Last reply 2 weeks ago
Copaxone switch to Tecfidera

Hello all,

So I have been on Copaxone for 3 years. 1st year all good no relapse or new MRI lesions. Second year I got one new lesion but since it was also small my dr said let’s stay on Copaxone. Now my latest MRI showed one new lesion but at the same time I got lipoatrophy on my thigh from the Copaxone so the dr suggested that I switch to Tecfidera.

The problem is.. I have heard and read *horror* stories with it. That the side effects are unbearable. I told my doctor this and she said that ‘yeah but you hear only the bad stories because the ones having no issues never talk about it’. However reading scientific papers and medical sites I see that those side effects are not that uncommon.

I want to take more drs opinions before I start and hopefully maybe have one recommend a different medication as this one seems to be quite intense.. I have a great quality of life at the moment being MS-symptom free (knock on wood), so entering this new labyrinth of side effects and long-term risks (liver damage/low lymphocytes/PML risk) just feels completely counterintuitive. Of course on the other hand I have to think long-term and try to prevent my MS from progressing..

My question to you is: is there any of you who takes Tecfidera and DOESN’T have those nasty side effects? I would love to prove my doctor right, but it’s just hard when all I read about is negative experiences on this drug..

Thank you beforehand for any replies.

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highlander
2 weeks ago

@miapi
I’ve been using tecfidera for two years now and after a about a month from starting it I very rarely get any side effects.
The last two MRI came back as no evidence of disease activity.
Hope this helps you out.


stumbler
2 weeks ago

@miapi , you’re right to seek a second opinion on the advice given to you.

Yes, you needed to change up from the Copaxone, as it wasn’t working for you. But, why settle for better (Tecfidera), rather than best. You need to research the options available so that you can play an active part in future related discussions. The following is a good place to start :-

https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid

(This utility is UK-centric, but this isn’t important to use the tool).

All Disease Modifying Therapies (DMTs) are powerful drugs and come with known risks. The risk is mitigated by regular monitoring. If the risk increases beyond acceptable thresholds, then your DMT will be reviewed.


miapi
2 weeks ago

Thank you for the responses.
@highlander I am glad that this medication is working for you.
@stumbler I am very familiar with this tool.
I have been asking my doctor her opinion on Cladribine since year one of my diagnosis. I asked also now. Her arguments against it:

1) Too aggressive/dangerous for your case. Also, very unpredictable side effects, with people getting cancer years later after they stop with it.
2) Due to COVID-19 it’s not advised that it is prescribed currently unless very necessary
3) We don’t have experience in the hospital with this drug. Also in general, in the Netherlands it is very rarely prescribed.

Here in the Netherlands insurances cover only one second opinion and because I got mine 3 years ago when I got diagnosed, I can never get another one ever (I know this is crazy). I convinced them to cover a visit to that doctor that I had gotten the second opinion at back then, but even if they recommend a different treatment my insurance said that they won’t cover the costs of switching to that doctor, rather than this doctor will have to send a recommendation to my current doctor and it will be at her discretion to implement it or not.

I can also pay myself for other opinions (around €300 per appointment), but then again my doctor wil have to be the end decision maker.

I also am planning to go get some other opinions in Greece where I am from, but then again the same issue would stand: my current doctor will have to be convinced to give me another medication.

So it feels like I am sort of stuck with this doctor for now as long as I reside in the Netherlands..

I honestly have been considering staying on Copaxone instead of having to go through the daily torture that Tecfidera seems to be..

Going on something more effective especially now that I m still early on in the MS journey and symptom-free seems like a great prospect, but I need to feel reassured also by a doctor that this is the right path for me.

I have read a lot about MS and I do consider myself educated on it on a certain level, but the truth is: I am not a doctor myself. So I can’t really know what’s best.


stumbler
2 weeks ago

@miapi , can I just sat that your Doctor is misinterpreting the cancer risk. Cladribine was initially discounted as an MS therapy, due to the isolated diagnosis of cancer in the clinical trials.

It was only when the Trials data was reviewed that Cladribine was not seen as being the cause. It was then down to some pioneering off-label usage that gained enough momentum to have the trials data fully reviewed, with Cladribine becoming an approved treatment under the label, Mavenclad.

The argument that the hospital has no experience isn’t that strong. Cladribine is administered orally, so no infusion routines to be considered. And, it does pose the question about how hospitals gain experience in a new drug………

The bottom line is that it’s your body. Surely you should have a say in what goes into it!


b-o-b
2 weeks ago

@miapi, medicine is not reserved to doctors, science is not reserved to scientists (I am one). You are not a doctor, but you can read lasted research (by the way most doctors don’t) and make great decision thanks to it. And yes, you can know what is best for you based on data and proofs. (https://www.sciencedirect.com/science/article/abs/pii/S1474442220300673?via%3Dihub).

Nevertheless, I understand that your situation is not simple.

Firstly, you need to push this subject again with your doctor. What is her opinion on other DMTs like anti CD-20 therapies? (They are first line DMTs in a lot of countries now.). What is the DMT algorithm in your country? You have a breakthrough on first line DMT. What say this algorithm in your country? (I mean about second line treatments).

Secondly, maybe you can try to contact a really famous MS specialist in your country to try to influence your doctor.

At the end, you really [really] cannot get heavy stuff, it will be better to go for Tecfidera than stay on your CRAB drug (which doesn’t work for you as you mention in your post). Maybe you can speak with your doctor about Gilenya, it’s also a pill but a little more effective than Tecfidera.

Tecfidera could have rare and bad side effects, paracetamol too. But in average, that’s OK if well monitored.


miapi
2 weeks ago

@b-o-b thank you for your reply.

According to this study I see that I am already a bit ‘late’ with starting a high-efficacy medication, as it states that up to 2 years was associated with better outcomes.. I am now on year 3. So not to early and not too late.

I wouldn’t compare paracetamol with Tecfidera, but I do understand what you mean with this statement. It is just that I have heard way too many bad stories about Tecfidera, so it’s hard for me to reframe it under a positive light.

Do you know by any chance how I could find the treatment algorithm for the Netherlands?

Thank you beforehand for your reply.


mrbump
2 weeks ago

Hi Miapi I’ve been on tecfidera for a year no big issues with it only the occasional flushing (very rarely)
Just make sure u take it with a meal
Bloods checked every 3 months
My neuro said he never seen PML because of tecfidera and never expects to see it in his career
Hope this helps
Take care😊


b-o-b
2 weeks ago

&miapi It’s never too late. What fundamentaly says the study is the sooner the better or if you prefer time is brain.

Tecfidera is a fine drug but you can have better without much more side effect with anti CD20 therapies (at least in the short term).

If you cannot try Tecfidera or better Gyliena.


b-o-b
2 weeks ago

@miapi For the algorithm I don’t know but try to google it or ask your doctor it’s suppose to be public.


miapi
2 weeks ago

@mrbump thank you very much for the response. It is reassuring on a level.

@b-o-b I have been doing some research and while asking for second opinions I will also bring the algorithm up, so I can also gain a picture of the line of thought here in the Netherlands.

May I ask you what the side effects you are experiencing with Ocrelizumab are (if you are experience any)?

Thank you


b-o-b
2 weeks ago

@miapi

I began ocrevus one month ago. No side effect so far. Feel great.

I have been on Tecfidera for one year before starting ocr (since diag). No side effect except some flushing when I avoided eating while taking it.


miapi
2 weeks ago

@b-o-b That’s great to hear.
Did you not have any stomach issues at all with Tecfidera? Not even in the first month?


b-o-b
2 weeks ago

@miapi

No I haven’t.

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