow, then a wrist, then a tingle in my spine. It only lasts a few minutes but it’s happened both times I’ve had the infusion. I keep hoping that it means the Remicade is attacking RA in those locations.

I did see the first insurance EOB for the Remicade infusions and list price is $12,000 each. That’s amazing. I thought $2,000 to $3,000 per month for biologics was outrageous. Makes me wonder if I could make a deal with the insurance to NOT take the infusions. They could pay me a discount — say $8,000 per month. I guess if it works, it will be worth it, so fingers crossed that the elixir starts working its magic soon.

I hope whatever is going on in your life is all good news. Thanks for checking in.

First Remicade Infusion

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After all the delays and confusion getting the insurance hurdles cleared and the first Remicade infusion appointment actually scheduled, I don’t have a lot to report except that my two-hour infusion actually took three hours because it took them more than an hour and seven different tries to find a vein. That’s pretty par for the course for me, but honest to God, I don’t know if I can go through that every six weeks.

Right now my next appointment is in two weeks for my second loading dose and four weeks after that for my final loading dose before I move to the every six-weeks schedule.

The actual infusion was pretty anti-climactic. Once we hit the vein, we got the medication bag hooked up and everything went smoothly. The next worst thing to the issues getting the IV started was being forced to abide the weekday morning games shows the other people in the infusion room wanted to watch on the television. It was pretty loud so I couldn’t just mentally block them out. It definitely made relaxing very difficult for me.

But the infusion was fine. I didn’t have any reactions. I have a mild headache but that may be from “The Price Is Right” rather than the Remicade. The infusion nurse was nice and really did try not to hurt me finding a vein, but I could tell she was getting concerned.

Fingers crossed that this treatment works. Thanks for checking in.

By the numbers (this is nuts!)

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Wellchol

Wellchol

Like most RA patients I get my labs checked on a regular basis. Among other tests, the bloodwork every two months checks for liver functions. Last time, my liver tests were slightly elevated. The normal result was supposed to be 35 and it was 39. But still, you need to be cautious, so my rheumy’s office sent the result to my PCP and I met with them. The first question was whether or not I was on a statin, which I had been for about a year. One small white pill once a day brought my errant cholesterol levels down to normal limits. However, statins work in the liver and they can add to the overload. So my PCP switched me to what’s known as a bile acid sequestrant that acts in the intestine instead of the liver. These pills are huge and I take three of them twice a day. So I went from seven small tablets a week to 42 large pills a week.

My next most-numerous medication is a drug to help relieve Sjögren’s syndrome symptoms. I take three of those a day, or 21 per week, so now I’m up to 63 pills a week.

For RA, I take leflunomide, folic acid, and a daily pain pill as well as (temporarily) 10 mg of prenisone. So that’s four more pills a day or 28 more pills per week, or 91 total when added to the others. I am switching to Remicade infusions this week, so I did lose the two Xeljanz tablets a day, or the total would even be higher.

In addition to the cholesterol medicine above, to further control my lipids, I take a prescription Omega-3 capsule and a baby aspirin. I also take two blood pressure medications, plus a diuretic. That’s five more pills per day, or 35 more pills per week, or 126 total.

I am on a hormone treatment regimen, which requires two pills a day, or 14 per week, for a total of 140.

Of course, all this is upsetting to my stomach, so I am on Protonix twice a day, so that’s 14 more pills or a total of 154 a week.

That’s just the prescriptions drugs. I also take a multivitamin and, while I’ve cut down on the supplements I take, I do take supplements to help prevent fever blisters, control my blood sugar, and replace the calcium and magnesium I lose via taking Protonix. That’s a total of nine supplements per day, or 63 per week, or a grand total of 217 pills each week, or 11,284 pills a year.

All of this is not counting the two to four Tylenol I take daily and the occasional Claritin to fight seasonal allergies.

This is one of the reasons I blogged earlier about becoming a “professional patient” to be able to focus more on my health. It’s not just my RA, it’s the overall situation. I’ve been eating more healthfully which will hopefully improve the lipid levels, but until I get my RA under control (again), my ability to exercise is greatly limited. And when I’m working 12 to 14 hour days on a project, it’s even more limited.

I have to do something. I will probably go back to my statin and eliminate the new pill, thereby reducing the pill count per week by 42 and work with my doctors to investigate other ways to help my liver stand the strain. That’s not the total answer, but it’s certainly a start.

I hope the things you’re counting today are blessings in your lives. Thanks for checking in.

More Whining

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I don’t know whether I’m mad, having a pity party, depressed, or all three. Probably all three.

It’s been a rough few weeks. I’ve been in a lot of pain since the Xeljanz stopped working for me and a couple of weeks ago (as noted in an earlier post) my rheumatologist and I made the decision to switch to Remicade, which is an infused biologic. After being on Xeljanz which was simply one small white tablet twice a day, considering an IV medication was not very appealing. But, I’m running out of options and when my hands are so sore it hurts when my husband holds them, I have to do something. There are some days when it even hurts to type.

I was told two weeks ago at my rheumatologist’s appointment that the paperwork would go into the infusion provider that day and they would handle getting the insurance approvals and scheduling. When I hadn’t heard anything for a week, I called my rheumatologist’s office back to check in. It seems the nurse (who is new to the practice) hadn’t put the orders into the computer to be sent to the infusion company. I was promised they’d go out that day.

Another week goes by. Still in pain. Still have swollen joints. Still haven’t heard from the infusion company. So I called my rheumatologist’s office again. They gave me the number of the infusion company, which I called and got voice mail. I waited 24 hours then called again. I finally got a call back from my “account manager” later that afternoon. She told me she hadn’t heard of me until I had called and left a message. She had called my rheumatologist office and found that my paperwork was still sitting on the nurse’s desk and hadn’t been transmitted to her. However, she now had my paperwork and was starting to work on it immediately.

Fortunately she called me back later that afternoon and told me all the insurance hurdles had been cleared and that I could schedule my first infusion at the next “infusion day” at the doctor’s office — which is yet another week away. So three weeks after the original prescription, I’m finally getting scheduled for something that should have taken a couple of hours to resolve.

I believe in being a proactive participant in my healthcare process, but I somehow think the line should be drawn on doing the nurse’s job for her. Next thing you know, I’ll be taking my own blood pressure (which is pretty high right now).

All this aggravation aside, I’m still not reconciled to this whole infusion thing. It’s been six years since my diagnosis and (three joint replacements, multiple knee arthroscopies, two rotator cuff surgeries and a spinal fusion surgery aside), I’ve pretty much ignored the fact that I have RA and gone about living my life. The minor aggravation of taking a pill every day or an injection a few times a month (at my convenience) didn’t really intrude on my daily activities.

But now I’m faced with a whole new perception of reality. This will probably change once I go through the first infusion, but right now I think about infusion patients and I think about patients who are really ill. They take really strong medicines that must be administered intravenously and be carefully monitored during the process. It takes hours and it must be done on a schedule convenient for the infusion provider. I no longer feel in control of the process.

And I will tell you that the thought of having an infusion every six weeks for the rest of my life is almost overwhelming. My friends have told me that they’re amazed that I’ve taken RA in stride. But this hurdle is going to take some time to get over.

Part of me just wants to give up other parts of my life and just focus on everything it takes to have RA — do the infusions, take the pain pills (which I don’t), acknowledge that daily exercise is a requirement not an elective — basically be a professional patient full time and make time for the rest of my life as I can.

The other part of me says this is stupid. I’m doing the Remicade to improve the quality of my life and that the method of delivery (infusion), while inconvenient, is nothing more than that — inconvenient. It’s not a prison sentence.

Sigh.

There’s really no point to this blog except, true to the title, more whining. Next week after the first infusion and (possibly) when I start feeling better, life will no doubt look brighter and I’ll be doing my happy dance once again.

I hope you have more brightness and less whining in your day. Thanks for checking in.

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