Last reply 3 days ago
Disease Modifying Treatments

I had my diagnosis of clinically definite MS on the 28th June 2019. I was told about the treatments and I just wanted to get an idea of what other people think about them as I am quite oblivious and honestly I am tired of taking pills all the time, are the injections any better? I just dont know, head is a little baffled after the diagnosis. Thanks in advance!

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mightystrongms
2 weeks ago

My DMT is Ocrevus. Have been on this since DX and am preparing for round #6 in November. So far so good. It’s help me regain my sight after being completely blind for over 8 months from Optic Neuritis due to PPMS.
I haven’t had any major side effect issues with the infusions. And I’ve been keeping up with good nutrition habits and also an MS fitness regimen thats really been helpful lately with my balance and such.
The Cog Fog still exists (bubble moments) lol…but, work a full-time job to help combat that. I wish you the best in your choice of medicine in this MS Journey. 🧡🧡 Don’t forget…You are an MS Warrior🧡🧡


dominics
2 weeks ago

Screw the jabs and the pills, been there! Ocrelizumab (Ocrevus) is a 6 monthly infusion.

One of the best treatments available for MS.


stumbler
2 weeks ago

Hi @ettelrahs and welcome.

The latest thinking is to hit MS “hard and fast” with the most effective treatments. If your neurologist is not persuading you down this path, you need to ask why. 😉


ettelrahs
2 weeks ago

@mightystrongms & @dominics – my ms team do not offer the infusions. They are only offering the 2 tablet treatments (Abubagio/Tecfidera) and 4 injections (Avonex/Plegridy/Rebuild/Copaxone). The nurse crossed out all the ones they don’t do. I was told that patients tend to opt for ‘Copaxone’. I have so much reading to do but I don’t think it’s sunk in yet D:


ettelrahs
2 weeks ago

@stumbler – you are the second person to say this to me and now my mind is changing. I was hesitant at first but the more I’m listening to people, the more I am leaning towards it.


stumbler
2 weeks ago

@ettelrahs , all Disease Modifying Therapies (DMTs) are available on the NHS.

I believe your team are saying we “won’t” do certain treatments, not “don’t”. If so, ask them why. If that’s still the case, you need a team that will do all the DMTs.

There is no point in taking less efficient DMTs, awaiting to accumulate life-long MS damage before you move up to a more efficient treatment. Hence the new way of thinking.


niccis
2 weeks ago

Think about your lifestyle too – I was lucky to see a new consultant on Friday who actually took the time to listen to what I had to say with regard to treatment options. I don’t want to do injections and have tried all the available oral medications but had to stop them all for various health reasons. Next one to try was Tysabri but monthly infusions is just not going to work for me – I work full time, albeit with one day working from home, and don’t have time to spend a day every month traipsing to hospital and back for an infusion. She’s going to wait on my MRI results and then we’ll make a decision, but it’s important that you remember it’s your decision to make! And that factors such as finding something that fits with your lifestyle are just as important to your mental health as finding a treatment that suits your body is for your physical health. Good luck!


andy1878
2 weeks ago

Hi @ettelrahs,

I was diagnosed in October 18 following the onset of symptoms in the previous June. Having lived a carefree normal life for the previous 36 years it’s fair to say it came as a bit of a shock so I understand why you’re feeling overwhelmed.

With regard to DMTs I was offered the top tier treatments following an MRI scan which showed contrast enhanced lesions and the presence of oligoclonal bands in my lumber puncture results. If I didn’t have these two markers I may not have qualified for the more effective DMTs. However, my local hospital does seem to be forward thinking and subscribe to the “hit it hard and early” approach mentioned by @stumbler above.

In the end I went with Lemtrada. Despite the potential side effects of the treatment, I felt that MS was a known enemy which could have a negative impact on my life if left unchecked. With that in mind I went for the strongest treatment available which would have minimal impact on my lifestyle and I don’t regret it. It gives me a better chance of managing MS for longer and six months following the first round of treatment I feel as fit and able as I have ever been.

There is a lot of new information to take in following diagnosis and forums like this are useful for touching base with others out there who have been through the same process. Good luck and feel free to fire back any questions.


dominics
2 weeks ago

Your nurse is steering you to Copaxone??? Unbelievable.

Hit hard, hit early to reduce the long term damage.

Lemtrada, Ocrrelizumab, Cladribine etc. Not a 30y old drug.

Infusion ought not to be a thing. Really. A major hospital ought to be doing them as a matter of course.


mamawals
2 weeks ago

That doesn’t sound like a good team if they’re not prescribing the most effective DMTs. Ocrevus and Tysabri are very effective infusion treatments. They should be offering them. If not, then find a neurologist that does.


dominics
2 weeks ago


ettelrahs
2 weeks ago

@stumbler – my neurologist did not seem that keen on taking the step towards DMTs. That’s what made me feel a little unsure, cos I was thinking, if it’s bad enough, surely they would advise you to consider them. That wasn’t the vibe I got at all. Maybe I need to ask a few more questions to my specialist team when my next appointment comes around.

@niccis – I completely get your thinking. I think any time I’m told there are treatments, I dread to think how my body with react. I do not currently work, when I did, I struggled, but I have other conditions to contend with besides MS – they all tend to negatively mingle. This year I have made a lot of changes, especially when it comes to my mental wellbeing, I try live as independently as possible and also consume a balanced diet with light exercise. I know this is my decision at the end of the day but I don’t feel equipped enough to make a decision, and I don’t want to go into something off of someone elses’ preference, meaning the nurses as they are meant to advise you but at the end of the day, they can be a little bias by projecting what they believe.

@andy1878 – I’ve only ever been referred for MRIs, never offered any other form of testing, not sure why for that matter. I have felt a little drained by the specialist team I am under as I feel like they are “half arsed” and aren’t really giving me the bigger picture, tend to lock horns a great deal. I am just appreciative of this social forum as I would have just completely been oblivious to anything that could potentially happen or what is out there. Thank you!

@dominics – yeah she made it clear that people tend to opt for that one, especially females. I didn’t really understand and I don’t want to just roll over and take what they say as fact. One size doesn’t fit all at the end of the day, what may work for one person, may not work for someone else. I didn’t realise it was a 30 year old drug. One thing I can say, the nurses are not leading me towards the ‘Most effective’ treatments, just the one and then rest are moderately effective. So that in my head is telling me “what is the point of taking them at all’, if you get me. It’s frustrating!

@mamawals – they’re all I know, I never really questioned why not as it was all a little bit shocking, went right over my head. I think I will look into why they are saying they don’t offer it. Because at the end of the day, it is definitely a choice and a choice I should be able to make regardless of what they think they do or “don’t” offer. I am one of those people who asks all the questions, I will do that when my DMT appointment comes around. Thanks!


diva40
1 week ago

@ettelrahs hi I’m on Gilenya and have been for 3 years. I’ve had very little issues. Hope that helps. It’s 1 tablet a day and it says the days on the tablets which helps. When I started it, after taking my first one I had to be attached to an ecg to check my heart which was fine 😊 for 6 hours. Otherwise no worries x


dominics
1 week ago

Was talking to a research nurse today. I told them the, ‘most opt for Copaxone’ and ‘we don’t do infusions here’ remarks. They were flabbergasted. Said nurse also does NHS work too.

Opinion was that you need to be givern options. But you need leadership too.

There is a massive study starting in the UK to give a definitive one and for all answer to the softly softly versus smash it hard approach that is becoming the norm.

The underlying driver now is brain health. The idea being that the more effective DMTs give better results for brain health, a long term issue.

http://www.msbrainhealth.org/


ettelrahs
1 week ago

@diva40 – you are another individual who is on the more/highly effective treatments that I am not being offered. Was this medication offered to you straight away from DX? I am only being offered the moderately effective treatments and in my head I do not think its worth the hassle for 30%.

@dominics – you are so thorough, thank you for this. In my heart I knew something wasn’t right, as I don’t feel offering me the 30% effective treatments and the one 50% effective treatment is worth it. Everyone replying to my post is saying that they are on the higher treatments and my question is why am I not able to get that? I am going to make note of a few questions so I can grill the team at my next appointment. I don’t wanna be taking something for the sake of taking it when I know for a fact I can have something a lot more sustainable.


rae87
1 week ago

I was only offered first line treatment so injections or one of the tablets. I was told that they wouldn’t consider letting me have anything more effective unless there was more activity. I decided on copaxone because ideally my husband and I would like more children and seemed to have less side effects.
After reading all of this I’m wondering if there’s even any point in taking it 😪


ettelrahs
1 week ago

@rae87 our situation sounds quite similar, I have too been directed towards copaxone and honestly I’m slightly concerned at the fact they push with ‘ possible pregnancy’ in mind rather than pushing for more effective treatment that could increasingly prevent further relapses. The booklet I have on the DMTs there are ones that are within the highly effective criteria that do not say that they affect fertility. I’ve also read that women after birth with MS are more susceptible to relapses. So to give you the 30% effective tablet/injection over one that could give you a 70% better chance at lowering your probability of relapse, during and after your pregnancy is quite frankly bizarre to me.

I think its one to question and frankly for me, i’m going into this as its either the highly effective treatments or nothing or all. Like @dominics said, better to hit it hard and fast.


dominics
1 week ago

Can I ask what hospital you are at and who the consultant is?


dominics
1 week ago

@caseyxo – this!


ettelrahs
1 week ago

@dominics if you mean me, xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx.


ettelrahs
1 week ago

@dominics Professor xxxxx is my consultant, but shes on research break and I was seen by Dr xxxx xxxxxxxxxx, he is standing in. He didn’t push the idea of starting treatment and it was the nurses that said they didn’t offer the highly effective treatments.

 

I’m no legal eagle, but by continuing to name names and places and suggesting less than good practice, we may be straying into the realms of Libel – Admin (Stumbler)


dominics
1 week ago

@etyelrajs, I did. I am crashing a service provision meeting for the UK next week. One of the themes is the standard and consistency of care across the UK. Mixed messages etc. Interesting to see who is from where 🙂


blagaman182
1 week ago

Interesting you say this as I was only offered injections or tablets. I’m starting plegridy on Monday. My drug nurse said the other staff was for more advanced ms. 🧐


stoylie
1 week ago

I also was told that I could only have self administered injections to begin with, as this definitely wasn’t for me i was told i could wait and see if there was any more activity. A year later there were new lesions so I was told I could have a choice between aubagio, tecfidera or ocrevus. So I have therefore only just started on Tecfidera. Which quite frankly has made me feel like I have MS for the first time.


rae87
1 week ago

@blagaman182 that’s what I was told too. I went to a treatment discussion and shown the treatments available to me (first line)
I asked about other treatments or even stem cell treatment and was told they’d only be offered if the first line don’t work.
I felt confident about my treatment, but now I’m not so sure 😪


lukezni
1 week ago

After 2 MRIs i was offered ocrevus, lemtrada and tysabri right away, and I received my first 300 dose of Ocrevus yesterday after a short 4 month wait compared to others who have been been waiting a lot longer than me, I guess I just got lucky and I’m extremely thankful. I hope use get offered the highly rated treatment, keep pushing for it!!


ettelrahs
1 week ago

@dominics ah thats cool, I got into trouble for name dropping unfortunately haha D:

@lukezni / @blagaman182 / rae87 / @stoylie – what my issue is, if they know there is a 30% prevention, why not go for the higher treatments. I don’t want to wait around and see if these 30% effective treatments will work, obviously the only way that you would know, is if you then had a further relapse. In my heart I don’t wanna take the chance, I’d rather go into it with the 70% effective treatments. It shouldn’t take for us to have another few episodes before they think about offering the higher prevention.

Sorry pretty riled because my body is my own and at the end of the day if there is something I can do that is going to have a higher chance of helping me, I want to take it.


blagaman182
1 week ago

I think it’s probably 80% the cost of it and maybe 20% side effects? As in in there thinking if your ms isn’t currently that bad they don’t want to risk giving you something that could make you feel worse? I will be contacting my nurse tomorrow asking the question.


wobbleone
1 week ago

I was told by my neurologist that despite being diagnosed RRMS I wasn’t eligible for DMT because of my relapse frequency. The Ms nurse said ridiculous, of course you are you have RRMS. She then back tracked to say he’s getting the “flavour of your ms” and that I really don’t want to have a max efficacy drug of only 30% at this stage ???

I am taking in all the discussions here with great interest for my next consultation.


ettelrahs
1 week ago

@blagaman182 – I’m at a point where I am constantly in pain with the symptoms from previous relapses, surely there is something better than this at least? I just can’t comprehend 30% over 70% D:

Ah brilliant! keep us informed (only if you want to like) but would be good to hear your experience.


ettelrahs
1 week ago

@wobbleone I just don’t like the whole “Russian roulette” aspect that they are playing! I get it about the ‘first line’ of treatment but I would rather not play with my brain, can’t replace that organ.


stumbler
1 week ago

@ettelrahs , and anyone else interested, you weren’t getting into trouble for name-dropping.

But, when we start name-dropping against a discussion of potential clinical malpractice, then we might upset some of the people named. And, Shift.MS, being a charity, can’t afford to defend costly legal cases………

By all means, you can have a personal opinion, but share that in a Personal Message.

Thanks for reading, one and all. 😍


ettelrahs
1 week ago

@stumbler – my intention wasnt for it to come across as ‘malpractice’. The team have been great with me over the past year and a half otherwise i’d have not been given my diagnosis and support. I’m just confused as to why they don’t offer higher treatments and as far as I understand, its because its first line treatment, ‘starter treatment’.


dominics
1 week ago

@ettelrahs – and anyone else – mention a name by all means. Say nothing about them. Communicating who they are is one thing. Voiceing an opnion is another.

GDPR allows anyone to request the information. Like @stumvler said, Shift.Ms is a charity and doesn’t have the £ to defend legal action.


stumbler
1 week ago

@stumvler, who the hell is that? 🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣


wobbleone
1 week ago

@ettelrahs
They do seem to have become more conservative on the treatments than I’ve heard from other past patients.
I think they were hoping that these earlier treatments would become obsolete once the newer ones were approved and then they’d have a new starting point. This isn’t the case and it seems their hands are tied a little by NICE guidelines. As a research and specialist hospital though it seems strange that they are not more proactive and perhaps they have good reasons ??
We need to find out those reasons ..🙃


stumbler
1 week ago

I fear there may be a bit of a “fear and blame culture” in the NHS.

Follow the NICE guidelines and you won’t get into trouble, because you done it by the book. Be proactive, go outside the NICE guidelines and “on your head be it”, if any questions are subsequently raised!


ettelrahs
1 week ago

@wobbleone – i think its just a case of asking all the right questions and speaking some sort of logic. I always find my age holds me back sometimes when it comes to the NHS, for example, I go alone to the GP, I’m seen but not heard, I take my mum with me, I’m seen and heard. It’s mad that at 26 years of age, I have to use my mum as moral support to be heard 🙈

I also feel like a guinea pig when I go to the doctors/hospital aha


wobbleone
1 week ago

@ettelrahs I think you should make a stronger case for the best treatment based on that fact alone….your age (get mum to emphasise that fact for you as well)
I’m quite a lot older… and very good at advocating for others but not myself. 😅


blagaman182
1 week ago

@ettlerahs without including anyone’s name here is what I got back today after asking why I can’t go on the more “hit them hard treatments”

The eligibility criteria it set by NHS England based on how active your MS is, and not by us . To access the infusion based treatments your MS needs to be rapidly evolving severe. Unfortunately based on your MS activity you will only be able to access the 1st line treatments. If you would like to hold off starting treatment until you see your Neurologist next in which to discuss further please let me know.


blagaman182
1 week ago

She’s says unfortunately like it’s a bad thing but I guess if low activity that’s good.


dominics
1 week ago

@blagaman182 I have to disagree. The young woman sat beside me today was on day 3 of 5 of her first hit of Alemtuzumab.

She researched it well, made a compelling argument about not being willing to wait until irreparable damage is done by the MS. The consultant, happy that she was 8nformed, understood the risk etc was happy to prescribe.

Amy medic that tries to deny a patient, who has MS that is indisputably a non-stop degradation disease, MRI activity or not, the best opportunity to get in front of it as soon as possible is pretty poor in my (and many others) book.

It is your body, your disease, your risk, your future. How dare someone play fast and loose with your future by trying to take some crappy and cowardly course of action and hide behind what are only guidelines. They are guidelines. Not rules. The doc does not risk anything themselves to decide to honour a well informed request.

I’d go further and say they ought to be actively encouraging people by offering leadership to their patients.

*rant over* but my strongly help view.

This British idea of wearing a hair shirt and deferring to everything a Doctor says is just self-harm.


dominics
1 week ago

blagaman182
1 week ago

@dominics is there any specific studies which show going on an infusion when you have minor activity going on completely beneficial that I could show my neuro? Now I’m considering not taking plegridy and having a conversation with my neuro about it but I’d like to go with some evidence? I’m not one to just go on advice from a dr and tbh the nurse I saw seemed to be adamant I should go on plegridy because it’s been around for so long I.e they know more about the risks, the risks with the infusions seemed quite drastic to me. Now I’m 4 days away from my first dose of plegridy and wondering whether I should go through with it.


stumbler
1 week ago

@blagaman182 , if NHS England set the eligibility criteria, then why is there such a marked inconsistency across the NHS? That’s rhetorical, but a good retort.

NHS England probably follow NICE Guidelines. There’s a clue there. “Guidelines”, not mandatory on pain of death!

Back on the offensive you go…………..


blagaman182
1 week ago

@stumbler I may well have to go back on the offensive!


dominics
1 week ago

sarah_legleiter
1 week ago

I started with copaxone (WHICH IS TERRIABLE) but now on Tysabri since `07 it has kept me stable. But do your research there are many options.


blagaman182
1 week ago

Thanks I’m comfortable researching it although it’s good to not try and do it all at once. I’m going to try and talk to my neuro. It seems to me the risks of infusions are quite high, therefore I can understand why when someone’s ms isn’t effecting them much currently they wouldn’t want to prescribe it.

It’s a very difficult thing, you could have no treatment at all and have very little disability for the rest of your life of course could and more likely go the other way. Thanks for your response I will look into it. Unfortunately my plegridy is coming Monday so I need to make a decision pronto! I don’t want it to get delivered as would be a huge waste of resources.


lightning87
1 week ago

Hey! I was diagnosed 5th June 2018, a date that stays firmly in my mind! I started Tecfidera late Sept 18 and so far so good. Will see at next annual scan whether it’s working but not really had side effects apart from the very odd short lasting hot flush. I think it’s the best med for me but like I say, depends if it’s working! X


ettelrahs
1 week ago

@lightning87 – i appreciate you posting your experience with ‘Tecfidera’ as that is the only one they are offering that is a ‘more effective’ treatment. It is nice to know that it is working for you. What worries me is that the team said you have to have blood tests every 3 months or something as their is a possibility that treatment can cause brain infection. I get so panicked taking pills – especially with that risk 😖

Please do keep me informed if you don’t mind, hearing your experience is helpful! I’m still wondering what to do myself 🙈


lightning87
1 week ago

@ettelrahs I do have blood tests every 3 months, the first month after starting them you get one then every 3 months thereafter. I’ve not had any issues so far, they look for the JC virus in your blood which could make you sceptical to PML. I think the pros for Tec our weigh the cons but it is entirely you’re decision. PML is rare and you are monitored closely but it’s still a risk. It’s so hard isn’t it to decide, especially when you expect health professionals to say what one is best for you but they leave the decision to you. I’ll keep you updated on my Tec journey. I have to say, I’d prefer taking a pill twice a day to injecting myself but that’s only because I hate needles at the best of times!


blagaman182
1 week ago

Had my plegridy today. I asked the nurse today who came out to show me why hard hitting drugs weren’t available to me and she said basically (I’m in uk btw) every infusion is £1300 a month. (Obviously the yearly ones similar). So like I said it’s a money thing. The other thing she mentioned was the amount of serious side effects with infusions and that’s why when someone such as myself with low level activity they don’t want to be giving me infusions that could potentially give me some very nasty side effects.

I have to say I completely get there point. For example what about if someone was lucky enough to have low level ms for the rest of there life or even not until there 65/70? Giving someone infusions that could result in liver problems, diseases of the brain etc don’t sound to appealing. I can kind of get why as your ms progresses they use harder stuff.


stumbler
1 week ago

@blagaman183 , Plegridy can also cause liver problems, one in a hundred :-

https://www.mstrust.org.uk/a-z/plegridy-peginterferon-beta-1a

Low level activity is a good “objective”, but with an unpredictable condition…… And, will you be monitored regularly to ensure this is the case? Keep in mind that MRI scans do not show the full picture.

It all depends on your view of insurance. You wouldn’t wait for your house to burn down before insuring it!

But, it’s your life, your call. We’ll still be here for you, whatever. 😉


wobbleone
1 week ago

Sadly, the reality is that the majority of neuros will not prescribe anything stronger, if at all for minimal activity… 🙄


ettelrahs
1 week ago

I’m going to ask those questions when I go and see them in a couple of weeks. Ask them how active they think it is and see what they say. I want to know all the facts before I make a decision about my health care and treatment. Thanks so much guys and gals for keeping this feed updated. Makes my decision a lot more easier. ✌🏼


katrinaf93
1 week ago

@errerahs hi bird, hope you’re okay ❤️ It’s so mad having to choose medication isn’t it? I’m at a similar stage to yourself and in the middle of choosing. I’m going with the injections with the hope of keeping the disease stable with least aggressive medication. If new lesions appear then moving up to the next tier of tablets and then infusions. I’m going this route as I’m more scared of side effects than the actual MS.

I have had 3 new lesions appear in the last 6 years so not majorly active. I added you as a friend, please message me anytime if you need to chat. I totally understand it’s so overwhelming xxx


ettelrahs
6 days ago

@katrinaf93 – thanks for your reply! Yes it’s quite overwhelming if I’m being honest. But i’m a lot more clued up about my options and the questions I need to ask thanks to everyone that’s replied to the post.
I completed get your view and reasonsing when it comes to your DMT. I too don’t want side effects, I think we have enough symptoms to deal with – with this condition and the side effects won’t exactly help along side.

I have had two relapses in the last year and a half. I think i’m going to ask about possibly activity and what else I need to know before making the decision. I got your request! Thanks so much! Always great to have people your age who get it.


nicole_ortiz
4 days ago

Hi! I was dignosed 9 years ago, at 20. I started with Copaxone. I was in such a bad place mentally and physically at that point in my life and injecting myself every single day was too much. I was on it for a few months and was still having bad flare-ups so at that point my neuro with no bedside manner said I had a “very aggressive” case and that my MRI “lit up like a Christmas tree” and said I needed a stronger medication. At that point I got on Tysabri and was symptom free for almost 9 years. I recently came off because I tested a low positive for JV virus and was at a higher risk for PML. I’ve had two infusions of Ocrevus and so far smooth sailing. Personally, I love that I get my infusion twice a year and rarely have to think about it. My neurologist told me that in her opinion, Ocrevus is the closest med we have to a cure.

Not sure what everyone else thinks, just wanted to reach out and say hello! I just signed up and am new here. Whichever you decide I wish you the best of luck!


ettelrahs
3 days ago

@nicole_ortiz – just managed to get back on here! Hope all is well! Thanks for your reply. Always good to hear other people’s experiences. Very daunting condition – i’ve been ignoring it or trying to since my diagnosis, think i’m going through the denial stage. It will probably hit me come the 22nd July for my DMT decision.

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