Last reply 10 months ago
Being on a first-line drug

Hi all, I was diagnosed last June and after my neuro waiting 3 months she told me I cloud choose a treatment.

The options I had were the first-line injectables, Aubagio, and Tecfidera.
I chose Copaxone based on its low side effect profile. So far so good, however I am constantly having the same thought:

Why am I on a low-efficacy drug?

The more I read about MS, the more I discover about the first-line injectables actually only reducing a bit the nr of relapses, but doing nothing for disease progression or accumulation of disability. (If I have understood correctly)

I have visited a couple of neuros and they all say the same thing: It’s too early to switch to something stronger.

Reading all about the newer treatments I get constantly the feeling that I could be doing something better for myself, and I am not being given the chance to.

I would like to ask people who are on the injectables: How do you feel about being on such a treatment?
Is it possible that someone lives a long, healthy life on them?

I really want to believe in what I am doing if I am going to keep doing it for the rest of my life (or at least until I am forced to switch because of a relapse).

Thank you beforehand
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edgarleroy
10 months ago

Find a neuro who thinks the same way that you do:


zoeb
10 months ago

Morning -I was giving this some thought before I replied because I think my reply might be contentious.

All of the drugs that we are offered in the U.K. have specific guidelines about who is eligible for them based on their ms profile eg the number of relapses you’ve had, your lesions etc. These guidelines are set by NICE.

It might be the case that you are only eligible for the first line treatments based on these guidelines.


miapi
10 months ago

@edgarleroy @zoeb

Thanks for your replies.

@zoeb you are correct that I probably don’t meet the guidelines for a much stronger treatment (I live in the Netherlands but I can’t see the guidelines here being more radical than in the uk)

It’s just that (as all of us) I really want to preserve my health. That is why I asked whether there is someone that has stayed healthy for years being on these first-line treatments. It was more of an attempt to find some inspiration.

Best
MiaPi


zoeb
10 months ago

I’m sure there’s plenty of people who could give you those words of encouragement. I know a few people who have done well and are still doing well on first line treatments – and the way they are delivered suits their lifestyle really well. One of them has been taking the medication for years and they have had very few relapses etc, seems to suit her very well.

🙂


edgarleroy
10 months ago

Well, my MS appeared to be very mild for a number of years, no relapses while taking copaxone. It didn’t stop the progression, I’m pretty disabled after 3 decades. I tend to now favor the newer drugs, especially cladribine and rituximab / ocrevus. Whether they are good enough is still an open question. Some people will want to hit the MS hard (HSCT is very popular), while many want to use milder or no drugs to deal with it. The various health systems should be more flexible. Once things are damaged, there’s no going back.


miapi
10 months ago

@edgarleroy

Well I ve been to two different doctors in the NL (that’s how many the system is allowing me to visit maximum, and I m not even kidding), and to five different ones in Greece.

All of them said the same thing: that I m not eligible for the more effective treatments. And mind you I do have some bad prognostic factors (brainstem lesion, attack with motor problems, oligoclonal bands in CSF, vit d deficiency)

At this point it seems that there is nothing literally I can do to go on a more effective treatment


cameron
10 months ago

I did very well on Copaxone for 11 years. I had no relapses worth speaking of, although the effects of my earlier one/s that led to the diagnosis never remitted. Three years ago I started with what I thought was a minor sensory symptom. The neuro immediately offered me a second-line drug. I’m now on gilenya and so far so good. I think you really must find out the nuts and bolts of your healthcare decisions – there will be official guidelines out there somewhere and you certainly won’t be the only person in the Netherlands wanting a better choice of treatment, so how do people buck the system? It may be that you qualify for second-line drugs once a new symptom appears and there may be neuros who interpret the guidelines more creatively. For example, when I was diagnosed, I overheard the consultant saying to his students: ‘It’s difficult to say if this lady has had a further attack or whether her symptoms are a continuance of the original relapse…. so I’m going to presume it’s a new attack so that she qualifies for drug therapy’. xx


fingersandtoes
10 months ago

If you were initially offered Tecfidera I don’t see any reason why you can’t change your mind and go on it after all.

I was offered the injectables, Tecfidera and Lemtrada with a strong recommendation to opt for Tec. (Lemtrada was a bit full on I think with the blood tests every month).

I’ve been on Tec for a few weeks now with no side effects. But then if you try it and it doesn’t work for you there’s always other options.


cameron
10 months ago

Sorry – I didn’t read your post thoroughly enough to see that you’d been offered Tec. That being the case, as @fingersandtoes says, why not opt for it now? Copaxone did well for me but I had problems with injecting. After five years or so of daily shots. I developed lipoatrophy in both legs. This is the collapsing of fat cells as a result of the injections. It might sound an attractive proposition but I can assure you it’s not! It leaves ‘dips’ in your limbs that are quite noticeable and which are there to stay. It’s much easier to take a daily capsule! xx


miapi
10 months ago

@fingersandtoes @cameron

Thank you very much for your replies!

@cameron
11 years doing well sounds like a somewhat promising time period..
I do struggle with injecting myself every time (I know it’s stupid and that I shouldn’t), even after almost 5 months, so building a belief in my head that I m not taking this drug completely in vein is important for me to keep going.

Regarding not opting for tecfidera.. When I was offered the drug options + was explained the side effects, PML was brought up as a possible one of Tecfidera..

Also I knew nothing about my prognosis. I was just told ‘you MIGHT have MS but we are not sure’

It was only when I started researching myself, and when CSF abnormalities where added to the McDonald criteria, turning me from CISer to MSer (this happened last fall after ECTRIMS), that I started doubting a bit about my choice..

So yeah, baseline: I didn’t know enough about MS + I was (still am actually) scared of PML..

But yeah I will meet my neuro in about 2,5 months for a follow up and I will discuss with her how I feel.

Hopefully all goes well till then..


potter
10 months ago

I was on Rebif for 5 years and had to quit because of skin rejection and it also messed with my thyroid. I have been on Tecfidera for 5 years now, once your body gets used to it, I haven’t had any problems taking it. The Rebif was a shot three times a week, I always felt like I was getting over the flu the next day. When I got use to the Tecfidera I felt like I was alive, not a slug. I did have my first relapse at Christmas this year, I haven’t had one for 10 years, I ask my neuro if I needed to change medicine and he said no. The Tecfidera was working well for me. I think I did to much and was stressed is why I had the relapse. My mother in-law had been ill for months, I was taking her to appointments, shopping and cooking. Potter


cameron
10 months ago

I’m not surprised you feel confused, in fact it’s quite natural given the uncertainties and shock of diagnosis. An excellent source of info is the Barts MS blog. If you read this daily over the next month or so you’ll be a lot better informed about current thinking. You can also research each drug on there (by doing a search) and see the latest trials news. The blog analyses research findings and is rightly critical of many of the claims made in the media for ‘miracle’ cures, so it’s pretty realistic. xx


miapi
10 months ago

@cameron

I do in fact read it daily and find it very informative. I have actually even read all of Dr Giovannoni’s papers on PubMed. Thanks for your recommendation.

@potter
How do you deal with the possibility of PML as a side effect if I may ask?
If it wasn’t for that I would 100% gone for Tecfidera, but that possibility made me quite sceptical towards it.
Do they check for it? Is it preventable?

Thanks again for your replies xx


edgarleroy
10 months ago

PML for Tec is lower risk than Tysabri or Gilenya, bloodwork will prevent PML. Prob your most effective available option.

No off-label drugs available in NL? Sweden doses lots of rituximab. Cladribine is cheap if you can get the injectable.


potter
10 months ago

I am not worried about PML, when I first started on Tec my neuro checked my blood levels twice a year but now he only does it once. I think he should at least check it twice a year, if I have a appointment with my GP I will have her run a blood test. I talked to my neuro about this and he said if I was going to have any problems I would have shown some kind of signs by know. Five years ago when I began taking Tecfidera, neurologists would start checking your blood monthly if your white cell count was low. The FDA told them they had to take you off the Tecfidera until your white blood cell count got back to normal. I don’t know if the policies have change but from what I have read it seems like you get your blood tested every three months in England. If that is true I wouldn’t get it a second thought. From what I understand the people who developed PML had low white blood cell counts for quite awhile. Potter


mhworden
10 months ago

11 years on Copaxone daily injections with no new lesions and minor progression (ie increased left side numbness and stress use induced foot drop). Like you I chose this treatment option for the low side effects.

Went through the can’t take another injection stage around the 5 year mark. Just couldn’t pull the auto injector trigger any more. Switched to manual and stopped using less fleshy injection sites.

Currently contemplating coming off … But only because I don’t know yet if I’ve evolved to SP and if so Copaxone would no longer be effective.

Wish I could successfully address my worst symptom of brain tired/lassitude! My other symptoms are more an annoyance than a barrier.

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