I wrote in my last entry about all the bruised, sore lumps the Copaxone injections are leaving. I wish I could say it's improved, but that would be lie. In fact, I swear it's getting worse. It's bad enough that last night my son went to lay on my lap, and in the process bumped the hip I'd injected two nights before, and I winced because it's still so tender to even touch. As I type this, I'm trying not to itch the golf ball sized lump still on my arm from last night's injection and, dreading tonight's injection on my thigh because it's already got two bruised lumps on it and I'm really not keen on adding a third.
I've also been having almost constant joint pain the last couple weeks, in fact when I think about it, it started around the time the bruised lumps started. I was a little nervous something else was going on with me aside from the MS, but then I talked to my neurologist as well as did some more research on Copaxone. I think you already see where I'm going with this, right? Yup... apparently joint pain is another possible side effect of Copaxone. In fact, here is the FULL list of possible Copaxone side effects:
- Pain -- in up to 73 percent of people
- Redness -- up to 66 percent
- Infection -- up to 50 percent
- Inflammation -- up to 49 percent
- Itching -- up to 40 percent
- A lump -- up to 27 percent
- A hard or firm area -- up to 13 percent
- A welt -- up to 11 percent
- Bleeding -- up to 5 percent.
* General pain, neck pain, or back pain
* Flushing or hot flashes
* Joint pain
* Nausea, vomiting, diarrhea, or loss of appetite
* Muscle tightness
* Flu-like symptoms (such as fever or chills)
* Runny or stuffy nose
* Swollen lymph nodes
* An urgent need to urinate
* Vaginal yeast infection
* Swelling or water weight gain
* Shakiness (tremor)
* Ear pain
* A spinning sensation (vertigo)
* Painful menstrual cramps
* Migraine headaches
I've put the side-effects that I personally have in bold print. The ones that are also side-effects of Multiple Sclerosis itself I've put in blue. So here's my question: How am I supposed to know if it's the MS acting up, or the Copaxone side effects? This problem isn't strictly a DMD issue, either. (DMD = Disease Modifying Drug). The truth is, this is an issue with MANY of the common drugs used to treat the symptoms caused by MS too. Here is an example:
Two that I am also on, Baclofen and Neurontin, both say they can cause dizziness and fatigue. Granted I am lucky, I haven't noticed either symptom getting any worse since starting them than they were before taking them. But last week, my doctor put me on a drug called Topamax. I have to tell you, just reading the possible side effects was enough to give me serious hesitation before taking it. You see, I've been having constant headaches and eating Excedrine like candy as a result. My neurologist said that was not good at all- and prescribed the Topamax. But my issue was the possible side effects- which include numbness, tingling, slowed thinking, troubling concentrating, memory problems, fatigue, muscle pain and weakness. YIKES!!!! These are all issues I already have thanks to the MS, so needless to say I was really hesitant to take something that could make them even worse.
Well after much debate with Wayne on this, we decided I'd give it a try, and if I had weird side effects I'd stop immediately. Took the first dose, all seemed fine. Took the second dose... BAM! Holy crap, that was awful. I swear it was like insta-relapse in a pill. Of course I didn't actually relapse but the side effects were so severe I felt like I had. I couldn't feel the left side of my body, I couldn't think at all, could barely speak because my brain was so fogged over, was so dizzy that walking was totally out of the question, and the parts of my body I could actually feel were tingling and aching horribly. So at that point, I took a 6 hour nap in the middle of the day to try to sleep it off. Woke up, still didn't feel quite right, and went back to bed sleeping for another 10 hours until the next morning. Needless to say, I didn't take another dose of Topamax, nor would I.
Ok but now consider this logic: What if not only are we taking drugs that have side-effects rivaling those of the disease itself, what if we're then being prescribed more drugs to essentially treat the other drugs' side effects? I mean when you stop and think about it, if you are taking drugs with side effects that just so happen to be the same as the disease you have, what are you REALLY treating? Let me give you an example of I thought of:
Jane Doe has MS. She is prescribed Copaxone, which she injects once daily. Soon thereafter, she begins have issue with muscle tightness and pain, as well as migraines. Her doctor assumes these symptoms are being caused by the MS, and prescribes Baclofen for the muscle pain and Topamax for the migraine. Upon taking these drugs, she also develops painful tingling sensations which her doctor assumes is nerve pain from the MS and prescribes Neurontin. At this point, her fatigure becomes unbearable, and they then start to discuss the possibilities of a drug for that as well if it continues.
But what if that original muscle tightness and migraines weren't from the MS, they were from the Copaxone? At that point, Jane Doe is now being prescribed meds to treat Copaxone side effects. And what if the painful tingling isn't actually from MS, it's from from the Topamax? She's now being prescribed Neurontin to treat the side effect of a drug she's taking to treat the side effect of another drug! (wow if you followed that, gold star for you! LOL!) And of course if the fatigue isn't from her MS but rather the combination of drugs... you guessed... more drugs to treat drug side effects.
Are you seeing where I'm going with this? I understand that DMD's in particular are so crucial for RRMS patients, but I still have to ask myself about the quality of life we're leading if the side effects of our medications rival those of the Multiple Sclerosis itself. I don't have the answer to this, I only know if the day ever comes that I feel the DMD's are hurting me more than helping, I will have some very tough decisions to make.
Be well all! -Mis