I don’t get it???

    • Anonymous
      May 5, 2010 at 1:20 pm

      On Monday, I had 90 grams of IVIG.

      Since then I have been in the worst pain ever! šŸ˜”

      My feet and legs are swollen and I am constantly getting electrical zaps. Along with pins and needles. I can hardly move.

      I have taken extra pain meds, hot baths, hot rice packs, cold rice packs, sleeping wiht feet in the air (that didn’t work either)

      I am hoping that maybe some healing is happening to cause all this discomfort!

      Anyone else get tons of pain right after IVIG?
      This is a first for me and I don’t like it!

      Rhonda from Canada

    • Anonymous
      May 5, 2010 at 2:47 pm

      Hi,
      You should find out if the brand of your last IVIG was changed without your knowledge. It’s never happened to me, but I know from past posts that you can get bad reactions to brands.

    • Anonymous
      May 5, 2010 at 3:54 pm

      Thanks Liz I’ll look into that.

      Rhonda

    • Anonymous
      May 5, 2010 at 3:54 pm

      Rhonda,

      I had my IVIG last Friday and, as I was leaving, the nurse told me that she had just received a notice stating some patients were experiencing bad side effects from the batch number of the IVIG I received:eek:. She told me the notice stated that some patients were experiencing “flu-like” symptoms. I’ve not had any adverse reaction to the treatment, but you might check with someone where you received the IVIG and ask them to see if there are any reported problems with the brand/batch of IVIG you received.

      Just a thought,

    • May 5, 2010 at 10:33 pm

      Hello Rhonda.

      Where are you in Canada?

      We are in Ottawa, Ontario. My husband is having icreased sensory symptoms since his IVIG two weeks agso- is this mean the IVIG did not work? He went to NY to have his diagnosis and treatment. No neurologist here taks him seriously.

      His is pain in areas that had decreased over the first two weeks of treatment.

      Is your pain sensory? Did you have this before treatment/

      Kathy

    • Anonymous
      May 6, 2010 at 11:35 am

      Linda-I’ll call the hospital and ask about reactions,thanks

      Kathy-I am in B.C. Did you contact the GBS/CIDP foundation of Canada and ask for a recommendation of doctors? Perhaps there is a doc in the area that can help you out. I find it hard to believe that you can’t find a good doctor. Do you have to pay out of pocket to see docotr in the states?

      I know there isn’t a good neuroligist around here but we can travel to Kelowna or Vancouver to see one. There are a couple of us that live in Northern B.C. but we learn to travel. šŸ˜‰

      thanks for the info

      Rhonda from Canada

    • Anonymous
      May 8, 2010 at 1:38 am

      90 grams a day!!! WOW!!! That is a whole lot of IVIG! Is that your normal dose? I am new to IVIG. I have only had 2 so far at 30 grams a day. But I do suffer from all the symptoms you mentioned. Did they up the dose, manufacturer, anything? Something got you out of your comfort zone and you need to find out what in order for it not to happen again. That being said, did you have any of those symptoms when you first started IVIG? Did they go away in time and you are now reliving them? Just wondering if there is a possible light at the end of the tunnel that with enough treatments, my side effects will ease up! Feel better!:)

    • Anonymous
      May 9, 2010 at 1:15 am

      [QUOTE=guskno]90 grams a day!!! WOW!!! That is a whole lot of IVIG! Is that your normal dose? [COLOR=”Blue”]I get 90 grams in one day once per month[/COLOR]

      I am new to IVIG. I have only had 2 so far at 30 grams a day. But I do suffer from all the symptoms you mentioned. Did they up the dose, manufacturer, anything? [COLOR=”Blue”]No [/COLOR]

      Something got you out of your comfort zone and you need to find out what in order for it not to happen again. [COLOR=”blue”]Not sure what is going on but I don’t like this new pain šŸ™ [/COLOR]

      That being said, did you have any of those symptoms when you first started IVIG? Did they go away in time and you are now reliving them? [COLOR=”Blue”] Pain seems to come and go, the IVIG takes the edge off and helps control the electrical zaps![/COLOR]

      Just wondering if there is a possible light at the end of the tunnel that with enough treatments, my side effects will ease up! Feel better!:)[COLOR=”blue”]Everyone reacts differently to IVIG. Always look for the light at the end of the tunnel! šŸ™‚ [/COLOR][/QUOTE]

      Rhonda from Canada

    • Anonymous
      May 10, 2010 at 2:10 pm

      HI,
      My daughter experienced a lot of pain, she normally could not feel her legs and feet. We were told that this was healing of the nerves and that as they regenerate it is like when you get frost bitten and then your skin thaws, the pain tinglyl etc. will feel the same way. I am sorry you are feeling this. Heat seemed to make it worse for her she slept with no covers on her legs or feet because it was very painful at night when sleeping. I hope this helps you in come small way. Good Luck and I am so sorry you have to experience any of this.
      Mom2heather

    • Anonymous
      May 10, 2010 at 2:35 pm

      Rhonda,

      I am so very sorry you are in alot of pain. I was getting 95mg. of
      gammaguard 1x mth for almost a year. I just keep taking my pain meds and hope for the best. My new neuro says i DONn’t have cidp
      and all my treatments were for nill. I’m with you on not getting it.
      I wish I never would of gone to doctor in first place. Now I don’t know
      what I have????

    • Anonymous
      May 10, 2010 at 5:52 pm

      Ms. Judy…

      Does this new neuro specialize in CIDP?

      If not I would try to find one that does, many neuro’s don’t fully understand CIDP from what I am hearing.

      How do they know you don’t have CIDP?

      Can anyone help Ms. Judy find a neuro in her area if she needs it?

      Keep your chin up!

      Rhonda from Canada

    • Anonymous
      May 10, 2010 at 9:10 pm

      Bad, that does or under dosing isn’t helping, or quality of the dose? Call the medication manufacturer ASAP! And LET THEM KNOW! In the long term? Could avoid lots of long term problems in the future -trust me on this!

      Or, nerve pain? Is that IT’sWORKING! Nerves die by the mile once the things are in place to allow them to die? And of course-HURTS BEYOND HECK!!!
      But nerves re-growing? and then trying to re-connect? Wow! That’s a whole other kettle of fish. The researchers know 98% more about nerves dieing than how they re-grow! Nerves die in seconds/minutes, but they take months to re-grow or new ones to grow and then re-connect. This is when the what I call the [B]OH WOW!!![B][/B][/B] moments do occur? The make you suck in your breathe and almost want to scream at times! I just turn myself down a notch and say to myself? “SELF? These nerves want directions…can YOU help them?” Sometimes it works…yet, i’m still breatheless at times! All these zeeps? Etc? I keep telling myself that it’s HEALING! And leave it at that… To worry more? Is pointless, it’s gonna do it or not!
      These days? I welcome those breathe-taking moments? Let’s me know I just mite be getting somewhere! POSITIVE! Unless, I fall over-that’s a different issue tho. Hugs!

    • Anonymous
      May 10, 2010 at 10:42 pm

      Dear Rhonda,

      Please do not take this the wrong way, and I do not want to sound rude, but I agree with gusko. If your doctor is using standard protocol, then your weight would be approximately 495 pounds in order to get 90 grams in one IVIg treatment each month…unless you are getting it once a month but over a five day period – this would be approx 18 grams/day and would then indicare your weight to be approx 100 pounds.

      ms judy,
      [QUOTE]I was getting 95mg. of gammaguard 1x mth for almost a year.[/QUOTE] I do not want to sound rude with you either ms judy. However, 95mg of IVIg is 0.10 grams – this is 1/10th of one gram…not enough to help anyone with anything.

      Warmest regards to both of you.

      Jethro

    • Anonymous
      May 11, 2010 at 11:51 am

      [QUOTE=Jethro]Dear Rhonda,

      Please do not take this the wrong way, and I do not want to sound rude, but I agree with gusko. If your doctor is using standard protocol, then your weight would be approximately 495 pounds in order to get 90 grams in one IVIg treatment each month…unless you are getting it once a month but over a five day period – this would be approx 18 grams/day and would then indicare your weight to be approx 100 pounds.

      [/QUOTE]

      Jethro,

      Thanks I will not take this the wrong way and thanks for the insight. I do not weigh 495 pounds but I am no lite weight Either. LOL!

      Please help figure this out! I weigh 190 pounds and I am getting 90 grams over 1 day once per month. It takes all day and we start slow and build up.
      We start the infusion at a rate of 45 for half and hour then bump it up to 90 for half and hour and then up to 120 where I stay for the rest of the day. If at any time I feel unwell or my heart rate or blood pressure or anything changes then we slow the pump down again.

      Last year I was getting 90 grams each day for 2 days so total was 180 grams but that was every three months!

      I am confused! :confused:

      Please help!

      Rhonda from Canada

    • Anonymous
      May 11, 2010 at 1:09 pm

      Rhonda:

      I haven’t read the whole thread but as far as doses go, you’re at the same level as I am. I’m hooked up to the pump right now at home.

      I’m a male 220 pounds and I get 102 grams. Start at 60 and work up to 400 over the course of an hour.

      I’m very lucky as other than being really tired for a day or two, I tolerate the IVIG very well. I’m also on 2000 mg of Cellcept daily at present. Been there for over a month. I think its all helping and at least I’m not getting any worse.

      My nurse thinks my dose is high also, but don’t feel like the lone ranger as I’m there too.

      Hope this helps.

      Ron

    • Anonymous
      May 11, 2010 at 4:46 pm

      Ron,

      Thanks, it is reassuring to know that I am getting the right amount of IVIG.

      I am glad that you tolerate it well, I have to take pre meds and continue with them for a couple of post IVIG days,

      Enjoy the day as best you can, rest lots

      Thanks again for your post.

      Rhonda

    • Anonymous
      May 11, 2010 at 8:07 pm

      Rhonda & Ron,

      Please note I said “the standard amont.” However, the gram amount that is ordered by your doctor should be understood between he/she and you – you should know why you are receiving that amount of IVIg.

      Ron, an infusion rate of 400 ML/hr should never happen. Read the literature that comes with your IVIg…you will find that it probably recommends that a rate never exceed more than 250 ML/hr.

      Best regards.

      Jethro

    • Anonymous
      May 11, 2010 at 9:12 pm

      Thanks Jethro:

      I just go with what Johns Hopkins Neuro chief says. I’ve never had any problem with the 400 rate but I will definitely do some reading.

      If you can tolerate the rate, I wonder if it makes any difference.

      I’m still learning about all this so I’ll ask at my next appointment.

      Cheers

      Ron

    • Anonymous
      May 11, 2010 at 9:47 pm

      Hubby is 240 lbs. and gets 120 G. every three weeks. He get Privigin and they start at 72 ml an hour and ramp it up to 320. Supposedly that product is designed to allow a fast rate. His 120 G. is spread out over 2 days. In 3 weeks when he gets his next treatment, he is being weaned down to 100 G. and it will be over two days. I doubt whether he will get the whole dose in one day until he is down to 80 G. He has had no side effects such as bad headache since he IVIG began to be infused with a pump, and actually the switch to Privigin from Gammunex has stopped all complaints of headaches and post infusion fatigue.
      Laurel

    • Anonymous
      May 11, 2010 at 10:13 pm

      Rhonda I forgot to say that the standard maintenance dose seems to be 1 Gram per kilogram of weight monthly (or whatever frequency holds you). So at 190 lbs. that would be 86.3 Grams. Some literature indicates that many may be maintained at .6 Grams per kilogram of your weight. So from understanding your dosage seems pretty standard.
      Laurel
      I weigh 180 lbs. since we girls are revealing our weights.

    • Anonymous
      May 12, 2010 at 12:34 am

      I’m reading the pump rates and am feeling utterly astounded. My neuro NEVER lets anyone go over “180” and that just for a few folks who can tolerate it.

      I do “90” max for 50 grams and it takes 1 1/2 hours to raise it from 15-20 up to “90”. If the rate is increased too quickly or too high I feel muscle spasms/headaches hitting me full force. My total infusion time is 7 hours.
      My last nurse got fired because she ran my pump at “125” and I got so ill.

      Is this something that done in Canada?? How many hours does your infusion take??
      Please read up on safe infusion rates. This Forum is great for finding answers/ideas to infusion/IVIG problems.

      Gee-400-no way.

    • Anonymous
      May 12, 2010 at 7:04 am

      Dear laurel,
      [QUOTE]Hubby is 240 lbs. and gets 120 G. every three weeks. He get Privigin and they start at 72 ml an hour and ramp it up to 320. Supposedly that product is designed to allow a fast rate. His 120 G. is spread out over 2 days.[/QUOTE] Privigen is a 10% concentration…this means if your husband gets 120 grams, there is 1200 ML of IVIg to be infused.

      I still can not understand the amount of grams for 240 lbs. Nevertheless, he probably gets 600mg each day, and at an infusion rate at 72 ML/hr the first hour, then 320 ML/hr for the balance, it probably takes about 2hrs and 40min for each day’s infusion.

      Warmest regards.

      Jethro

    • Anonymous
      May 12, 2010 at 12:07 pm

      [QUOTE=Jethro]Dear laurel,
      Privigen is a 10% concentration…this means if your husband gets 120 grams, there is 1200 ML of IVIg to be infused.

      I still can not understand the amount of grams for 240 lbs. Nevertheless, he probably gets 600mg each day, and at an infusion rate at 72 ML/hr the first hour, then 320 ML/hr for the balance, it probably takes about 2hrs and 40min for each day’s infusion.

      Warmest regards.

      Jethro[/QUOTE]
      Jethro your calculation is dead on. He is through in about 3 hours due to delays getting set up etc. He loves the Privigin as they can run it through so much quicker, but when he came home from his treatment yesterday he commented he is the only patient that has wanted to take his rate up that high. Maybe we are flirting with problems to push it that high even though the manufacture’s limits are being followed. I think I will talk to hubby about getting them to keep it slower. Thanks for your input. I thought l Gram per kilo was pretty standard?
      Laurel

    • Anonymous
      May 12, 2010 at 8:27 pm

      IVIG only last 21 days in you system (correct me folks if I’m wrong) so you must crash between each infusion???
      Three months between treatments?? What is your neuro thinking??
      This means you’re not receiving any benefits for your illness for 9 out of 12 weeks.
      IVIG needs to stay steady in your body to combat the CIDP. I just realized this re-reading the posts. How are you doing on this schedule??

    • Anonymous
      May 12, 2010 at 8:30 pm

      IVIG only last 21 days in you system (correct me folks if I’m wrong) so you must crash between each infusion???
      Three months between treatments?? What is your neuro thinking??
      This means you’re not receiving any benefits for your illness for 9 out of 12 weeks.
      IVIG needs to stay steady in your body to combat the CIDP. I just realized this re-reading the posts.
      How well are you doing on this schedule??

    • Anonymous
      May 12, 2010 at 9:11 pm

      [QUOTE=limekat]IVIG only last 21 days in you system (correct me folks if I’m wrong) so you must crash between each infusion???
      Three months between treatments?? What is your neuro thinking??
      This means you’re not receiving any benefits for your illness for 9 out of 12 weeks.
      IVIG needs to stay steady in your body to combat the CIDP. I just realized this re-reading the posts.
      How well are you doing on this schedule??[/QUOTE]

      It totally depends on the person (symptoms, length of illness, physical status, etc.). We have people in my infusion center that come every 3-4 months. It just depends on the Dr, the patient and the course of the illness.

      Many of these patients are on other medications for their CIDP, but not all are. Patients can’t be grouped into a once a month infusion schedule. Some also come every 2 weeks.

      There’s no reason some patients couldn’t be successful on that schedule. The whole picture always has to be looked at.

    • Anonymous
      May 12, 2010 at 10:04 pm

      Rhonda ~ the worst pain I ever experienced w/CIDP was about the 3rd evening of my initial 5-day IVIG treatment. The pain was throughout my entire body but especially in my knee joints and my lower legs were on fire. That was scary and the pain was ‘moan out loud pain”, not the constant numbness, the electric shock, the ‘arrow in my shoulder’, ‘alligator bite on my foot’, constant fatigue or the other bizarre symptoms I still have. IVIG has ‘worked’; for me for over 10+ years now and I take 80/grams each 6 weeks along with 3mg/day alprazolam. The alprzolam (xanax) was prescribed because after sleeping about 15-20 hours a day for a year ~ one day, I couldn’t sleep at all! After 3 days of that my doctor gave me alprazolam for ‘anxiety’. It has a positive effect on me as it reduces my numbness and I get a ‘normal’ 8 hours sleep.
      I wish you well and hope you find the right combination that works for you.