One of the first items most of us have to confront is how we are going to treat our condition, most of which involve drugs of some kind. The most viable options are predicated on the type of MS we have.
I tried virtually everything in the beginning. Even though interferons aren’t designed for primary-progressive (PPMS) folks like myself, I tried them anyway at the suggestion of my first neurologist. Sticking myself with needles several times a week wasn’t the most natural thing in the world, and I developed a better appreciation of what diabetics must endure on a daily basis. I didn’t do this for very long because it didn’t help me.
Next up was a three day course of steroids infused intravenously at home, and afterwards I thought I died and went to heaven. My symptoms, which were minor compared to what they are now, virtually disappeared, and I felt like I escaped from prison. Unfortunately, the relief lasted less than two weeks, and the symptoms slowly re-appeared. I also developed a little-known side effect that sounds trivial but proved to be one of the most trying experiences of my life. I’ll elaborate on a future post about side effects. Also be aware that you will have a port attached to your arm during those three days, so all you have to do is clamp new IV tubing into it rather than have to insert and affix the needle each subsequent day. You can’t get the port wet or it could cause an infection. So no swimming, and you will also need to wrap your arm in plastic wrap when you take a shower to keep it covered and dry.
One last word of advice. If you do the three day home treatment, listen to the nurses’s instructions, particularly the part about putting immediate pressure with a sterile gauze on the site when you remove the needle. My third and final dose was done early on a Monday morning, before I went to work. I was a up exceptionally early that morning so I could finish the treatment, which takes about an hour. Given the hour I wasn’t thinking very clearly, and forgot the part about applying pressure when I removed the needle. What a mess! For the few seconds it took for me to realize what I forgot to do, blood spurted all over the place. It made one hell of a mess, and looked like a scene from a slasher movie. Good thing my wife didn’t see it. She hates the site of blood.
Soon thereafter, I started monthly infusions of steroids and cytoxan, which is a chemo drug. When my current neurologist suggested it, my first thought was, “are you kidding?” But MS is an auto-immune disease, so theoretically the drug helps the progression by compromising your immune system so it stops cannibalizing the body. It must work, because while my progression has not stopped, it has been slow and remains confined to one limb. I also assumed that since I would be taking this shit, I would catch every cold, virus or bug that I came into contact with. However, since that time I have been remarkably healthy. Strange.
Plasma exchange (plasmaphersis – see photo) got added to the equation a few years ago. This is a process where needles that are connected to plastic tubing, are inserted into a vein in each arm. The blood exits your body through one arm and enters a centrifuge, which filters the plasma that contains the antibodies that attack the immune system. The good plasma or a plasma substitute (in my case, Albumin) is returned to its host via the other arm. It’s very similar in concept to kidney dialysis. When I first started my infusions, they were done in the apheresis center, where I first saw patients getting the treatment hooked up. The process looked uncomfortable, medieval, and swore I’d never consent to it. Now it’s old hat. In the beginning I had three of these treatments done over a two week period and the results were similar to my first steroid gig: a significant improvement. However, like steroids, the improvement was short-lived, and now I get them monthly in addition to the other infused meds to maintain the status quo.
I haven’t had these infusions for over three months now due to a kidney stone issue I had to deal with. Previously, the longest I had gone between treatments was six weeks. During this time my walking has become more cumbersome and my balance is worse than it has ever been. I resume treatments tomorrow (with a new drug this time) and I’m expecting the symptoms will revert back the the level they were three months ago. If not, I’m screwed.
The drug and treatment options are numerous, but the bottom line is they involve pills, needles, expensive procedures (thank God for good health insurance) heavy duty drugs, or a combination of them. I’ve only covered what I know, and haven’t scratched the surface in terms of the meds available. Your neurologist should be able to explain what he or she thinks is best for you, and explain the pros and cons in detail. Don’t make the mistake of not asking questions.
Diet, exercise and other holistic means can’t hurt, but we’ll talk about those at a later time.
NEXT POST: Zombie Land
7 thoughts on “Meds and Treatment”
Wow you’ve tried a lot of treatments. I hope your current one is manageable and keeps you relapse free. I was on copaxone for 3.5 years and god did I ever loathe it in the beginning. I’m a needle phobe and thought I’d never be able to manage it but you know what they say about the new normal and all that..
I was never afraid of needles, but now I have a healthy respect for them. Hopefully I can keep them healthy so I don’t have to deal with a port. I don’t think anything I do “makes me better”, but it does slow the progression. The only way I learn if something is helping me is if I stop taking it and all of a sudden my symptoms are worse. That has happened a couple of times
On a daily basis, do you have any other MS symptoms like fatigue? I’ve not really read up too much on the other types of MS. Once it landed on RRMS for me I was like a junky getting info for that but to be honest reading about the others makes me anxious so I tend to steer away from it.
Let’s see…sometimes I get really fatigued, but that could be because I only get about 6 hours of sleep each night (get up too early and go to bed too late). My foot and leg involuntarily twitch a lot, and I basically have no strength or control of my right leg below the knee. I walk like I have one of those swimming flippers on my right foot. I can’t curl my toes, and sometimes my toes feel a little numb. My calves are constantly cramping. Also, I can’t hold things like I used to so if I feel the urge, or even think I do, I head straight to the bathroom.
How old were you when you were diagnosed?