IVIG Question – Repeated Treatments

    • Anonymous
      July 26, 2010 at 11:25 pm

      I have searched the site to see if I could find this answer, but I may not be adept at the search feature…

      I remember reading posts regarding IVIG and the need for multilple treatments. Even to the point where people could say how long they could go before needing another treatment. What were the reasons that you felt the need for a repeat of the IVIG? Shooting leg pain, increased fatigue, increased numbness, etc?

      My husband has had 3 treatments since the end of January 2010, but absolutely refuses another one now. Says he is tired of being “stuck”. Although his energy level is dropping enough that I can see it and his pain levels has dramatically increased (shooting, stabbing, horrible pain in his legs – his descriptions). Neuro marked us for CIPD since that was what he said “chronic GBS” was. I give up on talking to these doctors. CHRONIC GBS – really??? They won’t even admit to residuals and my doctor thinks it is chronic?

      Anyway, really wanted to find out if the repeated IVIG would help with the pain? Neurontin was 600 mg for the first 5 1/2 months and now it is 2400 mg per day with no results. Does anyone take IVIG regularly and what symptoms does it help you with? Any advice would be appreciated. Thanks.

    • Anonymous
      July 27, 2010 at 5:48 pm

      Well, every case is different.

      One set of Neuros stopped my monthly IVIG as ‘ineffective.’ However, I and my wife (caregiver) provided clear, yet subjective (means no proof) evidence that I was better. Caution, I don’t have much pain anymore, never did have. Lots of muscle atrophy though.

      Mayo Clinic Rochester said “previous treatment may have not been aggressive enough” or words to that effect.

      So, how often is a matter for the treating physician, hopefully an expert, to decide.

      It’s true by definition. Why are you upset? Residual??? CIDP is the chronic version of GBS. Doesn’t mean you had GBS first. But, maybe some people do.

      If your husband has CIDP and he’s “tired” of being stuck, then he needs to wake up. Or, just get worse.

      Good luck to you. You know his condition better than he does. He’s a guy. Sorry guys. Guys know nothing! No offense to those few of who who do know something. The ladies know what I mean.

      seems to me the same Mayo clinic said results could take one year…..

    • Anonymous
      July 27, 2010 at 6:44 pm

      I think that the phrase “if he has CIPD” is where the problem lies…I am not getting a clear answer as to how we managed to smoothly transition from GBS to CIPD without any notice to us. Then the phrase transverse myelitis has come into play but the neuro still says probably GBS. He ordered an MRI to check for that, but husband said we had to wait, because quite frankly I can’t afford to pay the hospital co-pay for it. So where did the whole CIPD come in anyway? I am confused and frustrated. I did not realize how that came across last night. Neuro will do ivig if we want – husband is the stubborn one. We disagree as to benefits of such. I just wanted to confirm that the ivig helped others on here on a regular basis with things like – decreasing energy, increased nerve pain, etc. Then I could arm myself with proof and hammer him over the head with it.


    • Anonymous
      July 27, 2010 at 7:03 pm

      I’ve been ‘stuck’ EACH day I’ve had IVIG until early last winter, when I’d gotten a port put in…soo much easier? But, I kept getting stuck for 6+ years because the IVIG ultimately helped me to get, keep and still WALK!
      Now, granted, port installment is an ‘outpatient’ procedure? [I ran out of good ‘stick sites’, after 5 years] But it makes the ‘sticking’ heaps easier. Also, IF I could put up with all those ‘sticks’ when I’m the type that can pass out at the smell of the alcohol wipes? I dunno. Unless your husband has bruises at the ‘stick’ sites….if so? Call the infuser place and ask for a more experienced nurse-saying why.
      CIDP [B][I]used to be called CHRONIC GBS[/I][/B] It’s changed in the last decade as CIDP and GBS have separate and distinct sub-sets of each condition. From 5 to 20 different ones in each category. Depends on which sites you find to check this all out. Maybe your neuro is ‘outdated’? Second opinion, if you can afford it mite be the way to get things going in the best directions.
      Check out this web site to see what the diagnostic criteria are for CIDP then decide?
      URL-http://www.guidelines.gov/summary/summary.aspx?ss=14&doc_id=10457&string=-URL This list and standards were compiled by a group of international NEUROLOGISTS trying to get a handle on the same things we are! There are some good guys out there-I truly hope one is near to you!
      As for hammering your DH on the head? Better you get him to take the initiative and LEARN about this all for himself. The pity-party dance lasts only so long and no one wants to help you when you really need it later!
      Go talk with your neuro about HIS issues and how he’s coping/not coping and go from there. He needs an outlet or way to get his mind and body to accept this stuff and not give up! BTW? I don’t use hammers, I USE SOLID INFO to get the key critical points across. That and hugs! Do let us know how things are going, please!

    • July 27, 2010 at 7:54 pm

      I’m a guy (with a nurse for a wife) and I never had a problem “manning” up to get stuck. I went nearly 2 years on IVIg getting stuck in the arms and hands. I went for 5 straight days of IVIg every 5 weeks. After more than 85 treatments my veins were shot….85 treatments translates into probably over 150 attempts and vein changes (at least).
      7 months ago I went into surgery and had a Port installed, eliminating the need for multiple sticks and making the treatment cycle much, much easier.
      I still get 5 days of treatment every 5-7 weeks.
      The specialist I went to earlier this month told me that is about right as IVIg will hold of CIDP effects for 30-40 days maximum. After about 21-23 days I begin getting the needle pricks, buzzing, etc, then at the 30-36 day mark my muscles show significant weakness and pain.
      I again visited the specialist (6 days ago) and he prescribed Lyrica to help combat the pain issue…Wow does that stuff work for me. I will now be able to make the 6-7 week mark before heading back in for IVIg. I have some side effects from the Lyrica, but it sure seems to help the needle pricks, buzzing (like low current electricity). I would say the Lyrica helps reduce 90% of the pain.

      I try to make my visits to the Infusion Center fun for the staff. I take them small gifts, gift certificates, cake, etc… Nothing to costly, but things that make them sort of look forward to my visits instead of just another customer to be stuck. I figure it is the least I can do for them after all the great treatments and time they spend on me.

    • Anonymous
      July 27, 2010 at 10:01 pm

      First, the patient=YOU must be prepared…meaning hydration beyond your normal expectations… I mean HYDRATED! The more fluids IN you? The easier you are to ‘stick’ even if you aren’t a ‘good stick’. By Hydrate? I mean to the point of almost sloshing! A pint of Gatorade helps in the prep phase for me as well. Then, just be near a bathroom facility as you will need it!
      Second…is if the dose prescribed for you is working…Hard call. look at past posts of others and their reactions to doses. Lots of docs tend to ‘under’ prescribe doses as a tentative ‘feeler’ to see if there’s any reaction. Getting and committing to IVIG can be both a ‘sticky’ and expensive issue for YOU and your insurance company. Ergo… you should get enuf IG to WORK or not have any reaction at all. Half doses don’t cut it in this corner.. Go to the ‘search’ feature on the top blue band and search up ‘Loading Dose’… One should get a proper multi-day loading dose to start off? Then go on a 3-2-1 day dose infusion on some regular basis…every 4,3 or 2 weeks as blood tests, doses and results dictate.
      I currently have home infusions, It’s good because the pre-dosing of anti-histamines and such do make one a tad zonky. Also I do plan and spoil my home infusion nurse with good pastries that are fresh and yummy, plus freshly brewed coffee. I don’t think it ever hurts to spoil your nurses! Bribery and respect can get you thru a lot! BTW? I get my infusions every 28 days or else!
      Good luck and heart to all…. Keep on slogging! – homeagain

    • Anonymous
      July 28, 2010 at 9:57 pm

      This is great information. I really appreciate it. I know he is not afraid of being “stuck”, but rather doesn’t really feel like the ivig helped him or made him worse. I remember though and I know it did help him. Part of his issue is that he also has sickle cell anemia. In and out of the hospital for the better part of his life already, only to catch pneumonia, an acute chest sickle cell crisis and GBS all in one day – was a bit of a shock for him. He had ivig in the hospital and 2x at home (the last time, on the last day – he had another crisis that landed him back in the hospital for a week). Maybe he is just scared that the ivig aggrevates the sickle cell (I don’t really believe that myself though). All of the reasons that you guys have the multiple treatments – those are the same reasons that I think DH should have them too. I am going to look up that website and the different variations – I guess we are just going to have to accept that this is CIPD (chronic – as in forever?) and not GBS (which is getting better slowly, but eventually mostly better?). Seven months into this – I think the progression then regression then sideways progression (if you know what I mean) is what is taking the worst toll. I really appreciate the advice!

    • Anonymous
      July 31, 2010 at 2:46 am

      I have had seven intravenous gammaglobulin treatments over the last 18
      months, and have experienced no improvement in my condition. However,
      the progress of the damage has stopped. My progress has been very slow,
      and have had no significant pain, until 3 months ago. Now, I am having dif-
      ferent kinds of pain, different intensities, and differences in the length of
      time the pain lasts. It is very puzzling, as I can’t figure out, what might be
      causing the pain. I am also experiencing swelling in my feet, since I started
      taking tramadol for pain. Has anyone else experienced swelling, and pain,
      that is sometimes intense, and stabbing, sometimes burning, and sometimes
      deep aching in various parts of the leg? The CIDP is mostly affecting one leg,
      but there is no consistency to the time of day, the duration of the pain, or
      the kind of pain. It doesn’t seem to make a difference, if I walk a lot, or rest
      the leg. I’m concerned about the long term effects of tramadol, that for me
      causes dry mouth, loss of appetite, and possibly swelling. It is not recom-
      mended for long term use, but I haven’t found any info on what the long
      term effects might be.