Originally posted by Foxfire
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Plegridy. Any thoughts on this medicine?
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Diagnosed: May 2012
Medications: Avonex - stopped 12/14
Plegridy - starting 12/14
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Firefox - My first injection with Plegridy was the same as yours. Let me tell you, I was anxious about doing shot #2! The second injection was MUCH better, only a mild headache that was on and off.
You can still see discoloration on my arm where I did my first injection about 2.5 weeks ago, but it is fading. The red site reaction on my leg from the second injection is much smaller.
I'm hopeful shot #3 will be almost uneventful, but still nervous about side-effects.
Good Luck and Good Health to everyone!Dx'd : 10/30/2002
Started Copaxone 12/16/2002
Currently on Rituxan
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1st use
Hey everyone. So Friday i did my first shot of Plegridy and I have to say it wasn't so bad. The only side effects I experienced were joint pain and a mild irritation at the injection site which is still a little sensitive. I pre-medicated the same way I did for Avonex but with the Plegridy, the next 24 hours were tolerable whereas the Avonex knocked me off my feet for a day.DX'd in 2011. It's a struggle but one that makes us all stronger.
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Plegridy
I was diagnosed in November 2014 and started on Plegridy immediately. I know that everyone is different, but my experience with Plegridy has been horrible. I've had a site reaction for each injection which has been the size of the palm of your hand. Each one has taken a month to heal.
The side effects for me are brutal. I'm pretty much curled up in the fetal position for 3 days in severe body pain. Fever, sweating, nausea, loss of appetite, etc.etc...
I saw my doctor today and she was very concerned with the severe reaction that I continue to have. I have an injection coming up this Friday and this one will determine if I continue with Plegridy or not. This time she told me to take Claritin everyday starting Wednesday until the day after the injection and has finally given me pain medication for 3 days.
I really hope this works for others and they have better results than I've had.
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Litaluv - Sorry to hear you're having a rough time. It may just be that Plegridy isn't the right medication for you. Fortunately, now there are plenty of meds to choose from.
Tecfidera was like that for me, it was non-stop suffering once I titrated up to the full dose.
Maybe you'll do better with one of the pills, that would be nice to not have to deal with injections. Copaxone is an injection, but it's not an interferon, so no flu-like symptoms, but the side effect is injection site reaction.
Let us know how it goes and what your doctor recommends if you need to switch meds.
Good luck and feel better!Dx'd : 10/30/2002
Started Copaxone 12/16/2002
Currently on Rituxan
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Study on FLS in Plegridy
FLS - that's flulike symptoms.
There's a study going on right now - I'm part. It's to see how the flulike symptoms affect people switching from other DMDs.
It seems that people who have already taken interferons don't react with FLS in the same way as people taking an interferon for the first time. And those who were taking the "higher dose" interferons (Beta - a shot every other day) seem to react less than those taking the less frequent dosages. So you might be able to take Plegridy later on without these symptoms if you so choose.
I'll say that I haven't had any FLS. But I also have always been very careful to pre-medicate (whether Plegridy or Beta), and I usually take the shot before bed, so I sleep through any symptoms. And last summer I started using Tylenol arthritis formula because it works over an 8 hour time period.
The only issue I've had is red patches at some injection sites. I would get them with Beta, as well. It doesn't happen every time, and it's been different on different body parts. But the last two Plegridy shots - both in my arms - caused really big welts that were really itchy. The doc had me take Benedryl for the first one. The second one, I used prescription-strength hydrocortisone 2-3 times a day as soon as I saw a red patch starting.
The difference for me with Plegridy was that the red patch became annoying around day 7, and reached its worst point around day 11. I'm betting that has to do with the absorption/time-release effects of the pegylation.
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Site reactions
Originally posted by Litaluv View PostI was diagnosed in November 2014 and started on Plegridy immediately. I know that everyone is different, but my experience with Plegridy has been horrible. I've had a site reaction for each injection which has been the size of the palm of your hand. Each one has taken a month to heal.
The side effects for me are brutal. I'm pretty much curled up in the fetal position for 3 days in severe body pain. Fever, sweating, nausea, loss of appetite, etc.etc...
I saw my doctor today and she was very concerned with the severe reaction that I continue to have. I have an injection coming up this Friday and this one will determine if I continue with Plegridy or not. This time she told me to take Claritin everyday starting Wednesday until the day after the injection and has finally given me pain medication for 3 days.
I really hope this works for others and they have better results than I've had.DX'd in 2011. It's a struggle but one that makes us all stronger.
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Originally posted by Shutmedown View PostLitaluv, I did my first shot on Jan 16th and the next day my site reaction was about the size of a quarter. It is now 10 days later and the site reaction has grown to the size of a softball and is itchy. Did your doctor say if it was an allergic reaction or is it an infection? I need to make an appointment to see my doctor but i also don't know if it is just because it was my first shot. Any advice would be helpful.
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.
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Firefox - looks like we're on the same schedule, I'm just one shot ahead of you. I just did shot #3 last night. Hydrated, pre-medicated, slept well - except for having to get up to pee twice. I think I do get kind of clutzy after the shot, I'll try to pay attention to see if there is a correlation.
So, I'm up to the full dose and I feel about the same as I did for dose #2. I have an on and off headache and some body aches, although I got a massage yesterday due to very tight painful neck and shoulder muscles earlier in the week.
Took more Tylenol around noon. It's just kind of meh, not feeling 100%, but not terrible, seems doable for every 2 weeks.Dx'd : 10/30/2002
Started Copaxone 12/16/2002
Currently on Rituxan
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Getting out of bed in the middle of the night to go to the bathroom always seems like a chore. With this second shot the night of the shot seemed fine, the second night was a real chore. I got up and couldn't stand, then I had to hold on walking to the bathroom. I got up to go to work and felt a little more off balance. Around lunch time all side effects were gone.
Never make the mistake and have a drink or two the night of the shot. I can't speak for Plegrity yet but I can about Avonex. Given they are both interferons I imagine the results will be the same. Talk about a drunk trying to stand up and walk.
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Last night was injection #3, the first full dose. injection in the stomach with no side effects. I think for me this is a good place to inject as the thigh was really bad.
I took the shot last night at around 11;00PM premedicated and went to sleep. Woke up this morning with the same stiff clumsy legs as the last 2 shots. it seems to be tough walking after the shot. Here it is about 12 hours later and I'm starting to get the standard FLS, chills, joint pain, hard walking etc etc.
The only thing I remember from the first 2 shots was this should all be gone by dinner.
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Last night injection #4 in the stomach with no site reaction. Did it the same shot at 11:00pm premeditated and went to bed. No adverse reaction for the first 12 hours but at lunch FLS set in and I had chills and clumsy walking. Now after dinner it all seems to have gone away. I hope this means it's getting easier.
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After 6 months
Originally posted by Foxfire View PostLast night injection #4 in the stomach with no site reaction. Did it the same shot at 11:00pm premeditated and went to bed. No adverse reaction for the first 12 hours but at lunch FLS set in and I had chills and clumsy walking. Now after dinner it all seems to have gone away. I hope this means it's getting easier.
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