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.

Hizentra Reactions

I did my 4th Hizentra treatment on Friday, and I think it will be my last one. Despite taking 2 Benadryl in advance, I started itching all over my body and having breathing problems within about 20 minutes of starting my infusion. 

The bright note of my infusion was that I did it in the outside of my leg...on my thigh, about half-way between my hip and knee. the swelling was minimal, and went out about 2". Today (Sunday) it's itchy and sore, but better than on my stomach. My stomach tends to bloat and get really painful afterwards, but I haven't experienced that with my legs.

The specialist from Stanford called to say that my IgA is below 6--which is virtually 0, and when I'd had my appointment there he said that if my IgA is that low I could be building antibodies to IgA. Anyway, they believe that my low IgA is what's causing my reactions to Hizentra and Carimmune. I think I will stop taking the Hizentra until they can get my insurance to approve the switch to Gammaguard SD.

Two Days After Third Hizentra Treatment

For the Third treatment I took 2 Benadryl as recommended by the specialist, and also took 1 Tylenol. By the next morning all of the swelling in my belly was gone and I only had 1 tiny knot. I was so excited because that was so much better than the previous 2 treatments! I felt like I had some energy and got up, showered, and went about my day. By about 4:00 PM I felt really tired, and my belly had swollen up again and was starting to hurt. I put ice on it, and it really didn't seem to help other than soothing the itching. Knots started forming at the injection sites, and increased in size and pain until they were about 1.5" in diameter. Only 1 site did not develop knots, and I have no idea why that is. I wonder whether the ice contributed to the knots forming, or if my jeans irritated my stomach and caused them? I have no idea...

I realized that I probably should have taken more Benadryl the night of my infusion, that might have prevented the swelling and itching the next afternoon.

Reactions since 2nd Hizentra Treatment

I haven't posted since 2 days after my last treatment, and I'd have to say that this most recent treatment was amazingly better than the first one.

I had a few headaches since then, but none as intense as last week, and I made a point of checking that my muscles weren't tense, and taking a clonazepam if so. I saw my chiropractor again on Tuesday and he said that most of my pain was due to muscle spasms or knots, and worked many of them out. I'm starting to think that the Hizentra (and other gammaglobulin treatments IVIG or SubQ) cause the muscles to tighten up, and may even contribute to knots. Just my theory, and I don't have any kind of medical degree, so take it with a grain of salt.

Overall this week has been much better than last week.

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.

Third Day after Hizentra

I felt pretty bad when I woke up this morning, the headache is nearly gone, but it's more like...like I'm really getting sick. I didn't want to wake up, and didn't want to get out of bed either. I got up, showered and worked, but felt like I was really pushing myself to get through the day. I have chest congestion, a sick taste in my mouth, weakness, sinus pain and pressure, slightly sore throat, I keep feeling short of breath, and feel like I might be getting a cough. A friend from my support group said it might be a reaction from the Hizentra, as she had a similar experience after her first treatment, but I guess time will tell. I took a Benadryl just in case it might help.

I took my temperature. I usually don't bother since even when I'm really sick with pneumonia I tend to not get fevers--in fact, I'm usually at least a whole degree below normal, and so if I'm around normal I think of it as a slight fever. Tonight my temperature is 98.3.

My mom reminded me last night that my nurse had told me to use ice or heat for my injection sites when they hurt. I'd forgotten that, and was just using heat, but it seemed counterintuitive to use heat for swelling, so I tried ice. That was soothing. They have hardly bothered me at all today.

Second day after Hizentra

I woke up with a headache again this morning, and I realized that one reason I've been having such a rough time with this first SubQ treatment is that I didn't take it seriously like I do the IVIG. I had so ingrained myself with the idea that there are fewer side effects from it that I didn't even think to hydrate in advance! I realize now that I need to treat SubQ with more respect, just like I did my IVIG treatments. I need to hydrate the day before, avoid caffeine the day of, and hydrate they day of (and after too).

I have felt very tired all day with a strong desire to sleep. I wonder how long it takes to feel the increased energy that SubQ is supposed to provide? I just took it easy and stayed in bed all day. I hope that I'll be able to work tomorrow, and that I don't wake up with the headache.

Aside from the headache and fatigue, the swelling has gone down on my belly significantly. I almost look like myself again! The knots are about 1/3 the size they were after the infusion on Friday. I used to wonder what people meant when they talked about "knots" in regards to SubQ, and now I know! They are large welts (about 3" in diameter) that are hard to the touch, and painful too. They literally feel like a hard, knotted-up muscle, except they are more painful than that. I don't know whether they are caused by the fluid from the infusion building up under the skin, or if they are actually a histamine reaction. I need to do more research on that and find out.

Later the same day...
I feel like I might be sick. The question is, is it CVID, a reaction to the Hizentra, or am I actually getting sick? My legs feel like rubber and I have a "sick taste" in my throat.

My First SubQ Treatment (Lots of details of what's involved)

My nurse arrived right about 2:00, and she brought another nurse with her for training. They had me sign consent forms, then double-checked the list of medications I'm allergic to. Then we went through the box of supplies and checked everything against the itemized receipt that came with my supplies, and she showed me some of the features of the things that were sent to me.

Once the paperwork was done, she had me wash thoroughly, and use a paper towel to dry my hands then turn the water off with the towel to keep my hands sanitary. We had set out the antibacterial hand sanitizer for "touch ups" in case I re-contaminated myself before finishing (I did...many times). We went through the box and selected everything that I would need for my treatment and laid them out where they were handy. Accredo sent me a thing that looks like a big bandage (it's about 5"x8" a flat package), but it was a sanitary paper to put down for a work surface. When it was laid out, it spread to about 18"x 24", and was really handy to have...I think they sent me 5 (1 for each treatment for the month, and 1 extra).

Prepping the infusion Sites...
I then took a dollop of the Lidocaine cream and pressed it onto the places where I wanted the needles to go, and pressed a Latex-free bandaid over each dollop of cream. I had to select 5 sites because the supply company had mistakenly sent me "hookups" (don't know what to call them) for 3 needle sites when I needed to have 4. I really appreciated my nurse because she refused to do the treatment with 3 needles, and called to straighten everything out and try to find a solution. I didn't understand the ramifications of using 3 needles, or why we couldn't just use 4, but they explained to me that the more needles you use, the slower the infusion rate. My doctor had ordered an infusion rate of 15ml/hr, and since my treatment is 60ml, that meant I needed 4 needles (because 60/4=15). They couldn't use 2 of the hookups at one time because the ends of the hookups have the needles, and they branch from a single tube. There was nothing in the box to allow for a Y-connection of the tubes. My nurse spent a lot of time on the phone until she and her boss (and the other nurse) all came up with the idea of giving me 2/3 of the treatment with 3 needles, then the rest with 2 needles.

Filling the Vials with Hizentra...
I'd chosen 4 treatment sites on my belly and 1 on my back in an area where I could still see by twisting. The nurse had me take a Benadryl about the same time as when I put the cream on, and then we began preparing the medication and pump. I first popped the cap off of the tops of the Hizentra vials and swabbed the membrane across the opening with an alcohol pad. The next step required me to remove the huge syringes from their sterile packaging and screw the large needles on to them (these are only for getting the Hizentra into the syringe...the needles don't go in your body). They had me save the needle cap to make removal of the needle more sanitary and safe later. Each vial contains 20ml of Hizentra, so the nurse had me pull back the plunger on the syringe until there was 20ml of air in it (Because the vials are vacuum-sealed, you have to pump as much air into them as the amount of medication you want to take out.) I am small and not very strong physically, so I found it a real challenge to even pull the plunger out on the syringe; the next phase was even more challenging.

Here's a link to a good deal on generic Benadryl (diphenhydramine):



The needle goes into the vial easily enough, but putting air into it and holding everything such that you don't contaminate a sterile surface will take some practice for me to master. The nurse had me turn the vial and syringe upside-down such that the plunger of the syringe was resting on the sterile surface and my left hand was holding the vial and needle end of the syringe such that I could see into the vial. With my right hand I pushed down on the shaft of the syringe and forced air into the vial until the resistance was so great that I couldn't push anymore. I would then ease up on the plunger and allow medication to pour into the syringe. Allowing medication out would let me push more air in, and so I repeated the process until I'd gotten all of the medication out of the vial. I repeated the process with the next vial until I had all of the medication that I needed in the syringe. I then replaced the cap over the needle and removed it from the syringe. The company had provided a sharps container for me to discard it in.

Connecting the Tubes...
I then connected the tubing. There's a small piece of tubing with a number on it like 1200 and 600 that determines the infusion rate (in addition to the number of sites). I forget now which is which, but one of them allows for a faster infusion rate. We chose the one for a slower rate, and  removed the sanitary caps from each end of the tubing and screwed it onto the end of the syringe. to the other end of that tubing I attached the 3-needle tubing. The 3-needle tubing kind of looks like a tree in that there are 3 tubes each with a needle at one end, and they all branch from a single tube. I was then ready to put the needles in.

Putting the Needles In...
If you're squeamish about needles and reading just for the sake of interest, you might want to skip this part...

The nurse had me remove the bandaids and wipe off the Lidocaine cream with a paper towel, then swab the area in a circular motion with an alcohol pad. I left the bandaids over the other sites until I was ready to put needles into them to allow them to get as numb as possible. While the alcohol was still drying I laid out the clear film covers (Tegaderm, by 3M) for each needle site, and peeled the protective layer off of the adhesive--these covers hold the needles in place so I can move around while having the infusion. The nurse had me pinch about an inch of the numbed skin between the fingers of my left hand, and spreading the butterfly flaps back with my right hand I stuck the tiny needle (it's only 4 ml long) straight into the middle of the pinched area. Thanks to the Lidocaine cream, I didn't feel it at all! I then covered the needle sites with a thin adhesive film that the supply company sent me. Finally, I had to make sure that I hadn't put the needle into a blood vessel because the drug is not yet FDA approved for intravenous treatment, so I pulled back slightly on the plunger and ensured that no blood appeared in the line. I repeated this entire process for each of the other sites, then prepared the pump.

Me with needles in. The tubes go to the syringe in the pump.

Starting the Pump...
The pump is a mechanical device, not battery operated. there is a large knob on one side to wind it up, and an On/Off switch. It comes with a black canvas bag to carry it in. The bag is pretty cool because it has a window  where you can see the syringe to monitor the progress of the infusion, and a convertible strap to make carrying it easier. The plunger end of the syringe fits towards the back of the pump (under the clear plastic cover), while the end connected to the tubing fits into a little ring at the front (see picture below).

Infusion pump. The big knob winds it up, the little one turns it on and off. The clear plastic covers most of the syringe plunger during the infusion.

Before putting the syringe it's necessary to wind it up first by turning the big knob clockwise. It's a close fit to put the syringe into the pump. You have to angle the plunger end under the plastic cover such that the numbered side faces up for easy readability. Then you have to push back on that as you push down to lock the tubing end into the circular holder (the lip at the end near the big knob). After it's in place, switch it on. It makes a really loud, obnoxious noise at first until the little black thing that pushes on the plunger reaches the plunger handle. As soon as it reaches the plunger handle, it's absolutely silent and remains so until the end of the infusion. My nurse said that the pump exerts a force of about 14 psi on the plunger...which is about the same as normal atmospheric pressure, so I think (if I remember my chemistry correctly) it should be about the same as getting a gravitational IV. I'm not positive about that though...feel free to let me know if you know more about this. :)

The Infusion and Wrapping it Up...
The infusion lasted about 2.5 hours for the 60ml treatment (I had to repeat all of the above steps to finish mine, but this was an unusual situation). During the infusion I had some mild discomfort at the injection sites, but no itching. Once it was over, I prepared bandaids, peeled the adhesive film off of the needles, and pulled them out one-by-one. With some of the needles I inadvertently dragged them across my skin as I pulled them out, leaving scratches that started bleeding. At first I didn't realize what had caused the scratches, but then I realized I wasn't pulling them straight out. Once I realized the problem, I was able to stop it from happening. I covered each infusion site with a bandaid. After removing each needle, I cut the tubing near the needle and discarded the needle end in the sharps container, and threw the tubing and syringe away.

Post-Infusion Observations...
Each infusion site had a hard knot about 3 inches in diameter around the needle entry point and those sites felt tender to the touch. My belly was bloated to the point that I look pregnant, and I had a lot of gas. I didn't realize it was from the infusion until I was talking with a friend from my support group who told me that she was experiencing the same thing. Later in the evening I started having some shortness of breath and my chest was tight. I measured my peak flow, and found it was lower than normal, so I took my inhaler, which helped. The heating pad helped with the soreness of my belly.





,

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.

Confusion and the Details of Transitioning to Hizentra SubQ

I received a call from CSL Behring within a week or 2 of my doctor calling them. It might have been sooner than that, but I just don't remember the timeline. I'm just trying to recreate the steps so that if someone else is confused by everything and finds this that they will know what  happens with the paperwork and all that.


The lady who called me was from the product helpline called IGIQ. They are available M-F 8:00-8:00 EST (I think), and that's if you want to talk with someone about getting set up for SubQ, I believe they have 24x7 support for medical issues though. The phone number is 1-877-355-IGIQ (4447), and from there you will be routed to whatever branch of CSL Behring you need help from. Anyway, the lady was very nice and personable, and told me that my insurance company would be contacting me to let me know what my coverage for SubQ would be. She also gave me the phone number for my insurance so that if I didn't hear from them soon enough I could contact them directly. She said to expect a welcome package in the mail too.


A Few Days Later...
I waited a few days, and by that time it was the weekend...still hadn't heard from my insurance company and had misplaced the phone number. The following Monday I called the IGIQ number back, and spoke to a different person who told me that I needed to call a company called Accredo rather than my insurance company, and gave me the number for the nearest Accredo branch. I called the number that he gave me and spoke to a woman  at Accredo who said she'd seen nothing about me, no doctor's authorization or anything with my name on it. In frustration I called the number for my insurance that she gave me (MedCo), and they seemed to not only not know about any authorization from my doctor, but the people I spoke with seemed to have never heard of Hizentra. I had to spell the name for them, and then they told me that they cover it, not Accredo, so I was very confused.


A Package Arrives...
At some point in the midst of my confusion I received a package. I naively thought it was the Hizentra, but it was a welcome package from CSL Behring. They include a DVD to watch on how to administer the Hizentra, a flip chart to follow as adapt to the steps, about 10 copies of the prescribing info, a logbook for the infusions, and a few other informative pamphlets. It's all very nicely packaged, but when I opened the plastic wrap, the chemical smells (from manufacturing) were so strong that I couldn't read it right away due to my asthma. I set it aside for a few weeks and let it air out.

Hizentra Welcome Kit Contents

Approval Notice...
After another week or so, I received a call from a pharmacist at Accredo who told me that I'd been approved for Hizentra and she just needed to know my allergies to medications, my list of current medications, and all diseases/conditions that I've been diagnosed with. I got her e-mail address and sent her the information by e-mail because I knew it would take forever by phone...I'm allergic to, and on, a lot of medications.


The next day I received a call from MedCo and they said that I'd been approved for Hizentra...I was so confused and scared that I was going to be getting double-billed for it, so I asked the person on the phone about Accredo, and they told me that they own Accredo, and that Accredo will supply the Hizentra to me and handle the details about the nurse coming to the house to show me how to infuse myself, and I pay MedCo. That cleared up all my confusion. 


Arrangements...
Over the next day or 2 I received more calls from Accredo to make the arrangements. They called to arrange when the nurse should arrive, when I wanted to receive the Hizentra, told me how much Hizentra I'd be getting, and assured me that the pump will arrive with the medication (they said to expect 2 packages, one with Hizentra, and the other with the pump and supplies. I'm not sure whether it will contain everything I need on Friday (when the nurse comes), so I'm glad I arranged for it to arrive a few days ahead of time. I also received a call from the Insurance Coordinator at Accredo and he told me how much my co-pay is, and since I'd asked for a 3-month supply and they can't dispense it in 3-month quantities, he told me that they'd made an arrangement to give me the 3-month price every month! Sweet! 


Other Details...
Accredo also has a 24-hr helpline for any medical questions or concerns with infusing Hizentra. That gives me some peace of mind too.


It's Monday now, and I can't wait for Friday to arrive so I can start! Accredo told me the name of the nurse, so I guess they even have a nurse picked out in advance!


I found out from people in my support group who use SubQ that the pumps don't have an infusion speed...it just pumps at its own rate. I had to have my IV infusions very slowly, but I'm assuming (and hoping) that since  Hizentra is infused into the fat layer under the skin that speed is not an issue.


I will list phone numbers and websites for IGIQ, Accredo, and MedCo in the references section of this blog.

Confusion Over How to Arrange the Switch to SubQ

Sometime in August...
I found a phone number online and gave it to my doctor to start the process of switching me. She's never heard of Hizentra before (I think I said earlier that I'm her first diagnosed case of CVID), and so I'm also her first patient to switch to it. From everything I've read online in my support groups, it is the drug of choice. It has the reputation of having even fewer side effects than Vivaglobulin, which has fewer than regular IVIG. Before I even left the office my doctor had CSL Behring on the phone (manufacturer of Hizentra), and called me into her personal office to give her information on my insurance and other details that they asked for. She also submitted an order for additional blood work to be done right before my next infusion so that she could submit my "trough IgG levels" to help them determine what dose I will need.

Transitioning to Sub-Q

As I mentioned in a previous post, I'm in the process of switching over to Hizentra subcutaneous IgG (Sub-Q). Switching from IVIG to Sub-Q is a matter of personal choice and has advantages and disadvantages--although for me, I only see advantages in making the switch.

For the sake of clarity, IVIG is the form of Immunoglobulin treatment that requires an IV and nurses to administer each time. Sub-Q is a different form of the same treatment, but is administered into the fat layer under the skin (as opposed to a vein), and after instruction from a nurse, a patient gives themselves the treatment in the comfort of their own home. I already stated that I see only pros to Sub-Q now (originally I couldn't understand why anyone would want to do it), but I will try to list the features of both treatments for a more direct comparison.

IVIG	Sub-Q
Administered every 3-4 weeks	Administered every week (or more)
Treatment can take anywhere from 2 - 12 hours or longer	Treatment generally takes an hour or 2 -- longer if desired
"Many" different brands to choose from	Currently 2 brands to choose from (both made by CSL Behring)
A clinic or home nurse needed for every treatment	Patient administers to themselves after training
One IV needle per treatment	Two to eight tiny needles per treatment
Treatment administered directly into vein	Treatment administered into fat under skin
Side effects are very common	Side effects are reduced
Premedications generally required	Premedications often required
Bruising or other irritation at injection site	Itching, swelling or other irritation at injection site
Patient has to arrange infusion schedule with nurse or clinic	Patient administers treatment at home on their own schedule and terms
Energy drain tends to happen the week before an infusion	Patient is able to maintain levels in a more steady state, resulting in higher energy
Medical insurance generally covers treatment as a Dr. Visit	Covered by Pharmaceutical insurance as a specialty drug
Everything is set-up for the patient by nurses each time	Patient does all set-up and prep work
Diluted solution--high volume = more time	Concentrated solution--low volume = less time

When my doctor first told me about Sub-Q I was repulsed by the idea. I couldn't imagine sticking myself with multiple needles every week, or even sitting through the treatment that frequently. I think that I've had a change of heart for a number of reasons though. First of all, I've gotten really sick from side-effects of IVIG. I think the first time I read in my support group that other people who had switched were no longer having rashes or breathing problems or exhaustion, was the first time I gave Sub-Q some serious consideration. Then, I met someone who had actually switched, and he was so thrilled with the results that by the time I finished talking to him I'd gone from hesitantly accepting that I might try it one day to thinking it might be a great idea for me. Then add in the hassles I've had with the nurses at the infusion center, the fact that my treatments take an entire day and often make me so sick that I miss work, the lack of energy and frequent illnesses and infections, and I'm ready to make the switch!

I like the idea of being able to do my treatment when it works for me rather than being held to the Infusion Center's schedule, I spoke to some home health nursing facilities when I was weighing other options for sticking with IVIG, and they sounded like they would be trying to rush me through my treatments too, so that didn't sound like a viable option either. The thought of having more energy, being sick less frequently (with time), and no one rushing me or hassling me sounds heavenly!

Immunologist Appointment 

Thursday, July 1, 2010 

I saw my immunologist yesterday, and we agreed that when I see her in September she'll set me up to start on Hizentra SubQ. I'm excited, and would like to start sooner, but she's kind of swamped and will be the first doctor in her department to start a patient on SubQ. Her nurse is on vacation for the next 5 weeks, so she wants to wait until her nurse is back to help her with the forms. I gave her a copy of my insurance card just in case it turns out to be easy enough for her to set it up without her nurse, but I'm not holding my breath over it. She said she has an even more complicated patient right now who's needing a lot of her help and she's having to do a lot of research to help this person. I don't begrudge that since she helped me the same way, and it's awesome to know that your doctor cares enough to spend that kind of time to investigate and try to find the best answers. 

She'd never heard of Hizentra before, she'd only heard of Vivaglobulin, but when I told her that they're made by the same company, she was less worried about doing the Hizentra than she was when I first mentioned the name. I'd considered printing off a copy of Hizentra info from their website, but didn't. I wish I had as it might have made things a little easier for her, nevertheless, she's willing to put me on it. From the time she left the office until the nurse came back in to give me back my disability form, my doctor had phoned the drug manufacturer and found out what pump to prescribe for me and was already trying to get the ball rolling. I really appreciate her attitude!

She authorized my return to work at 20 hours per week, and didn't give an end date for now, although I just realized that will be necessary for my insurance to cover my disability payments while I'm part time. Oh well, hopefully they'll be in the office tomorrow. ;)

Eleventh IVIG Treatment

So the Hizentra did not get approved in time for me to avoid going back for another infusion at the infusion center. Once again I outlined the rates and transitions that I wanted, and hope to avoid hassles with the nurses.

I'm having my infusion right now. It's going well, and I'm hoping that I'll have very few reactions since I'm on prednisone and they gave me my normal 50mg of Hydrocortisone as well. I'm keeping them to my usual rate of 25 for 30 minutes, 50 for 2 hours, and 75 til the end. With the additional steroids and low speed I really hope this one will be a good one! 

I arrived at or before 8:00 AM, and they took me in late...maybe nearly 9:00 before they started. I was finished and sitting on the bench waiting for mom to bring the car around by 5:15, so it was at least 8 hours long. As far as reactions go I'm doing well, but I think the 2 different kind of steroids are playing havoc with my emotions. I feel like a wreck and that everything I want and need completely conflicts with everything else I need and want. I took 1/2 a clonazepam when I got home and slept for awhile, and am now listening to soothing music and playing a game trying to be calm and let go of these awful steroid emotions in a healthy way. 

Tenth IVIG Treatment

Today I had my 10th, and possibly final infusion. I say possibly final because my doctor is in the final stages of getting me switched over to Hizentra Sub-Q! I'm so excited!

The infusion went really well despite the fact that I have either pneumonia or bronchitis right now and am on another round of Levaquin for it! Anyway, I wanted to avoid the battles that we endured last time, and I realized that one thing I'd done which contributed to all of the conflict last time was that I had them keep it at 25 for a whole hour. I was pretty dopey from the premeds and I so when the nurse asked me if I wanted to stay at 25 for an hour I thought I had enough time left in the day to get my whole treatment in easily, so I said "sure, why not?". Because of that mistake it ended up being a very stressful infusion that time.

So this time I went prepared. I told my mom ahead of time what speeds I wanted and how frequently I wanted the transitions. I then wrote them down for her to show the nurse. Because I did that, there was no conflict, and I came up with an arrangement that's slow enough to take care of me without causing them to freak out. I had them start at 25 for 30 minutes, then transitioned to 50 for 2 hours, after 2 hours I had them go up to 75, and keep it there til I finished. I walked into the office at 8:30 AM, and left at 4:00, so I think we did well all-in-all.

Tonight after getting home and having my post-infusion cupcake reward, I took a benadryl, and some medication for my migraine that I've had since yesterday. The migraine is slightly improved, but is still a "back-burner" headache...meaning, it's still there, but I can deal with it.

I hope that I don't feel bad after this one, and I hope that the Hizentra is a good thing for me to use. I have heard a lot of success stories from those who have switched, and it could make my life so much better if that turns out to be the case for me.

Immunologist Appointment

I saw my immunologist yesterday, and we agreed that when I see her in September she'll set me up to start on Hizentra SubQ. I'm excited, and would like to start sooner, but she's kind of swamped and will be the first doctor in her department to start a patient on SubQ. Her nurse is on vacation for the next 5 weeks, so she wants to wait until her nurse is back to help her with the forms. I gave her a copy of my insurance card just in case it turns out to be easy enough for her to set it up without her nurse, but I'm not holding my breath over it. She said she has an even more complicated patient right now who's needing a lot of her help and she's having to do a lot of research to help this person. I don't begrudge that since she helped me the same way, and it's awesome to know that your doctor cares enough to spend that kind of time to investigate and try to find the best answers. 


She'd never heard of Hizentra before, she'd only heard of Vivaglobulin, but when I told her that they're made by the same company, she was less worried about doing the Hizentra than she was when I first mentioned the name. I'd considered printing off a copy of Hizentra info from their website, but didn't. I wish I had as it might have made things a little easier for her, nevertheless, she's willing to put me on it. From the time she left the office until the nurse came back in to give me back my disability form, my doctor had phoned the drug manufacturer and found out what pump to prescribe for me and was already trying to get the ball rolling. I really appreciate her attitude!


She authorized my return to work at 20 hours per week, and didn't give an end date for now, although I just realized that will be necessary for Cigna to cover my disability payments while I'm part time. Oh well, hopefully they'll be in the office tomorrow. ;)