My First Pegasys Injection

Yesterday, I had my first dose of Pegasys.

I was really excited about it, because we are hoping it will address my ET symptoms.  The medication was delivered via FedEx on Tuesday.  It just so happened that they delivered it while I was at the Cancer Center, getting my lab work done.  I missed the delivery by 9 minutes.  When I got home, there was the box on my porch.  Pegasys needs to be refrigerated, so the vials were surrounded by ice packs.  There are 4 vials – one for each week.  What I don’t use from each vial is to be discarded, rather than saved for the next week.  It seems like such a waste to me…I am throwing away enough for a full dose that someone else could be using.  It’s really too bad that there isn’t a way to be able to safely share it with someone who can’t afford it…

The box also included enough syringes, needles and alcohol prep wipes for the month.  Since this is my first delivery, it also contained a Sharps container for disposing of the used needles and syringes.  There was also a New Patient Packet with info on the Pegasys.  Following Dr. Mesa’s instructions, I called my Hematologist’s office and made an appointment for Wednesday, to have them show me how to administer the injection.  I learned later that Pegasys offers THIS PDF file with instruction on self-injection.  Given the choice, I still would have preferred the in-person demonstration, but it’s nice to know that I have the file to refer to, if needed.  Pegasys also offers a VIDEO, showing how to administer a Pegasys injection.  The video deals with pre-filled syringes, but even if you don’t use the pre-filled syringes, and draw the medication from a vial instead (like me), it is still a very helpful video to watch.

I went to the appointment, and the nurse showed me how to do the injection.  I administered the injection, and that was that.  It was very easy to do.  I realized that my worries had been about how the actual injection would feel.  I’d given injections before…okay, they were to my horse and dog, but I had the basics down ;)…and I’ve been stuck with a needle plenty of times with no problem, but I was worried that I wouldn’t be able to follow through on myself.  As it turns out, you barely feel it, because the needle is very small and short.  It is the same type of needle used for insulin injections.  So I left the clinic feeling very good about the whole process.

Now, had I written this post immediately after getting home, I could have ended on this happy note.  Since it is now about 30 hours later, I have a little more to add.

I did fine for about 4 hours.  I felt really good, Facebooked my friends about how well it went, and was feeling very optimistic about the whole thing.  Then I started to feel a little achy.  Then the aches got worse.  MUCH worse.  Like nothing I’d felt before.  Then the chills started.  I don’t think I had a fever (I couldn’t find the thermometer easily, and was not up to doing a heavy search), but I felt like I had a cold wind blowing on me.  I felt icy cold.  I was glued to the couch at about 6 hours after the injection.  About 2 hours after that I was in tears from the pain.  I am not a crier, but boy did I cry last night.  Hubby helped me upstairs, and I took my other meds.  I couldn’t drink enough.  I felt like I had glue in my mouth.  I learned later that dry mouth and heavy thirst are also side effects, along with the aches, pain and chills.  I finally got in bed about 8 hours after the injection, but I could not fall asleep.  The pain and discomfort kept me awake, and tossing and turning.  It hurt to move, but it hurt to stay in the same position.  I did doze off once or twice, but as soon as I’d move in my sleep, the pain would wake me up again.  I got maybe an hour or two of sleep, in bits and pieces.  Finally, towards morning, I started to be able to sleep as the pain started to ebb.

I woke up again, early morning, with a terrible headache.  It kept me from being able to fall back asleep, even though the aches and pain were now tolerable (although still present).  I waited for 9am, Arizona-time, and called Mayo to tell them about my night and ask if it was okay to take Ibuprofen with the Pegasys.  First, they told me that I could take Ibuprofen (Advil) or Acetaminophen (Tylenol) with Pegasys safely.  Then, the nurse explained that the side effects were what they meant when they said my body has to get used to the drug.  They assured me that each time I have an injection, the side effects will be more tolerable, until they aren’t present at all.  That’s all I needed to know.  If I had to deal with that, one day a week, as long as I took the Pegasys, just to get rid of my symptoms, it would not be a trade-off I’d be willing to make.  But, I can deal with it for a while if I know that eventually I won’t have to deal with it at all.

And yes, the ibuprofen got rid of the headache ;).

I was able to finally doze off around 1pm, and slept on and off until hubby got home from work at 5.  I did try to eat a little for dinner, but now my stomach is churning.  Another side effect.  I’m still pretty thirsty, and have mild aches, but the headache and other pain is gone.  I think I’ll sleep pretty good tonight.  I’ll let you all know how next week’s dose goes.

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~ by julie70 on January 27, 2011.

3 Responses to “My First Pegasys Injection”

  1. My goodness Julie! What an ordeal you have been through. I certainly hope those side effects subside very soon! You are brave to inject yourself. My sister-in-law has MS and gives herself injections everyday too, but I don’t know if I could do it. Thanks for updating us. Feel better soon!

    I will not be going to the MPD support group meeting on Sunday. I have to work. If Brad gets home by then, he may go, but he is currently in FL.
    Pat

  2. Hello, i was wondering what’s the price of the pegasys, and could it be shipped outside US?

    • Hi Tarek,
      I’m not sure about the cost. I am very fortunate to have good insurance that only requires a small co-pay each month. I’ll see if my pharmacy can give me the answers to your questions when I talk to them again in a couple weeks.

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