Avonex to Plegridy?

[sos219]

Hi, I was diagnosed with MS (we think RR) in april of this year so I'm pretty new. I don't post much but I read a bit. I usually can find the answer to my question by reading other people's questions.

I just got my 6 month check up MRI. There was 1 new enhancing lesion on it so they don't think the Avonex is working.

They want me to try the new drug coming out in november called Plegridy. Everything I've read about it says it'a basically the same as a regular interferon but they "pegylated?" it. So it stays in the body longer and you only inject it ever 14 days instead of every week. It is also a larger does 125 injected every 14 day vs 30 every week.

But my issue is, it's still basically an interferon and if Avonex didn't work then this probably won't either? AND it's not even available to be prescribed yet, so I have to keep taking avonex which isn't working until they can prescribe it to me. That's frustrating to me to have to keep doing an injection of a med that isn't working. Avonex is the first drug I've tried I have other options.

My other options are
copaxone (I'm not sure i'm ready for an everyday shot) tysburi (i don't won't to go there yet)
Tecfidera my only deterrent is the side effect, and
Gilenya which I was ready and willing to start even went through all the testing got my start date and my insurance denied it i'm July because it required step therapy and I hadn't been on any other drugs.

[Nabbosa]

Plegridy

As I understand it, Plegridy is considered a "higher dose" interferon because a higher concentration stays in your bloodstream. I'm not a doctor - just in a medical study in which they are checking out flu-like symptoms in people who switch from another interferon to Plegridy.

I'll also give you the news: Plegridy is a sub-cutaneous shot rather than intramuscular. That means it doesn't go in as deep, and the needle is thinner than with Avonex. I'm not sure, though, if that means your body might absorb it differently?

I'd also urge you to call up the doctors office and ask your question. This is a disease that you really have advocate for yourself and understand your treatment. Leave no question unasked!

And in terms of Avonex - it seems that a lot of doctors try it as the first DMD because it's the "default" drug for many more insurance companies. I've been taken Betaseron, and Medicaid in two states called for an explanation. It's the only thing I've ever taken, but from watching the boards for 7 1/2 years now, it seems that a lot of people switch between interferons for different reasons. I chose Beta because it doesn't need to be refrigerated and I was traveling a lot to developing countries when I was diagnosed. But other people might not like mixing the medication themselves, or shooting up so frequently. And that's a fine reason to switch, too, because if you slide on taking the shots because it's inconvenient, then it's not the right medication.

So don't hesitate to ask your questions of the doctor, or the MS nurse at the neurologist's office.

[sos219]

I didn't speak to the Dr I spoke with the PA and I did ask her why they were willing to wait for that specific drug and she kept saying that they feel that it is different enough from avonex that they think it will work.

I just thought it seemed weird to switch to basically the same drug but you are correct it is a big increase in dose 125 every two weeks vs 30 every week. So that might be why they would like me to try it.

I actually chose avonex, my dr first recommended tecfidera but i want to start with avonex just to see how it went it's been around for a long time so it must be working for someone. Once a week shot was tolerable when I thought the drug was working now knowing it's not, makes it a little harder come shot day (today)

My side effects are really minimal with Avonex, I take my shot at 8:30pm and 4 Ibuprodfen I hardlly notice them. I do feel a little extra tried the next day like how you might feel if you were just getting a cold nothing I can't push through.

I'm a little nervous with the higher dose that I might get more side effect but we shall see.

Thanks for your response.

[GracieBH]

I'm thinking of Plegridy too and was wondering if the side effects will be worse due to the higher dosage.

I was not on a interferon so I'm not really sure what to expect.

[Marco]

Before the oral medications were available, it was common for a patient to move from Avonex to Rebif for the higher dosing. The development of a single new lesion doesn't mean your therapy isn't working. Plegridy for example will "on average" prevent 67 out of 100 lesions. The other 33 lesions would still develop and the medication is "working as intended."

You will have to wait & see how the higher dosage impacts you specifically. It could completely shutdown MS or even be less effective than Avonex. In reality, the Plegridy efficacy is not significantly different than any of the existing injections. The side effect and saftey profile of Plegridy is also not significantly different than interferon therapy. Like you said, you will have to take a wait & see approach with Plegridy or any medication you try. Please keep us informed how you progress.

[Tawanda]

Before the oral medications were available, it was common for a patient to move from Avonex to Rebif for the higher dosing. The development of a single new lesion doesn't mean your therapy isn't working. Plegridy for example will "on average" prevent 67 out of 100 lesions. The other 33 lesions would still develop and the medication is "working as intended."

You will have to wait & see how the higher dosage impacts you specifically. It could completely shutdown MS or even be less effective than Avonex. In reality, the Plegridy efficacy is not significantly different than any of the existing injections. The side effect and saftey profile of Plegridy is also not significantly different than interferon therapy. Like you said, you will have to take a wait & see approach with Plegridy or any medication you try. Please keep us informed how you progress.

Marco,
I do not know what your background is, but it seems no matter how oddball a question I have had, you have always helped me significantly. I, too, am a former Avonex user, failed Tecfidera user, and ready to try the Plegridy. You helped me during the Tecfidera period and now you are helping me to understand what seems to be Avonex on steroids (Plegridy)!

I must say that I do not get MRIs and my neurologist never pushed me about this preference. I only go by how I feel. The easiest med with the fewest side-effects get my vote.

You are such an asset to me and this Board.!

[cosake]

sos219 -

I will echo what a previous poster said. There is no "cure" for MS that is proven to completely stop lesions from forming. The medication is supposed to help prevent lesions but none is guaranteed to completely stop them. You may find a medication that works for you overall but will not completely stop relapses, daily symptoms, or lesions.

I started on Betaseron, then Copaxone and Gilenya and now I'm on Avonex and may switch to the Plegridy as my doctor recommended. I stopped Beta due to heart palpitation side effects, stopped Copaxone due to extreme site reactions that were not the norm and made me limp and hurt to move my arms, and stopped the Gilenya because of heart palpitations and no known research on Gilenya and a blood disorder that I have.

I have done well on Avonex. It's the longest I've gone without a relapse, and my daily annoying symptoms have lessened significantly, even with increased stress in my life. I've had quite a bit of bruising and sore spots from the injections so my doctor felt doing them every 2 weeks sub-Q might be something to try.

I think that many MSers have jumped around to different meds to find the best fit for them. You just need to find your best fit - which might be Plegridy. You won't know until you try it. And part of your decision should be how you feel - not just how many lesions you have.

[Marco]

Marco,
I do not know what your background is, but it seems no matter how oddball a question I have had, you have always helped me significantly.

Tawanda,
Thank you for the kind words. Always remember MSWorld is about "patients helping patients" and that is the best part of this community. I no longer have the mental or physical faculties that I once had, but I am determined to help others avoid the mistakes I made. My personal resources are waning, but I will fight the good fight while I have opportunity. You and many others are such a wonderful blessing in my life. Thank you again, and I wish you well!

[Mable]

I think sos219 is right on in her suspicion that one interferon isn't much different from another. I have read at least three different MS neurologists say they rarely prescribe injectables anymore--unless the patient is already on them and doing well. If you fail one, they don't turn to another.

And I don't at all agree with the sentiment that relapses and lesions are inevitable. A modern neuro aims for treatment that leads to no evidence of disease activity. And for more and more people that's becoming possible--or nearly so.

Google Projects in Knowledge and find some of the more recent case studies (I'm thinking of one I viewed today from Cleveland Clinic). Read Giovononi's recent post on NICE guidelines in the UK on the MS Research blog. Find Tim Vollmer's presentation on how his group prescribes. I think you'll see you're questions are well founded.

[sos219]

Thanks for the responses. Small update on me. I got a chance to read the actual MRI report from the Tech. There is Good and bad.

the good is that of the 3 original lesions I had in April 1 has shrunk a little, 1 has shrunk a lot, and the 3rd is not even able to be visualized.

The bad. I have a new actively enhancing open ring lesion on my occipital lobe. AND one on my cervical spin near C3

It's really bothering me that the PA didn't tell me , when she called, that my original 3 lesion were doing better AND that I had 2 new lesions not just 1! Her exact words were "You have one new enhancing lesion so we don't think the Avonex is working" To me that seems like a big deal that she completely omitted the rest of the finding I think they are all relevant. If she would have told me everything I could have asked the appropriate questions.

Now I'm back to freaking out and questioning if I should even be doing this, since I wasn't given all the necessary information to make and intelligent well informed decision.


3 lesions have shrunk that's really good right? Does that mean that the meds are working? I was on steroids back in april did they shrink the lesions? I have 2 new active ones which is not good, but you're right I could have like 20 new ones. So avonex might still be working...


I love my doctor, he's amazing, great bedside manner, not pushy at all but I don't know if I can deal with his PA. I hate her right now and I try really hard not to hate people but I hate her. I NEED all the information before I make a decision. I can't ... I just... I'm so annoyed right now I'm getting worked up just typing about it. i'm so completely off topic of this post. Sorry

Anyway I will definitely update when if/when i start the new drug. As of right now it still is not able to be prescribed and there is still the matter of my insurance company covering it . So we shall see.

Thanks again for all the info, and sorry about the mini freak out/rant