Wednesday, September 29, 2010

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.

Monday, September 27, 2010

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.


Friday, September 24, 2010

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. ;)

Friday, September 17, 2010

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.