Anyone on this?

A board to discuss the Multiple Sclerosis modifying drug Plegridy

Anyone on this?

Postby fishee2 » Tue Jun 28, 2016 7:35 pm

Hey all, the topics here are at best almost a year old, does anyone here have any more recent experiences with it?

I have been on rebif for 10 years or so and am tired of the grind, I've stuck with it for so long because it's worked well. Which is another reason plegridy is interesting to me.

So anyone have recent experiences to share? Otherwise I'd lean towards an oral option, probably gylenia.

Thanks friends.
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Re: Anyone on this?

Postby ccbower88 » Wed Jul 06, 2016 5:45 am

Sorry this is a little late, I was on plegridy for several months but my ms issues were not improving and I was having terrible flu symptoms while on it that would put me down a week at a time. It was nice not having to inject too often and the side effects are similar to other meds in that category, it just didn't work for me. As for oral I have tried tecfidera, it wasn't too bad and only gave me some tummy trouble. It was totally better than the flu like symptoms of the injectable meds. Sadly after around 9 months we weren't getting the changes we wanted to so my doc switched me to tysabri.
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Re: Anyone on this?

Postby cjtmn » Sat Aug 27, 2016 4:18 pm

I am sorry this is so late - you've likely already made your decision. I have been on Plegridy since February (6 months full dose). I've heard that others who have been on interferons transition quite well. For me, this is my first DMD and it's been a rough adjustment. I had 2 great injections 2 and 4 weeks ago. Then my injection 2 days ago yielded difficult side effects again. I'm hoping that was an anomaly and the next shot goes well again.

Biggest issue is the flu-like-symptoms: fever, chills, aches and pains - the works. As for efficacy, I go in next week to see how well it's working. No major relapses, so that part is good!

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Re: Anyone on this?

Postby NHE » Sat Aug 27, 2016 10:35 pm

cjtmn wrote:For me, this is my first DMD and it's been a rough adjustment. I had 2 great injections 2 and 4 weeks ago. Then my injection 2 days ago yielded difficult side effects again. I'm hoping that was an anomaly and the next shot goes well again.

Biggest issue is the flu-like-symptoms: fever, chills, aches and pains - the works. As for efficacy, I go in next week to see how well it's working. No major relapses, so that part is good!

Hi cjtmn,
Are you taking anything for the side effects such as ibuprofen?
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Re: Anyone on this?

Postby cjtmn » Fri Oct 21, 2016 7:48 pm

I am so sorry I haven't checked back in. I am still on Plegridy and my MRIs in August showed absolutely no change, which is awesome! I'm coming up on my 1 year anniversary of being Dx'd.

As for my routine, I do the following:
1. LOTS of water for 2 days before and 2 days after injecting.
2. 440mg Aleve 1 hour before injecting - I typically take it around 7-8pm and inject 1 hour later.
3. If I'm really hurting at bedtime, I will take 1 Gabapentin before going to sleep so I can rest.
4. 440mg Aleve 12 hours after the last dose; then Inplay it by ear. If I need it still the next night, I will take 220mg. If it's going ok, I will skip it.

I'm usually fine by the next day. Tired, but no additional meds needed.

Hopefully this helps someone. The side effects from this do get better over time. I have also noticed that when I inject my tummy, the side effects are much lighter than when I inject my thighs (I don't do arms).

I will do a better job of checking back in!
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Re: Anyone on this?

Postby HeatherMintyCool » Thu Nov 17, 2016 3:04 pm

Hydration is key! I usually take it around the evening before bed along with nurofen before going to sleep. Throughout the night I'll have really bad joint pain and body aches. It dissipates by the morning, but the achyness is still around. The 2x/month injection is nice.
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