Along the pathway to diagnosis, I have been riding on a medications carousel.
When I was first diagnosed, everyone said “It’s not like it used to be – there’s so many more medications available now than ever before…it’s much easier to treat than it used to be.” That gave me hope and helped keep my attitude positive.
Almost 3 years, 7 sets of drugs (including two allergic reactions, one that I couldn’t tolerate and NONE of which worked for me) later, that hope that was given to me with the prospect of better medications is pretty much gone.
In fact, whenever I see all those commercials on TV with people happily going about their lives while on the new autoimmune drugs it just makes me cranky…been there, done that, didn’t work!
And if the medication carousel wasn’t bad enough in its own right, now that my diagnosis has changed, many of these were experiences that I wouldn’t have had to go through had I been diagnosed currently years ago.
For those that aren’t familiar with the types of medications used for autoimmune diseases, there are three main types – steroids, NSAIDs (non-steroid anti-inflammatory drugs) and DMARDs (disease modifying antirheumatic drugs).
Steroids and NSAIDs attempt to reduce inflammation throughout the body but do nothing to treat the underlying processes of the diseases. DMARDs attempt to modify the disease process itself – and in the processes of doing this, the symptoms will hopefully be relieved as well.
They’re often used in conjunction – NSAIDs to calm the current symptoms to bring relief while the DMARDs work. I was on several NSAIDs over the course of the years, but this description will focus no the DMARDs.
My first rheumatologist (“Dr. A”) diagnosed me with Rheumatoid Arthritis. I began my first medication in April 2011. Her philosophy on medication was to start with those that have been used the longest.
All of these medications come with side-effects, many of which are significant, and she felt it was better to start with those that had been used the longest as they know the most about what those side-effects are and I could be monitored for them. All of these drugs were accompanied by blood work every month or two (depending on how long I’d been on the particular drug) to monitor for those side-effects (kidney and liver function, etc.)
My first medication was sulfasalazine. It’s a medication that you have to work your way up to therapeutic dosage. For the first week I took one pill each evening. During the second week I took one in the morning and one in the evening. As these two weeks progressed, I felt that I was getting worse. My fatigue and joint pain were worsening and by the end of the second week, the back of my skull (those two knots that I have no idea what they are called) were extremely tender. It reminded me of when lymph nodes are swollen when someone gets sick, but it was in the back of my skull. I had read about it over the weekend and saw that these are sometimes symptoms of allergic reactions to the medication.
I called Dr. A and left a message with her nurse describing what was going on with me. This was the morning that I was to take 2 pills in the morning and 1 in the evening (eventually the goal was 2 morning and 2 evening). Later that morning, the nurse called me back to explain that the medication was not what was making me worse and that RA doesn’t effect the neck (implying that clearly these symptoms I called and left a message about were not related to my RA and the medication that I was on). She left a message for me because I wasn’t able to get to my phone in time.
By this time I was itching all over – crazy itching. I called her back and let her know about this itching all over and after consulting with the doctor she let me know that I was allergic to the medication and I was to discontinue taking it and she would put a note of the allergy in my file.
The second medication I was put on was hydroxychloroquine (brand name Plaquenil). It’s an anti-malarial drug that is routinely used for autoimmune diseases. I was told it would take 4-6 months to even tell if it was going to work. I’ll talk about the mental and emotional toll this aspect of autoimmune drugs takes another time.
This time I didn’t have any bad effects, but it just didn’t work. I was on it for 4 months and saw nothing from it.
Next came a cancer drug, methotrexate. It’s a drug that has much more serious side-effects than the first two I’d been on. Including that you CANNOT drink alcohol while on it. I’m not a big alcohol drinker – maybe a drink or two a month, some months without any. But the reason this made me sad was not only that it’s taking away freedoms in my life, but because I was switching to this drug right before I was getting married.
I chose to wait until after the wedding to switch so that I could enjoy a drink or two at the party with my new husband. But our honeymoon wasn’t going to happen until a month later and I’d already been on this carousel for 6 months and I wanted to get going on this new one. So that meant that I spent the 5 days on a semi-private island off the coast of Belize not being able to enjoy a single drink from the free island tiki bar! Free, frozen, fruity drinks available any time I wanted (and those are my favorite kind!) and I couldn’t have any at all. It was definitely a bummer.
This was also a drug that I needed to work up to full dose with, and by the time I was at full dose I realized I was not able to tolerate the drug. I felt like a zombie. I had fatigue from the disease, but this added a whole other level – I couldn’t get up, couldn’t keep my eyes open, couldn’t think about anything. I couldn’t function in life at all.
Dr. A thought it was time to try the biologics. The biologics are the newest class of drugs for autoimmune diseases and are either injections or infusions. The first (and only, at least so far) biologic class I was on were the TNF-inhibitors.
It took 2 months from the time the doctor prescribed it to me and many, many, many phone calls to actually get my first dose of the drug. It’s expensive, very expensive, and insurance companies don’t like to pay for it.
My prescriptions are filled through the pharmacy named “Caremark” and my prescription insurance is through the insurance company named “Caremark.” One would think that those two entitles would be able to communicate with one another. However, it took at least a dozen phone calls (all of which involved long wait times) to get the pharmacy side to get the correct authorization from the insurance side to fill the prescription.
Yes, both under the same parent company – the insurance side wasn’t communicating with the pharmacy side to provide the needed authorization.
I would call one side and they’d tell me it was a problem with the other. I’d call the second side and they’d tell me it was a problem with paperwork from the doctor’s office. Then I’d call the doctor’s office and they’d tell me it wasn’t their side. This went round and round until I was frustrated beyond belief.
I don’t even know what I would have done if I hadn’t had a job that enabled me to make these phone calls and sit on hold for long periods of time. My previous job as a high school teacher would not have afforded me that ability and I’m sure would have dragged the process on even longer.
I finally received it, was trained in how to self-inject the medication and began my every-other-week injections.
First of all, those injections HURT!!!!! The medication is very viscous and must be kept refrigerated (increasing the viscosity). I would sit at my counter in the bar stool and pep-talk myself into doing it. I’d hold the injection pen (similar to an Epi-pen) on my leg with my finger on the button and tell myself “do it” at least 10 times before I’d actually press the button.
Three months later, drug wasn’t doing anything for me.
She said to increase the dosage to every week instead of every two weeks.
A month later, still no effect.
The next TNF-inhibiting biological self-ejector (weekly injection) I was placed on was Embrel. This was Spring 2012 – a year after beginning this journey.
I’m not sure if it was the medication or the fact that it was summer or a small release in the intensity that happens in the ebb and flow that occurs with these diseases, but for a while I better. NOT NORMAL. NOT GOOD. But “I can see a light at the end of the tunnel” better.
This lasted about 4 months and then I began going back downhill again. Joint pain and fatigue were becoming more severe – worse than when the journey began in Spring of 2011.
In December of 2011 I let Dr. A know that I had definitely gone back down and in fact worse than when I’d started and wanted to know what was next.
This time it was on Cimzia, an every-other-week TNF-inhibitor injection that was a traditional syringe (the other two had been the self-injector “pens”). At first I thought I’d hate that, but I actually liked it. I could control how fast it was going in as opposed to the pens that just shoved it all in at once and you had no way to slow it down or pause. That did help with the pain of injection.
The first injection seemed OK. I had injection-site reaction (a red, itchy welt at the site of the injection – sometimes lasting a couple of weeks after each one) but I’d that with the other two indictable medications as well and it’s common with these drugs.
Two weeks later I did my second injection and I remember feeling nauseous right after – but just a little, not terribly bad. I remember thinking “there’s no way that’s due to the meds, I just (30 seconds early) injected it into my leg – it couldn’t cause nausea THAT quickly!
I went to the doctor the week after that second shot. She asked how it was going, I said fine, she said it’s too early to tell if it’s working yet but your blood work doesn’t show anything harmful going on.
A week later I was ready to give injection #3. I put the kids to bed (my husband was playing in his weekly pool league so he wasn’t home) and went into the bathroom to do the injection. I sat and prepared the injection site and syringe. I injected it like always.
Within 20 seconds I had extreme nauseousness, ridiculous vertigo and I couldn’t hear anything. I stumbled my way from the bathroom to the bed (I think I fell once) and climbed into bed. I was completely panicked. I’ve never felt this way in my life. And it happened literally within SECONDS of injecting the meds. As I lay in my bed I realized my cell phone was still in the bathroom.
I was petrified that I would have to call out to my then-9-year-old in the next room for him to call 911 for me. I was almost ready to do just that when I realized that it was beginning to fade, ever so slightly. I decided to wait it out and see if it was going to get a little better. After about 30 minutes I could get up and go back to the bathroom to get my phone and finish my bedtime routine.
The vertigo and nauseousness remained withe me for over a week after that. In fact, the next night I had to leave dance class because I was so dizzy after turns across the floor that I thought I was going to be sick.
A new rule was instituted in our house – no meds when another adult isn’t around!
That was January 2013. Right after this was when I switched to Dr. B (which I talked about here).
7. Prednisone and Hydroxychloroquine
Dr. B changed my diagnosis and put me back on hydroxychloroquine (I’d been on it 4 months in 2011 and he said that wasn’t long enough to be able to tell so he put me back on it for a minimum of 6 months). That was April 2013 and I’m still on it in November 2013, although it’s doing nothing for me.
One thought on “The Medications Carousel”
Although I know people for whom the biologics work, the criterion for a “successful” disease modifying rheumatic drug is very low-a 20% reduction in symptoms. Most people don’t have even that response. That’s why the drugs have to be so heavily marketed. I hate those ads! I am also on my second round of the medication carousel- on hydroxychloroquine again. My second round of methotrexate was worse than the first. Both times the near joints of my hands swelled up. The first time on mtx I developed nodules. The second time on mtx my white blood count went so low that both my endocrinologist and internist called me the same day of the blood test telling me to contact my rheumatologist, who had me stop the drug. Three months of Humira injections did nothing for me. I think Rituxan infusions helped, but I developed an allergic reaction, and they stopped the second round of infusions. I’m “stable” now, according to my rheumatologist. I am relieved, but I am sorry that this may be as good as I get. I am gambling that my joints won’t erode, since arthritis in primary SjS is usually not erosive. But I have also had 4 strong positive anti-ccp tests, which are usually indicative of more erosive rheumatoid disease.