Announcement

Collapse
No announcement yet.

Plegridy. Any thoughts on this medicine?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    #16
    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!

    Comment


      #17
      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.

      Comment


        #18
        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.

        Comment


          #19
          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.
          Dx'd : 10/30/2002
          Started Copaxone 12/16/2002
          Currently on Rituxan

          Comment


            #20
            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

            Comment


              #21
              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!
              Diagnosed: May 2012
              Medications: Avonex - stopped 12/14
              Plegridy - starting 12/14

              Comment


                #22
                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.
                Dx'd : 10/30/2002
                Started Copaxone 12/16/2002
                Currently on Rituxan

                Comment


                  #23
                  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 ; )

                  Comment


                    #24
                    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.

                    Comment


                      #25
                      Took my first dose yesterday, premedicated with extra strength Tylenol and drank plenty of water. Felt kind of blah, slightly headachy on and off and had some mild to moderate body aches. When I went to bed, my feet got cold and I could not get them warm and the aches got worse. I laid awake for an hour, then it was time for more Tylenol, after that a half a Xanax, because I was stressing and needed sleep and a pair of socks, I slept well.

                      Woke up today, feeling blah and have been so most of the day. I was well enough to do a load of laundry and it was a dreary snowy, rainy day anyway, so I wasn't missing anything. Feeling better now tho, but still slightly achy and fatigued.

                      I also have Fibromyalgia as well as MS and some arthritis, so pain and fatigue is not unusual for me. I have taken Copaxone for most of the 12 years since diagnosis. Plegridy seems to have increased my headaches, body aches and fatigue. I do hope it does get better over time, because I was feeling pretty cranky too.
                      Dx'd : 10/30/2002
                      Started Copaxone 12/16/2002
                      Currently on Rituxan

                      Comment


                        #26
                        Hi everyone. I am new here and have been on Avonex for about a year now with few complaints. I am starting Plegridy on Tuesday and will be more than happy to share my thoughts once I use it. The Avonex was working well for me but the once a week shots were really dragging me down (flu like symptoms and body aches), so i'm excited to only inject every 15 days.
                        DX'd in 2011. It's a struggle but one that makes us all stronger.

                        Comment


                          #27
                          Tomorrow at 3:00 the ms active source nurse will be here for the first Plegrity shot. Premeditated, hydrate and fingers crossed. I'll let you know how it goes.
                          No matter how it goes I know I could still never give myself the injection. Hoping this is different.

                          Comment


                            #28
                            Hope everything went ok FoxFire! I am a total needle phobe, just the sight of sticking myself makes me have an anxiety attack. The fact that I don't see the needle makes it so much easier for me!
                            Diagnosed: May 2012
                            Medications: Avonex - stopped 12/14
                            Plegridy - starting 12/14

                            Comment


                              #29
                              Did my second shot last night and so much better. The side effects were only a mild headache on and off today. I slept great last night. I still have a red site reaction where I did my first shot 2 weeks ago, but the doctor's office said those should improve over time as well.

                              So, I'm optimistic the next shot will be even better and that plegridy will work out for me. I forgot to check with my doctor when I should have blood work done again. Hopeful that will turn out well.
                              Dx'd : 10/30/2002
                              Started Copaxone 12/16/2002
                              Currently on Rituxan

                              Comment


                                #30
                                First shot from the starter kit, premeditated with Celebrex took the shot in the afternoon normally I took Avonex right before bed. The injection was a breeze never really felt it. No real side effect that day. I woke up and felt like I was hit by a truck. Full blown flu like symptoms all joints hurt, chills low grade temp. About the same time I took the shot 24 hours later they were gone. I developed a welt a the injection site, I found it odd I never had a site reaction with AVONEX after 7 years and this little needle left a welt. I took Celebrex and Tylenol until the symptoms were gone. This one wasn't easy. I hope number two is better.

                                Comment

                                Working...
                                X