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rebif vs plegridy

Hi everyone

My son who is now 12 yeas ols,was dx with MS when he was 5,he has been quite stable,had a few bad spells.but for the past 7 years i regard us as lucky,however,since December he has suffered daily with the worst headaches,eye pain,nausea and feeling like total rubbish.He has been on Rebif 22mcg,all along,now we are switching to Plegridy,he will get his first dose on 30/3/16.My question is this,is Plegridy stronger than Rebif?,im sure hes going on the full dose of Plegridy,im worried that all we are doing is twitching basically one to the other and they are on the same level of effectiveness.

We are waiting for an MRI date as they want baseline MRI before he starts the new medication.I am almost positive it will show new lesions due to how ill he has been.There isnt really much info out there about Plegridy.

thank you

Hello Sandy

How heartbreaking it must be to have a child with MS.

The trouble for us all is going to be what drugs are available for children as well as adults. If he were an adult I’d say, along with many others, why an injectable, why not Tecfidera? But there may be very good reasons why a daily pill is unsuitable for a child.

If that is the case, then both Rebif and Plegridy have approximately the same reduction of relapses. I’d be tempted to say Plegridy is a better option simply because it’s once a fortnight rather than 3 times a week and if he’s going on a stronger dose then it might be better all round.

But other than that, I can’t comment, but at least your post gets bumped up to the top. Maybe someone else has more direct experience and can help.

Sue

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Hi Sue

Thank you.

Tecifera was going to be the choice,he was tested for JCV and was negative,however his neuro then thought that Plegridy was maybe the way to go rather than jumping onto the “big guns”.There isnt any of the treatments passed nor tested on children so its trying to keep him on the less “strong” treatments if we can,but of course i worry about relapses,his general well-being day to day and of course the risks of these treatments side effects,common and also the totally scary ones.I certainly think the Rebif isnt doing its job anymore so im worried that im just putting him onto another type that wont make any difference either.Praying the full dose of plegridy will help him.

Sandra.

Tecfidera isn’t a ‘big gun’. It’s a first line drug and can be made available in half dose capsules in case the full dose is hard for him to take. And it’s relapse reduction rate is about 50% rather than the 30-35% rate of any of the beta interferons.

A big gun would be Tysabri which is a second line drug if he failed on the first line drugs.

I think it’s must be so difficult being a parent of an MS child because so little research has been done on children. And of course you can understand why, because MS doesn’t affect too many children, plus it might be considered unethical to test a drug out where safety isn’t assured.

Personally, I’d be happier swapping to a completely different drug with a higher relapse reduction rate, rather than jumping from beta interferon to beta interferon. But you can only be guided by your neurologist who I assume is an MS specialist?

At least if he continues to relapse on Plegridy, you can swap to Tecfidera.

Sue

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Hi - had my first Plegridy injection recently and it was fine. Just a reddish mark around the injection site. I trust that Plegridy works for your son.

Hi

Sue,that is exactly what i feel i am doing,swtiching from one to the other,just basically a different formula,although as i said his rebif was 22mcg half the adult dose and the Plegridy is the full adult dose,maybe it will make a difference,well im praying it will tbh.

Wanderlust,he was on Rebif for 7 years,but we now think it isnt doing its job anymore and also his neuro does not use it as a first line treatment anymore due to a few ( 3 i think) patients having serious side effects,her thoughts are he tolerated Rebif well for 7years so hopefully will be fine on this but as i said,am i just going from one to the other,time will tell its just very terrifying when all of course is unknown and it is your child.

Muddles,his legs and sides are such a mess due to the marks the Rebif has made over the years.He just said last night it will be less marks now as its only every 14 days and its a smaller mark i believe.The Rebif rebi-smart devise left terrible marks.

thank you all for your replies

Sandra

I am so sorry to hear you have such a young child with ms. This must be very hard for you all. xxx

It is very hard also to make decisions for a child knowing full well there are no statistics for the newer drugs.

I am speaking from personal experience but i do have a child of similar age to you.

I was on Rebif for 10 years. My ms was stable on Rebif for most of this time without too many problems in the early years.

After a while i started to feel pretty ill on Rebif and i was told i had failed on the treatment.

I decided to go on the Tecfidera/aspirin trial. I have stayed on Tecfidera when the trial finished. I have now been on it 19 months.

I am really glad i made this decision. Tecfidera has had a very good safety record for years as it used to be used as a treatment for psoriasis. Tecfidera is not a ;big gun;. It is a first line treatment - same as Rebif, but it is more effective than Rebif.

Tecfidera is the most effective first line treatment available at the moment.

There are side effects to every treatment but if this was my child i would want him to be on the most effective treatment possible. After a fail on Rebif - i would want my child on the best first line treatment possible. Tecfidera.

Tecfidera is made in 2 doses (120 and 240). Try getting in touch with Biogen - the company who make Tecfidera. and seeing as your circumstances are so unusual they might help you trial him on a very low dose. You would have to work with the neurologist as well of course.

If you can;t get in touch with Biogen then ask your neuro/nurse to speak to the Biogen drugs rep that visits the hospital.

I am doing well on Tecfidera. There are side effects but they are easily managed. I am feeling much better now. I have made improvements on Tecfidera/

I send my best wishes

Teresa.xxx