Does IVIg make your sweat smell like ammonia?

    • Anonymous
      March 30, 2008 at 5:37 am

      I don’t always sweat at night but when I get IVIg treatments I sweat so much I wake up a couple of times and have to change my shirt because it’s soaking wet. My shirt always smells horrible – sort of a combination of smelling like urine and mold, the moldy smell I assume is because my shirt has been soaking wet for awhile… but what’s up with the ammonia/urine smell? I’m getting some blood tests done on Wed. but I’m wondering if it’s because I retain so much water when getting IVIg my urine output drops – my intake of fluids doesn’t even come close to my output.

      I feel pretty sick right now actually. Apparently my doctor was right about the meningitis. It started on the second day of treatment and has varied from about a 3 on the pain scale all the way up to an 8 or 9. We tried reducing the rate down to 50/hour but that didn’t have any impact. It doesn’t seem to be either dose, rate or batch related – apparently my body just doesn’t like it much anymore. We’re going to try getting a little solumedrol w/ the treatment, if that doesn’t work my nurse suggested subcutaneous IVIg. I thought that was only for immune deficiencies but he says he has other CIDP patients that get their IVIg subcu. plus it’s something he can teach me to do myself weekly and he says it practically wipes out any reactions to it you might have. I’d be willing to trade stabbing myself weekly for the unbelievable light blindness and pain that comes with this meningitis. We do have one room in the house that is tolerable to me, only because it’s shrouded with thick black curtains and has no reflections of light anywhere. I finally figured out how to turn the brightness down on my laptop too so I can actually use it for more than a few minutes at a time now.

      Sorry to be complaining so much – I probably shouldn’t post when I don’t feel good but since that is becoming a constant thing…

      Julie

    • Anonymous
      March 30, 2008 at 8:14 am

      Julie,

      Between the residules and side effects of IVIg I too have a sweat problem. However, only one course of the IVIg for 5 treatments. Let us know if the proposed change in you treatment works. Sounds promising.

    • Anonymous
      March 30, 2008 at 8:53 am

      in the past when using IVIG diluted with saline – mine seemed ‘salty’. I don’t have this problem with the smell using a different IVIG with glycine. Same about the headaches – changing brands made a BIG difference for me.
      That pain IS excruciating tho!

      I DO sweat tho more profusely after infusions. Since I’d just about stopped sweating completely at onset, I am happy to sweat anywhere at anytime these days.

      For the first 1-1/2 years of infusions I was gaining 4 pounds each infusion and losing 2 before the next one. That has stopped happening – thank goodness! I don’t know why this has happened, but I’m just glad I’m not gaining any more?

    • Dawn Kevies mom
      March 30, 2008 at 11:05 am

      Julie,
      So sorry you are feeling awful, although I have never felt this pain, i experience it every month with Kevin. We too are going to try some tweaking one more time, and then explore the possibility of the solumedrol, or gammunex. I really don’t see how gammunex will make a difference compared to the gammaguard, as they both use glycine. I guess it is worth a try! Try to hang on and remember how strong you are after the treatment and how far you have come pre ivig. Hope you are feeling better soon!
      Dawn

    • Anonymous
      March 30, 2008 at 12:11 pm

      [QUOTE=Dawn Kevies mom]Julie,
      So sorry you are feeling awful, although I have never felt this pain, i experience it every month with Kevin. We too are going to try some tweaking one more time, and then explore the possibility of the solumedrol, or gammunex. I really don’t see how gammunex will make a difference compared to the gammaguard, as they both use glycine. I guess it is worth a try! Try to hang on and remember how strong you are after the treatment and how far you have come pre ivig. Hope you are feeling better soon!
      Dawn[/QUOTE]

      My husband has asked for Gammagard the last two treatments. No more headaches and no more fluid retention. He had been getting very puffy with the Gammunex. So I guess the type of IVIG one uses depends on one’s bodys reaction to it. He has never noticed a smell to his sweat, but he does sweat more than normal. I would suspect an ammonia smell is somehow related to kidney function. Diabetics having a ketone smell to their breath when experiencing a reaction.
      Laurel

    • Anonymous
      March 30, 2008 at 6:31 pm

      Julie, Don’t be sorry for posting when you don’t feel good—thats what we are here for-to help you feel better after you vent to us. We don’t mind at All!!!
      I have been wondering about the same thing with my sweat and smell for the the last 2 months myself. I thought it might be, in my case, from the pred I’m on. What is worse is the smell is still there even after I shower and scrub with a brush and nice smelling bath gel. It has been driving me crazy! I use alot of body spray before going around others. I know there are certain foods that will come out through the pores but I haven’t eaten any of those foods in the past 2 months. Can the enzymes be affected by cidp? or pred?

    • Anonymous
      March 31, 2008 at 10:19 pm

      i’m a stinky sweater too!! i’ve been getting ivig weekly for the most part of two years now. only stopping briefly to experiment with PPE. i take imuran and have wondered if that could be the cause. i sometimes have to change shirts in the night from sweating so much. the shirt will smell oober funky!
      just another bonus to this fun illness!!
      peace,
      flower

    • Anonymous
      April 1, 2008 at 2:21 am

      Hey ya’ll,
      Thank you for all your responses. I have no idea what is causing the stinkiness but I suspect it has something to do with breaking down all the extra antibodies. A long time ago I could have told you exactly what they broke down into but my brain has long since given up on complex thinking. At any rate, it’s fortunate I sleep on a plastic air mattress. :rolleyes:

      My head is still aching. I tried the fish oil stuff and believe it or not it made me sick to my stomach, even though it was enteric coated. I think it’s because I was already nauseated from the pain so I’ll try the fish oil again – later, when I’ve forgotten how much it hurt to throw up with meningitis.

      On a good note – my legs are definately stronger. 😀

      Thanks for your support,

      Julie

    • Anonymous
      April 1, 2008 at 2:49 am

      Hi, my guess is that the ammonia smell is because of the protein load that is present in IV IgG. When protein is broken down, it makes ammonia and the body trys to regulate the amount of protein in the blood. this means that if there is a lot of extra protein, it will be broken down.
      I also have gotten night sweats with IV IgG infusions. I thought it was associated with cytokines released in response to the IV IgG, but do not know this for sure. It just makes a little sense with the “flu-like” feeling that comes with the infusion.
      WithHope for cure of theses diseases