Last reply 6 days ago
DMTs

Hello , I have recently been diagnosed with RRMS and I am 50 years old. My symptoms at the moment are a bit of weakness in my left leg. Prior to this in the last month or so I have had face pain. My last episode before the last couple of months was 7 years ago when I had optic neuritis. I have been symptom free in between and in fact I was told I had clinically isolated syndrome until my diagnosis in October. So I’m currently waiting for a letter from my neurologist on DMTs. My MS nurse has emailed me a list of the drugs he has recommended. They are: Alemtuzumab, Cladribine, Fingolimod, Ocrelizumab or Tecfidera.
Reading the info on these has made me feel panicked to say the least. The side effects seem worse than my symptoms! So I was wondering if anyone can offer any reassurance /experience on any of these drugs. Also has anyone had any success with keeping well through diet? I have been doing the OMS diet for the last fortnight. ( No land animals or dairy has been consumed) Thankyou in advance for any replies 🙂

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stumbler
1 week ago

Hi @octavia . The Disease Modifying Therapies (DMTs) are powerful drugs and can have side effects. But, these side effects have to be balanced against the serious effects that MS can cause.

Your diagnosis is still fresh in your mind so you should take your time with any decisions.

You can find previous conversations on most of the drugs offered and the dietary approach by following the links that have been automatically added to the bottom of your post above.

There isn’t a link for Cladribine/Mavenclad available yet as it’s fairly new. Use the Forum Search function (magnifying glass, top left) to search for related discussions.

Hope this helps


grandma
1 week ago

@octavia hi and welcome, glad you found us so soon. I’m one of the old codgers, had the beast for 26 years, am 62 and currently on Tecfidera. There are lots of discussions on this site about all the drugs you’ve listed. Use the magnifying glass top left and put in each one and get all the info, gossip, symptoms etc on each. It’s a very subjective subject, and at the end of the day it’s your decision, but hey, compared to 25 years there was no dmt’s, and when the first came out (which I got having been on the original trial) I didn’t change until 10mths ago due to reduced efficacy. But I digress, we’re all ok on the site, loads of info if required. Always here for a natter, a moan, a celebration, a cry, whatever you want. We don’t judge, can even be amusing on occasion, but the one thing to remember is that with ms there’s no such thing as a silly question! Look forward to talking to you again. By the way, we have a guru, Stumbler by name, he’ll be along shortly to say hello, font if all knowledge, and nice with it.😍


mlgilber1
1 week ago

Hey!

I’m on Ocrevus and it’s been amazing so far. It’s only been a couple months, but already quite a few of my symptoms have lessened tremendously or disappeared and I had a ton of symptoms because they said my MS was aggressive. I was on Tecfidera, but only for a short time so I’m not sure if it helped. I did experience quite a few of the side effects for that one. I have not really changed my diet, but I do try to eat healthy and take vitamins. I know choosing whether or not to do a DMT and which one can be quite difficult and overwhelming. Best of luck!


dominics
1 week ago

@octavia – the requirements for listing side-effects on a drug data sheet are complex and many of them can appear very worrying.

The question to ask your neuro is the incidence of these expressed as 1/100, 1/ 1000 or 1/10000. If two people on the trial were hit and killed by big red buses that needs to be listed as a less serious side-effect (attraction to large red moving objects). It may have nothing whatsoever to do with the medication but any death of someone one a trial, howsoever caused, needs to be recorded.

I am using a fictitious example to illustrate the point above. You also want to examine any risk in a risk/reward context. How effective is the drug versus how likely is it to harm you? If you have traveled anywhere by car in the last 10 years you will have been exposed to far higher overall risk of death or serious injury than taking a well-regulated and closely monitored DMT therapy.

It is about perspective. Good luck and better to do something than nothing!


octavia
1 week ago

@dominics @mlgilber1 @grandma @stumbler
Thankyou so much for your responses. I will have a look around the site with a handy notebook and pen in hand 🙂


cameron
1 week ago

I’ve been on fingolimod for three years and, quite honestly, it’s been a non-event. A capsule taken with your breakfast, two clinic visits annually to the MS nurse to take bloods, blood pressure and for general monitoring of how you’re doing plus an annual MRI. Starting the drug is a separate process involving a day in hospital: the very first capsule you take temporarily alters your heartbeat but it soon reverts to normal. While this happens, they keep you on a monitor and keep checking blood pressure. All you do in the meantime is sit around and chat to the other MSers who are also starting the drug. It takes the best part of the day, because there are also forms and questionnaires to fill in and you have to collect your hospital prescription. The drug is dispensed through the hospital, not your local pharmacist. Each prescription is for six months and is issued on the basis that your blood test is normal (hence the need for the twice-yearly monitoring). You can be reassured by this because the tests will show any adverse effects of the drug. These are rare in any case, but if the tests showed that (for example) liver function was affected, you’d immediately be contacted and the team would decide whether you should change drug. I believe the cost of each capsule is over £50, so your neuro team and the NHS have to be certain that it’s the right choice ! xx


nutshell88
1 week ago

I was daignosed ahe 17 2005 refused all treatments untill last month i began taking Fingolimod
I refused drugs all this time becsuse i didnt want to feel more fatigue besides dont get many relapses and not disabled
Now im 31 yrs old and i hope this treatment never cause me any harm

They are all a bit evil all these drugs buts they are all we know


vixen
1 week ago

Hi @octavia, not much to add to the advice above,except to say that I am in your age group and was diagnosed last year by surprise, so I understand how alarming things will be. 18 months down the line, some positives have emerged from the changes brought about through diagnosis, so keep your spirits up! Lots of help and support here for you x


maureena
1 week ago

Hi @octovia we sound very similar except I have diagnosis if cis. I had optic neuritis around 3 yrs ago and have had pins n needles on face and lips and arm numbness the last month or so. I have intermittent leg weakness also. I hope you find what drug suits you, you will get good advice on this site. Can I also ask you did you have another mri before diagnosis and were there any changes? Hope your keeping well x


octavia
1 week ago

@maureena Hi, yes I had another mri in September. It showed I had a few more lesions on the left side of my brain and 3 in my spinal cord although my cord was not scanned back in 2011 so don’t know if those lesions are new. I am mostly ok apart from leg weakness in left leg and a bit of face pain a month or so ago. I’m trying to weigh up drug options at the moment but I’m scared about the side effects . I would rather treat it through diet but I don’t know enough about the whole thing. I would rather give up meat and dairy etc but don’t know if I’m kidding myself that would work. Still waiting to hear from neurologist post diagnosis on 22nd Oct xx


cameron
1 week ago

@octavia, re: diet – as my neurologist said not long after I was diagnosed: ‘if diet could cure MS, I’d have far fewer patients in my clinics’. That’s not to underestimate how important it is to have a good diet, but it’s not the full picture (IMO). xx


octavia
6 days ago

@cameron i think you are right. I have my next appointment on 26th November. My MS nurse is going to send me all the info on the different drugs ( i’ve already read the stuff online ) Has fingolimod had any effect on your number of lesions and relapses ? Many Thanks 🙂


cameron
6 days ago

Quote from the neurologist’s letter of July this year: ‘Her annual MRI in May showed no lesions confirming that she is responding to treatment’. Quote from MS nurse’s latest report:’ She is now unable to recall when her last relapse was’. xxK


octavia
6 days ago

@cameron , thanks x

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