Last reply 4 days ago
Recent Diagnosis – DMTs

Hello, so this week I have my second opinion from a consultant and been diagnosed with RRMS. I am 29 and currently have symptoms of pins and needles in both legs and random spasticity that come and goes in my calfs, feet and around my waste line.
At the beginning of this relapse I had the occasional struggle to find words, dizziness and miss placing my feet. During a 5 day course of steroids I went down hill and got to the point where I was fighting to walk with the accompaniment of bladder issues.
The other 2 relapses they are counting were visual and lasted a week in late 2016(nystagmus) and a few days early this year(slow vision in one eye).
My Neuro is recommending either Ocrevus or Lemtrada. I am having a really tough time making this decision. I have lead a relatively stressful life up to now being self employed since 2009, although sometimes I feel like I’m programmed to stress/worry.
It’s great that something that appears as successful as Lemtrada is available to me but the odds on the side affects are massively putting me off, leading me down the path of denial. I was setting myself up to be offered injections or tablets if I was lucky.
I am not a gambling man and this is a gamble all ways round it seems and worries me further that I am a smoker with the classic cough and occasional chest pains that I will be more susceptible to things going wrong if I have treatment.

Appreciate any opinions and advise

Thanks

Phil

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


highlander
6 days ago

Hi @phillip_dark
Welcome to the club.
If you look under your post you’ll see a list of some answers to your questions just click on the box it’ll open up previous posts that other’s have asked similar questions.
I’m sure the more enlightened members will be along to say hi shortly.
Coming from a similar back ground as to work one thing I’ll advise is avoid stress it really don’t help it makes things worse.
Keep smiling.


stumbler
6 days ago

@phillip_dark , Disease Modifying Therapies (DMTs) are powerful medicines, which are needed for a medical condition that can have a powerful impact.

You can check what others have been saying by selecting the Lemtrada or Ocrevus links, which have been automatically added to the bottom of your post above.

A rule-of-thumb with MS is to lead a healthy lifestyle, with a healthy, balanced diet. Now your love affair with both tobacco and stress are extremely counter to this advice. There’s no arguments regarding tobacco, but there are different types of stress. Some forms of stress enliven us, but other release bad chemicals in our brain that are detrimental to our Central Nervous System (CNS). It is this latter form of stress which we need to avoid.

I’m not going to tell you what to do, I’ll leave you to make your own judgements about tobacco and stress. 😉


marwa_alzemei
6 days ago

We are on the same boat!!

I’m 29. I have diagnosed with RRMS and had 2 relapses quite similar to yours. The second one was last month. Thankfully, now all the symptoms gone after taking Benzodiazepines and Steroids.

My Dr asked me to choose between Ocrevus or Stem cell !! I haven’t decided yet. I have low immune by nature due to stress but generally I have healthy lifestyle and diet. I have never drink of smoke.

I appreciate your opinion too..


grandma
6 days ago

@marwa_alzemei How lucky that you’ve been offered Stem cell straightaway. We have to fight and either have a lot of money or be prepared to battle your way up the list. Good luck with your decision😍


dominics
6 days ago

If I was offered the choice of Lemtrada or Ocrevus I’d bite their hand off for Ocrevus.

As the Doc what their view on the relative saftey profiles and efficacy are.

Good luck.


grandma
6 days ago

Hi @philip_dark and welcome I’m one of the old codgers, had the beast for 26 years. Stress is one ofvthe worst things for ms, so that won’t be helping with the relapse situation . Anyway we’re always here for a natter, a moan, a rant, a cry,,a celebration whatever you want. I’m on Tecfidera and before that Avonex so can’t help with the drugs but remember with ms there is no such thing as a silly question, there will be someone on this site with the answer.😍


mlgilber1
6 days ago

Hey @phillip_dark! I was having super bad symptoms and relapses within a short amount of time and now I’m on Ocrevus because they said my MS was aggressive. I’m also a smoker, but working on quitting. I love Ocrevus so far and it’s only been about 2 months. A lot of my symptoms have lessened tremendously or even disappeared. My energy is back and less fatigue. Better memory, less pain and spasticity, not as nauseous anymore, walking is back to normal (don’t need my walker anymore), my legs feel almost normal when they were numb and tingly for over a year prior! And my bladder issues are pretty much gone. I am super thankful. I wish you the best of luck with whatever you decide to do. I know the side effects for all DMTs can be scary. Good luck!


nawal_ibrahim
6 days ago

Hey there,
I am 20yrs old and have taken Lemtrada so I can only give advice on that but it mainly depends on the question of whether you are willing to have blood tests taken every single month?
This treatment hadn’t helped me but no two msers are the same but.
I hope the comments do help you come to a decision.


phillip_dark
5 days ago

Thanks everyone. Good to know your all here to talk to. @stumbler I wouldn’t call it a love affair, just a built lifestyle that I wish was different, no good wishing though. Need to find the strength to sort it out.
@marwa_alzemei interesting to get stem cell offered. I wonder why they didn’t offer you lemtrada. I was told stem cell was a 3rd line treatment.
@dominics why so against the Lemtrada? Worries me how new Ocrevus is in some ways.


vixen
5 days ago

Hi @phillip_dark, sorry you’re going through all this. But as you can see, most of us here have had to face the same. I can’t contribute as I’m on Tecfidera. But I would say that as Ocrevus is pretty much new on the scene, the comments about Lemtrada might come over as being cautionary simply because there is more experience of it compared to Ocrevus. The toughest thing about making decisions, is that there will never be one size fits all. I went for Tec purely because it suits my lifestyle totally, not necessarily based on efficacy. The good news is that you do have a wide choice; twenty years ago, these options weren’t there. I hope you enjoy this site, there’s such a wealth of info, opinions and advice here. Also lots of people around your age too, so you’re not alone! X


marwa_alzemei
5 days ago

Hi @philip_dark

I asked my professor why the stem cell treatment offered for me !! bcz I thought it should be only for people who are really suffering from the disease and already tried different types of DMT !!
He told me that I have a very active type as I went through 2 relapses within one year, young and healthy, so I can get a superior benefit.
Actually, it is a very hard choice starting from the chemotherapy, being in isolation for a couple of months and around a year to go back to your normal life.

I asked about Lamtrada as well and he said I can think about it but I felt he was more toward Ocrevus as it was my first option he offered.

Really it is difficult to decide, specially I’m living like a single mom and doing my postgraduate studies away from my family now.


dominics
4 days ago

Ocrevus is a drug that existed and is very well tested. It would be 20y of testing for safety and efficacy before it was approved. No prescription drug is new in that sense.

I think the link will work. The incidence of side effects and the severity as a frequency is the important thing. Compare it to car accidents and think about how gruesomely the injuries sustained in a collision could be and it sounds more alarming. Then think that your overall risk is probably higher during the drive to the hospital!

ocrelizumab – FDA
PDFhttps://www.accessdata.fda.gov › label


dominics
4 days ago

Not 20, fat thumbs! I meant circa 10.


stumbler
4 days ago

@dominics , I couldn’t crack your link. There’s a few PDFs about Ocrelizumab on the accessdata.fda.gov website……… 😕


dominics
4 days ago

stumbler
4 days ago

@dominics , thanks, that works a lot better. 🙂

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.