MSAA Online Focus Groups - Day 7 - My MSAA Community

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MSAA Online Focus Groups - Day 7

Happy Tuesday everyone. Similar to yesterday, we want to get your feedback on another resource that could help with SDM.

What disease-modifying therapies (DMTs) are available for treating MS?

mymsaa.org/PDFs/Treatment_C...

- How useful was the content?

- How easy-to-use/understand was it?

- What aspects were beneficial?

- What aspects were not helpful?

- Is there anything that you would do to improve it?

47 Replies
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I loved that chart! So clear and easy to see all the medications lauded out in the same format. I also felt it was very unbiased!

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πŸ€£πŸ˜‚ unbiased? Joking

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Ok, I would only add one thing to it. Which MS does it treat. We are now to the point of more treatments for more MS DXs!

In my unbiased opinion, I like this one! But I'm biased! ☺️

It's clear, and easy to understand.

Oh add a place to write notes!

Jes🦈

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I agree with Jes, as all of those treatments are used by RRMS patients, it would be useful if the chart was directed to the different types of ms and also the age of the patient.

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I understand everything but I have been read info for 14 years. I think for a new person it would be overwhelming. A brief explanation for starters then as you are familiar get more in depth info

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Looks great, however from someone who spent years with the abc+Rebif dmt's...and for years suffered with severe flu-like symptoms...the descriptions....I find inaccurate? YES, for years that applied, but for the last 2-3 years, nothing but time made the flu-like symptoms subside. My Neuro's finally pulled me off the DMT's, and told me they are finding this happens to mist patients with prolonged use. 2.5 years of the flu including fever with shakes, aches....

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I think the hard part with descriptions is they vary so widely with each patient. I have almost no side effects with Rebif. The same goes for a friend of mine. So it’s hard to determine how someone will be affected and only the possible side effects can be listed.

I’m sorry they made you so sick!

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They started out great....but anyone can have worsening side effects with time....kind of the opposite of what we learned when first starting them. Don't feel sorry, wound up being the best thing, getting off all the drugs. I believed in them to suffer thru them for years. But after detoxing from all the drugs...life got much better, and now 5+ years symptom free! I had maybe more relapses than anyone while on the DMT's. Still, nice chart!

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Hi MarkUpnorth

I agree with you. When taking DMTs the side effects can be rough and for the duration of taking that DMT.

I have been on three 2 injection one pill. Ist injection every day was rough the whole time 7 years. Pill didn't work allergic to it. Now I'm on Rebif over two years. First year was hell second year way better and I'm BETTER it's helping me. But some days still aren't fun. I was really bad the first 5 years-severe exacerbation

Was paralized many symptoms. But life has gotten better for me especially since I started the Rebif.

I've dealt with cancer, have migraines, depression as part of MS

But I'm truely blessed.

I really like your posts.

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Well, I hope Rebif works for you. It's what I ended on after 5 years? of it. The flue like symptoms started after 1-2 yrs?

The big C though, that's what really scares me. I, like my father and both my grandfathers, had prostate cancer. So, yes, I watched it like a hawk, graphing the results yearly. So when they took a nose dive, and I was told to get ready for the really nasty stuff, surgery, chemo, radiation....I weighed in on 1 grandfather died of it, the other with it, but from nothing related. My father, beat it with seed implants......Hmmm, none of that sounds like anything but not fun. I did research.... Stopped any testosterone, which wasn't really doing any good. Eliminated anything peanut. And started drinking 8 oz. of unsweetened pomegranate juice every morning. Retested twice over the next year, and my PSA levels went down to levels over 2 decades ago! Okay, there's also the medical cannabis too? There's been a lot of discussion about people treating cancer with it, and it working! Maybe all together? It seems to have done the trick. Still scares me a bit that maybe I was able to beat the PSA thing, but that it, or just the potential, still lurks somewhere inside me. I'm going to be positive, and that even if I get it, I'll live long and dies from something else... Like skydiving, or mountain climbing in space!

As long as you are tracking your relapses, and they are staying low, you have to hope the meds are working for you. But, if you develop full time flue-like symptoms,...look at your relapse charts and if they're not slowing down, you may want to stop them at that point? Till then, you have to hope, they're doing you some good. I did through several years of non-stop flue-like symptoms.

The migraines,... I know of several family members who had them, horrible, for years, and through years of shots, got rid of them, for good! Depression, is controllable with the proper meds. Again, know of persons with very severe, multiple hospitalizations type, that till they found the right meds, it was h e double toothpicks for them. Luckily they failed at suicide attempts I guess it was so horrible. But, again...all are now doing well, living great lives. They know their needs for medical brain chemistry adjustment though diligent medication.

So, don't let these things let you down. Work on them till you get them right. Like the many, many, little things I live with, but have at least, learned how to live with them best I can....till I can knock them out! Staying positive!

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Wow MarkUpnorth

Thank you for the reply. I'm sorry about your history of prostate cancer. Good for you in getting healthy and a step ahead of IT. I watched my father at 53 die of prostate cancer. Cancer is an ugly word. My grandpa on my mother's side died of lymphoma. Lots of cancer on both sides. I appreciate you talking to me. It means a lot. I am truely blessed. But I've had my struggles. I'm tough and positive but mostly choose love or hatred. I do like reading your posts. I'm not always the best at speaking my peace. Thank you for your patience.

God's blessings to you my friend.

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Wow! What a lot to read! I'm in the UK and have never even heard of most of these. The drugs are in alphabetical order I presume so no indication of how long they've been used or by how many patients., or for that matter their efficacy. The actual information is somewhat generic so more detail would be needed from a specialist. I'd need a 3 day appointment to discuss them all . . . .lol

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Not at all useful to those of us told by our several neurologists that nothing is available for those in my age demographic. According to my limited research, because DMTs are generally not trialed on a population older than 65, and because (in general) immune systems of the aged are not as effective as those of younger people, no DMTs are usually prescribed for this group of older people with MS. Once again, it is useful for those eligible for DMTs or newly diagnosed.

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I find this horribly wrong! goatgal and should be revisited,as more and more older people are being dxed! πŸ€—πŸ’• And I feel very strongly that Everyone has a right to be on a DMT if available! (Stomping foot!)

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No treatments offered in the UK if you're older.......

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I don't believe this is ture in the US. I was dx'd at age 57. Took Copaxone til this year, Apr. 2019. Read a few articles that say in some people, MS is not as active if at all in peope over 65. Mine has not been all that active ever. so I spoke with my neuologist specialist and came of the med this year. And I'll see how it goes. If anything changes I can go back on it . I was 71 in March. I have a daughter dx'd 3 years before me just before her 20th bd. She was on AVONEX for about 12 yrs and two years ago after having a mild course over many years, she came off her DMT and says she is doing better than ever. She has MRI's every 6 months. I too will have another one in 6 months. There needs to be more research on MS in older folks but no one should be told they cannot stay on a DMT after a certain age.

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I’m 62 and my neurologist put me on Ocrevus but she told me if I wanted I could go back to Avonex, since I felt that helped me the most. but after being on Ocrevus I might just stay on it. So us older folks do have options. Just saying

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I have to agree with Goatgal, if you will excuse me Goatgal, she is a good few years older than you and she is referring to that age bracket to which I agree with her, blessings Jimeka πŸ¦‹

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Horse714 I am pleased to hear that you have been on DMTs. Not all neurologists/insurers would prescribe/pay for untested therapies for those older than you are. I was diagnosed at 70: my primary insurance is Medicare which somewhat limits my options.

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As I said, should be revisited! MS does not go away!

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I have been on medicare for a few years now... advantage plan, and have not had a problem getting payment for Copaxone. I still had a copay but it seems to have come down a bit. As mentioned above, I am 71 and came off medication in March. This will of course make the ins, com, happy and will certainly be nice to my own finances. I am hoping I won't have any progression but if so, I'll have to go back on a DMT.

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A further thought: when I was diagnosed with MS, the neurologist prescribed a week of solumedrol. Only the first day, in the hospital, was covered by insurance. The following days were not. I am fortunate in that I had savings to cover the cost. Many seniors are not so fortunate.

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HelenHU This chart is helpful for a comparison. When was first diagnosed, there were only a handful of treatments available, and I made a chart like this, for my benefit. It was easier to see the differences. This diagnosis of 'ms' is overwhelming, and anything to ease this whole thing is good. Perhaps add a place to take notes. :-D

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The chart is laid out very well and easy to read. And for a lot of MS patients, mode of administration (pill, injection or infusion) can be a deciding factor in choosing a medication, so separating the DMDs this way is helpful.

I do think the length of time each DMD has been on the market is a critical piece of information that is missing in the chart, though. Also, while the side effects for each medication are very comprehensive, more specifics about them - the duration/severity, % of population experiencing them - as well as a safety profile.

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This chart will be very helpful. Some people don’t realize how many drugs are out there now. Just need to put in what type of ms each is used for.

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It's nice to have the general information side by side to make it easier to compare side effects, etc. I think it's helpful to someone newly diagnosed to narrow the choices. For instance, if one were unable or unwilling to do any kind of injection, or the drive to an infusion center was too long, one could look at others to discuss with doctors. The chart can't explain everything for every patient and is meant for an overview and a place to start. I remember looking at that chart and then looking at the specifics of each DMT I thought I wanted to discuss with my doctor. I agree that it would be helpful to know when the drug was first approved since many of us want to know that it has a track record to look at.

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I printed off the charts to have them at hand, I love it! I think it does a great job describing how each drug works and how its administered. I think it is very easy to read and understand!

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What about Rituxan or is it under another name?

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It could be useful for those looking for another drug to take.It was easy to read and understand.

I was most interested in reading about the side effects of these drugs so to see them organized that way is helpful.

Most importantly, I would like to know the mechanism by which the drug effects me and to what degree it will affect the root cause,if at all.;)

Also,term of effectiveness.

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You raise an interesting point. What about comorbidities? How do drug choices affect those treated for high blood pressure, rheumatoid arthritis, lupus or diabetes?

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As a type 1 diabetic I am especially interested in that.

The words they use to describe side effects are interesting.... "a reduction in heart rate".

I believe they need to re-word that so as to not scare people.How about " Pesky Heart Attack" or " Potential Plumbin" Problems+ or abbreviate that to PPP to make it even more benign? πŸ™„

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The content was very beneficial for new patients. An easily understood. All medications need to be included not just the ones that insurance companies will easily approve. From the SDM standpoint this is a good starting off list and the doctor or case manager should start off with and analyze the DMT effectiveness and be changed if exacerbations are more than 1 a year.

What should be added at the beginning of the form that you should be tested for the JVC virus. There also should be an explanation of PML and the percentages that the DMT has caused it.

My first neurologist was a top 10 doctor in the city and never even tested me for JVC. My first 3 years of DMT treatment all had significant rates of causing PML. Knowing this information my have changed the DMT'S I was taking. I was not made aware of JVC and PML until he retired and I transferred to another doctor in the same practice. When I learned of this I was so angry I couldn't see straight. Fighting mad at my first doctor. My new doctor couldn't rule out that I didn't already had it.

I was just had been diagnosed with cancer. Being aware now knowing what I do I my have changed my cancer treatment.

I just have had a friend pass form PML. It was not MS based but was prescribed a medication that also could cause PML to JVC positive people.

It took him 3 years to become bed bound and another 5 years to become non verbal and completely paralyzed.

I do have a new neurologist that feels I could possibly have PML and is monitoring it.

It's just something that all MS patients should be aware of.

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It is a very nice chart but all the drugs cost to much so I will not use them.

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Nice chart. It is easy to understand & give good explanations.

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Just a couple more thoughts. What is the cost per year for each MS drug treatment? What is the percentage of people the drug has actually helped compared to the other drugs on the chart. Shouldn't that be part of the chart so new people diagnosed with MS will understand the pharmaceutical companies and doctors bias when advising a certain drug.

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Easy to read but the average cost to the patient would be helpful as it can be significant.

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I find this chart very helpful. Especially for the newly diagnosed. It could be helpful to mention if it’s a first/second line DMT or if it’s for relapsing or progressive forms of MS.

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Nice concise info. Helpful

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When that chart appeared it was too small for me to read, I have trouble remembering how to make the font larger & then returning it to normal size so I don't do it. I'm sorry this is not what I thought it would be. I get lost too easy as my vision is not very stable I believe it would be best if I don't do this study or what ever it is. Mary

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You can try pressing the control key & the + sign simultaneously to enlarge and the - key & Ctrl to shrink it back down.

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- How useful was the content? Alot useful. But not completly.

- How easy-to-use/understand was it? Very.

- What aspects were beneficial? Good DMT overview.

- What aspects were not helpful? Need to use layman's terms for some of the more technical terms. No small discussion of historical DMT performance. No small discussion on the type of MS that the DMT is good for. No small discussion of the benefits (eg. the MS symptoms treated) of the DMT.

- Is there anything that you would do to improve it? Include the above items.

My opinion. Is it a valuable opinion? The jury is still out on that one. :)

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I have had this type of chart information on dmts in MS pamphlets given to me. These charts are well done precise and short pertinent information about DMTs and how they work. The chart is to the point. It should though state which type of MS it is recommended to help.

How much it will cost a patient demands on their financial and insurance situation. That's the reality of life. Affordable help/health care in being able to get these medications for treating their MS. Me included!

What good are these DMTs if people WITH MS aren't able to get access to use them. Their are MANY different life situations out there people are living under.

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Very easy to read and understand, I’m on Tysabri at present have been since February 2018 xxxx πŸ‘πŸ»πŸ‘πŸ»πŸ‘πŸ»πŸ‘πŸ»πŸ‘πŸ»πŸ‘ŒπŸ‘ŒπŸ‘ŒπŸ‘ŒπŸ‘Œβ€οΈ

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It s nice to have all the info in one place,but would like to see the success rates at least from the trials or are we the trial??I know there are success for each med,would like to see figures

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would have been helpful as resource in years past. now close to 80 and working to come off Copaxone

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I really like having all of the DMT medications grouped together where you can see the pros and cons of each drug. It would be nice if they were also grouped by which type of MS they are used for. This would be very useful when trying to make a decision on which DMT you want to try.

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Great chart. Easy to Read. The only thing missing, although may not be easy to get, is the avg, price of each drug. That varies however with ins, companies, but I just heard today it may be a new law that list prices for all drugs may have to be posted.

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