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Living with Polyneuropathy CIDP, GBS, & CMT

Hizentra SubQ

Hello friends, just wanted to ask if anyone has tried Hizentra instead of IVIG. My doctor wrote an order in November of last year and we have been going around in circles with insurance ever since. I’m not sure at this point if getting a port for IVIG might be easier.

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Hi, Buster. I was an IVIG user for over 10 years, and my veins were becoming harder and harder to find. I made the switch to Hizentra in January, 2019, and it’s been life-changing (and I mean in a positive way)!

Now I can travel without worrying about my IVIG schedule, I can infuse myself without waiting for potentially unreliable nurses, and my Ig levels are stable. Not only that, but the side effects are virtually nil.

I heartily recommend Hizentra!

Any questions, feel free to ask…

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Hi Buster, my veins were collapsing from ivig and i had the same dilemma as you, going with a port or with hizentra. My vascular doctor said to go with the Hizentra. Its not as effective, but can sustain you. Happy to share more details how to get it covered. If interested, send me an email with your cell and i can explain. Its too long to write about. I am Anne in Connecticut in the US. My email is a.vonick@att.net

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Hi mrobichek, thanks for getting back to me! I’m happy to hear that Hizentra has worked so well for you. I’m hoping for the best, but our insurance is like working with the Three Stooges. It’s so bad it unreal. Anyways, still have to take one more IVIG, if they can get an iv started, and then start the new med…hopefully. Talk at ya later!

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Hi Anne, thank you for getting back to me! My veins are collapsing too. It’s really hard for the nurses to start and iv. I’m very hopeful about starting Hizentra. I’m going to email you after I finish this message. My email address is jackbuster57@yahoo.com. I look forwards to speaking with you.

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Hello, as some one who does not have Hizentra as an option where I live the port has made IVIg a walk in the park. I dont even feel the needle now and no bruised arms, painful swelling and hours on a vein hunts.

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Installing a port might be considered if your veins are too shot to get a needle in for IG infusions. Lots of risk of infections with ports and they must be cleaned out a lot to stay free of virus/infection.
I have not used the drug in question before but did go through 3 yrs of IG weekly infusions and 1 yr of steroid infusion. I gave up all treatment afterwards and dealt with the pain instead. Remission and regeneration afterwards but still deal with chronic foot pain when I’m breathing. God bless you and heal you!

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Hi SpareFairy, thank you for your reply. I thought about getting a port for a long time. Since I first posted, my insurance has approved Hizentra, so I will at least give it a try. Getting a port kind of worried me. I try to stay as active as I can with home repairs, yard work and working on my Jeep. I also have been able to workout, for now, and that’s where the worries came in. The thing I was afraid of was hitting that port with a heavy dumbbell. I can just imagine it splintering into my chest. I really appreciate your positive feedback and know that Hizentra may be short lived and a port have to be placed. Please stay in touch and let me know how you’re doing! Jack

Hi Williamtscott, thank you for replying! I have been on IVIG four years now, and my veins are shot. I would love to stop all the treatments, and probably will when my wife stops working and we no longer have insurance. I’m taking a handful of supplements to try and see if I can find a combination that allows healing to begin. I can relate to the foot pain. I take 100mg of Lyrica at night so I can sleep, and that seems to be helping a lot. I look forwards to hearing from you again! Jack

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Hey Buster, I see that your insurance company came to their senses and approved Hizentra! At many of the various conventions I’ve attended on our condition(s), I’ve heard that ports have huge potential for infections and other problems. Plus, having a port still means that you’re stuck with going to the hospital or possibly getting a home nursing visit for your treatments. If your insurance company hadn’t come around by now, I was going to suggest that you point out to them how much cheaper it will be for THEM for you to be infusing yourself. Good luck, and take care.

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Hi! I was doing IVIg every 3 weeks and my veins were collapsing plus I was trying to still work so taking a day off that often was hard to do. I went to a speaker program where I learned about Hizentra. I asked my doctor if I could try it. He had never done it before so we worked through it together. They have a sample program, that will give you a month for free while you get approval from your insurance. If you do it, make sure that you get a high enough dose. That was our mistake so it seemed like it wasn’t doing as well. Also, the specialty pharmacy rep worked really hard for me to get it approved. Maybe you can find out who your doctor likes that could help push it through! With all of that said, I love Hizentra and the freedom that it gives me! I can take it anywhere! They give you a shoulder bag to be able to carry the pump around while you do your infusion. I found that a hoodie or a shirt with a kangaroo pocket is awesome. I just tuck the pump in there and I don’t have to worry about the bag sliding off my shoulder. I hope you get it all worked out! Let me know if you have any questions!

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Hi PollyPocket, my insurance finally approved Hizentra for me!! I do have a couple of questions for you. Did you get a final IVIG treatment one week before you started Hizentra? Do you still have to take Benadryl while taking Hizentra? I’m wondering how hard it is to learn how to stick yourself with needles. As a young boy I had to take allergy shots, and it seemed that Nurse Ratchet was more than happy to traumatize me. Needless to say, at 61, I’m still a fraidy cat!

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Hi! I am horrible with needles too! I don’t watch when needles are near me. Thankfully these are very short. Mine are either 9mm or 13mm. Your dose and the speed of your infusion will determine how many needles that you will need. If you have enough skin/fat to pinch a little, it is pretty easy. Just go straight in! If you do it at an angle it is not as comfortable to move around. I am sure that they will send a nurse to get you started. She will do it the first time and depending on how confident you feel, you will do it with her supervision. Eventually you are on your own! And yes, you start the week after your IVIg! I watched several YouTube videos before I even met with my nurse. I picked up little tips and tricks. My nurse had some suggestions for me too. I am faithful about using the log that they provide for you. I keep track of the dose, date, time, what I took before and especially the locations where I put my needles. I can’t remember from week to week!! I still take 2 Tylenol and Benadryl and drink TONS of water before, during and after. I have a weird routine and I just do it, because it works for me! Why mess with it? I have some coffee for caffeine and a Powerade. I am certain that I would live without most of it except the water. When do you get started?

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Hello, I just found out that Hizentra was approved for me two weeks ago. Last time my dr tried to switch me over they cancelled my ivig before I could get my last dose. My insurance is like dealing with a case of water bottles. Same intelligence, same personality and level of caring. Lol. I should hear from the infusion outfit this next week to schedule my last ivig and then the Hizentra. Can’t wait to not get an iv anymore. It’s been a long painful road. I too have watched all the videos and done my research as to what to expect. I think I can handle the needles, knowing that someone won’t be digging around for a vein. I hate that. The last two ivig sessions have taken multiple pokes to get an iv started. Ugh, can’t I just drink the crap! I’m looking forwards to getting to know all of you better. Just got off the phone with one of the ladies that answered my thread. First person I’ve actually talked to with CIDP. It was a huge relief to know it’s not just all in my head. Anyways, here I go again, talking your head off. Thank you so much for getting back to me, and I sure hope to talk with you soon! Jack

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Congrats on the approval to get you off IVIG ! I hope you are greatly helped by the new meds.
There is a philosophy, or there was, that you treat CIDP for a few years and then go off treatment and adjust to life without.
I don’t know where you are in years of treatment or if you can ever imagine yourself without treatment or if it’s medically advisable.
I stopped because IVIG stopped working at reducing pain and after 1 year of massive “steroid rage” I couldn’t continue life mad and angry. So I stopped and over time with pain management docs help, I learned to live in chronic foot and lower leg pain.

Hi Williamtscott, I’ve been on ivig for four years now. I was diagnosed with having severe CIDP in May of 2016. It has never helped with my pain levels…at all. I really didn’t have a clue it was supposed to. I have one of those doctors that spend about 5 minutes with me every six months, and either she doesn’t have the time, or maybe the patience, to explain things to an ignoramous like me. I have battled through the pain for a long time. I am constantly experimenting with different supplements to see if I can get my body to repair itself. I have often dreamed of being able to quit treatments and go back to work. I was forced to leave the CHP way before I was ready. Thank you very much for your reply! It’s really helpful for mind and spirit to be able to talk with others who are walking the same path. Jack

Ben, Have you considered seeing a “Pain Management” Doctor to help control/reduce/make more bearable? If you are living in chronic pain you owe it to yourself to seek some small amount of relief by going to a pain management doctor. Your neurologist will never script you pain reducing meds, they just won’t.

I had a neuromodulator installed several years ago and it does a great job on reducing leg pain. This was done by surgery with a pain management doctor. It greatly helped reduce my lower leg pain, but did not help my foot pain. Foot pain persists. This is what I need pain management for.

IVIG can slow progression, reverse degraded feeling, reduce pain, and at some point your disease could go into remission where it stops spreading. Quits killing and destroying myelin sheath on additional nerve areas. At this point, you could consider stopping treatment. 4 years is the same number of years I got treated. It’s a long time but you have made it and endured.

If you don’t feel like the disease is still spreading and getttin worse and effecting new areas, you might want to talk to your doctor about reducing and weening yourself from treatment. But you should at least start seeing a Pain Management doctor before you quit treatment or in addition to treatment to see if you pain can be reduced through the use of meds for pain management or if your have pain in a concentrated area, feet, legs, torso, back, hands, then a neuromodulator also called a neurostimulator and gain some relief.

God Bless You and try to live toward your dreams! If you desire to go back to work, then set a plan in place and go for it!!! You’ll never know what you might be able to accomplish unless you try. If you dream about it, then step into it. Try working a few hours a day and then add to it, etc.

Your

Williamtscott, my primary doctor had me on gabapentin, but it made me feel very sluggish. He recently switched me to generic Lyrica which has allowed some much needed sleep. I am looking forwards to trying Hizentra, if my insurance can get everything scheduled so I can get one more ivig before I start.

I just found out I will be receiving 100cc of Hizentra twice a week. I guess I’m worse off than I thought.