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.

Ninth IVIG Treatment

This isn't supposed to be a stressful day for me...at least, not in my book. The nurses have been hassling me about increasing the rate to 75 then 100 because they close up shop at 6:00. Because I didn't want to do it, they called my doctor and apparently my doctor is not in the office today so one of her colleagues who has never seen me called and said that they should give me the choice of either increasing the rate to get my full dose or cutting me off at 5:00 pm and sending me home if I want to keep it at 50. I'm a bit upset over this. I came in 1.5 hours early this time and according to my calculations it should take 8.5 hours total for the infusion. They started it at 9:00 and close at 6:00...that means it should be done at 5:30.

I agreed to let them bump it to 75, and I'm pretty confident that it will be done by about 5:00, since last time I came in at 9:30, started at 10:30, and they increased it to 75 at 1:00 and I walked out at 5:30 that time. My big mistake this time was keeping it at 25 for an hour. I wish these nurses had a clue what impact IVIG infusions have on your body! I think we need nurses with CVID to give us our treatments! :)

My mom's really mad about the other doctor saying that they should cut me off at 5:00. She walked down to my doctor's office to see if my doctor is in. 

Oh well, I guess if this doesn't work out I may end up having my infusions at home, or at the hospital. Of the 2 I'd prefer doing it at home...as long as I had a good home nurse.

Back in the infusion center...

Mom just called and the other doctor is playing the waiting game with her...telling her he'll be out to talk to her in 10 minutes and not showing up. I told her to just come back because there's no point in her getting upset in dealing with him. To be honest I think I can handle 75, I just really wanted to try an all-50 infusion to see how good I feel. I start working full time on Monday, and luckily my boss is being cool in that he'll let me work from home part-time and slowly increase my office hours. I hope it works for me.

..........................

Mom just got back from talking to the other doctor, and he said to my mom that the nurses at the infusion center "hear what they want to hear". He asked my mom which nurse he spoke to, and she gave the name. Apparently at that, he just said "aha, I know. She rushes people all of the time". He called back and told them to not go above 75 and to give me until 5:30.

........................

At 5:30 on the dot my infusion was down to the last trickles, and the same nurse who'd been giving me the stress was flicking the tubes to make sure I got every drop, so at least I did get the full infusion. I might go with the day admit at a hospital option for my infusions, it would be worthwhile to not have to deal with all of that grief.

Update

On Saturday I nearly fainted at dinner, and I think that was related to my infusion, and again early this morning the same thing happened. I've realized that my doctor cut my hydrocortisone level in half as of these last 2 infusions, and that may be why I haven't felt very good despite the rate being slower.

Dr's Call

My Doctor just called to talk to me about my infusion. She said that my insurance company will never approve me having my infusions at a hospital, and the infusion center is bending over backwards in allowing me to have it over the course of 9 hours. She also said "Most people do it in 2 1/2 hrs" and she nixed the increasing my steroid level idea, and said I'm just going to have to "power through on this". Ugh...I hate this kind of stuff. Sometimes I feel like she's very supportive and great, and other times I feel like I'm on my own.

Eighth IVIG Treatment

IVIG #8

Saturday, July 17, 2010
Today when I walked into the infusion center at 9:30, Jane (my nurse from infusion 7) introduced me to Christina, who would be my nurse today. She assured me that she'd told Christina to keep the speed at 50 cc/hr or slower. I was happy to hear that because I'd prepared myself to argue to keep it below 75. Christina was sweet, and when she started the IV it hurt less than usual. No blown veins, and no other problems. :)

I started out watching a movie, but I got too sleepy as the benadryl kicked in and took a nap. Mom woke me up at 1:00 because she got worried that it was going so slowly that the nurses were going to give me attitude near closing time, so she asked the nurse about increasing the speed to 75 to make sure that I was done in time. That was when I learned the conversion to calculate the amount of time it takes to do an infusion.

Anyway, the nurse raised the rate to 75, and we finished at 4:55. My next infusion will be August 6th at 8:00 AM. That way if I need to keep it at 50 all day, I can! :)

The 75 rate seemed to work for me. I wasn't dopey after my nap. I finished my movie and spent some time on the computer.

After my infusion I had my mom take me to visit my brother, and we hung out with him, his girlfriend, and a few of their friends for about 3 hours. I had a really great time, and still felt good when we left. I did however, need to leave because they were smoking a lot, and it was really starting to aggravate my lungs. We then came home. My one big concession to resting today has been working on my laptop in bed rather than sitting at my desk. Anyway, it's been a great day overall, and I think I'm ready to sleep. :)

Update

Monday, July 19, 2010 

I had my infusion on Friday, and yesterday (Sunday) I went out with my boyfriend and his son to a park for a play date with other children. Being at the park was fine, except I was a little paranoid about playground germs. I tended to pace a lot because everything seemed sticky and dirty and I didn't want to touch anything. As a result, I probably expended more energy walking around there than I should have and thoroughly exhausted myself. I'd thought that it would be no big deal to go on such a simple outing since I'd had a day to rest, and the infusion had gone smoothly, but I really over-estimated my abilities. Due to the circumstances I was stuck with walking around and sitting when I had to until my boyfriend was able to take me home a few hours later. By that point I was so exhausted that I just wanted to curl up in a ball and cry myself to sleep. I just wanted to do something normal with people that I care about, and that was too much. I know I wasn't fun to be around either.

Another infection and my doctor visit today
Friday, July 30, 2010

I have been so exhausted lately, both emotionally and physically, and for at least the last 3 weeks. I went to my doctor today because I have a sore in my mouth that I knew last night was infected (I still have my wisdom teeth and I'd bitten the inside of my cheek with it), and my sinuses have been stinging for days along with headaches. Anyway, I have the beginnings of a bladder infection, sinus infection, and possibly the beginning of pleurisy. Because I rinsed my mouth with hydrogen peroxide last night and this morning, she said that the sore is not infected, so I'm just going to keep using the hydrogen peroxide on that. She gave me a prescription of Levaquin for the sinus/bladder infection, and I hope it will take care of pleurisy too if that's really what's happening.

We talked about whether it would be wise to have my wisdom teeth removed (no pun intended) because I bite myself a lot, and she said that it's really up to me, but I should have it done while I'm on antibiotics if I want them removed. I'd do it during this round of antibiotics, but I also need to do it soon after an IVIG treatment. I might put it off another 6-mos or year, I mean, I've been putting up with this since I was 17 or so, what's another year?

We also discussed a referral to see Dr. David B. Lewis at Stanford, and it turns out that she knows him! She said she was happy to refer me to him and that I should have someone really knowledgeable treat me, and she even told me that if I want to transfer my care to him that I shouldn't worry about hurting her feelings. I thought that was really sweet, because I was worried about that even for asking for a referral. However, I think that seeing him as my regular CVID doctor would probably be cost-prohibitive especially because he's out of network. I expect that I will keep him as an annual visit kind of doctor or every 6 months. Still, it will be awesome to see someone who's focus of study is primary immune diseases! :)

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. ;)