Thursday, July 12, 2012

Worst IVIG yet...treatment #5


Yesterday afternoon, I had IVIG infusion #5. I had really hoped that IVIG infusion #4, sucky as it was, would be the last, but my reproductive immunologist's blood work showed a spike in my TH1:TH2 levels...not just a little jump, but a good sized one, so I reluctantly opted for another treatment. I did refuse, after how dreadful the last infusion was, to do it in the office again. He must have heard in advance from the nurse that there was no way I would agree to that again, so he relented and let me have the treatment at home with a private nurse (I have to pay for her time if it's in the office too, so this was not an added expense).

If done at the usual speed, it's a four hour infusion. I usually feel "okayish" for the first half hour or so and then get clammy and cold and pale, then get a low-grade fever, which starts to lower by the time the infusion completes. They dose me up with two tylenol and two benadryl ahead of time, so I'm a bit groggy.

This time, I actually felt pretty good at first and opted to sit up on the couch and read for a bit...then all the sudden, I thought I should probably lie down. By the time the nurse got me into bed with the IV hung up, I was shaking violently. I couldn't tell if I was having chills or just tremors of some sort. It was a bit wild. I also felt very short of breath and was kind of panting. She wanted to turn off the infusion, and I wanted her to keep going (so we could finish and she could leave). We ended up turning it off until the shaking reduced some and then continuing. I spiked the usual 101 degree fever, but then was able to sleep through a couple of hours of it, which helped a lot.

So one more infusion behind me. But yuck!

The whole time I was shaking and feverish, I was worried about Ms. Magpie. If *I* was having this reaction, how was she doing? Was this hurting her in any way? She was very quiet last night and into this morning, which had me worried, but by mid-day today she was her usual kicky and squirmy self (much to my relief).

My reproductive immunologist is making noises about me continuing this treatment until I reach 34 weeks.

God, I hope not. Of course I would do anything to make this pregnancy a success. I just wish I believed in this treatment a bit more (at all?).

Mo



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31 comments:

sara said...

That stinks! I hope you are feeling better now! Rooting for you over here!

gwinne said...

Oh, Mo, that sounds absolutely horrible.

I'm totally ignorant when it comes to IVIG...I'm curious about why he'd want you to stay on it so late in your pregnancy. While I can understand how immunological issues play into miscarriage, what's the thinking about second and third trimester events? I mean, you're already on lovenox to deal with potential clotting that could lead to placental issues like IUGR.

Anyway...hope you're feeling better soon. That sounds truly awful.

Sarah said...

So sorry that it was such an ordeal for you. Still, whatever else happens, that's one more IVIG that you never have to do again.

Best wishes to Miss Magpie as always.

nurslouisa said...

Oh man that sounds horible! I'd check with the OB about continuing, I know fevers while pregnant are generally frowned upon. Hope you feel better now.

sprogblogger said...

Ugh. I am so sorry it was so horrible! Glad you were able to time it the way you did, and glad you're feeling better today, but sorry you had to go through that--it sounds wretched. Was so lovely seeing you this week, though!

dawn said...

A bit different of a thought here: you're still pregnant. You've only done IVIG this time around. Yeah, it totally sucks to have IVIG. Yeah, we don't know all that much about the benefit of it. But you are STILL pregnant. I guess I'm thinking that this formula of what has worked is really hard-won for you. That said, I'm not living in your shoes, and I can completely understand how you'd be worried about how the baby is feeling through this. With this whole IF journey, there is NO right answer. Which is probably the worst thing, for those of us who are Type A
& OCD!

Alexicographer said...

Oh yuck -- I'm sorry, I thought those were, indeed, all behind you (even before that one, I mean). Sounds dreadful; I'm glad you were (at least) able to have it done at home.

It Is What It Is said...

Wow, that sounds awful. And then to think you might have to continue through 34 weeks. You will win Mom of the Year before she is even born in my book!

Kahla said...

Yuck! Sending some prayers that you are feeling better very soon and that Miss. Magpie stays nice and put and kicking away! :o)

Melissia said...

As brutal as your response is, it is very telling to me that you need to continue these treatments. It shows that your immune system is very quick to react and perhaps overreact to any perceived threat. Better to have foreign bodies to attack on purpose than Miss Magpie's in some misguided attempt at self preservation. That said, that is just my interpretation of events and you should of course discuss everything with your doctor, but this is the basis idea behind IVIG therapy, so it is not unusual to feel terrible when receiving it. I use to administer it when I was working and many people were very sensitive to it.
Hopefully you will not need many more if any treatment.

Augusta said...

that sounds terrible, Mo. I hope you feel better by now, and that you don't need to have any more treatments for the rest of your pregnancy.

Dora said...

Ugh! Horrible! So sorry you had to endure that. Made so much worse by added worry for little Magpie. No advice from me about that, I don't know what I'd do.

I was going to see if you were in town this weekend, but Sunshine has a cold. I won't expose you to her germiness. And you take it easy. Maybe the following weekend? xoxo

CAS said...

So Sorry you have to go through all this! Wow! You are a trooper is all I have to say. Glad you opted to do it from home.

What IF? said...

That sounds truly awful. I hope you're feeling much better today and that you'll be able to take it easy this weekend.

myfertilityjourney said...

Oh Mo, I thought you were done with those! Ugh! But I'm so glad you are following doctors orders, I know you are not sure if this is what did it but it does sound VERY coincidental otherwise. Those side effects sound awful! You are amazing and I'm so happy you are almost there now! xo

newbie said...

Blech Mo, you are such a trouper for continuing to do these. Does it make sense to consult your OB to see whether they should continue? Seems kind of extreme to continue to 34 weeks!

newbie said...

Blech Mo, you are such a trouper for continuing to do these. Does it make sense to consult your OB to see whether they should continue? Seems kind of extreme to continue to 34 weeks!

Emily Erin said...

So sorry that you're still having to do these, but so glad that little Ms. Magpie is doing well! I hope that this is the last treatment you need!

Deana said...

Ugh, that sounds so awful! I know you must be torn about whether or not to continue, especially with the CCRM doctors' negative opinions about IVIG in the back of your mind. When I went to CCRM, I had 4 different autoimmune issues, and was considering IVIG strongly, but Dr. S was so adamant that it wasn't necessary, so I decided to trust his opinion and not do it. But I also hadn't experienced all of the losses that you did, so I totally understand why you decided to go for it. And like the others have said, maybe this is the difference this time? It would be so hard to stop, and if I were you, I'd probably keep doing it, as long as you know it isn't affecting Ms. Magpie. Have you done any research into whether or not it can have any harmful effect on the baby? If not, then I'd say keep it up, even though it stinks. Hope you are feeling better now.

Claire said...

Doesn't sound like fun at all! Crazy the things we go through to maintain our pregnancies when we have to struggle so hard to get pregnant in the first place! But, man through the sleeplessness I'm telling you it's so worth it! Xxx

Pussy Parent said...

Oh wow, you are so strong.

Her Royal Fabulousness said...

I can't believe what you have to go through :( I'm so sorry!

Roccie said...

Feeling good for you and thought you should know.

jacky lavine said...

Hope you are feeling MUCH better. So you do the IVIG and this time you stay pregnant? I do not think this is a coincidence. It seems clear to me that the auto immune issues may be the cause of the miscarriages. G-d willing you will carry Miss Magpie to term. And as awful as those treatments are , you know its well worth it. Hugs.

I am so happy and excited for you all!!!

hugs

Anonymous said...

Hope everything is going well!! Craving an update.

Alexicographer said...

Thinking of you, hoping all is well.

Emily Erin said...

Bump picture, even if you don't have time for a real update..? Hope that all is well...

Anonymous said...

how are you today, mo?

i am noticing on the day-counter that you are on your last day of triple-digits... only 100 days to go! a cause for celebration!

Anonymous said...

Hoping all is well. I think we are all in need of an update.

Anonymous said...

Please update, getting nervous... thinking about you.

Anonymous said...

Less than 100 days to go! You are down to double digits! Getting a little worried since we have not heard an update in a week. Prayers to you that all is well!

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