[Tom A]

Hello again everyone. Ed Tobias gives a link with great info on this topic for everyone on a DMT. Each DMT has a different level of concern as they work differently to the same end. The link that I tried to post above, is at the same web location as Ed’s post, is written a few days earlier, and is also thoughtful as are the reader responses:

https://multiple-sclerosis-research.org/2020/02/pandemic/?unapproved=74414&moderation-hash=2c0c865b226c6c56136df237f8e2c4bd#comment-74414

I have signed up by email to their posting notifications, and new posts are coming to me regarding this subject, several a day, by knowledgeable people. If this is a topic of concern to you, it appears that this is the place to go, at least for the time being: https://multiple-sclerosis-research.org  When you get there, search for COVID-19 and CORONA or other terms you think of. I am relieved that there is a place I can now go to get good information about my concern.

Keep in mind the difference between good scientific data and second hand information. Everything I’ve talked about is now “second hand” and you have to look it up yourself to be sure for yourself. Specific to my situation, with a scheduled full Ocrevus infusion plus the factors I have pointed to in my initial post above, the following info has further contributed to my final decision to POSTPONE my Ocrevus infusion:

• Knowledgeable Italian authorities (where Corona is widespread), have suspended Ocrevus infusions for most people.
• My belief that the virus has a good chance of becoming widespread where I live.
• People over age 60 (like me) are said to be at higher risk for severe infection of Corona regardless of their immune function.
• My wife works in a well populated environment; increasing my odds of contact with the virus no matter how diligent I am in public.
• Ocrevus treatment continues to “blunt” your immune function from months, to years, after you stop using it and your next infusion date has passed (without new infusion).
• Estimates for the death rate of infected people are increasing, up to 3.5% (ABC News)

So that’s enough for me. Decision made.

(I have better things to do than post on blogs and do this only as a matter of personal responsibility to finish what I started and share what I know if it is important to others, and I think this is.)

Good day and good luck

 

[Tom A]

Lana above asks “did anyone try food management as a choice before deciding these drugs?” Hello Lana- your post showed up in my inbox this morning, and fits my experience somewhat. So,..back in “the day” (my day) when I first actually reacted to knowing I had MS and actually sought to do something about it (1994-ish), there were steroids and a new drug Betaseron, and that was it. As with most illnesses, there were suggestions for diet including anecdotal reports for “cures”. I found a “Swank Diet” in a book titled “The Multiple Sclerosis Diet Book” (still have it), 1977,87; from earlier publications). You can learn about it by Googling “What is the Swank Diet”. But in a nutshell, it is a very low fat diet with a bit of scientific evidence behind it. I’ve been on low-fat ever since (maybe not as strict now, as Dr. Swank would have liked), and I did 25 years of Betaseron and am on Ocrevus now. (I did well, relatively speaking, combining Steroids, Betaseron and Swank). I haven’t needed steroids since the late 90’s. At the time I had put some weight on anyway, and with a lack of a proven way to go, I went with Swank knowing it couldn’t hurt (most people) to eat low fat. What I liked about Swank was that he had actually tried his best to support his claims scientifically, and at the time I had just graduated with a PhD involving research methods, so it was a step up from anecdotal evidence and hearsay. But having said that, when one is combining various strategies to treat something, scientific rigor is lost and all you have left is the story. So that is “my story”, in part. Yes, I did “food management” along with other treatments, and I had a positive outcome. I did not do “food treatment” alone. I do not believe, anecdotally, that a low fat diet alone would have accomplished more than what Swank found, which was a slight statistically significant decrease in negative outcomes. Generally speaking, my acquired knowledge does not point to diet as more of a cure, for most illnesses, than a placebo controlled tested medication with statistically significant results. Everyone always says “talk to your doctor”. I hope my story helps.

[Tom A]

This is in response to Chris and his first infusion- You don’t tell your background (age, number of meds tried, current MS status), but this did show up in my inbox and I wanted to help give you at least some direction. I don’t get that response from Ocrevus, which I’ve only had my first two one half doses of. I am over 55, which this thread addresses. I don’t actually anticipate it will do much for me- I was on betaseron since 1995 and had a great response until my MS went secondary progressive (type = not active but with progression {an oxymoron]). Betaseron is an anti-inflamatory as is Ocrevus, although they work differently with the same outcome- minimizing inflamation which brings on further inflamation and subsequent nerve loss. But I don’t have inflamation seen on MRI. Doc says my strength and coordination may be declining as I am getting older- that is, this is what happens with old MS scarring as one ages, maybe. But to your question as to can anyone relate- I think I can. Betaseron can have some occasional nasty temporary side effects like an 18 hour stretch of the worst flu you’ve ever had. Over the course of the 25 years I took the medicine, I had that occur maybe 20, 25 times, randomly. Easily treatable with Ibuprophen and a thick blanket. But the 25 years of treatment did keep me from having further attacks. So I am left now, at 61, with a much more functional nervous system to help me face the rest of my life. No wheel chair, no cane usually , some fatigue, sometimes I look drunk, and I have to know where the bathrooms are and wear a diaper when I don’t. Things could be much worse. So I relate to the temporary side effect you describe, and my opinion is you have to deal with it. It’s not nearly a big deal as might be the consequences of MS without treatment. If you have no MRI activity, you may want to discuss with your doctor why you are on it. On a side note, do some research on something called Biotin. It may be useful. Best of luck to you and plow ahead. I can relate.