MSAA Online Focus Group - Day 8 - My MSAA Community

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MSAA Online Focus Group - Day 8

HelenHU profile image
21 Replies

Final resource to give your opinion today please: How do I decide between different disease-modifying therapies (DMTs): Interactive decision aid

mstrust.org.uk/about-ms/ms-...

- 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?

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HelenHU profile image
HelenHU
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21 Replies
jimeka profile image
jimeka

I found it very useful. I had to pretend that I had RRMS to see how it worked but I liked the information and that you could compare each drug. I just wish that Ocrevus was available in the U.K. for PPMS. Blessings Jimeka 👍

I think this is a great tool. Bottom line is the decision you make with the doctor and whomever you trust, spouse, partner, etc.

greaterexp profile image
greaterexp

I appreciated the comparison tool and the summing up of the most common or serious side effects.

normwithms profile image
normwithms

The chart was very nice. I have dropped all DMTs so it is not very useful to me.

falalalala profile image
falalalala

It might be useful to someone who is looking to take a drug. It is easy to understand and

I was able to compare the side effects easily.

It was helpful to me as it just reinforced my decision not to take these drugs.

Thank you for that.:)

JTZES profile image
JTZES

I liked the site. It included items that. I reccomend to yesterday's paper format. (How MS is treated and how beneficial it is to stop exacerbations).

It was easy to use and the comparison of medications is very useful. There are also aspects to the site that could be added to the site with hyperlinks to better explain non familiar terms.

The facts included were described very similarly as yesterday's paper format.

Either version should be offered to all newly diagnosed patients.

sashaming1 profile image
sashaming1

I exolored the site but didn't see a section on SPMS. It was not easily navigated for my quick look. It did not have a summarized section where the number of words was reduced. Not that it didn't have these things, but I didn't find them. Didn't have a button to select the US.

LJMC profile image
LJMC

This chart is easy to read & understand, BUT set only for those in the UK & very biased towards one type of DMT.

Corran731 profile image
Corran731

This is a good tool. What I would have liked is to have been able to simply choose 2 or 3 DMTs to compare rather going through all the filters.

MarkUpnorth profile image
MarkUpnorth

Okay, I live in the U.S., so.... But looking at the side effects, in a more detail simple summary than I ever saw....yes I read the fine print many, many page literature that came with ever script of all of the meds before taking them...did I understand it all?....to some degree yes, but did I know it would affect my liver? Well, I learned that the hard way, doc's said it was okay, and that i should not stop them...., still I tracked it with charts and graphs, my SGOT, and SGPT, for decades. No, I never ever had a drink during those decades. Now that I'm off all drugs, my SGOT & SGPT is not 200x normal, but back to normal, and I do enjoy a sip now and then, especially since I used brandy to try and get passed out drunk to kill the evening pain, so I could get to sleep, instead of being nearly dead, tired. Emphasis on dead... Till medical cannabis came around. (It only took at most, 2 shots of brandy during those years! When you're soooo tired, but cannot get to sleep because of the pain....) But now with Med C, my liver thanks me every day! And the pain is dealt with enjoyably as soon as it shows it's ugly face.

But, that and the kidney thing?..... Would I have thought twice! No, I'm sure I would have still gone and done it with my doctor's encouragement.

The comparison feature of the link was nice. Technology today makes it simple to do these kinds of things these days. Yeah, when I started my DMT's, computer programs & apps were still in their infancy.

BUT, I never saw before that I shouldn't try and get pregnant while under all the DMT's I took?!?! (actually I did) No worries, I never got pregnant! LOL!

Mjcarbo profile image
Mjcarbo

Since I live in the US, this article was not really applicable to me, but the information about the different treatments was good.

carolek572 profile image
carolek572CommunityAmbassador

HelenHU Nice comparison tool but it should be used as such, a tool. Your medical team would probably be better suited as your first resource should you have any questions or concerns about any DMT. I am sorry, but this isn't very helpful to me. :-D

DIsneyQueen profile image
DIsneyQueen

Very helpful and easy to use.

Weldon60 profile image
Weldon60

I selected one medication that have not take, but been considering and one that I use to take. It was helpful in providing questions to consider and the answers to those questions. After reading I was not sure I wanted to take either of the medications.

kycmary profile image
kycmary

The site was informative I wish I had seen something like this years ago instead of Drs. telling me "I'm putting you on ..."!! & "You need to do this ..." Until the Dr. talked about Ocrevus I was never consulted by any Neuro about which DMT to use. When I did Tysabri it started as a research study which I decided to stay with because it did help me. There seems to be a lot of DMT out there now & there side effects which I am glad of. Hopefully those who are getting Dx now won't have the problems I & several others had in our beginning MS journey!

hairbrain4 profile image
hairbrain4

The format and information are great and can be very useful. It was more detailed than the paper one from the day before. I'm in the U.S. so it didn't have all the same medications for the different types of MS. I found it easy to navigate through the website.

Bodega1939 profile image
Bodega1939

I am sorry, Dr. Hu, but I have resisted DMTs for so long I can't remember when I started doing that. I do remember why. I read all I could find, in and out of the Rx industry, and decided I would wait until there was more information. Now, almost 80 years old, reading the literature again, I think I would like to try mayvent. Perhaps I will have that opportunity.

Thank you for the opportunity to allow us to express our opinions. I enjoyed reading everyone's entry. I hope you share the results or tell us where the results will be published.

Nemaste, gwenie

pamgarner profile image
pamgarner

easy to use and understand, The one thing I have never seen is how long can you take a med?I know as long as it works or you have side effects,but are there guidelines for meds like they don't suggest you take it longer than 5 yrs.I guess that is a dr. question

kdali profile image
kdali

Excellent resource!

Adslas2112 profile image
Adslas2112

Put in my answers and was recommended a drug I was on a couple years ago. I was positive for JC virus and taken off it.

Concept is cool but execution is weak

Johnita23 profile image
Johnita23

Read,research, call groups, talk to uour dr

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