Shots, Infusions, or Pills for Your MS?

Ed Tobias avatar

by Ed Tobias |

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There are more than a dozen disease-modifying therapies available to treat MS. Some are shots, some are infusions, and some are pills. Some are more effective than others.

The marketing intelligence company Spherix Global Insights regularly surveys which of these treatments are being used by neurologists and what’s influencing their selection. Here’s what the latest Spherix quarterly survey shows about what’s being prescribed for new MS patients.

Just over half of the 100 neurologists surveyed say they’re choosing a pill as the first disease-modifying treatment for relapsing MS no matter what level of disease activity a newly diagnosed patient has.

But for the other half of surveyed neurologists, the treatment choice is influenced by the level of disease activity. If a patient’s disease activity is low, 54 percent of that group preferred pills, such as Tecfidera, Gilenya, and Aubagio. Thirty-nine percent preferred injectables, such as Copaxone. If the disease activity is high, however, their treatment choice is one of the meds considered to be highly efficient, such as Gilenya, Tysabri, or Ocrevus.

As someone who suffered “needle fatigue” using Avonex for many years, followed by several years of Tysabri infusions and then Lemtrada, I can tell you that I prefer an oral med. I think most MS patients would. But I also prefer the kind of treatment that’s likely to produce the best outcome for me.

I prefer a pill, but …

I used the oral med Aubagio for a short while between Tysabri and Lemtrada. It seemed to work as well as Tysabri and better than Avonex. But my current Lemtrada treatment seems to have worked the best. It certainly wasn’t the easiest or the most comfortable treatment, and its potential side-effects were the scariest. But even at 70 years old, I was willing to try a treatment that might stop my MS dead in its tracks. Lemtrada treatment even holds out the possibility that some of my symptoms might be reversed.

When I was using Avonex, I hated jabbing myself in the thigh once a week with a needle that seemed far too long. But it offered me the best chance of beating my MS. I think if I had the choice back in 1996 of a shot or a pill, my heart would have chosen the pill. But if the shot were more effective, I hope my head would have chosen the shot.

Someone’s treatment choice, of course, should follow a serious patient-doctor discussion. When that discussion is held I hope that efficacy trumps ease of use.

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Comments

Cindy Watkins avatar

Cindy Watkins

I would like more information for the us who have had MS for 37 years. In other words, most of the information I read about is medications for the RR. I realize there has not has been a treatment for PP, but now that I am older than 50, my Dr says it has not been tested on anyone older, plus I have the JC virus, whatever that is).

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Ed Tobias avatar

Ed Tobias

Hi Cindy,

In the US the vast majority of DMTs are only approved for RRMS. Only Ocrevus and the generic mitoxantrone are FDA approved for SPMS. I suspect the pharma companies haven't been willing to run the RRMS medications through the testing process to obtain approval for SPMS or PPMS use. (I don't know of any DMT that is approved for PPMS).

That's not to say that these medications don't help someone with progressive MS. I haven't had a relapse for many, many years but my disability level has progressed. So, you could say I've moved from RRMS to SPMS but that hasn't stopped my neuro from continuing to treat me with several of the RRMS meds.

I'm 70 years old and was diagnosed over 38 years ago. I'm also positive for the JC virus. (And, if your neuro hasn't explained to you what that is and why it's a consideration when selecting a medication, shame on him or her).

If it's possible, I'd look into finding another neurologist...preferably one who is an MS specialist. You should be seeing a doctor who will tell you what can be done to treat your PPMS, rather than one who tells you what can't.

Ed

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Dale Degraffenreid avatar

Dale Degraffenreid

What about PPMS? It seems we hear a lot about RRMS but very little about the PPMS. Why?????

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Barb Modo avatar

Barb Modo

I was diagnosed originally with PPMS, years later changed to SPMS. I started Ocrevus this July, which I’ve tolerated my first 2 partial doses very well. Next month I’ll have my 1st full dose. I think we hear more about RR because it is the most common type of MS. I’m just so grateful for Ocrevus, the 1st Med for Progressives, although it is also being utilized for RR’s.

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Mike H avatar

Mike H

Dale,
It seems that since there’s no DMTs made to actively treat & have effective efficacy for PPMS, even SPMS, there’s really nothing to discuss & that’s very sad for people who get to this point. I’m at the SPMS level & have tried & failed with most of all the DMTs made except Lemtrada & Ocrevus. I’m currently getting Methotrexate spinal injections every other month but I’m feeling my progression moving on not in a good way. So after this I have the 2 meds left I mentioned above. I’ll most likely run through them as well, then what? I’ll be asking the same question as you did. Be left with no direction unless a new miracle medication comes about but I’m not counting on it.
Mike

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Karen Sawyer avatar

Karen Sawyer

Hi Mike,
I'm sorry to hear of your MS history.
I am PP going on 30 years since my dx.
Now I have to depend on my husband and aides for everything except eating.
I am fortunate I have a hubby to help too because my only appendage that works is my right hand, partially.
Like most PP's, we all hope SO much for a med to help us.
I'll be hoping the best for you, and all MS'ers.

Reply
Karen Sawyer avatar

Karen Sawyer

Hi Dale,
You don't hear much about Primary Progressive folks - of which I am one - because we are a very rare breed. I don't remember the statistics, but we make up a very, very small percentage of all MS'ers.
So we don't a version most others have. Our MS never goes away nor has any periods of re-
mission. And there are no meds for us - yet.
We can only treat symptoms and hope the MS won't progress further.
One of your new PPMS friends ...

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Ed Tobias avatar

Ed Tobias

Karen,

I don't know where you're located, but in the US Ocrevus (ocrelizumab) is approved for PPMS as well as RRMS.

Ed

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Edie simister avatar

Edie simister

Dear ..
I am trying to have the courage to go forward after11years I losing hope . Need stamina and strength to move. I have none. MADe to encourage not to fight for myself

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Ed Tobias avatar

Ed Tobias

Hello Edie,

I've been dealing with this disease for over 38 years. It hasn't been easy but, fortunately, my symptoms have only progressed slowly. I also feel that the treatment that I've received from various DMTs has helped.

My philosophy has always been that, rather than hiding from the storm it's better to learn to dance in the rain. I hope that you, too, can have the strength and stamina to do that.

Ed

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Karen Sawyer avatar

Karen Sawyer

Hi Ed,
You have truly been fortunate in your lack of faster progression over time.
I was dx'd in '95 with symptoms since '92. It took another 3 years of constant progression, (with no remittances), 1yr of useless Copaxone shots and 3 yrs of useless Betaseron injections, plus a year of quarterly chemo - Novantrone - infusions (the "Blue Goo") and many tests to change his dx.
I officially correctly became dx'd as PP and I am a bed-bound quadriplegic, with no hope for any new medical improvements on the horizon.
MsBluIs

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Ed Tobias avatar

Ed Tobias

Dear Karen,

Yes, I know how fortunate I've been. For many years I lived across the street from a man, a few years older than me, who had PPMS and went downhill very quickly. He was a chair/bed-bound quad with only limited use of his hands.

Who can say why I'm still able to play with my grandkids and travel while you and others were hit so hard? MS treatment advances seem to come very slowly, but they keep coming. I can only hope that one of them will be able to improve life with MS for you.

Best regards,

Ed

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Karen Sawyer avatar

Karen Sawyer

Thank you, Ed.
Hang in there; hope for the best.
It's so hard to stay optimistic, but do try.
It truly can help make you stronger and appreciative of what you can still do, and the importance of friends.

Jennifer avatar

Jennifer

I have had MS for 30 years and have been through copaxone and techfidera. And now have Tysabri. And recommend less than 10 grams of saturated fat per day. Also need vitamin D.

Rec Dr. Ira Swank book for MS Diet.

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Karen Sawyer avatar

Karen Sawyer

Thank you, Ed.
Hang in there; hope for the best.
It's so hard to stay optimistic, but do try.
It truly can help make you stronger and appreciative of what you can still do, and the importance of friends.

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