Treating Relapses: To Treat or Not To Treat?
Last week we discussed what relapses look like, including those pesky pseudo-exacerbations. This week we will be covering how to treat a relapse. The opinion about such treatment, and more importantly, when treatment is necessary, seems to have changed since I was first diagnosed.
Should you Treat?
Last week I mentioned that at the root of all relapses is inflammation, so therefore the goal of treatment of relapses is to reduce inflammation. But what relapses require treatment? That’s a good question. It seems to come down to quality of life and level of impairment caused by the relapse. If you are experiencing mild* symptoms (sensory changes, mild fatigue), then treatment might not be necessary. But if you are experiencing severe symptoms (optic neuritis that impairs vision, severe weakness that interferes with walking), that interfere with your daily life and ability to go about your daily activities, then treatment might be warranted.
This is an interesting change. When I was first diagnosed, and going through my relapses years ago, it seemed like everything was treated, nothing was left to “take it’s course”, like it is today. If this mentality was around back then, or adopted by my doctor, I may not have treated several of my relapses like I did.
Available Treatments
Once you’ve determined this is a severe relapse, and you do need treatment, there are several options available.
- Steroid medications. Solu-Medrol (methylprednisolone) is the old standby. This is a 3 to 5 day course of IV steroids usually given in a hospital or infusion center. This medication is so effective because it works to relieve inflammation and it is able to close the blood brain barrier. There are several other types of corticosteroids used during an MS relapse including dexamethazone, prednisone, betamethasone and prednisolone. I’ve had Solu-Medrol three different times and my reaction to it was always the same, it totally wiped me out. I never got the crazy energy, or Hulk like emotions that some people experience. I got quite the opposite, which some people do feel, although not as common.
- Acthar Gel. Acthar Gel is a treatment in injectable form that is a purified preparation of adrenocorticotropic hormone (ACTH). ACTH stimulates the adrenal cortex gland to secrete cortisol, corticosterone and aldosterone. With Acthar Gel, ACTH is delivered in a extended release formula. It is given once a day for 2 to 3 weeks and is injected into the muscle or under the skin. It is then absorbed slowly into the bloodstream. This works a little differently then steroid medication by helping the body to produce it’s on steroid hormones that reduce inflammation. This is an alternative option for people that have trouble tolerating corticosteroid medication and their side effects.
- Plasmapheresis. In layman’s terms, plasma exchange. This is a treatment option for people whose relapse and symptoms do not respond to steroid treatment. It is a difficult process that includes several steps. 1. Blood is taken from the person. 2. Plasma is removed from the blood and replaced. 3. Blood is transfused back into the person. This is been a successful treatment for other autoimmune disease is because it removes antibodies from the blood, but is only considered as a last resort for treatment of MS relapse is at this time. It is also not approved by the FDA as a treatment specifically for an MS relapse.
- Intervaneous Immunoglobulin (IVIG). This is another treatment that is only used in situations where other treatments have failed. This treatment uses human immunoglobulin, an antibody from healthy individuals, as an injection to help boost the immune response. This is also not an FDA approved treatment for MS relapses.
Long Term Effects
The jury seems to be still out on whether or not treating a relapse will 1, improve the relapse symptoms faster and 2, slow overall progression of the disease. In theory, you would think that treating a relapse with inflammation blasting steroids would improve both the length of the relapse and your overall disease progression. But it might not work like that (how unfortunate). So it’s up to us as patients to decide how we want to proceed when a relapse strikes.
How have you handled your relapses? Have you treated all of them, or have you left some to resolve on their own? Let me know!
*A quick note about mild symptoms. I really hate the term mild symptoms. In my opinion, and experience, even the “mild” symptoms they speak of are quick obnoxious and can interfere with quality of life. When my leg is burning or numb, it doesn’t feel mild, even though doctors consider it mild!
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I can say that each time I have had a flare up, the doctor normally says steroids are the best treatment. I have typically done the steroids and they do make me feel terrible but I guess they help the flare up’s duration. Today, I am actually going to talk to my doctor about the flare up I am having now. It has been a bad one and I do not know what to do. I do not know if I should wait longer, as it has already been going on 2 weeks or just do the steroids. I know they say, steroids help inflammation and the flare up will go away faster, but I mean what about the side effects?
I told my doctor 2 weeks ago that I thought I was having a flare up because of everything I was dealing with. She said it seemed like a pseudo relapse. She finally ordered the MRI and it turns out that I was right, now 2 weeks later she is going to want to do steroids. That is just frustrating. If she had listened to her patient before, this could have been almost over now!I honestly do not know what to do now!
Oh no!! I was thinking about you earlier this week and I wondered how your MRI went. I’m sorry you’re going through this!
That’s crazy to me that your doctor didn’t listen, I’m sorry about that too.
What did you decided to do? Take steroids?