Ninth Gammagard S/D Infusion

I had my infusion yesterday at my boyfriend's house. I wanted to do it early so that I would be able to have a glass of champagne on New Year's Eve. I found out the rough way that if I have alcohol within a day of my infusion that it will make me feel truly awful due to the dehydration that it causes.

I noticed that I was feeling a bit dizzy and anxious when we were getting ready to do the infusion, so I asked him if he felt comfortable doing the infusion if I were a bit dopey on Benadryl. I had been feeling sick and tired for the previous 2 days, and, as usual, there are too many variables to really know what was going on. I may be fighting off an illness. I noticed that I never had the anxiety issues with the Benadryl in my system and that it would calm me. I only took one so that I would still be able to coach him as needed. He was wonderful, and did all of the needles for me. Some of the needles hurt due to the Gammagard having gotten into them, but it didn't phase me. I took the 2nd Benadryl after the infusion had started and took all the regular premeds at the appropriate times. I had to take my rescue inhaler periodically during the infusion, and more Tylenol (as I had a headache that wouldn't go away, but didn't take more Benadryl. The infusion took about 7.5 hours with me closely monitoring the pump to change the syringes.

Benadryl (AKA Diphenhydramine)

Tylenol

This was the first time I used the 6mm needles in my thighs, and at first I was excited because it seemed to be so much more comfortable than the 9mm needles. I stayed awake throughout the infusion and didn't put any serious pressure on any of the needles, but about halfway through my infusion one of the sites started stinging severely. I asked my boyfriend to look at it and he noticed that the Tegaderm was lifting around the needle, and when I got to where I could sit down and look at it in good light I saw that the site was actually leaking. I tried putting a pressure bandage over the needle to stop the leaking, and it seemed to work at first, but then it started up again. I had to clamp that needle off and finish the infusion in 4 sites.

Today the sites still look white and swollen (which is unusual for my thighs), and I've come to the conclusion that I need to go back to the 9mm needles. I think that the extra stinging is due to the fact that the Gammagard wasn't getting into the fat layer but was going in between layers of my skin. With the 9mm needles I would have leaking after an infusion, but never had leaking during an infusion. I'm glad that Accredo let me try the 6mm needles without taking the 9mm needles off of my order.

I took my second Prednisone this morning and have had some irritability and gloomy thoughts today, but I seem to be breathing well and feeling relatively well. I still don't know whether I'm getting sick or not. I sincerely hope not.

7th Gammagard Infusion...An Odd...One

So I had my 7th infusion today and something very odd happened. After the needles had been in for about an hour I noticed blood under the adhesive. It wasn't a lot, but enough to soak all the way out and stain my clothes after about 10 minutes. I called my nurse to find out what to do as I'd never encountered that before. I did check the sites before starting the infusion so I knew that it wasn't in a vein.

My nurse told me to clamp off the tube and apply pressure to the site (which freaked me out a bit since that seems that it would mean pushing the needle in even further). I applied pressure directly next to the needle and after about another 20 minutes or so I could tell that the blood was starting to coagulate and look darker, I'm not sure when the bleeding actually stopped though. After about 30 minutes I unclamped the tube again and let it run.

During the infusion I had more shortness of breath and tight-chested feeling than I did the previous time. I took my inhaler a lot, and ended up getting the jitters. This time I'd taken 20mg of Prednisone and 2 extra strength Tylenol ahead of time, but forgot to take the 50mg of Benadryl until the infusion had been going for at least 30 minutes. I forgot to take my inhaler for about an hour.

This infusion only took 6.5 hours because I made a point of paying attention to the syringe-change time. I wish I'd noted the correct time in my log so I'd know exactly how long it took, but I was very tired today (I've had trouble sleeping since Monday night), and I just absentmindedly jotted down 4:00 PM, but it may have been as late as 4:15.

I took another 2 Tylenol about 3.5 hours into the infusion, as I felt a headache trying to start. I took another 2 Benadryl at about 11:30 (after the infusion), and I'd taken the 2nd prednisone around 9:00. The prednisone is kind of touchy, as I need to take it with food, but I'm supposed to take it 1 hour before and one hour after. Instead I take it with lunch (or whatever meal I have as I'm getting things set up), then if dinner seems too close to the start time, I have a good-sized snack later. Tonight I had 2 snacks: a bowl of uncooked oatmeal with chocolate milk (yummy...you should try it), and some leftover spaghetti about 3 hours later. It's abnormal for me to get that hungry that soon after eating something substantial, so I think the prednisone is increasing my appetite. 

The infusion ended at about 10:30 PM, and it's now nearly 3:30 AM. I'm tired and I hope that I'll be able to sleep through the night. That's doubtful though since I drank over 100 Oz of fluids today and will probably wake up for the bathroom a lot.

First Solo Infusion of Gammagard S/D!

The people at Accredo were great and sent me tubing to help slow down my infusion rate, so I expected things to be much better.

I made some rookie mistakes this time:

• Took my premeds 20 minutes after adding the saline to the powder. By the time I was ready to put the needles in I was pretty dopey from the Benadryl. It took 2 hours for the powder to dissolve completely, and another hour for me to get the needles in. Next time I need to take my premeds when I'm ready to start hooking up the needles.
• My nurses had suggested that I clamp off all needles but 1 to prime them, so I tried that this time. I primed 1 needle and put it in. Then I primed the next one, forgetting to clamp off the needle that was in me before pushing on the syringe. It hurt quite a bit to get the medication in at that rate, so I learned my lesson quickly. Probably wouldn't have done that if I hadn't been loopy from 50mg of Benadryl.

Throughout the infusion I had pinching and swelling at the infusion sites that I hadn't clamped off during priming, and had to turn the pump off twice for 15-minute breaks to allow the medication to absorb. It took me 3 hours from the time I started mixing the Gammagard S/D until I started the infusion, then the infusion itself took 5 hours due to using 60ml/hr tubing and taking breaks.

Because I'd taken 2 Benadryl 2.5 hours before starting the infusion, I took another 2 Benadryl 4 hours later and really struggled to stay awake long enough to swap out my syringes in the pump. After another couple of hours I had a slight fever (99 degrees, but my normal temp is 97-ish), headache, and was starting to feel achy in my lower back, so I took 2 more Tylenol.

After the infusion was over I felt a migraine trying to start at the base of my skull. I didn't want to take any more Tylenol, but I took 2 Aleve (not supposed to because of my stomach) and a Clonazepam to help relax my muscles.

Next Day...
This morning I woke up with a migraine threatening (not too bad though, I was still able to work). I took 2 Tylenol without it helping much, and took to Ibuprofen after a few hours when I wasn't getting much relief. I finally called my chiropractor and he was able to help a lot by massaging at the base of my skull and my shoulders and neck. I've been tired all day and worked on my laptop in bed because I didn't really feel energetic enough to sit at my desk all day. Nevertheless, I think this is the best drug for me of any that I've tried so far. My reactions to Carimmune and Hizentra were pretty bad, with the Hizentra being worlds better than the Carimmune. I really believe that my non-existent IgA is a huge factor in how they affected me.

My First Gammagard SD Infusion...or....When You Feel Ready to Give Up On People, Read This!

Today I did my first infusion with Gammagard SD. I left the supplies and Gammagard in the box until yesterday morning, then I decided we were close enough to infusion time to set things out. I pulled out the gammagard boxes and got a bit of a scare. I knew that the medication was in powder form, and one of the ice packs had burst inside the styrofoam ice chest that it was shipped in. The Gammagard was packaged in plastic, but nevertheless, the ice-pack goo had soaked into the boxes--at least two of the boxes were moisture-soaked and splitting open. I was honestly afraid that the powder would be ruined and I wouldn't be able to do my infusion. I called Accredo to tell them what happened, and spoke to the warehouse manager. She informed me that the medication would not be compromised because it was sealed in a bottle within the package. I opened it up while on the phone and confirmed that the medication was all fine.

It was really interesting mixing the Gammagard. It is a powder that comes in a glass bottle with another bottle that contains sterile IV water. The nurse had me transfer 96mls of water to the powder bottle using a 60ml syringe. After combining the two, we had to let the powder mix in to the liquid. We couldn't shake or stir the powder in, and simply had to roll the bottle to gently mix the powder in. It took about an hour from the time that we combined them until the Gammagard was ready to infuse. The total volume that I infused today was 110 ml, and I'm honestly not sure how many hours it took.  The rate tubing that they gave me was very slow (as subQ rate tubing goes) at 120ml/hr, yet the infusion was much too fast for me. My legs (where I put the needles) were stinging and turned red and swelled significantly, although it probably wasn't as bad as on my stomach. I also was having some breathing trouble. When I showed my nurse the infusion sites, she had me turn off the pump because she said it was going too fast and that I wasn't absorbing the medication fast enough to keep up.

So...in addition to my infusion, my mom was having a crisis. For about 10 days she's been having trouble walking with one leg hurting and feeling heavy. Suddenly, yesterday before the nurse arrived, her leg started hurting so intensely that she couldn't put any weight on it. She came to my room using a carpet sweeper as a crutch. I had her lie down on my bed and we propped her leg up on pillows. I didn't know what to do as I was unable to drive (license taken away due to seizures), and I couldn't leave before my nurse showed up. When the nurse arrived I filled her in on my mom's condition, and she was concerned too. She said that if no one else could take mom to urgent care, that she would take both of us in after we got my infusion started.

The nurse arrived at 3:15, and because of waiting for the medication to mix and some things I had to do to get ready, it was at least an hour (maybe 2) before we started my infusion. She wheeled my mom out to the car in my wheelchair, and I put together an emergency bag for my infusion to take with me. Because I was infusing 110ml of fluid and the pump only accommodates 60ml, I had to take an extra syringe full of medication with me and ended up swapping out the syringes in the office at urgent care. We were at urgent care for 2-4 hours, and then sent to the ER. My nurse then drove us over to the ER, and she told the check-in nurse that we had to leave my mom there (mom was all for this) because of my immune deficient state. My nurse insisted that we get something for mom to eat before leaving, as by that time it was about 10:00 PM and none of us had eaten. She and I ran over to In & Out (nearest open place selling food) and she bought dinner for all 3 of us, then as we got in the car, a man knocked on her window and asked if she could jump-start his car. She turned the car so that the headlights were on his car and gave him a jump-start. She was very smart about it though, she popped the hood of her car from the inside and locked the doors. Turned out he was just an  honest guy with a dead battery.

After we dropped the food off with my mom, my nurse took me home and then headed home herself. I couldn't believe how gracious she was about everything all day, and she maintained a good sense of humor too!

I was worried about how my mom was going to get home. My brother lives in the area, but I couldn't reach him by phone, and my boyfriend lives 50 miles away and would have come except that he was sick and in pain himself. I'd given mom cab fare, but wasn't sure how she was going to get in when she wasn't even able to walk. I heard one of our roommates get home, and I told him what had happened and asked him  if he happened to hear her outside if he would let me know (his room is by the front door). He promptly offered to go pick her up and asked me to call her. I did, the doctor had just finished seeing her, and they released her. He went to pick her up and they got home about 1:00 AM.

People were really wonderful yesterday! 

About 2:30 AM I started getting a migraine (despite lots of hydrating in advance), so I took a Fioricet, and aside from some weakness and tiredness, I feel pretty good today!

I Just Got Approved for Gammagard SD!

My nurse from Accredo called today to schedule an appointment to train me to use Gammagard SD as subQ! I'm so excited! She will come next Thursday 11/4. She said to expect her late, which is fine with me because I will be working that day.

The pharmacist from Accredo also called and she said that I will be getting 10g of powder once a week. I don't know what volume that will reconstitute to, but she said I will still be using the Freedom 60 pump (which only holds 60ml of fluid, the same dose of Hizentra that I'm on).

Update

The specialist called and told me that they've started the process of authorizing the switch from Hizentra to Gammaguard SD with my insurance company. They are planning to have me start at one treatment a week. She also said that the specialty pharmacy (Accredo) said that if my insurance is cooperative then I could be transitioned in a as little as a few days. I'm planning to just skip treatment this Friday since even if it all gets approved this week, they won't be able to get the supplies to me in time.

If my insurance company causes problems or drags their heels too long, I might have to go back to doing Hizentra, but the doctor said that they'd give me steroids so I could get through it without a reaction. I really hope that doesn't happen! Wish me luck people! :)

Even though it's now days after my last infusion, my legs where I inserted the needles are still very itchy, and I'm getting a rash there. Last night the sites were lumpy, not from a build-up of medication this time, but from the rash.

Second Hizentra Treatment! :)

I woke up infusion day with my stomach still feeling unstable, allover body weakness, and sore muscles from vomiting. I showered, got dressed, and was just reading my support group page when my nurse arrived. This time I knew what I needed for the treatment and set everything out, only checking with her once I thought I had everything ready. She showed me an alternate way to get the medication into the syringe that I like better than the way she showed me the first time because it puts fewer bubbles into the medication and is still easy enough for me to do it.

I really appreciate that Accredo overnighted the extra supplies that I would need to have a more successful treatment to me. The package included larger needles, quadfurcated tubing for 4 needle sites, and smaller rate tubing so that my infusion would go more slowly--allowing the medication to be absorbed while it's being administered. My nurse requested the larger needles so that it would be easier for me to get my medication into the syringe, and I'm so glad she did!

For this treatment I took a Zofran for nausea as well as Benadryl, and after awhile I decided to take a clonazepam as well because my nurse had said that it helps relax the muscles, and after the last treatment my neck and back muscles were so stiff and sore that I think it contributed to--or maybe even caused--my migraine.

Because of the slower rate tubing it took about 3.5 hours for my infusion this time, but it was so worthwhile! I have very small welts at some sites, and none at all at others!

I woke up this morning (first day after) with no migraine, but weakness and tiredness, however; those could be due to the vomiting from the day before my infusion. Overall it's been a good day and I'm feeling highly encouraged! :D

Fourth Day After Hizentra

I woke up this morning and my headache had returned with a vengeance. It was nearly as bad as when I woke up Saturday morning, but not quite as intense. I really regret not hydrating...I think I learned my lesson!

I called Accredo's 24-hr helpline, and they put me through to the pharmacist at my local branch. The pharmacist suggested that I talk to my doctor and:

1. Take Tylenol in addition to the Benadryl
2. Use the skin protection patches to see if that helps
3. Call my doctor to find out whether she can give me a Rx for prednisone that I can just take during the infusion. She said I need to tell the Dr about my reaction including the flu-like symptoms.
4. I already take Rx allergy meds, which was her other suggestion.

Immediately after hanging up with the pharmacist the phone rang again, this time it was my nurse. I thought she was calling because of my call to the pharmacist, since they're out of the same office, but it was just a coincidence. She was calling to make arrangements to see me on Friday for my next infusion. We talked about my side-effects and she mentioned that shorter needles might help me. I guess if the needles go into the muscle, they can cause more of a reaction and trigger some of the inflammation that I experienced. She said she will talk to the team about what I experienced, and see what they can do to help me.

Later...
My nurse called me to say that she talked with the team at Accredo, and they decided that it would be best to slow my infusion down even more. I'm absolutely in favor of that since infusion speed was a huge factor in how I felt after my IV infusions. She also reiterated that as my body adapts to the treatments I should experience fewer side effects. She said that they're concerned that if they use shorter needles there's a potential that they might miss the fat layer and pump between layers of my skin--which would be a problem, so they're going to stick with the current needle size. I haven't yet received the new tubing, but I hope that I will get everything tomorrow or Thursday at the latest.

I also saw the chiropractor today to get help fighting the headache. He found a lot of really tight muscles in my back, neck and head that were contributing to the intensity of the headache. He worked them over and told me to rest. He also said the heat on my neck and shoulders was better than ice, and would help with the headache.

Hizentra Day!!

I woke up this morning and remembered that Accredo had sent me a box of latex gloves, so I called the number that they gave me (where I'd talked to the nurse coordinator), and asked them if the nurse could bring a box of latex-free gloves. The nurse coordinator actually answered the phone directly and told me that my nurse was reading my chart last night and noticed that I'm allergic to latex and decided to bring me some non-latex gloves of her own accord. I thought that was so cool! :)

I also asked about pre-meds since no one had mentioned them and I wasn't sure whether I should take anything before the nurse arrives. They told me that the nurse would have me take a Benadryl 30 minutes before we start the actual treatment, and that she would tell me when to do it. For my IVIG I currently get 50mg of Hydrocortisone, 25mg IV Benadryl, and 0.5mg Clonazepam, so it will be interesting to see how this goes with only Benadryl. They told me to go ahead and take Ibuprofen or some other painkiller, but I'm not supposed to take them due to stomach issues and drug interactions, so I'm just going to see how it goes without. I have had a headache all morning though, so I might give in and take something.

The nurse coordinator has called twice to tell me that my nurse will be later than expected. I don't mind, since she's helping someone else, and I know I don't want to be rushed through my treatment so I can't get upset about her not rushing someone else's. I also planned in advance to take the whole day off of work, so I don't have any pressures.

Hizentra Arrived this Morning!!! :D

I'm so excited! My Hizentra and supplies arrived this morning! I'm scheduled for my training with the nurse and first treatment in 2 days!

Box of SubQ Supplies

Box of Hizentra

I was a little overwhelmed by the size of the boxes. The Hizentra was packaged by itself in a Styrofoam cooler with ice packs, which is good because there's no shade on the patio, and the Fed Ex guy just left it there. The pharmacy said I could actually tell them to get a signature and make sure that it's delivered to a person, but I was afraid that I'd miss him and then have to deal with going to pick up the boxes...I just didn't want that extra hassle.

The other box contains literally everything that I will need for my infusions. The latex gloves are a problem for me as I have a latex allergy, but I'll straighten that out with the pharmacy. I don't know whether they send all the supplies every month, or if it's just a first-time introductory thing. This box contains gloves, tape, a lidocaine cream, an EpiPen (I think that was special-ordered by my doctor), a sharps container, alcohol swabs, bandages and clear patches to hold the needles in place, all the tubing, syringes and needles I will need for awhile, and the infusion pump with a carry-case. This box is kind of intimidating, but I'm just going to leave it sit and wait for the nurse to walk me through everything. If I get some energy later I'll lay things out and take a picture of what they sent me.