Anybody doing sub-cutaneous Ig?

    • Anonymous
      November 24, 2009 at 5:00 am

      Due to a whole host of issues to long to list here my neuro wants to switch me to sub-cutaneous Ig. I seem to remember some folks discussing this last spring but I was wondering if anybody pulled the trigger and started this route. If not I will be starting as soon as everything gets approved and I will let you all know how it goes. If anybody is already doing SubQ please let me know what you think about it. I am not concerned about side effects, just whether it works as well.

      In the meantime I have been designated the flu-magnet for the eastern seaboard and I’m seriously considering moving to a plastic bubble in the arctic circle. 😡 The doctor does not believe this has anything to do with my fluctuating immune system, rather he says “it’s a really bad flu year.” All I can say is that by going to get my blood work done on Friday I got sick again even though I was wearing a mask and coated with Purell.

    • Anonymous
      November 24, 2009 at 12:43 pm

      I remember reading last spring that Sub Q IVIG was in trials for people with CIDP. They weren’t sure if it would work effectively for treating CIDP.

      The thought was that it’s going under the skin & not directly into the blood stream. I remember reading there was concern with how much was being absorbed too.

      I met 2 young boys who do Sub Q for immune deficiency. One boy, who was 12, told it was the best thing ever. He showed me where he gets stuck in his stomach. He says it doesn’t hurt at all & his infusions go much faster. Apparently he had really bad reactions to IVIG & since switching he has been tolerating it much better.

      You could be the guinea pig here & let us all know how it goes. It’s something I have considered doing for Emily when she’s older. Right now I don’t think she’d take too well to being stuck in the stomach.


    • Anonymous
      November 24, 2009 at 7:35 pm

      Just a few random thoughts.

      1. This is a really bad flu season.. everywhere.
      It seems like everytime I go to the Dr.’s loads of people are wearing masks (requirement if people come in with “flu symptoms”)

      2. Although SQ IG doesn’t go into the blood stream, it very well may be a good alternative if IVIG isn’t an option for you.

      I think this for several reasons.

      One reason is people with MS… all their treatments (with an exception of Tysabri) are SQ.
      *and very few people with MS are given Ty*

      If their treatments are successful with SQ injections, I’m going to have to believe a CIDP treatment could be successful as well.

      Another thing..
      Do you know how many medications there are that are given via SQ?
      The meds do eventually get into your blood.
      They just aren’t as rapid acting as an IV where its given directly into your vein.
      A plus though is that they are faster acting than a pill though, since they don’t have to be digested.

      A SQ medication is given into the fatty layer (stomach, back of arms, sides of legs)
      Think.. if these medications weren’t very effective, why do we give insulin this route?
      *If you don’t know what Heparin is.. its a blood thinner. (prevents people from developing clots, mostly used after surgery, or people with heart problems)

      .. ne way, I’m sure you grasp what I’m ranting at.

      I’m sure the SQ IG is perfectly effective.
      Its just not as fast acting as IVIG.

    • Anonymous
      November 24, 2009 at 8:00 pm

      My nurse has alot of patients with sub-q but they are immune deficient patients. She was high on me trying it till my Dr said no. He says no to everything that isnt his idea , I think.

      There was an article in the IG living magazine that some of us get.

      My nurse says there are less “peaks and valleys’ with sub-q and that it supposedly helps keep you more stable. It goes into the tissue and most of her patients are on their own now…meaning she gets them to where she doesnt need to come out. The meds go right to their home and they do it all themselves…eventually. Also, it’s done more frequently than IV.

      I’m doing weekly infusions now…cant imagine any more frequent. I”m in a really bummed mode b/c now I’ve missed all this work and pay , am racking up huge amts with the insurance and I’m not getting any better.
      I’m not giving up…but sometimes ready to just give in.
      I’m sick of it. Tired of the inconvenience, big time. I just wish I’d see some results. I know you know…and many of us walk the same steps. It’s so very very frustrating.

      NOt sure what the new year will bring now…I go to the Dr next week to see what we’re gonna do. I’m at the end up my rope, still hangin on…but it’s gettin tougher all the time.

      Take care of yourself…sorry to hear you are a giant flu bug, sister. That must be no fun for you either.

      I hope you do well with this sub-q. Keep us posted.

      Happy Thanksgiving !

    • November 25, 2009 at 12:54 am

      Immune defficient people typically use MUCH LESS ivig than we do. There would be several sticks that take a while to do. If it is your only option, then that is what you have to do. I have to say, now that I broke up Kevies treatments to every 2 weeks instead of all of it at once, we no longer are experiencing ivig headaches. Now regular migranes, that is a whole other story. We see the neuro on Dec.11th regarding thos awful debilitating headaches. He has already missed 20 days of school this year. Anyway, Julie about the sub q, I say give it a try if your doc approves. What do you have to lose besides the side effects you have now!!
      Dawn Kevies mom

    • Anonymous
      November 25, 2009 at 3:04 am

      Thanks ya’ll. I am still trying to get in touch with a real human at my insurance company but since it is now FDA approved for CIDP I don’t think they will object. I’m setting up a dialog between my nurse, me and the doctor and we’ll hash out all options and dosages. I’ll let you know when we get started but I’m pretty sure we’ll go the sub-Q route. I don’t THINK I’ll be a weenie about sticking myself as I had to do my own stitches when I was in the Peace Corps and didn’t pass out from that… but you never know… people change.

      IVIg works for me – its just the side effects that have crept back in and are crushing me. I can live with the headaches but the kidney pain and phlebitis are really unpleasant. Switching to weekly treatments helped but now a year later the side effects have crept back up to the “somebody please shoot me” level. In addition I’m just not doing as well as I was six months ago… my left side has started acting all freaky. I’m not sure how a single eye can have double vision but my left eye is all whacked out and my left arm and leg twitch and spasm much more than they did. We think this is because I’ve been sick so much but we’re running more tests to be sure it’s not something else as previously it was my right side that was more affected.

      As for the efficacy – we will just have to wait and see. I have no reason to believe it will not work as well as IVIg but I do suspect there will be some transition time while my body adjusts to the new route of delivery. Cross your fingers we’ll get this started with the new year. I promise I’ll update you all if/when I try it.

    • Anonymous
      November 25, 2009 at 8:16 am

      It is true that it involves several sticks…but I’ve heard they arent as painful as an iv trying to be slammed into your hand.
      My average each week is three in the hand that get missed or blown and then move on to the arm.

      good luck Julie.

    • Anonymous
      November 25, 2009 at 10:18 am

      The 12 year old kid I was talking to about Sub Q said that the needle is VERY small & he doesn’t feel it at all. His mom (who is a nurse) puts it in. I think he said his treatments only last an hour now. When he was doing regular IVIG he had to go into the hospital for his treatments (and they took forever) because he had such horrible reactions from it.

      I didn’t know Sub Q was FDA approved for CIDP! That is great!

      Here’s hoping you can speak to a real person at the insurance company soon & that they approve you for this. I’m excited to see how you respond to it.

      BTW, Emily’s right eye was affected & her left wasn’t. When she’s in a relapse she will get double vision in her right eye only. Do you have full range of motion in your right eye? I also think I remember the EMG’s showing her right side was slightly more affected than the left.

      Emily was sick with a stomach virus a few weeks ago. It was awful. She is still complaining of stomach aches. It seems after she gets sick she will always have a stomach ache for 1-2 months afterwards. It’s very bizarre.

      Hope you feel better soon & have a happy Thanksgiving!