Plegridy. Any thoughts on this medicine?

[su2you]

I just took my eighth dose of Plegridy last night. When I was first diagnosed in 2010, with RRMS, I went on Avonex. I had the standard FLS at first and made sure to premedicate with Aleve. After a few doses, the FLS decreased to almost nothing but I always took the Aleve.

Problem was that I was terrified of the needles. So my friend, a nurse, gave me the weekly injections. Eventually I was able to do them myself but not without a lot of hesitation and upset most times. At a point, I went back to having her do them; I had kind of a relapse of my overwhelming anxiety. When Tecfidera came out, I had just changed MS doctors. My new doctor recommended I switch; she had virtually no patients still on Avonex. Even though my disease had been very stable on the Avonex, the idea of giving up the needle (in combination with the improved efficacy) was all I needed to hear.

Unfortunately, my body did not like Tecfidera. The first couple of months were pretty good, but then I starting having terrible stomach pains. So much so that I was not on a regular schedule with the drug, thus decreasing its efficacy. I think because of the delayed negative effect, I didn't immediately attribute the pain to the Tecfidera. I took antacids and made sure I had a full meal before I'd take each dose. That helped but didn't alleviate the problem completely.

A few months after I started Tecfidera, my rheumatologist changed my arthritis medicine to a combination drug that included Nexium and I realized my stomach pains decreased. But the pain had been so bad that I was fearful and never got comfortable with the drug.

Then Plegridy came out and I decided to move back to an injection. I figured I could suffer through the fear again, especially since the dosing was less frequent. Plus, it being a sub-q needle, I thought, would make it easier.

Doing the injection has not been easier though it's not horrible either. I guess for needle-phobes a shot is a shot is a shot. Surprisingly, the injection hurts slightly, which I did not find with the Avonex. And interestingly, my body's reaction to Plegridy is delayed, which I have heard others have found too. I have FLS and some fatigue, but about 18-24 hours after rather than 2 hours after with Avonex. But they are relatively mild reactions.

My main problem is my skin's reaction. About a week after the injection, I get a hot, red mark at the site, which gets slightly bigger over the next few days. It hurts when touched or rubbed; not awful but not pleasant. The pain goes away after a few days but the mark takes weeks to fade. Since you rotate the shots, and there only six sites available on your body, two each on your stomach, thighs, and back of upper arm, you can't always do an injection where the reaction won't be seen. Now it's warmer and I'm wearing short-sleeved shirts and shorts, I'd prefer to do the injections only on my stomach, but I can't.

Since there's no study comparing the efficacy of Avonex with Plegridy, and they're essentially the same drug, there's no reason to think Plegridy is better. So the only advantage with it for me personally is the less frequent dosing. I am considering going back on the Avonex.

[Nabbosa]

Su2you:

I've been on Plegridy since October, and the skin reaction definitely gets less severe. The first shot in my arm in November, I had to take allergy medication (on neuro's advice) to control the reaction. Now, I'm not even putting hydrocortisone cream on it.

The marks that stick around - I had those on Beta, too. I was on it for years, and it didn't change. If I'm out in the cold (Chicago!) and come back inside, there are bluish patches on my legs where I've had injection site reactions for years. I was never the swimsuit type anyway, and now I'm too heat sensitive for such endeavors - so I'm okay with the trade-off, since I've not had an exacerbation or progression in 8 years now.

N

[Westgrl]

My main problem is my skin's reaction. About a week after the injection, I get a hot, red mark at the site, which gets slightly bigger over the next few days. It hurts when touched or rubbed; not awful but not pleasant. The pain goes away after a few days but the mark takes weeks to fade. Since you rotate the shots, and there only six sites available on your body, two each on your stomach, thighs, and back of upper arm, you can't always do an injection where the reaction won't be seen. Now it's warmer and I'm wearing short-sleeved shirts and shorts, I'd prefer to do the injections only on my stomach, but I can't.

Since there's no study comparing the efficacy of Avonex with Plegridy, and they're essentially the same drug, there's no reason to think Plegridy is better. So the only advantage with it for me personally is the less frequent dosing. I am considering going back on the Avonex.

I found when I did the injections on my thighs, the red spots stuck around a very long time. When I switched to my stomach, it seemed less. My stomach hurts much less too so I have mainly been doing the shots there. I have a soft belly so the additional fatty skin may help. I have heard from others that spots become less over time.

Overall, you have to decide what is best for you. If taking 1 shot once a week is better than the sub-q shot every other week because of the skin reaction, then that's what is best for you. For me personally, my anxiety levels are at a zero with Plegridy when they were at a 10 with Avonex so it's very much worth it to stick with Plegridy!

[su2you]

Su2you:

I've been on Plegridy since October, and the skin reaction definitely gets less severe. The first shot in my arm in November, I had to take allergy medication (on neuro's advice) to control the reaction. Now, I'm not even putting hydrocortisone cream on it.

The marks that stick around - I had those on Beta, too. I was on it for years, and it didn't change. If I'm out in the cold (Chicago!) and come back inside, there are bluish patches on my legs where I've had injection site reactions for years. I was never the swimsuit type anyway, and now I'm too heat sensitive for such endeavors - so I'm okay with the trade-off, since I've not had an exacerbation or progression in 8 years now.

N

I hadn't thought of trying a hydrocortisone cream, but I will. Thanks Nabbosa.

I found when I did the injections on my thighs, the red spots stuck around a very long time. When I switched to my stomach, it seemed less. My stomach hurts much less too so I have mainly been doing the shots there. I have a soft belly so the additional fatty skin may help. I have heard from others that spots become less over time.

Overall, you have to decide what is best for you. If taking 1 shot once a week is better than the sub-q shot every other week because of the skin reaction, then that's what is best for you. For me personally, my anxiety levels are at a zero with Plegridy when they were at a 10 with Avonex so it's very much worth it to stick with Plegridy!

Westgrl, After a couple more Plegridy shots, I am feeling less anxious. Not sure from which of the several reasons it might be. But I'm going to stick with the Plegridy for now. Especially since hearing from you both that the skin reactions are reduced. Have follow-up MRIs in a couple of months so we'll see. S2U

[lefty12]

I take my 5th full dose injection of plegridy this week. I have had red rash injection site reactions only at the stomach injection sites. I too pre-medicate and hydrate the day before, the day of and the day after. I use an (Nsaid), ibuprofen, for muscles and joint pain and aspirin for head ache and fever. I was DXD in 1994 and never took a DMD before. I am a needle phob. The 2wice a month injection, stronger dosage, small injection pen needle were enough to get me to start a therapy. The FLS ware manageable and seem to be less sever each time. I hope I can find some more grant money to continue this medication, things are different on medicare, (USA). I did notice some depression and 'sharp snarkyness'. I am now on my 6th day of an anti-depressant, I am glad for that.
I think so far I am glad I started this drug, I hope it works.

[su2you]

I take my 5th full dose injection of plegridy this week. I have had red rash injection site reactions only at the stomach injection sites. I too pre-medicate and hydrate the day before, the day of and the day after. I use an (Nsaid), ibuprofen, for muscles and joint pain and aspirin for head ache and fever. I was DXD in 1994 and never took a DMD before. I am a needle phob. The 2wice a month injection, stronger dosage, small injection pen needle were enough to get me to start a therapy. The FLS ware manageable and seem to be less sever each time. I hope I can find some more grant money to continue this medication, things are different on medicare, (USA). I did notice some depression and 'sharp snarkyness'. I am now on my 6th day of an anti-depressant, I am glad for that.
I think so far I am glad I started this drug, I hope it works.

Lefty12,

I'm glad you decided to try a DMD. From a fellow needle phobe I understand. But it DOES get better though never entirely goes away.

You say you're on Medicare so I don't know whether this would help, but have you contacted Biogen's customer service? They have more than one program to help people who can't afford it pay for the medications they manufacture, like Plegridy. If you haven't, their number is 1.800.456.2255.

Good luck, Su2you

[suzb808]

I started Plegridy back in March 2015. The biggest problem I have had thus far is injection site reactions like red spots, swelling, hot spots, and pain. It occurred to me this was similar to a histamine reaction to bug bites or plants like poison ivy. So, I decided to take an antihistamine about 2 hours prior to the injection to see if that might work. Well, low and behold, I have had no site reactions for the last three injections using an antihistamine (zyrtec for me). My nurse also suggested warming the shot to body temperature instead of room temperature, so I also hold the shot under my arm for about 5-10 minutes prior to injecting. Hope this helps some of you out there, I know it was ground breaking for me!

[Shutmedown]

the doc didn't really say but has been treating them as allergic reactions. I have been told to take Claritin a few days before injection and continuing a few days after. I was also given a cream to put on for the itching.

But I'm a happy person today as the doc took me off the Plegridy. Like I said before, my side effects go far beyond flu-like. I can't handle it and my doctor was very concerned. This past weekend was HORRIBLE for me with the lastest injection. Even the Vicodin didn't help.

Good luck to everyone that continues with Plegridy! I wish you all the best....it just didn't work for me. I think Gilyena is up next.

So i have been on Plegridy since the spring and although i like the twice a month schedule, i am still losing two weekends a month. I am having flu like symptoms 24-72 hours after my injections. I have been pre-medicating and drinking tons of water but nothing helps. I have also experienced severe pain in my hips and other joints where it is hard to walk. Has anyone else experienced this pain? My doctor and nurse have said they haven't heard of this side effect. I have two months to decide whether i want to change meds. Doctor suggested Copaxone or Aubagio. Any advice on how to handle the side effects or switching meds?

[Nanobaby]

I learned of this medication when it first came out. Recently saw my neuro who mentioned switching to Plegridy as an option but I'm opting to stick with Avonex because once weekly IM injections has been working for me. Also, I wasn't offered a free iPad or Samsung tablet for switching Pharmaceutical companies, are you listening?