First series of IVIG this week!

    • Anonymous
      July 26, 2008 at 12:26 am

      Hi, I posted a month or so ago about my respiratory nerve issues and the demyelination that showed on EMG of the diaphragm bilaterally. After going through all the other possibilities, the neuro ordered an empiric trial of IVIG for 3 months, and then we will re-evaluate.

      I know you guys are probably tired of going over the regime, 😀 but humor me and answer some questions, please??

      She did order the loading dose, I think, of 2 gm./kg over 4 days. Because I already have CHF she wanted to not increase the rate per the norm. She did order premeds of Benadryl 25 mg. and 2 Tylenol. So far so good! The first day went well; they ramped up a little slower and maxed out with a rate of 176 cc./hr. They told me their protocol goes up to 400 cc./hr usually, so I am thankful they listened to me.

      I felt just a little weak and tired after the first day. I had a minor headache after the second day, but no biggie. I took Tylenol around the clock. Should I have taken Benadryl also around the clock? The third day the headache gradually increased to about an 8/10 in the evening. I also had major chills, starting in the afternoon and ending with a temp of 100.4. I was not having a true allergic reaction that would mean they would’ve had to stop the infusion. The fourth day, today, I started with a headache about a 3-4/10. The nurse said she had to call the doctor as she might want to not do the treatment today. Thankfully, she just ordered 20 mg. of Prednisone along with the Benadryl and Tylenol. The headache has not worsened all day and my temp only went to 99. They did ramp up the rate every 30 min. instead of 15, and not over 176/hr. I even felt well enough, after lying down for a half hour, to go out shoe shopping!

      Can I expect the next series to go as well? She ordered the Pred for 2 more days. Will I have to continue the Prednisone? They told me that they try to always use the same brand, Gammagard. They have some kind of deal with the manufacturer, maybe? Should I have them try an even slower rate?

      I thought I read on here that we should take the sticker off the IV bag and keep it in a journal. But the sticker would not come off without ripping. Did I read that wrong?

      Last question 😀 ; I know everyone is different, but how soon do people show improvement if they are going to? I will easily be able to tell if my shortness of breath decreases, or my upper extremity weakness/easy fatigueability.

      Thanks so much in advance for any responses!
      Margaret

    • Anonymous
      July 26, 2008 at 1:33 am

      To answer your questions:

      Your symptoms after receiving the IVIG are normal. Emily had the same kind of symptoms in the beginning. You need to find out what kind of Gammaguard they are using. If it is the kind that needs to be mixed then that could be the cause for the headache & chills….we found out that was what was causing Emi’s reactions & then we switched to Gammaguard S/D (it comes as a liquid) and she hasn’t had any problems since.

      One thing we did notice too is that Emily is more likely to have a reaction if she gets “champagne bubbles” in her IV line. Those are the tiny little bubbles often found in IVIG. IVIG is a bubbly medication so the nurse needs to really watch out for that.

      No one can say what will happen each time you use IVIG. For the most part, if you are going to have a bad reaction it’s in the beginning. However a reaction can happen after having received 100 infusions.

      Needing the prednisone is going to need to be a wait & see kind of thing. You might only need to take it for the first few infusions or you might need it every time. Only time will tell with that.

      Some people do medicate with Benadryl around the clock while doing a loading dose. Since you had the headache on days 2,3,& 4 you might want to talk to your dr about taking the Benadryl around the clock for those few days…or at least 1 more time after your infusion is over.

      Your nurse should be recording the batch # off of the IVIG in her nurses notes. You can also just write down the batch # into your notebook. Trying to take that sticker off the bag doesn’t always work out so well.

      No one can really say how soon you should see improvements. When Emily was in a relapse we would start to see improvement on day 3 & then she was back to normal by day 5. However some people might take a few rounds of IVIG to notice a difference. Don’t get discouraged if it takes awhile for you. Just be patient & keep your fingers crossed that it works well. The IVIG needs to go after the bad anti-bodies first. It might take awhile to really get at them as they are probably built up. After that happens then your body can start to heal.

      Good luck,
      Kelly

    • Anonymous
      July 26, 2008 at 1:50 pm

      Margaret – I also get the liquid gammagard and my nurse pools the bottles into a bag and then takes a syringe and removes all the “champayne bubbles” before we start.

      One thing my nurse had me change to avoid those 8/10 headaches was to double my benadryl to 50mg with the premed and I took it an hour before the ivig-maybe your nurse can call you when she is on her way so you can take your premeds, or take them when she gets to your home, whatever way works best for you. But doubling the benadryl to 50 mg took my headache to a 0/10 on the 3rd day.:) I also take 50mg later in the day when I can take my Tylenol again, and it seems to be working much better. Also take Motrin 800mg 1/2 through the ivig infusion each day. That’s the combo the nurse and I have worked out and it works really well.

      Regarding those labels-they are on your nurse’s notes, as Kelly said, and I have been copying the whole note and making my own file. Then I have the lot #, vital signs, and the ramping schedule, etc.. Started that since my home ivig started, so I have a record of everything. The lot # shows up clearly.

      Emma

    • Anonymous
      July 26, 2008 at 8:52 pm

      Thank you , Kelly and Emma for your replies. It means so much to me to get some support. I may not have excruciating pain or be unable to walk, but I do have significant respiratory involvement, and it is serious.

      The nurse gave me the bag from the first infusion and it doesn’t have a lot or batch number anywhere! I asked her if there was another label that she took off the bag and put in the chart and she said no. The bag does say,, “equivalent to Gammagard Liquid”, so it must’ve been reconstituted in the pharmacy. I am having it at a university outpatient infusion center.

      I DID notice that there were a lot of bubbles. The nurse paid no attention to them at all. She was running around like a wild woman as they were very short staffed all four days. So I will be sure to watch that next time!

      I forgot to mention that as I was dozing in the recliner, on the third and fourth day I kept waking up with numb fingers. Now I do wake up every day with numb fingers and hands, but I think from nerve compression. This time my hands were just lying there and not clenched or anything. I thought it was a bit odd.

      I also noticed that my respiratory rate was elevated during all the infusions, and that I was having a ton of arrhythmias. I am prone to them anyway but never saw them mentioned as an IVIG side effect. There was nothing to be done about it anyway. My oxygen level was fine throughout.

      So thanks again, and I am trying not to get too excited about any changes I’ve noticed! Time will tell.
      Margaret

    • Anonymous
      July 27, 2008 at 6:16 am

      [QUOTE=maggiemag]

      I forgot to mention that as I was dozing in the recliner, on the third and fourth day I kept waking up with numb fingers. Now I do wake up every day with numb fingers and hands, but I think from nerve compression. This time my hands were just lying there and not clenched or anything. I thought it was a bit odd.

      I also noticed that my respiratory rate was elevated during all the infusions, and that I was having a ton of arrhythmias. I am prone to them anyway but never saw them mentioned as an IVIG side effect. There was nothing to be done about it anyway. My oxygen level was fine throughout.

      [/QUOTE]

      Hi Maggie,
      Glad you are finally getting treatment! As for the finger numbness, this happens to me sitting in the recliner as well, for me it’s the pressure on my elbows so it helps to move them around a bit (tough with the IV line) and it’s also when they are bent, even slightly. I also get what I call the skippy-flippy heart rate during infusions, I suspect it’s due to the combined assault of Benedryl, Tylenol and the Ig solution and it typically goes away within a few days. As for the label thing – since they are reconstituting it for you before you get there you might want to explain to them that you are keeping a record and need to have the batch numbers, you might even go so far as to create a little form for them to fill out and give to you to make it easy for them.
      Good luck!
      Julie

    • Anonymous
      July 27, 2008 at 10:15 am

      Thanks for all the answers I was just getting ready to ask. I have never had this before and have been scared about having it. But when you get so sick you will try anything then to get better. Hope all goes well for you and you start feeling better soon. I hope we all get well from this stuff!

    • Anonymous
      July 28, 2008 at 8:44 pm

      Hi Maggie, Just checking in to see how you are doing. How were the headaches?
      Tomorrow I get my next two days of ivig and switching from Motrin to Aleve to see if that makes a difference. Hope it helped you.
      From the last two weeks since I have been premeded with Tylenol and Benadryl, I had 0-2/10 headacdhe. Fatigued and in bed 2 days, Nausea twice in the last 2 weeks. Able to go grocery shopping, with help of a friend, but walked both huge store hanging on to a cart. No cane. Friend stated I did very good. 😉 Course I didn’t say that my legs were on fire plus both legs felt like lead. And to think that I walked 15 miles a aweek-doubt I will get back to that. But like I said before, I started with a walker and now use a cane once in awhile. And I have a combination of remit/relapse and progreccive. Not sure what helps what, but really feel like I have relapsed. So we will see how tomorrow goes.
      Take maggie. Emma

    • July 28, 2008 at 9:51 pm

      Ladies,
      Keep the faith, Kevie would get that stupid aseptic meningitis reaction EVERY time. The last 2 infusions, the headaches have been minimal, no more puking, fevers, chills, etc. It took about 8 months but things ARE good now. I pray that you guys can get relief soon.
      Dawn

    • Anonymous
      July 28, 2008 at 11:19 pm

      Thanks for checking in, guys! I really do feel lucky, actually, as I only had the bad headache just one day and really just the one night. On Friday it was about a 2/10 and none on Saturday, and no more fever or chills. I think the Prednisone really helped, even just 20 mg. per day. Because I already have CHF, Aleve and Motrin and the like are not recommended, but Tylenol is ok. 😎 I did feel like my arms were stronger and less pain, and I thought significantly less shortness of breath on Sat., but more on Sunday. And today I have been sooo tired that I took an almost 3 hour nap! So the jury is still out! Keeping my fingers crossed for some hope!

      Emma. I hope your infusions go without consequence this week! Sending good vibes your way……..! 🙂

      Linda, glad to have beaten you to the punch with my questions! I’m sure I will have more the next time. I do think it was a bit scary starting the whole process. Luckily the nurse had already started the infusion and the first 15 minutes were already over before I noticed! Otherwise I would have been mentally reviewing all systems looking for a severe allergic reaction. I am trying to get them to let me have the next round out of town, as I am supposed to go to Michigan. I told them I would be glad to see the local neuro if they want. Just let me go and I will jump through any hoop they dream up. There is even transportation if I need it. Do you people drive yourself, if you can, or get a ride because the Benadryl makes you sleepy like me?

      Mags

    • Anonymous
      July 29, 2008 at 12:24 am

      Maggie, After 8 years of getting the ivig in a hospital outpt setting, the last two sessions were at home-I blame some of my numbness on an uncomfortable lounger and the room was always cold, because my nurse was always running in between patients and was sweating. I was wearing hooded sweatshirts and turtlemecks and long jeans just to try and stay warm. It helped and I walked up and down the halls whenever they let me.

      I drove myself to the hospital, but at the time, I was only premeding with Motrin. Still, by the 3rd and 4th days I was draggin. Occasionally someone drove me in, especially in the beginning. Looking back, that was the best route because my balance was so poor. So, if you have friends or family that can drive you, and if they live close, they can drop you off and pick you up. Because of your respiratory problems, the infusion rate is slow right?

      Hope your next ivig goes as well as the first.
      Thank you for sending me good vibes.
      All my best, Emma

    • Anonymous
      August 3, 2008 at 3:38 am

      Mags-where in Mich are you coming? Many of us get our ivig at home and others at the hospital outpt unit and the local neuro could set either one up for you. Have a good trip. Emma

    • Anonymous
      August 3, 2008 at 10:39 am

      Emma, thanks for asking. I am going to be near Petoskey, which is pretty far north. They do have a hospital with an outpatient infusion center. I called them and they gave me the name of a local neuro who would have to sign on. He even had an appointment available to see me, but my neuro won’t let me have the IVIG out of town. She gave no reason, but oh well………:( I am on Medicare from SSD and they won’t pay for home infusions. Anyway, the neuro is allowing me to have the next series 3 weeks after the first, instead of 4 weeks, and the following one five weeks later. So I will still be on track and maybe 3 weeks will be better!

      The jury is still out as to whether or not it has helped at all. I DID have one whole day with significantly less SOB, and it really was enough that I don’t think I imagined it! I just cannot push myself that much anyway. Of course it WAS only one stupid day! I also have less pain generally and I THINK my arms are stronger. I dunno…..I do have PFT’s scheduled for about a week after the third series, so that will tell for sure!

      Hope you are doing well after your treatments!

      Mags

    • Anonymous
      August 3, 2008 at 1:06 pm

      Hi Mags, Well one stupid day is a good sign anyway-will be interesting to see what your PFT’s show….what is the problem with your neuro not allowing out of town ivig-geez-you got a neuro lined up-if they have the same brand, don’t understand the big deal-when I go see my son in Hawaii, I have full intentions of getting ivig there-my ins. co. is national coverage-and if you get a neuro to accept the ins., hey no problem.

      Petosky is beautiful country-next to Lake Michigan, I love west grand traverse bay the best-have gone sailing there and recently went up to Traverse City for the cherry festival. Have a great time.

      Emma