Plegridy. Any thoughts on this medicine?

[KatW]

Thanks, Nabbosa, for this information. I didn't realize there was an 8 hour tylenol. I'm starting this med soon and don't want the chills to start in the middle of the night.

[Nabbosa]

Plegridy - switched from Beta

I'm in a study that looks at flulike symptoms when people switch from one of the other interferons to Plegridy. I'd been taking Beta for 6 years - no real problems, but I was getting a little bit of needle fatigue.

I started with the titration of Plegridy in October and I haven't had any issues so far, other than the same occasional red spots at the injection sites that I did with Beta. Just that there are fewer of them now!

One thing I've always done: premedicate with analgesic about 30-60 minutes before a shot. Even after 5 1/2 years on Beta, I forgot once when I was traveling and woke up freezing. Turns out it wasn't the heating situation, it was chills. Anyway, I've recently switched to the Tylenol arthritis formula, thinking the 8-hour version might be good for the interferon issues. So far, so good.

The worst side effect I've had is waking up just as I'm falling asleep because I think I've forgotten my every-other-night Beta shot. But that seems to have resolved recently ; )

[Lynnada]

Today, I finally heard from Diplomat specialty pharmacy and my plegridy is scheduled to be delivered on Tuesday, 12/30. I called MS Active Source and they will have a nurse call me to set up training. So it looks like I'll be starting in 2015.

I was able to get on the $0 copay program as well.

Once I start, I will come back and report how things go. I've never tried Avonex, so I'm kind of nervous about the side effects and how bad they may be. I've only been on Copaxone. Tried Tecfidera and thought I was going to die, since that experience, I fear side effects.

[Westgrl]

texas, how long did your side effects last overall? A day? I never had any with Avonex but I realize this is technically a different drug and a stronger dose so I am bracing myself.

Let us know how it goes with the 2nd shot!

[texascubbie]

Update on Plegridy side effects, etc

Hi all-
I forgot to note the side effects of the Plegridy for me... So Thursday will be my second dose, and I'm not really looking forward to it! I'm not sure if the side effects of chills, joint pain, etc lasted longer because the drug has a longer half-life (but that may be the case, according to a chemist friend), but I must say they really were NOT fun.

About ten hours after the shot, at work, I began having a lot of back pain and general aches. About 12 hours after the shot and thence onward, getting worse at about 23 hours after the shot, I was pretty much a wreck. My joints hurt pretty significantly and I kind of huddled in bed. I was weirded out by how bad I felt, but I recalled when I just took Avonex I woke about six hours after the shot with bad chills, which lasted about an hour or so, and that side effect went away after the third shot or so.

So, I'm not saying it's going to be a fun trip for anyone at all, but if you have tried Avonex and are thinking about trying Plegridy, my experience tells me the side effects are bad, and longer lasting, but I hope and expect them to go away--I HOPE after the third dose, no longer! When I woke up after the side effects had hit, I felt just about normal and okay. But that extended side effect time was not enjoyable and I'll say it might be a bit of a challenge if you did not like Avonex. I do feel better overall in terms of MS, but I will have my first MRI post-Plegridy on January 5. I'll try to update!

Good luck all out there trying to give it a go! Oh, another note-- I called the Plegridy support people and they were able to get my copay dropped to zero-- I didn't expect that!

Best--
TC

[Lynnada]

Not yet, it's still in process at the second specialty pharmacy. The first one Cvs/Caremark was not covered by my insurance. My insurance is through a union so there are separate companies and cards for medical and pharmaceutical insurance, so it got mixed up.

I'm hoping to get a call soon to set up shipment and schedule the nurse for training. Although, at this point, I'm kind of okay with waiting until the holidays are over to experience the flu like symptoms.

[Foxfire]

I've been on Avonex since 2008 with good results and very few side effects. But the needle still makes me cringe. I can't even do it myself. I was in to see the MS doc Friday and he suggested Plegridy. We filled out the papers and hopefully it will be here soon. I'm looking forward to it as the IM needle still scares me.

[JerryD]

I am sure that the FDA has fully investigated this 'new' drug. But I am sorry to be a 'wet blanket' on this entire DMT party. I know another DMT for RRMS is significant.
Where is there treatment for PPMS and SPMS ? I continue to decline and these boards just continue to applaud very little movement on progressive MS. It's aggravating. I can't stand it.

[texascubbie]

started plegridy Dec 4

Hi all... I started plegridy after a long time off treatment (except for symptoms). I used avonex in a clinical trial so had an idea it would be effective. On Avonex I had the flu chills the first few times, then they went away.

I used the pen, which is a little funky looking but very effective. The dose titrates upward, so the third is the full dose. I followed directions including taking a pain killer, and really it was quite easy.

I did not wake with chills, but about seven hours later my back hurt and throughout the day, my joints started to ache. As I write this, my knees and elbows hurt and my back hurts. Like a slower drawn out Avonex reaction.

I think it's a good choice if one has used Avonex before. The plegridy pen looks almost like a light saber handle, but it's really easy and painless, no needle seen. I paid the forty dollar copay, then caked and found I qualified for zero! My doctor was pleased to prescribe it, and I'm his first patient on it.

I will say the active source people can be really annoying in trying to coordinate who called when, but that can be avoided. I'll try to remember to post later when the aches end.

My 2 cents!

[Sandrolina]

Has anyone started it?

just hoping to get some feedback before switching to it...many thanks.

[Lynnada]

Thanks for your input on interferons, this will be my first time on one.

I am hoping the fewer injections combined with site rotation will help with the site reactions and even if the amount of dents increase, it will be slower.

I guess I should check in with MS Active Source and see if it was approved by my insurance yet and where things stand.

[Ciel]

Ciel - or anyone experienced with interferons -

I have dents from Copaxone too, that's why I am looking to switch meds - also I'm burnt out on daily shots and the 3x/week Copaxone site reactions were worse for me.

I was wondering if you found Avonex any better in regards to site reactions and dents since it is intramuscular. Are any of the other injectables that you've tried any better? Which interferon did you find to have the least side effects?

Thanks.

I had no injection site reactions from Avonex. The IM injections are not painful but I did need someone to give them. I was never able to get over the fear of the long needle and found the injector difficult to use. I am changing to Plegridy because I never stopped having the flu-like side effects with Avonex and I think I will be able to manage that better when it is only every other week rather than every week or in my case twice per week. My doc has always thought higher doses were better and that is why I have been taking double doses The larger doses of Plegridy should manage that better.

[Shawshank]

I've been on Avonex since 1997 and have been planning on switching over to Plegridy. I must admit that I'm nervous though, now that the time has come. I tried Tecfidera last year in hopes of eliminating the shots and the side effects were so horrible I only lasted a few weeks before switching back to Avonex. I have ZERO problems on Avonex. To me, the benefit of Plegridy is fewer shots. I worry about worsening depression (which I have but can successfully treat), the site reactions that everyone mentions, and potential heart problems! I'll talk to my doctor, but I'm curious if people think there is a reason to switch from Avonex to Plegridy in light of all this. Thank you!

[Ciel]

Saw my neurologist today and signed up to try it, even though I've never heard of it.

I've been on Copaxone for 12 years and full of dents from injections. Switched to the 3/week Copaxone and the welts and irritation were worse. I also had an infection at the site and the skin tore open. Tried Tecfidera and Aubagio and had stomach problems.

I planned on going back to daily Copaxone and would just have to get creative finding usable sites. I'm nervous about Plegridy, but I won't know if it works for me if I don't try it.

Wish me luck!

I am receiving my initial dose tomorrow. I also have the dents from Copaxone that are still here years after I stopped taking it. The bad news is, I understand from both my doc and MSActive Source (Biogen) that the same injection site reactions are a problem with Plegridy. Those don't occur with Avonex because of the IM injection.

[Marco]

Here's my take. If you are taking interferon therapy, any interferon, you should consider this medicine. The variance between 1a and 1b isn't that large, but the difference in just shot schedules is amazing. Plegridy builds on the long interferon history giving users a fairly expected outcome.
There are a number of other newly approved medications that I have passed on, but Plegridy is one I'd do. The efficacy of any interferon lags behind a number of other medications, but Plegridy is roughly the same as any interferon.Fewer injections, fewer injection problems, less skin damage without sacrificing efficacy? Yes, I'm in.

The only real concern I would have would be is the higher possibility of depression. Here is the Plegridy starter form:
http://www.accredo.com/sitecore/medi...s/Plegridy.pdf