SubQ transition from IVIG

    • Anonymous
      March 17, 2011 at 9:47 pm

      After 11 years of IVIG – the last 5 on Gammunex I am transitioning to SubQ with Hizentra. I have been through the ringer with CIDP and have faced about everything so I don’t fear much any more but I am nervous to switch since I do tolerate gammunex ivig once a week fairly well – but every time we try and go further than a week I feel lousy.

      I am searching for anyone that has switched and can share tips especially if they require pre-medication. I currently don’t use any so I am curious. Please share!

      Thanks everyone!

    • March 18, 2011 at 9:17 am

      check all posts from a member named Juilie. she switched to sub q and documented her transition in detail

    • Anonymous
      March 18, 2011 at 10:01 am

      I have been on Gamunex (now re-formulated as Gamunex C) for almost a year with great results. I am seeing my neurologist in three weeks and primarily because of vein issues will discuss with him possible transition to SubQ. I will be interested in your progress.

    • Anonymous
      March 18, 2011 at 11:07 am

      Hello Lisa, I am sorry things are not going well for you. Had hoped we could visit when you came camping in Yankton,but we just sold our retirement home on the river and moving to a town in Ne. When my Neuro. left I tried many others in this area (including Dr Z) and Mayo, with each one giving all the tests,xrays,cat scans meds,etc. with no resolve. So at age 71 I gave up– stopped all meds and treatments. I guess its a type of remission, tho 24 hr pain, confined to a power wheelchair and all the other good stuff but so exhasted CAN sleep at night and luckily no remission. I hope a new treatment will help you.
      Jean Johnson

    • Anonymous
      March 18, 2011 at 11:55 am

      I was suppose to go onto the sub q gammunexc but the dosage is significantly more than vivaglobin or hizentia so they are moving me to hizentia.

      That does make me nervous since I did tolerate gammunexc fairly well.

      Today is my last ivig and then on Wednesday my nurse will come back and do my first dose of subct and then I am on my own. I have lost all sensation in my right hand so we are hoping I can do on my own if not the family gets recruited. Luckily the hubby is an met and my teenage son became a master nurse when I had to take of my central lines.

      I will let you know it goes. I think I need some deep meditation! Julie your experience was helpful from last year. If you get a chance give us an update on how you are doing.

    • Anonymous
      March 18, 2011 at 2:05 pm

      It is my understanding that Gamunex was re-formulated as Gamunex C specifically for subcutaneous administration purposes. If you looked at the old bottles of Gamunex before the re-formulation, they read “Human Intravenous”. The new bottles read “Human Injection” instead.

      Was it your physician or the insurance carrier who decided to move you to a lesser-dosage brand of IVIG? I think we will soon see the insurers trying to force as many of us as possible into subcutaneous administration of our immunoglobulin. That way, they don’t have to pay for services at an infusion center, or for an infusion nurse to come into a home setting. You can bet that if there is a cheaper brand of immunoglobulin for subcutaneous administration than we have been using intravenously, we will also be forced to switch to that brand.

      In any event, I hope the subq works well for you, and I’m sure it will. Please let us know how you are doing.

    • Anonymous
      March 18, 2011 at 2:26 pm

      I sent Julie a private email asking for an update, but her personal email is blocked so I couldn’t write directly to her. Maybe one of the senior members has her email and can write and ask her to update us. Hubby has been interested in subcutaneous IVIG for a couple of years, but no CIDP patients in British Columbia have gone that route yet. He really wants to give it a try.

    • Anonymous
      March 18, 2011 at 2:53 pm

      Sorry about my email being blocked, not sure how I did that… anyway –

      I am still doing great on Vivaglobin, sub-q Ig, I have very few side effects, I never have to take any premedication and I haven’t had meningitis in over a year. ๐Ÿ˜€ It hasn’t been a big deal to do my own treatment and my doctor has been pretty receptive to changing the dosage. Last fall we tried to go down from 180mL per week (divided by 3 days) to 120mL per week but I kept getting sick this winter which to me meant that I didn’t have enough Ig to fight off my repeated colds AND manage my disease. I have been through that before with IVIg so it was a no brainer to raise the dose back up again. I’m doing well on 50mL three times a week (150mL per week total) of Vivaglobin but we plan to transition me to Hizentra as soon as my doctor is convinced I’m stable enough – all those boxes of Vivaglobin take up a lot of space in my fridge and its a pain to travel with a cooler. All my bloodwork has gotten much more stable, when I was on IVIg things like liver enzymes, thryoid hormones etc. would be up one minute, down the next etc. but things are mostly stable on Vivaglobin. I have no complaints aside from wishing my nerves would heal. I feel good most days though with getting sick so much things went downhill a bit so I’m building back up again. I seem to go through this every winter so I should really plan for it next year. :rolleyes:

      Feel free to post any questions, I’ll try to figure out my email thing so you all can write me directly. ๐Ÿ™‚


      P.S. Sticking yourself isn’t that big of a deal since you are trying to miss veins, not hit them. The rate is set at 30mL per hour so you can calculate how long it will take based on your dose… at 50mL three times a week it takes me 100 min each time with about 15 min for set up. I do it Monday mornings in my legs, Wed. evening in my arms (hubby does that one) and Friday night or Saturday morning in my stomach. It’s much more flexible than having a nurse come, if I want to go to dinner Friday night I can reschedule myself for Saturday morning. I get a little bit tired after treatment but it takes about 24-36 hours for it to all be absorbed through my skin so you don’t get hit with a massive dose right at once, so fewer side effects. Thanks to pervasive numbness it doesn’t really hurt to poke myself, or have hubby do it… though occasionally I do have to remind him I’m not a dart board. It’s portable if I am careful not to snag the lines. I try not to walk around when I’m doing my legs and arms because it’s easier to snag the lines there but I’ve been known to cook an entire meal while doing treatment in my belly. I don’t care what happens I’m not going back to IVIg… I love subcutaneous treatment… it’s been very good to me.

    • March 18, 2011 at 3:40 pm

      the sc sounds good to me—must be easier on the veins and the kidneys???Can one do this while still at the loading dose amt–2 gm per kg or does it have to be once at the maitainance dose? I would prefer this method any day over sitting in an infusion room for 5 hours. Is it like an inslin injection?just inder the skin with a syringe? will be awaiting your updates on this procedure—it must give the body a more constant level too, where its every few days instead of less often. I will definitely ask about this—:) Lori

    • Anonymous
      March 19, 2011 at 12:08 pm

      Julie thanks for all the good information. I’m sure my husband will have more questions down the road. I’m glad it seems to be a good solution. I think it sounds like a good option for my husband–now he just has to convince the powers that be.

    • Anonymous
      March 20, 2011 at 10:09 pm

      Thanks for the update! It is really encouraging that you are sticking with this. I was surprised that the Hizentia does not require refridgeration. The top shelf of my fridge is now free! I will be starting on Wednesday so I will post and share with everyone.


    • Anonymous
      March 23, 2011 at 4:39 pm

      [QUOTE=Lori222]Can one do this while still at the loading dose amt–2 gm per kg or does it have to be once at the maitainance dose? I would prefer this method any day over sitting in an infusion room for 5 hours. Is it like an inslin injection?just inder the skin with a syringe? will be awaiting your updates on this procedure—it must give the body a more constant level too, where its every few days instead of less often. I will definitely ask about this—:) Lori[/QUOTE]

      The concentration of Vivaglobin is 16% so you need less than regular IVIg and the concentration of Hizentra is 20% so you need even less. Less solution means less time and less discomfort. You and your doctor will work out the best schedule for you but based on my dose and tolerance we settled on 3 times a week. It’s not like insulin. What you do is pull up all of the Vivaglobin from the separate vials into one large syringe, 60mL. Then attach a connector tube from the syringe to the subcutaneous set – which is 4 or 5 needles, very short, connected by long tubes. So you basically have one large syringe of fluid going into four or five sites. Once you bleed all the air out of the tubes you select 4 (or 5) sites on your arms, stomach, legs etc… fatty places, swab them with alcohol wipes and then poke yourself with the needle. Once all four are in you take the clamp off of the tubes one at a time and pull back on the plunger of the syringe… usually all you see near the needle site are some small air bubbles but if you see blood you have to clamp that site off and start over – really try not to hit blood vessels, it’s a pain. Once all is well the syringe then gets placed in this wind-up device that looks like a kid’s marshmallow shooter such that when you turn on the machine a little finger cranks down and presses on the syringe plunger. That machine is mechanically wound up, so no batteries and it’s light weight. It comes with a little pack that you can sling over your shoulder or wear like a belt-pack. It’s quiet and it won’t ever last more than 2.5 hours because you aren’t supposed to put more than 15mL per site and I think 5 is the max number of sites. Once you are done you clamp off the tubes, cut them and then take the needles out one at a time… piece of cake. I occasionally get some itching and a little redness but it’s not enough to bother taking medication. I typically start feeling better within an hour but the entire dose doesn’t get absorbed for 24-26 hours. I usually feel pretty good until it gets close to time for another treatment, then I’m tired, dropping stuff etc. It’s much better having the slow steady dose… I still go up and down but it’s much more predictable and not as devastating.
      ๐Ÿ™‚ Julie:)

    • Anonymous
      April 3, 2011 at 11:26 pm

      Hello, sorry for taking so long for the update!

      I started my new treatments almost two weeks ago. My home health nurse came out to help me with the first infusion. I have been doing home health for about 5 years. She had not done a subcutaneous treatment before so we learned together and my pharmacist from Coram was available on the phone for questions.

      We transfered 10grams of Hizentra from three small bottles into a large syringe. That syringe gets put into a Freedom pump -very small pump that runs from a wind up dial. We hooked a transfer tube onto the main tubing which is really small. I started with a three way tubing and moved to a four way tubing set.

      Each has a tiny needle that you insert into a fatty area which is no problem. I have done stomach and inside of my thighs. the only problem we had was that the first infusion took over two hours when it was suppose to run at under an hour.

      That has remained a problem and they told me that hopefully after each infusion that my tissue would be able to absorp better each time but it has gotten worse. The last 10 mls or so took over an hour and when I remove the needles I leak so to speak and not just a little.

      Each site gets a build up of fluid under the skin which you can see. It absorps in the next day and I had only minor irrations on the skin.

      The other issue outside of the absorption problem is a chronic headache that I did not have with Gammunex. I did ask about why I had to be switched after a really successful past 5 years on Gammunex.

      My pharmacist that Gammunex was approved for SubQ at the end of the year but it was actually approved at the same formulation which means it would take a huge quantity over more days to keep the same dosage where as Vivagloblin is 16% and Hizentra is 20% concentration requiring fewer grams to be effective.

      I wanted to give up after the first two infusions because of the headache and time it was taking but I have stuck with it. Unfotuneately my Saturday treatment took 3 hours and that is after all the prep of the IG and the needles and site. UGH!

      they think that my tissue structure just cannot absorb – go figure something else in my body doesn’t work! And because of the loss of feeling in my right hand it was quite hard to transfer the plasma from the bottles but they did send a larger needle. I was hoping to everything by myself especially since it seems to be taking so long.

      So one of the trade offs is I am going from a home infusion that takes 1.5 hours twice a month to 12 treatments a month at 3.5 hours – so almost a full week each month in treatment time. I feel like I have gone back to the long in hospital infusions.

      If any of you still go to the hospital for infusions it is worth asking about home care. I live in south dakota and my nurse drives an hour an half to get to my and without a nurse making the suggestions to me almost 6 years ago to try this way I would have never thought it possible to infuse at home.

      I am talking with my pharmacist tomorrow – but I am predicting a failing grade to this subq option for me.

      The hope was to not have the peaks and valleys associated with IVIG but I am patient and will continue to be careful on my life choices to manage the gap in between treatments.

      I also found out that the cost of the infusions is really only slightly cheaper because of the supplies needed but minus the nurse. This is only true if you are infusing at home. Cost between home and hospital infusing is much different.

      My insurance approves either and also approved the switch from brands.

      I would appreciate others who try and switch like Julie to share their story.

      I actually had not problem doing poking myself – after all I have been through – those itty bitty needles were nothing. And as Julie said – because of nerve damage I don’t think I feel everything and I actually get “stings and shocks” that hurt more than that!

      Stay tuned….


    • Anonymous
      April 4, 2011 at 9:44 pm

      Thanks for checking in and reporting on your sub Q experience. Seems to be a bit of a bummer so far for you–that is disappointing. Maybe it will take a couple of weeks or so to get it down pat? My husband wants to know if you are skinny or fat ? He is guessing you may be skinny and not have much fat on you to absorb the product. I know it really isn’t going into fat, as it is going under the skin, but maybe that is an issue?

    • Anonymous
      April 4, 2011 at 10:44 pm

      Please keep us advised as to your progress. I am seeing my neurologist on Friday, April 8th and was going to ask him about maybe switching over to subq due to vein issues. Now I’m not so sure.:confused: ๐Ÿ™

    • Anonymous
      April 5, 2011 at 6:28 am

      I’ve had problems with absorption too – certain places just don’t absorb as well as others… my legs are the worst and occasionally I will have to cut off one of the tubes because it starts leaking before the end of treatment. I will say that it did get better over time – in the beginning it happened every time, now it’s only occasionally. I suspect it’s because there isn’t a lot of fat where I’m poking on my legs… in contrast to my belly and the back of my arms. If I could reach the back of my thighs (and had the desire to stand up for a day or so) I’m sure it would absorb much easier. I’ve gotten around this by adjusting the dose (without my doctor’s knowledge – shhh!!!) On Mondays I do my legs and they only get 40mL, on Wednesday I do my arms and they get 50mL and on Friday I do my belly and it gets 60mL. That has been working out well for the past few months.

      I’m not concerned about the absorption rate – yes it’s a pain, but I’d be more concerned if it absorbed quickly as that could indicate cell or tissue damage. I’m fairly certain all my sites are still healthy and undamaged despite the repeated assaults. ๐Ÿ™‚

      Also, I was getting headaches in the beginning too – after some fiddling around I finally figured out it was the premedication that was giving me the headache and dizziness – specifically I was taking Zyrtec, a longer term antihistamine than Benedryl – eliminating all premedications took care of the headache, dizziness and nausea. Now I go without any meds and have few side effects other than the intense desire to dig my nails into the sites for about 15 minutes after treatment. ๐Ÿ˜‰

    • Anonymous
      August 1, 2011 at 12:36 pm

      Julie and Lisa,

      I was just wondering how the sub iq is working.

      It has not been approved in Canada yet but one day hopefully!

      Thanks for sharing it really helps the rest of us out.

      take care,
      Rhonda from Canada

    • Anonymous
      October 23, 2011 at 3:02 pm

      It looks like it has been awhile since anyone has said anything about subq for cidp. We went from Gammaguard to Gammunex because of terrible headaches and then started Hizentra 7 weeks ago. We were trained to give these to our 5 year old daughter for 3 weeks and then we are on our own. I will say that the infusion part goes great and seems healthier as it is not going in a vein. We love it that we do not have to go to an infusion clinic, too. Here is the hard part, she does not seem to be doing as well. During the day she seems good, except for some clingy issues that have been recent. At night, she has started to cry a lot and when we ask her what is wrong, she either says nothing or will make something up like her neck or she has to go to the bathroom. I have been thinking the worst as she also has arthritis that was caused by the same virus that caused her cidp. She is getting the ivig more for her arthritis than her cidp. Anything anyone wants to tell me would be appreciated.

    • Anonymous
      October 23, 2011 at 8:26 pm

      Hey Pam – Long time no talk. I wish I had more time to call you. Life has been pretty busy for me lately.

      Have you talked to the dr’s about doing the SubQ more frequently? That might help with some of Selah’s issues.