Most medications or treatments available to you will have some kind of side effect. In my experience, some are worse than others. Here is a list of all the things I have either tried, have had done, or am currently doing, and how they have affected me. Disclaimer: this is how these affected me – everyone is different. Your physician will guide you.
PILLS: Ampyra: I took this for 90 days and stopped because it didn’t help me. There were no side effects.
Low-Dose Naltrexone (LDN): This is a compounded medicine that my current neurologist suggested years ago, and is the only pill I continue taking. Ironically, I stopped taking the drug four years ago because I didn’t notice any changes or improvements, and wanted to reduce my medical expenses. Two weeks later, I wasn’t getting around as easily and my foot seemed to drag more, so I resumed taking the pill and have never stopped. This is not a standard MS treatment. In fact, many in the medical community question its efficacy, but it has certainly helped me. Anecdotally, the FDA has approved Naltrexone for the chronic treatment of opioid dependence and drug detoxification. Hmmmm.
SELF-ADMINISTERED INJECTABLES: Early on, I took Betaseron for a few months, ditched that, then tried Copaxone. These meds have more of a proven track record for RRMS sufferers, but I tried them anyway. What did I have to lose?
I used the auto-injector, a gizmo where you load a pre-filled cartridge into the injector, position the tip flush onto the site, and pull the trigger, which releases the needle and dispenses the drug subcutaneously. I eventually stopped because they did nothing for me, other than cause bruising at the injection site and, in some cases, angry, sore welts. These occurred when I had the injector positioned at a slight angle into the body, I was holding onto the injector too loosely, or didn’t have it placed firmly on the injection site. The truth is I was never comfortable giving myself shots, particularly in the arms and the hips, which is where I screwed up most of the time. The stomach and butt were easier, primarily because there was more fat there and it didn’t sting as much, but if I did make a mistake on either, I’d be reminded for a few days every time I sat down.
Also called a lumbar puncture, this is a procedure where a needle is inserted into your spine and fluid is removed. A high volume of certain proteins in the spinal fluid means you have the condition. It isn’t fool-proof however, as 5 to 10% of people with the condition don’t test positive for the protein.
The main and most problematic side effect with a spinal tap, occurs when fluid leaks out and changes the pressure in the brain or around the spinal cord, causing a horrific headache. I was flat on my back for two hours before I was discharged, and was encouraged to lay down for most of the day upon my return home, in addition to drinking a lot of water. While I was resting in the hospital following the procedure, a nurse told me the headaches didn’t occur frequently, and fortunately I was not the exception.
If you are thinking about having this done, my only recommendation is to have the procedure done at a hospital. Not a doctor’s office. My appointment for the procedure began at my first neurologist’s office, where I had to tuck myself into a tight fetal position while he attempted to draw fluid. It was not the most pleasant experience in the world, and was compounded by the fact that he did not succeed in drawing any fluid after four attempts. Each new attempt was more uncomfortable than the previous one. I was not a happy camper, and I think he knew better than to suggest a fifth try. Instead, I went to the interventional radiology department at the hospital across the street from his office. They had me lay on my stomach, positioned the needle with the help of a computer, and got what they needed in about thirty seconds. I didn’t feel a thing.
I’ve received monthly infusions of solumedrol, a steroid, along with other IV agents I’ll mention shortly, for about eight years. As I mentioned in my previous post, the impact after the first three-day home treatment was remarkable. As I also mentioned, I had to deal with an uncommon and miserable side effect that caught me completely by surprise: hiccups.
You might wonder, what’s the big deal? Well, these little bastards started on day four, became chronic, and lasted for three long days. I’d get a brief respite, then they’d resume and last for hours. I didn’t know what to do and, like a dumb ass, didn’t bother to call my doctor. I just suffered. At first it appeared that eating helped them subside, so I gorged myself. That turned out to be a dead end. All it did was make me feel like a fully inflated basketball had settled into my stomach, which made the hiccups feel worse. I’m not taking about one hiccup at a time either. As the days progressed they would come rapid fire in threes, fours and sometimes fives. I talked little, and felt like a freak at work. Sleeping was next to impossible, and I felt utterly helpless.
Even now, when I get infused with one gram of the stuff each month, I have to deal with hiccups the following day. They start off slowly then pick up steam as the day progresses. It’s just something I have learned to live with. Fortunately, they aren’t as chronic, and are gone by the time I go to bed.
One other side effect is ravenous hunger, which lasts up to the time the hiccups start, so I guess they are good for something because the last thing I feel like doing when I have hiccups is eat.
I can’t speak for the long term effects of repeated steroid use. What I can tell you is that a dear friend, who suffers from Crohn’s disease, has been taking prednisone for over fifty years. He currently has a host of joint issues, and the wall of his heart has thickened. He has no regrets, however, because it was either deal with the pain or have a decent quality of life. I feel the same way, but wonder if the steroids will come back to bite me somewhere down the road.
In addition to the infused steroids, I have also been receiving a chemo agent called Cytoxan. When I first started taking it, I was in bed for two days. My body apparently got accustomed to the drug, so now I’m in Zombie Land for only one day.
When I get home on the day of the infusion, I’ll feel a little fatigued. The next day I’ll wake up feeling pretty good, but as the day wears on, the fatigue settles in for an extended stay, and my face looks and feels like I’ve been in the sun all day. I’m the stubborn sort, so I plow through the day and try to be as useful as possible before giving in on day three.
It’s hard to describe what day three feels like. The analogy I’ve come up with, is that it feels like a fog slowly rolls in, then descends in full force, enveloping me in a shroud of dazed lethargy. I call it Zombie Land because that’s what I feel like. I don’t drink or eat much, and have no desire to do anything. My body feels like a wet dishrag, my mind feels like I am beyond stoned (and not in a good way), and this lasts all day. I sleep a lot, and when I am in the deepest regions of Zombie Land, the dreams are bizarre. A repeated one involves me being in my bedroom, and I am awake. I’m woozy and can’t tell if I am dreaming or not. Then, I begin to levitate above the bed and hover there. I eventually realize I am dreaming, but it still feels very real. In fact, all the dreams I have when I am in this state feel very real, which is great if it’s a good dream, but sucks if it isn’t. On day four, the haze has lifted, and I feel burned out, like I’m coming off a bender, but without the headache. By the time I get home from work, the burnt out feeling is gone, and I’m simply tired. Everything is normal the next day.
I can’t imaging what cancer patients have to go through. I only get 600 milligrams of the stuff and feel like crap. Thank God they give me some anti-nausea meds during the infusion because I wouldn’t want to have to deal with that too.
I just started a new drug last Friday called Orcevus. On par, it was a slightly better experience compared to the Cytoxan. I receive a smaller dose of steroids, which meant no hiccups at all, and that was wonderful. The fatigue on the day of the infusion was a little worse but infinitely better the following day, although the sunburned feeling remained. On the third day, Zombie Land arrived early and hard, and stayed that way most of the day. I slept more than usual and still felt semi-comatose by the time I finally went to bed for the evening. The burned-out feeling the day after the zombies left town was minimal.
If you’re keeping score, day one was a wash, days two and four were better, and day three was worse. I can live with that, and the best part is I will only have to do this every six months instead of every month, once my initial course is over (I get a second dose next Friday). Having said that, the Orcevus I received was half the dose I normally get with the Cytoxan, because the protocol is to split the first dose two weeks apart. It makes me wonder how bad Zombie Land will be when I get the full 600mg dose in March, or how long I will reside there.
I described the plasma transfer in my previous post, so I won’t describe it here. As far as side effects are concerned, there aren’t any, at least not for me. But what I don’t like about this procedure, or any of these procedures for that matter, are the needles and tape.
First of all, when receiving an infusion of steroids and/or chemo, there is only one needle used, and it’s a fairly small one. Sometimes, you hardly feel it going in. With this procedure, two needles are involved, and the second one is bigger because it has to handle the volume of blood coming out of the body without popping out. I exaggerate by calling it a sewing needle, but sometimes it feels that way going in. They also don’t stick this needle deep into the vein like they do for the infusion needles, thank God. It typically goes into the big vein in the crook of the elbow, and it has to remain in position in order for the blood flowing out the body and into the centrifuge to remain at a constant volume. This means that if for some reason it moves, or the flow somehow gets disturbed, the nurse has to remove the tape and fiddle with the needle, i.e., move it around while it is in your vein to get the flow going again. That makes me break into a cold sweat.
The other issue I have with needles is that sometimes the vein looks good but flattens out when the needle is inserted, which means they haven’t hit their intended target. When this happens the needle will get moved around to see if they can get any blood. If that fails or hurts too much, the needle is removed, a new one is retrieved, and you get stuck someplace else. My record for needle sticks for a single procedure is six. That happened only once, during the time when I had three plasma transfers done in a two week span. By that time there weren’t a lot of places to choose from, and my arms were starting to look like raw hamburger. Good thing it only took six, because there wasn’t going to be a seventh. There weren’t any other places to try. The IV nurses usually get it right the first time, but everyone has a bad day.
The tape, and specifically its removal, hurts more than anything else. A lot of tape with strong adhesive is used to secure the needle in place and to prevent it from moving. As you can see, I have a lot of arm hair. So when the tape comes off, it hurts like hell. I’d prefer that the nurse just rip the damn thing off and get it over with quickly. Unfortunately, the tape is removed slowly and carefully so that needle doesn’t get yanked out haphazardly. It feels like each hair is being plucked out individually before they get to the point where the needle and rest of the tape can be quickly removed. Not fun.
I’m tempted to get my arms shaved or waxed, but that would not be a good look. This is the primary reason that my favorite place to have a needle inserted is the top of my hand. That sounds awful, I know, but there is no hair there, and I can move the hand freely without feeling the needle in it, unlike other places. Plus, having the needle placed there doesn’t hurt any more than any of the other spots. You just assume it will because the skin is tighter, and there isn’t much meat there.
Words of advice
The key to having plump, juicy veins that your nurse can pierce with one stick, is to hydrate, and coffee doesn’t do it. Drink as much water as you can before your procedure, and this will go a long way towards ensuring you won’t feel like a pin cushion. The only caveat is that if you are having the plasma transfer done, you’ll have to walk a fine line with water intake because once the machine is turned on, you can’t get up.
The arm with the big needle shouldn’t move at all, otherwise the outgoing volume can change, which means the needle gets moved around. So the goal is to drink enough to get your veins plump, but not so much that you can’t hold your bladder for the hour and a half procedure. Otherwise, you will have to ask for a hand if you need to pee. Literally. Besides being embarrassing and a little messy, it could also result in the big needle getting dislodged or moved.
I wish I could should share this experience with you, because I am definitely curious. I’m itching to get into one of the dispensaries in Connecticut, where it is approved for MS, see what they have to offer, and learn if you catch a righteous buzz from the stuff. Alas, I can’t because I haven’t had the experience. Not that I’m bumming, because one of the things it manages best is one symptom that is very common for people with MS, but one that I have fortunately managed to escape so far: pain.
If you wish to share your experience with anything I have mentioned or, preferably, anything I haven’t, please leave a comment.