Meds and Treatment

IMG_0312One 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

 

 

 

Welcome to my blog

cropped-welcome.jpgMy name is Steve, and I was unexpectedly afflicted with MS ten years ago. It came as a complete shock because nobody in my family ever had it, and no warning signs preceeded the day the first symptoms appeared.

My goal is to enlighten those of you who may have a family member or a loved one who has the disease, or to provoke a smile, a laugh or a nod of understanding for anyone who, like myself, has to cope with the aggravations, inconveniences and embarrassments that our symptoms thrust upon us.

One word of caution: I am not a technically savvy individual. I don’t have a smart phone yet, although that will change soon, and until recently I have not been plugged into the social media scene. My computer skills are very limited at best, so I am sure this site will experiences a number of changes, some unintentional, until I am happy with the final product.

I want to share the experience of what it was like to have lived a perfectly active and “normal” life for almost fifty years before having to cope with a disability that changed everything, including my perspective. I hope you enjoy the ride.

 

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