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highlander
2 months ago

@dani316
Hi welcome to the club.
I had the same dilemma as you so I’ll give a brief list of frequently usedf abbreviations.
DMD Disease Modifying Drug
Dx diagnosis
Sfx Side effect
Hope this helps a bit ask anything we’ll find an answer somehow.
Keep smiling


smack
2 months ago

DMD is a disease modifying drug
DMT is a disease modifying therapy

So basically it is just semantics.
Copaxone is a DMD by itself as well as all other approved medications.
Being prescribed one of the DMDs is a DMT to treat MS


highlander
2 months ago

@dani316
DMT Disease Modifying Therapy another name for DMD.
Under your post you’ll see some boxes that will take you to reference other posts about the subject.


vixen
2 months ago

Hello @dani316, welcome, there are lots of Teccies on here. And lucky you, living in Florida, us UK Shifters live a life of lots of grey and cold!


dani316
2 months ago

Thanks so much to everyone! This has made reading posts a whole lot easier.


dani316
2 months ago

@highlander @smack @vixen I now realize that if I don’t mention you in a post you won’t see it. I’m still figuring out how this system works. I thank you all for answering my question. It definitely makes reading certain posts a lot easier.


highlander
2 months ago

@dani316
No worries, I was where you are a year ago. And believe you me I was way more confused about this typing malarkey than you.
I’ve even learnt how to do this
😆On this site…how clever am I!


us-emma
2 months ago

Some people may use DMT to refer to the ‘induction therapies” like Lemtrada, HSCT that have the possibility of putting your MS into permanent or long term remission.

They are Therapies because they are given for only a few days but last many years.

In contrast, a DMD nearly always refers to shots/IVs or oral medication taken daily, monthly or weekly.

All, in theory, modify MS disease so could all be lumped into the DMD heading. When someone uses DMT they may be speaking of specific agents with different goals, or using the term more loosely.

BTW- if you are newly diagnosed and/or younger than 30 or 35 or desire a family I recommend looking seriously into treatment with Lemtrada. HSCT may be equivalently effective- or even bettter- but it is still in study in most countries.

I had Lemtrada at age nearly 40 and it was very effective initially- I was one of the fortunate ones who experienced improvement to nearly all my MS symptoms- nearly 100% reversal- but after 5 years those gains are regressing a bit. The problem is that by age 40 I had already lost considerable brain to MS (aka compensatory mechanisisms). This is why it is Most effective in the newly diagnosed or young.

That being said- Many people over 40, 50, and 60 have received Lemtrada- it was the first approved agent to offer us anything close to a cure. We are not there yet for everyone but young people who take Lemtrada May live their whole lives thinking ‘this MS thing isn’t so bad’.

I was just late to the party! 😉


stumbler
2 months ago

@us-emma , it’s nice to hear from you again, although I’m sorry to hear that things are regressing for you. But, there’s been five years enjoying a good life in between, which must have been a bonus.

But, you’re not done yet. Far from it. You’ve still got a lot of brain left. 😉


dominics
2 months ago

@dani316 – nothing is a silly question. Your challenge is staying n top of all of this torrent of new stuff! Ask Away.

I’ll chip in a few that I know that can puzzle people.

Rx = is shorthand for ‘Prescribe’ or ‘Prescribed’

Sometimes people use the generic – scientific names for drugs – and not the brand names. Here are a few of what’s what. Not an exhaustive list.

Ocrelizumab – Ocrevus
Alemtuzumab – Lemtrada
HSCT – Stem Cell replacement – the heavy duty version!
Dimethyl Fumarate – Tecfidera
Beta-interferon – Rebif
Glatiramer Acetate – Copaxone
Ocrevus or Lemtrada are the usual infusion candidates.
Prednisolone/Prednisone or methylprednisolone – Usually the steroids that may be used to treat a relapse or settle things pre-infusion.

Not a drug but tied in with some of them – Venflon – (UK I think) is just the name for the cannula if you are having an infusion. The sort of valve dohickey they attach to your arm when they have to keep putting stuff in.

Bloods – there are many but the following are ones you may see or hear about.

FBC = Full Blood Count
LFT = Liver Function test
LDL/HDL – Low Density Lipids or High Density Lipids = Cholesterol

BP = Blood Pressure – For example 120/80 (S/D)
Systolic (the higher squeezing bit) and Diastolic (the lower number when the heart is relaxed)

MRI = Magnetic Resonance Image the big tube they feed you into and it cracks, buzzes and thumps taking detailed images of your head and spine.
FMRI = Functional MRI is usually more powerful and is used for research.
Tesla – not the car but the value used to indicate the power of the magnets in the MRI

Neither is remotely harmful – have as many as you like!

Gadolinium = a contrast agent that is injected into you prior to an MRI scan. It can help show different types of lesion better. Not considered to be harmful.

CAT = Computer Aided Tomography – not really used for MS. It uses X-rays and a big bit spins around you as you lie there.

ON = Optic neuritis
Diplopia – double vision

Definitely definitely subscribe to the Dr Aaron Boster YouTube channel (he is a specialist in Idaho – has tons of good videos explaining things) Here is one of his videos. https://youtu.be/xMr3wwiC9Jw

Best,

Dominic


shtanto
2 months ago

Also, be aware that there are a small handful of drugs you won’t be told about because they’re so effective and cheap that they sent big pharma’s bottom line r.g. low dose naltrexone or LDN as it’s also known. I’m one of a few people who have taken it successfully. Sometimes you have to do your own research. If you come across Linda Elsegood, you’re on the right track. Bastyr out in Canada had to class it as a food supplement 😉
So long as you’re taking your vitamin D3, you should be fine.


dominics
2 months ago

@shanto – This entire ‘Big Pharma’ narrative is quite a fringe type conspiracy theory and a very damaging one to try and force upon a newly diagnosed and bewildered (I imagine) person.

There is one over-arching reason why drug companies won’t do LDN trials and that is because it would never ever pass medical ethics committees for approval. The reason for this hinges around the fact that LDN advocates try to suggest it as a cure-all for many different things.

The primary dissonance occurs when it is touted as having conflicting properties. See: Blach-Olszewska, Zofia; Leszek, Jerzy (June 2007). “Mechanisms of over-activated innate immune system regulation in autoimmune and neurodegenerative disorders”. Neuropsychiatric Disease and Treatment.

Saying that one will be fine just (by implication?) by taking cholecalciferol (Vit D3) is also erroneous. You don’t suggest a dose. The one study that indicated a possible neuroprotective effect suggested that a minimum level of 4500iU needed to be maintained. I take 10000iU every other day as it maintains a bioavailability level of near enough.

Despite what some people – estimated at 5% – think, there is no conspiracy by big pharma, the illuminati, a secret cabal of powerful elites etc spraying chemtrails, faking moon landings and the like.

Firstly: conspiracies are very difficult things to pull off because people talk. Whilst the drug companies were not lily-white in the seventies they are so heavily regulated and controlled now. This makes the management, collusion, secrecy etc involved nigh on impossible. In the global drugs market, there are more profitable areas to misbehave if one was so inclined.

Can the pharmaceutical companies be counted on to make the right decisions (especially as many people consider what is right is what they want)? Absolutely not. Will some research go unfunded? Almost certainly. Is there a conspiracy, highly unlikely. Is there a valid reason that LDN is not taken seriously except by a fringe? Yes. A scientific one.

Regards,

Dominic


dominics
2 months ago

@shtanto – mispelt ur handle – apols. See above.

On another note – you say you are doing fine. Great to hear. By what objective measure is the progression of your disease being monitored? Brain Volume Loss, MRI (with/without contrast), blood tests looking for markers of progression, etc?


shtanto
2 months ago

Well now that’s me told then 😋 Glad to have you on board.
5000IUs a day for me. And yeah, you’re probably right. I stopped bothering about my MS around about 2017. I don’t monitor anything like that at all. Not sure my neurologist does either. It doesn’t seem important somehow. I don’t get very many support offers. I think I’ve met my current MS nurse about 4 times? Better to seek a self definition in terms that won’t cause depression or something worse. I’ve put 6 people on paths to LDN and they’re all better off with it. MS for me is a great vehicle for making the world a better place. Eventually, over a long enough time line, I found balance. I used to wait for the science and good news from it. As for misinterpretation to thinking that was an ad-hominem, I’m all over that like a rash 😉


nunna56
2 months ago

It looks as though I’ve stumbled into an argument and not one easily won by either side!

Firstly, no two disease courses are the same and as someone “blessed” with this lovely illness for roughly 27 years, I know a thing or two about it. I’ve tried the DMD’s and as for side effects without the benefits, no thanks! As for LDN? You betcha! It’s been more than 5 years now and my balance is better for it along with every other symptom. My neuro agrees and he’s the one writing the script to Skip’s Pharmacy. He’s also Head of Neurology so I suspect I can trust him.

Is it for everyone? Probably not. Is it absolutely worth a try? Why not?


dominics
2 months ago

@nunna56 – if it is an argument then it is technical, not personal. I have had MS for 26y now and am on my fourth DMT so, like you, I feel pretty comfortable speaking from a degree of experience with the condition and a background in pharmaceuticals and now more generally data.

I see you are in the US. It is highly unlikely that there is any (could be wrong) LDN prescribed here as I don’t think it is available in that formulation. My brother worked for many years with full strength Naltrexone (not as a recipient) in drug addiction. Even there it is rarely the first choice.

As an aside – not all Doctors are created equal. Some develop rather interesting takes on things. Primarily because they are human and subject to the same foibles as the rest of us. I’d get a second opinion on any DMT, and I have done barring my first. The thing about a proper trial is it eliminates the possibility of confirmation bias. Recommending to six people on your street that they play the lottery, them doing so and winning is a cluster, not proof. The odds with the UK lottery remain 13 million to 1, regardless.

Finally; with MS we simply are not adequate judges of how we are doing. Everyone is subjective about themselves. The last two years have seen some real leaps forward in understanding and monitoring. I am thrilled that someone feels better. It is the long-term smouldering effect of MS that is so much better understood.

Best,
Dominic


nunna56
2 months ago

Good afternoon @dominic and thank you for the clarification or at any rate, your opinion which I respect by the way.

We are all entitled to our opinion and when it comes to our disease management it is our opinion first and foremost that truly matters.

I appreciate your advice and have had my share of Neurologists throughout the years. I began this journey with Rebif which sent me to the ER in full anaphylaxis. Needless to say, that was discontinued immediately. Next up, Copaxone. The nightly injections of basically water for a sum of then $3500/monthly did nothing for me though I gave it a full two years to convince me.

After much consideration, I decided to give Low Dose Naltrexone a shot as I had nothing to lose with there being virtually zero side effects and a very low cost. After one week I FELT better. After one year my MRI showed no new progression. After five years, still the very same on MRI.

So you see, it’s about far more than simply feeling better; I’m actually doing better. I’m the mother of three grown children ages 33, 30 and 27. I am fortunate to have a spectacular granddaughter age 9 who keeps me on my toes and s the light of my life. Together we swim, garden, ‘shop ’til we drop’, ice skate, bake and cook. Basically, I can still do just about anything one could want to do. While I’ve had to give up downhill skiing I can still cross country.

My husband of 33 years and I still enjoy dining out a few times weekly and dancing is not out of the ordinary for us on occasion. In short, we enjoy a full life despite and regardless of my illness.

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