Subcutaneous IVIG Vivaglobin

    • Anonymous
      April 15, 2009 at 6:14 pm

      Has anyone tried this delivery method? It sound pretty good.
      Please tell us your viewpoint about it.

      Once a week, do it yourself, can take it with you when you travel if necessary. keeps more constant level, less headaches.

      Sounds like injection site reaction is the biggest issue. thanks–tim–

    • Anonymous
      April 15, 2009 at 7:09 pm

      Hi Tim,
      We asked hubby’s neurologist about this method about a year ago, and she said it wasn’t used for CIDP yet. I hope someone has some updates as I think it sounds like a great way to go. And it is less expensive too.

    • Anonymous
      April 15, 2009 at 8:54 pm

      Hi Laurel,

      I was told by the woman who sends me my medical supplies and gamunex.
      She must be aware of it for IVIG. she said it was pretty much the rave with
      those she knows of who use it.–tim–

    • Anonymous
      April 15, 2009 at 9:39 pm

      Tim, I have recently heard all kinds of good stuff…I will email or post tomorrow…
      stay tuned.


    • Anonymous
      April 16, 2009 at 1:36 am

      We (hubby and I) will be waiting to hear what you have learned.

    • Anonymous
      April 16, 2009 at 8:00 am

      My home health nurse has about 4 or 5 other patients that use this method.
      One of them, I beleive, has CIDP.

      She has told me alot about the procedure…my memory isnt the greatest, but, here is what I know.

      The vivaglobin goes into a pump and there are anywhere from four to ten needles that you stick into your stomach, legs, arms…each needle can only hold 15ml so depending on your dose, the amt of needles you will have.
      The needles are attached to the small pump with tubing. Sticking yourself isnt suppose to feel anyworse than a small bee sting and goes away. Side effects can be redness at the sites but should also go away.
      The vivaglobin goes right into your tissue rather than thru an iv and studies have shown that there are less peaks and valleys like there are with IVIG…by that I mean, the ups and downs. After some training, you can infuse yourself, it takes about an hour and a 1/2 and depending again, on your dose, one to two times per week at your convenience. Once you are trained to do it yourself , you dont need the nurse to come to the house…AND, it’s cheaper. YOu can also get up and walk around ,etc.

      I have a dvd from my nurse on this stuff to watch and will do so this weekend and let you know what else I learn. It has only recently been approved for CIDP patients and there is an informative article in the last [B]IVIG[/B] [B]Living magazine[/B]. I get this magazine at home…you could probably go to the website to read the article and sign up for your free copy.

      I havent talked to my Dr about this yet but I am planning to do so. I have a whole lot of ups and downs and am just looking for a plateu. I’m to the point of desperation. I have to get better…or at least stop going up and down.

      I’ll let you all know more after I watch the DVD. I’m hopeful !

      well wishes everyone…and I’ll post as soon as I watch the DVD. I am off work on Friday with not ALOT planned for the weekend for once so I should get it done. ๐Ÿ™‚


    • Anonymous
      April 16, 2009 at 8:03 am

      The needles go into either the legs, arms, stomach….not all three. If in your stomach, you “pinch an inch” and put them in there spacing them out evenly. I didnt mean to sound like you stick the needles all over the place….one location per fusion.

    • April 16, 2009 at 9:59 am

      My only concern besides volume (Kevie gets 80g which is nothing compared to some, but still alot) is how much actually gets wasted being that it is absorbed by the body and not directly into the blood stream. currently mostly immune defficient people use it as a delivery method, but again they use significantly less than a cidp patient. I think it is too new for myself personally to consider for Kevin. I would be worried about loosing our gains. I think he also might find it more traumatic being stuck so many times. It might be easier for an adult to handle.

      I also am not comfortable with not knowing an exact unit of measure for lack of a better way of explaining it. I just don’t understand how to predict what is used the way it needs to be and what is absorbed as waste. I will be very interested to follow this in the event it could one day be an option. People who have severe reactions to ivig could benefit greatly from this delivery method. Now that Kevie has done well on one dosing of Octagam vs the Gammaguard I will just pray it continues. Should he again have problems, sub-q may have to be an option. I am anxiously awaiting news and studies on this topic!!! It is always good to have options!!
      dawn Kevies mom

    • Anonymous
      April 16, 2009 at 11:47 am

      [QUOTE=ConnorZmom]My home health nurse has about 4 or 5 other patients that use this method.
      One of them, I beleive, has CIDP.
      Hi Stacey,
      Thanks for the info. I just went to the IG Living and read the article which I will print later. Then I emailed our local blood bank(they are responsible for allocating IVIG in the Province). I cited the article and asked if they were using the product yet. And I volunteered hubby for a trial if they have any going to test it out here. He doesn’t know yet that I volunteered him as he is on day 2 of his monthly IVIG treatments at the hospital. It sure would be nice to be able to receive it at home without him spending two days driving into town an hour each way and then being hooked for 8 hours at a time.

    • Anonymous
      February 9, 2010 at 10:53 am

      I’ve been approved and will transition over to this method in the next two weeks, assuming FedEx can make it through the snow to deliver the stuff. I’ll be doing it twice a week for about an hour per session. Depending on the site and the dexterity of my fingers either I will do it, my nurse will do it, or my husband will do it. I’ll keep you all updated on how it all works out but I am very excited about the prospect of not having a headache. ๐Ÿ˜€

      BTW – while my nurse has other patients with CIDP who do sub-q I will be the first for my doctor and while he was willing to give it a shot I kinda had to walk him through the paperwork and bug him to get the ball rolling. Once the paperwork reached CSL Behring things moved pretty quickly. Fortunately for me the pharmacy who will supply my new sub-q Vivaglobin uses my nurse so the transition will be seamless. I hate having to manage my disease treatments with a whip and taser but sometimes you just have to look out for yourself… ๐Ÿ˜Ž

      If you have any questions feel free to ask. ๐Ÿ™‚

    • February 9, 2010 at 10:51 pm

      We asked about this for Julie Ann and they said she didn’t have enough belly fat.

    • Anonymous
      February 10, 2010 at 5:25 am

      the four sites are upper arm fat, belly button fat, love handle fat and inside of thigh fat – all of those are well covered for me but would be a problem in a thin child for sure. I was hoping to only use the belly and love handle sites but my nurse says we have to switch around so the fluid doesn’t build up in one location. I never thought I’d be grateful for the extra padding so thank you for that perspective. ๐Ÿ˜‰

    • Anonymous
      February 10, 2010 at 8:02 am

      Excellent Julie,
      Can’t wait for the blow by blow on the system. I think this system will work well for many.–tim–

    • Anonymous
      February 10, 2010 at 9:17 pm

      After 6+ years getting poked I’m really hard to ‘stick’ these days.
      You can contact Vivaglogin and get their DVD on it.
      For me tho my concern was once you learn how to ‘do IT’ [w/the nurse] you are on your own! No hand holding afterwords.
      Good parts: You can maintain your #’s more consistently. Do it on your own when you want to w/in a certain time frame.
      Bad parts: You get nurse guidance for 2-3 times and then you are on your OWN.
      Me? I went and got a port put in. Having had one whopper aseptic meningitis reaction [at a hospital no less] for standard IG procedures? I want a nurse to be sure I am not having anything untoward happening. Such things can happen too fast for my comfort.
      Besides I HATE NEEDLES! Always have and always will. The less ‘needeling’? The better! At least for me…the idea that I’d have to insert multiple needles into myself, literallly makes me light-headed. No more hunt and ***** on me! Ironic as I’ve given LOTS of shots to big animals in a prior life! Oh well.
      IF you aren’t quirky in this way? Go for it! Worth the try, at least.

    • Anonymous
      February 11, 2010 at 4:27 am

      I’m not quirky about needles as long as I don’t spend too much time thinking about it, I had to give myself stitches once when I was in the Peace Corps (no scar!!!). But in my case I don’t have to give up my nurse – he is not convinced I have the manual dexterity to stick myself and if it turns out that I don’t then he will always do the sub-Q treatments. We are training my husband as a back-up and he says he will have no problems sticking needles in me (!!!:eek:!!!) so that allows me even more flexibility. The needles just go under the skin so it’s not like I have to hit a vein – rather I just have to miss them which doesn’t seem like it will be a problem since they seem to sense a needle coming and run anyway. :rolleyes:

    • February 11, 2010 at 11:49 am

      Hi Julie,
      I am anxiously awaiting the start of your injections, as you and Kevie have suffered so badly with these reactions!

    • Anonymous
      February 26, 2010 at 9:05 pm

      I have CIDP and I’ve been on IVIG for 5 years at 45 grams/mo. Even though Sub-Q been approved, my doctor calculated that I would need too much of the IG to make it feasible. He calculated 4 ‘sticks’ each week (16/mo). He was afraid of excess tenderness and possible infections.

    • Anonymous
      March 4, 2010 at 5:54 pm

      I have been using Vivaglobin for the last seven months. Once the nurse taught me how to set up the needles and the pump I have been on my own. I get 11.52 grams three times a week through five needle sites, I had been getting 50gms. of IVIG twice monthly. I have done very well, no side effects, no headaches, or any other symptoms. The first few times I did get red welts at the injection sites that lasted for about two hours. After that, no reaction at all. I use my belly for every infusion and have never changed the site. I was taught that after a while you develope a “pocket” for the med to go into and that’s what stops the site reactions. It’s great because when I was getting IVIG at the hospital I had to have solumedrol as a premed every time because I had a reaction at one point. Now I don’t take any premeds at all. I can infuse the Vivaglobin when I want to, on my own schedule. I don’t get the ups and downs like I did with IVIG. I have more energy than I ever had before and seem not to tire so easily.

      My understanding is that many doctors use Vivaglobin for CIDP and it is still in trials at the manufacturer. I’m not sure about insurance coverage. I was able to get it because I also have an immune deficiency.

      If anyone has the opportunity to try Vivaglobin, I would highly recommend it. The phamacy that supplies it for me has two other patients with CIDP that use it and several patients with immune deficiencies.

      I hope this info helps. Best wishes for anyone able to give it a try. I hope you’re as pleased as I am.

    • Anonymous
      March 5, 2010 at 3:21 am

      Barbara – good info, thanks for letting me know of your success. I’m going to respond on my other thread… but I will copy parts of this message over so people don’t get a crick in their neck going back and forth.

    • Anonymous
      March 6, 2010 at 6:17 am

      Thanks Barbara,

      Your feedback on this was very helpful to all. Please continue to add any feedback about the procedure as it is so new and many are interested to hear any tidbit about it. thanks–tim–