It’s likely that the vast majority of us on this site have had at least one infusion of corticosteroids for our Multiple Sclerosis. Names like methylprednisone (Solu-Medrol) and dexamethasone (Decadron) are not unfamiliar to those of the compromised myelin. I promised a discussion on the topic in a posting a few weeks back, and the time has come.
Corticosteroids are synthetic replications of natural hormones produced in our adrenal glands. They seem to have an anti-inflammatory function and were some of the first drugs used to combat MS attacks, going back decades.
Corticosteroids differ from anabolic steroids in almost every way, other than they are derived from a hormone (male testosterone). When being administered corticosteroids, one need not worry about the side effects we read about when athletes use these drugs.
In layperson’s terms (not that we’re of the lay persuasion when it comes to MS), this form of drug helps to shrink the swelling around an active lesion in the central nervous system. Current evidence shows that, months out from an exacerbation (attack), a person is likely to be in the same place clinically with the disease, with or without the use of corticosteroids.
Doctors, or at least the ones I have spoken with about the topic, say they’ll continue to use these steroids during acute exacerbations because patients demand they do something.
In most cases, a 3-5 day infusion of high-dose corticosteroids (likely with a few days of oral taper) does relieve many of the symptoms of the attack. When I write “most cases,” that’s most attacks, not most patients. Some patients will respond well most of the time, and the drugs will do nothing for others. Of course, I write in clinical generalities.
For patients with active disease, it is not uncommon to be placed on monthly “pulse” doses of these drugs. The theory here seems to be, if a big dose helps when inflammation is uncontrolled, small doses will keep it in check. For people I have talked with in this category, treatment seems to have them in a better place than without.
All of this is leading up to the side effects, as you might have imagined. The National MS Society Sourcebook on the topic states the following:
“Possible side effects include stomach irritation, elevated blood sugar, water retention, restlessness, insomnia and mood swings…The side effects of long-term continuous steroid use are serious and well-documented. These include stomach ulcers, weight gain, acne, cataracts, osteoporosis (thinning of the bone), deterioration of the head of the thigh bone and chemical diabetes.”
“Mood swings”: that’s a nice way of saying ‘roid rage!
As many of you have understood from the past two weeks, I have experienced some of that “deterioration of the head of the thigh bone” called avascular necrosis and have had a 10cm rod cut, drilled and hammered into the head of my femur. Not something I had ever considered when I was going in for my six three-day infusions of Solu-Medrol in the first 18 months after diagnosis.
I’m not bitter (well, maybe a little aftertaste…) but I wanted to use this bully pulpit to open the conversation for others who dislike using these drugs, but don’t know what else to use, or worse, have a doctor who “forces” them on you.
Let’s see where this discussion takes us, shall we?
By the way, for those who were wondering: I am, today, two weeks out from surgery. I am only using a cane to get around and need very little (if any) pain medication. The surgeon is very happy with the recovery thus far. We’ll not know if this worked for a couple of months (bone could still collapse…well, it will, eventually, we’re just hoping to buy 3-5 years here).
Corticosteroids are synthetic replications of natural hormones produced in our adrenal glands. They seem to have an anti-inflammatory function and were some of the first drugs used to combat MS attacks, going back decades.
Corticosteroids differ from anabolic steroids in almost every way, other than they are derived from a hormone (male testosterone). When being administered corticosteroids, one need not worry about the side effects we read about when athletes use these drugs.
In layperson’s terms (not that we’re of the lay persuasion when it comes to MS), this form of drug helps to shrink the swelling around an active lesion in the central nervous system. Current evidence shows that, months out from an exacerbation (attack), a person is likely to be in the same place clinically with the disease, with or without the use of corticosteroids.
Doctors, or at least the ones I have spoken with about the topic, say they’ll continue to use these steroids during acute exacerbations because patients demand they do something.
In most cases, a 3-5 day infusion of high-dose corticosteroids (likely with a few days of oral taper) does relieve many of the symptoms of the attack. When I write “most cases,” that’s most attacks, not most patients. Some patients will respond well most of the time, and the drugs will do nothing for others. Of course, I write in clinical generalities.
For patients with active disease, it is not uncommon to be placed on monthly “pulse” doses of these drugs. The theory here seems to be, if a big dose helps when inflammation is uncontrolled, small doses will keep it in check. For people I have talked with in this category, treatment seems to have them in a better place than without.
All of this is leading up to the side effects, as you might have imagined. The National MS Society Sourcebook on the topic states the following:
“Possible side effects include stomach irritation, elevated blood sugar, water retention, restlessness, insomnia and mood swings…The side effects of long-term continuous steroid use are serious and well-documented. These include stomach ulcers, weight gain, acne, cataracts, osteoporosis (thinning of the bone), deterioration of the head of the thigh bone and chemical diabetes.”
“Mood swings”: that’s a nice way of saying ‘roid rage!
As many of you have understood from the past two weeks, I have experienced some of that “deterioration of the head of the thigh bone” called avascular necrosis and have had a 10cm rod cut, drilled and hammered into the head of my femur. Not something I had ever considered when I was going in for my six three-day infusions of Solu-Medrol in the first 18 months after diagnosis.
I’m not bitter (well, maybe a little aftertaste…) but I wanted to use this bully pulpit to open the conversation for others who dislike using these drugs, but don’t know what else to use, or worse, have a doctor who “forces” them on you.
Let’s see where this discussion takes us, shall we?
By the way, for those who were wondering: I am, today, two weeks out from surgery. I am only using a cane to get around and need very little (if any) pain medication. The surgeon is very happy with the recovery thus far. We’ll not know if this worked for a couple of months (bone could still collapse…well, it will, eventually, we’re just hoping to buy 3-5 years here).
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