Last reply 4 months ago
Choice between Interferon beta

Hi everyone!

I am a newly diagnosed member with MS, Secondary Type, since the end of September 2018.
I saw the doctor in December and they have approved the Interferon beta injectable medication but I believe I will need to choose from Avonex, Extavia, Plegridy, Rebif. I have the appointment with the nurse in UCLH in London on the 10th of January. Could any of you tell me if you were in a similar situation and what would you choose?

Thank you in advance!!
Valina πŸ˜‰

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stumbler
4 months ago

Hi @val31 and welcome.

I’m afraid that something does not add up in my mind. The NHS do not have any approved Disease Modifying Therapies (DMTs) for Secondary Progressive MS (SPMS).

Anyway, the betaferons are the first line, and least effective, DMTs.

I have to question the diagnosis of SPMS, if DMTs are being considered. In any event, the latest rationale is to hit MS hard and fast, with the most efficacious DMTs, rather than starting slowly and waiting for further symptoms before moving up.

Sorry to pose so many questions at a worrying time for you. But, we can help you understand and query the statements being provided to you. πŸ˜‰


grandma
4 months ago

I, [email protected] am confused. Was on Beta-Inferon for 23 years, started to get a lot worse 18 mths ago and was changed to Tecfidera cos the Avonex was no longer working. Tecfidera was a second line medication, and I can’t understand them giving you Avonex if they have dxd you with spms. Worth investigating and asking questions?


val31
4 months ago

Thank you for your replies and questions posed.

I had only one clinically isolated symptom, end of August in 2018. I was diagnosed back home in Greece, but I live in London. I was hospitalised and treated with steroids while in Athens and my neurologist there recommended Lemtrada or Copaxone. I came back to London and when I saw the doctor in UCLH this December, I was given the option of taking Lemtrada or the Beta-Interferons (the choice of the above I firstly posted). I chose the Beta-Interferon and the doctor agreed with me as Lemtrada has severe side effects. NHS doesn’t approve the Oral medication for my case. The doctor recommended to start with the Beta-interferons and change along the way if it doesn’t work.


val31
4 months ago

Also, this is the link I read so it will make it easier for me to choose! Extavia and Rebif is approved for SPMS apparently.
https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid/compare/446%2B1595%2B450


stumbler
4 months ago

@val31 , the choice between Lemtrada and the Betaferons is comparing one of the most efficacious treatments with some of the least! There are other treatments, which have been discounted.

Your clinical history also makes me doubt your diagnosis. Secondary Progressive MS (SPMS) is a variant of MS that you transition to after a period (of years) as Relapsing Remitting MS (RRMS) . It’s when the remissions stop and the condition becomes a slow decline that you are considered progressive.

From having Clinically Isolated Syndrome (CIS) less than six months ago, it would seem to be too early to jump from CIS to SPMS.

I agree that the Betaferons (and Copaxone) are approved for SPMS with relapses. But Lemtrada is not, although this may have just been a Greek initiative, where the guidelines are different.

As for which Betaferon, you need to look at the dosing requirements and see which suits your lifestyle the best. Bear in mind that there is a side-effect of flu-like symptoms, which might impact the day following taking the shot.


grandma
4 months ago

I agree with Stumbler. I was on Beta-Inferon for 23 years. One got used to the side effects, I learnt how to inject myself, did it in the evening, when the flu symptoms hit 2 hrs later I was going to bed! After a few months, was a bit wobbly still the next morning, but nothing to really shout about, but after years on it I didnt really have any. Was changed to Tecfidera a year ago when I started to go downbank fast, but they did tell me that rrms would become spms in 10-15 years, it took 23 so not complaining. Inferon are the first line of defence, but there are still plenty of levels to go at if necessary. One thing that has been great with the Tec is taking a tablet twice a day instead if sticking a needle in myself once a week!πŸ€™πŸ˜


melmel1
4 months ago

@grandma hey I just wanted to know can you be on meds with secondary ms? How r u X


grandma
4 months ago

As good as can be expected all things considered. I think the rrms is becoming spms but nobody is saying anything or calling it that. Got changed from Avonex to Tecfidera a year ago. Things had started to go downhill quite quickly and the ms nurse decided, with me, that the Avonex wasn’t working any more hence the change. Usually had 2/3 relapses a year, nothing for the last year while I’ve been on Tecfidera so all seems good. Still going downbank but more slowly. Can’t really walk now, all power in the hands has gone and I have lost my ‘choke’ reaction so can’t sleep lying down any more, in fact ms nurse has ordered me a hospital bed that goes up and down electrically as well as having a sloped back so I will no longer have to use pieces of wood and V pillows😜✌🏼😍

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