Fast forward more than a decade from the “good times” with the old fridge. . .
I’m a pretty private person — I’m not even on Facebook, I don’t have a Twitter account, etc. and, maybe even worse, I’m looking for work now — so why should I blog about my medical problems? The truth is, I’m freaked out about starting a new . I’ll fill in the background story bit by bit, but, basically, I am being coerced — I don’t think that’s too strong a word — to get off this steroid in order to ensure that the Exceptional Access Program (EAP) continues to pay for my Remicade.
Remicade, also known by its generic name, infliximab, is the main drug that’s keeping my Crohn’s under control. It is quite an expensive medication: the dose I’m on costs $4,200 every 7 weeks, which works out to $33,600 per year. (I am on other medications as well, but this one is the most costly by a long shot). If I don’t get off prednisone soon, there is a chance that the EAP will stop paying for my Remicade, as I will explain below. $33,600 is a lot of money, and I don’t want to cause my family financial hardship; I want to support myself. Without the Remicade, though, I will be too sick to work, so I will have to continue to use it whether or not I’m covered. There is also no guarantee that whatever job I find in this economy will both cover my medication and leave me enough to live on. In the worst-case scenario, if my coverage does not continue, I will have to either take on a lot of debt, or go on disability, or maybe both. Just thinking about the possibility makes me angry. So here I am, blogging, partially as therapy, and partially to bring this situation to light so that the EAP will be shamed into stopping this nonsense.
Remicade and steroid-sparing
Before I was put on Remicade, in 2004, I was very ill. All the other treatment options I had tried — and I had tried all of them — were not holding the disease in check. I was in pain, very fatigued, and was becoming malnourished due to chronic diarrhea. Prednisone had controlled my disease well when I was first diagnosed, but by early 2004, the Crohn’s was acting up with a vengeance. I was already on the relatively high dose of 50 mg per day; more steroids weren’t the answer.
Even before the prednisone ceased to be effective in controlling my disease, I had been trying other medications. While steroids like prednisone work well to suppress the immune system, they have a very broad spectrum of effects, many of which can be harmful, especially in the long term. It is a common strategy for doctors to get their autoimmune patients stabilized on prednisone or another steroid, and then switch them over to another drug or drugs for long-term maintenance. This is known as a steroid-sparing strategy.
Being on a high dose of steroids for several years had given me osteopenia as well as a host of other side effects. It became a priority to get me off prednisone, especially since it wasn’t doing its intended job of stopping the Crohn’s. By early 2004, I had already tried a number of medications on top of the prednisone: a month of azathioprine gave me pancreatitis (OUCH). Two years of methotrexate gave me bleeding gums, a dry mouth and eyes, and no protection from Crohn’s flares. (Plus I had to inject it myself intramuscularly in the leg every week, and that is not fun!) I am allergic to NSAIDs so I was not put on 5-ASA because it’s in the same family and I would be likely to have a reaction to it. Also, while Crohn’s disease is typically described as an autoimmune disease of the gut, it also attacks other tissues (joints, skin, etc.) I had tried all other Crohn’s medications available that were suitable for the variety of Crohn’s I have, that is, Crohn’s that affects all my epithelial tissues (gut, mouth, nose, esophagus and vagina) and joints. Some kinds of medicine used to treat Crohn’s disease, such as antibiotics, are best for mild cases of Crohn’s — and they interfere with birth control, too. My GI and I discussed trying them, but with my array of serious symptoms and the other teratogenic medications I was on, they were not a good option for me.
At that point, my GI wanted to put me on Remicade, and I had refused. Remicade is known for being steroid-sparing, but I had read the list of Remicade’s frightening side effects and decided that, with my luck, I would end up with additional permanent problems on top of Crohn’s. I even asked to try taking thalidomide, despite its awful reputation, because I had read that it might be helpful in treating Crohn’s. But my doctor finally convinced me that it would be better for me to risk trying Remicade, which had a high success rate and low incidence of side effects (though some are permanent) than to continue to experiment with medications that have low success rates and high incidents of side effects (though most are temporary). The alternative — doing nothing — would cause me to starve to death.
So I got put on Remicade in 2004, and the short version is that my Crohn’s has been mostly under control ever since. I was able to reduce the dose of prednisone from 50 mg per day to 1 mg per day. Think of it as going from eating 50 cookies per day to eating one cookie per day. That’s a big difference, no?
My prednisone monkey
At 1 mg per day, the risk of osteoporosis is almost gone (I take lots of calcium and vitamin D to prevent it) and I’m at much lower risk for other long-term problems that steroid use can cause. But since that risk is still real, my medical team has been encouraging me for many years to get off the prednisone altogether.
Unfortunately, it’s much easier said than done. Quitting steroids can’t be done cold turkey. It is a physiological process that needs to be done slowly, over time — and even then, it is not pleasant at all. I’ve been through a lot of steroid tapers over the years. When my friends or colleagues ask me what like, I say it’s similar in intensity to withdrawing from heroin (though the symptoms — other than the muscle pain, nausea and goosebumps/chills — are somewhat different). (Not that I’ve done heroin 😉 ). This certainly gets the idea across, since steroid withdrawal is not something you generally see in movies or on TV.
A few years ago, with encouragement from my GI, I decided to take the plunge and go off prednisone. In my experience, I would experience around a week of side effects for every mg less of prednisone I took during tapers. I decided to do this taper over the Christmas break so it would cause minimal interference with my work schedule.
One milligram doesn’t sound like a lot, but to my body, which had been dependent on daily doses of prednisone for almost a decade, it was a big deal. Within a day or so I developed not only the normal fatigue, clumsiness, chilliness, “bone ache” and difficulty concentrating, but also some new and strange symptoms: a fast heartbeat, profuse sweating, and a pumped up, hyperalert and startled feeling, like playing paintball after having drunk 12 espressos in a row. I’m pretty used to being thrown symptomatic curve balls by Crohn’s and Crohn’s medication, so I didn’t feel afraid. In fact, with my steroid-deprivation-induced inability to concentrate, it took me until after a meal of instant noodles, pizza, pickles and olives (a jar of each!), to realize that something really was off. I called an MD relative, who confirmed that the extreme salt craving was part of an adrenal crisis and, though it felt scary, the dose of steroids that I had come down from was low enough that it would soon pass.
A few days later, the adrenal weirdness did indeed disappear, and I felt very happy to be finally saying goodbye to my old friend prednisone.
Within two weeks of my last dose, though, I had developed severe enough arthritis in my hips that I could barely walk. It was the very beginning of January, and my GI and rheumatologist were on holiday. I couldn’t get an appointment with anybody until late February or early March. Three weeks after I had stopped the prednisone, I could no longer bear the thought of limping on icy sidewalks, sleeping on ice packs and taking Tylenol 4 times a day for the next 2 months; I was working full-time. I went back on my 1 mg of prednisone, and the hip symptoms were completely gone in 3 days.
By the time I saw the rheumatologist, I had had no hip pain at all for weeks, and the x-rays he took didn’t show anything unusual. Luckily, he and my GI believed me when I described what had happened. For the next few years, though, every time I had to deal with a different doctor, I would get skeptical glances, and sometimes lectures, whenever I mentioned the severity of the symptoms I’d had and feared I would get if I were to go off that 1 mg of prednisone.
Why taper now?
At my last GI appointment, my GI told me that the EAP is putting very heavy pressure on her and on her colleagues to get their patients to stop steroids entirely. She said that they looked at my file and said that because I was still on steroids even with the Remicade, they do not consider the Remicade to be steroid-sparing. I am pretty sure that if my GI or I told the bureaucrat who decided that 1 mg is as problematic as 50 mg that his or her salary would be reduced to 1/50th of its previous value because it is basically equivalent, this person would vehemently disagree — but the illogic of the situation is somewhat beside the point. My GI is a wonderful, empathetic person who knows my medical history and who heard me out when I explained how stressed I was at the prospect of having to again lose my ability to walk and ride my bike for at least a month, having another adrenal crisis, etc. just to prove that I need 1 mg of prednisone on top of Remicade, but her hands are tied. She essentially told me that she cannot prescribe prednisone for me any more or Trillium in general and the EAP in particular would make life harder for more of her patients.
Twice in the past 4 years the EAP has refused to cover my Remicade. The reasons they gave each time were different, but equally specious. I describe what happened in this post, but let’s just say that the last time, it took 11 months, 6 letters from my GI, and many letters and phone calls to my MPP to get my $4,200 refunded. Even worse, some of the hoops the EAP had my GI and me jump through in order to get coverage at all overrode the Canadian Association of Gastroenterology‘s guidelines for treating Crohn’s with Remicade and caused me to miss 30 extra days of work in a 6-month period. Compared to that kind of mess, a prednisone taper looks, well, almost appealing.
I mentioned before that I’m looking for work. I have actually been doing some part-time contracts that allow me to work from home. The work requires focus and concentration, but I should be done with it in two days. Then I will be free enough from intellectual responsibilities to start my taper. I have a rheumatology appointment booked for early September so that if things go wrong in the next three weeks, the rheumatologist will see me at the height of my hip problems (at least judging from the timing the last time I tried a prednisone taper). My GI and MD also know what I’m doing and should be able to see me on short notice. In the meantime, job hunting will be on hold due to withdrawal-induced fuzzy brain, and I will likely spend a lot of time spaced out and shivering in a hammock. I suppose it’s not the worst way to spend August.
Wish me luck.