Last reply 6 years ago
DMD's decisions decisions

Hi guys. I am a newbe. I have had a clinically isolated syndrome early this year and my MRI shows both acute and chronic lesions.Still not yet diagnosed with ms but think it is only time. I am coping fairly well with this as i have a great boyfirend supporting me every step of the way and the neurologist i see has a special interest in ms and has been great.
I meet criteria to start DMD’s. I have looked at the ms decision making website and when it come to the practicalities Avonex comes out on top then when i read some reviews in the Cochrane library i am swaying more towards betaferon with the study results. With reading around it may take a little bit of trial and error to find the treatment that is most effective for you.
Has anyone any advice? Any information would be welcomed.
Thanks Trace

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stumbler
6 years ago

Trace, it’s good that DMDs are being considered at this stage. It’s very much a case of deciding which DMD seems to fit your lifestyle.
You’ve looked at the MS Decisions website, so you know the pros and cons of each. Try the one that seems to fit you the best and see how it goes – you can always change if it’s problematic.
Good luck.


chueykooh
6 years ago

Hello and welcome Trace. DMD choice with the CRAB drugs is totally dependent on what side effects you want to deal with. They’re efficacy is pretty much the same as far as relapse rate, about 30%. Interferon drugs such as Avonex, Rebif, and Betasteron all have flu like symptoms as their main side effect, Copaxone dubbed an “immune modulator” doesn’t have flu like symptoms but does have injection site reactions. Copaxone is a daily shot and the others are every other day, every 3 days or once a week depending on which one you choose. You are right about the trial and error, some people respond better to certain drugs, while others might respond better to the other drugs. You will have to decide what side effects you can handle and how often you can handle giving yourself the shot. They all work the same though as far as effectiveness. There are new oral drugs that have far superior results and far fewer side effects that are just waiting for approval like BG12. I do recommend starting therapy in the early stages of the disease as research has shown very positive results for early treatment. I am on Copaxone and LDN now, but I waited almost a decade before starting any therapy, probably not a good idea looking back 🙂 The more research you do the more confusing it can get sometimes. Some people swear by Copaxone while others swear by Betasteron while others insist on LDN, and some want Tysabri. The maze is never ending it seems. I spent the first few years after being diagnosed trying to figure out which was best, back then there was only a couple choices. I finally gave up trying to decide and used Johnny Walker as a cure all 🙂 Your choice is personal and the information on the internet is endless, good luck on your decision, and if I can help in any way you can always message me with any questions or post here and everybody here are very helpful. Rob


chueykooh
6 years ago

Stumbler just summed it up in a short response while I was writing my essay. Yeah, what he said 🙂


trace75
6 years ago

Thanks for the replies and advice. Should just put all the names in a hat and pick one. Hopefully will be starting end august/sept. Watch this space …..


boodle06
6 years ago

Hi trace,
I’m new on here as well, sorry to hear about what your going through.
I had much the same myself last nov but not given offer of treatment yet, my right hand & wrist became disabled.
I’m glad your getting help & have a good neurologist.
Do you mind if i ask what happened to you?


trace75
6 years ago

Hi Boodle06, my trouble started late December last year. I started to feel ‘woozey’ just after christmas (and it wasn’t the mulled wine). I then got vertigo and treatment didn’t help. Double vision set in and a week later a facial palsy. I also had reduce sensation of my skin on the right side (thought that was maybe a side effect of the tablets i was given) My GP sent me to A&E to rule a stroke. I was sent for a CT scan that was clear. The consultant in A&E referred me then for an MRI scan and to neurology. He mentioned the double vision could be a symptom of MS (thats when things got scary!!)
Had my MRI that showed demylination both acute and chronic but because it is my first episode they are not diagnosing MS as yet. I had numbness of my skin in the past but never looked into it as i thought it was nothing.
I didn’t think i was going to get treatment as i met 2 out of 4 of the criteria used by my neurologist but after a multi-disiplinary meeting with the radiographer they felt i met 3 out of the 4 criteria. I was then offered treatment and thought i should give it a go in the hope of stalling any new activity. i am now on the 13 week waiting list and trying to decide what treatment to start.
Are you under review with a neurologist? Have they discussed treatment with you? Are you back to full health now?

It is great to have support in sites like this one.

Trace


boodle06
6 years ago

What is the 13 wk waiting list about? I haven’t had any problems with vision or numbness yet, it was my right hand & wrist that slowly became disabled, also had problems getting my words out @ the time & lost co ordination in my hands when typing on the keyboard, this all happened after I had a virus. I was left with 2 lesions on my brain & neuro said treatment was not required cause it got better on it’s own. My neuro has now discharged me bk to my doctor. Since then i have suffered from alot of anxiety, but since the end of may i have had problems with my speech again & really bad lower back pain, which is also in my legs which causes spasms. I have been to the doctors I don’t know how many times and they are finally writing to my neuro again and asking for another scan. Are you physically feeling any better? I hope all goes well for you.


trace75
6 years ago

There is a 13 week waiting list in my hospital trust to start DMD. Yes i am feeling well apart from a few aches and pains in my arms and legs. Nothing i need pain relief for.
It would be worth while asking if there is an MS specialist neurologist in you local hospital. Have they diagnosed a clinically isolated syndrome (CIS)in your case? If they have there is evidence out there that starting treatment can slow the disease process and lengthen the time to any relapse. I know i read up on CIS on the ms trust website and i brought up the subject of starting treatment. Worthwhile discussing it with your neuro. Hope you get seen again soon and get some relief of symptoms.


justdave
6 years ago

Hi Trace

I’m in a similar position, in that I need to start thinking about dmd choices. I was diagnosed with ms last week, and have just finished a course of steroids with a view to kicking me into remission ( though nothing’s happening yet) I also have to wait 13 weeks before I’ll be considered for dmd’s, though I think that the reason for that is that they need to find out if I have RRMS or ppms first….

The more I look, the more confusing it gets, but at the moment, I’m erring towards copaxone – I just don’t fancy the massive needle with avonex, or the flu/depression that seem to come with the interferons.

Gilenya looks great, but I’m not sure that’s even an option…??

Anyway, I wish you well with whatever you choose.

Good luck

Dave


trace75
6 years ago

Hopefully you will feel the benefit of the steroids. they are rough to take i only slept 2 of the 7 nights i was on them. I think everyone from the hospital trust i attend have to wait 13 weeks (northern ireland). I know if i went for avonex i would want the auto-injector so i wouldn’t see the needle! You have probably read this but some of the guidelines (NICE)want patients to have been on an interferon for 1 year before they are concidered for a second line therapy.
Hopefully it will be rrms (lesser of 2 evils). Good luck with your choices. Hopefully whatever you choose will be the treatment to reduce relaspses. Take care, Trace


justdave
6 years ago

Yeah, I was the same with the steroids. They’re rough alright! I see now why I have to wait 13 weeks too – I’m also in norn iron!! (neurologist based at c’avon)Didn’t know about the NICE recommendations re interferons first, that’s a bit of a bummer.
Ah well onwards, ever onwards
Take care
Dave


kiddiecarlos
6 years ago

@justdave: I was diagnosed last December. I did 3 days of steroid ivs with no improvement. Gilenya is an option. That’s the route I chose and its worth considering as the side effects aren’t that bad. Good luck in your decisions!

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