Update after first round of IVIG

    • Anonymous
      March 29, 2011 at 8:54 am

      Hello All,

      Just wanted to post an update after receiving IVIG last week. Did two half days on Wed and Thursday. By Saturday I noticed significant improvement. I was pleasantly surprised as my neuro said it could take several rounds before seeing any improvement. My upper body strength and upper leg strength is much better. Was able to walk more easily up stairs, do my hair and most importantly life my son. Still feel numbness/tingling in hands/feet but hopefully that will continue to improve with additional treatment. Each day though I am scared it will wear off but must remain positive.

      Some ladies getting the treatment did say the Dr’s office just switched from another brand (not sure which one) to privigen and they said that privigen has caused less side affects from thier experience and others in the office they have talked with. Just thought I would share this in case any of you have side effects that are bothersome, might be worth trying this one. I had no side effects the days of treatment/ light headache the next day that went away with tylenol. Hopefully the full dose on a full day will not impact that.

      Hope you all are doing well and thanks again for all of your support through this forum!

    • Anonymous
      March 29, 2011 at 11:35 am

      I’m glad to know your first treatment went so well. I was going to e-mail to see how you were doing. Mine went pretty good, I did have some minimal improvement walking briefly which is not a lot but encouraging nontheless. I did get the flu-like symptoms for a couple of days but I expected them. I use a walker most of the time now when I go into stores with my wife, other wise I use a cane. I was resistant to the walker at first but using the cane takes a lot more out of me when I’m on my feet for more than a few minutes. I go back for two days on Monday and Tuesday April 18th and 19. Have a great day!

    • Anonymous
      March 29, 2011 at 12:16 pm

      Thanks for sharing Johnny. So glad you saw some improvements too. Hopefully you will see even more with additional treatments. My neuro said that she sees the most improvement after 90 days from getting the first treatments so let’s hope and pray we continue to see progress in the right direction. Keep me posted!

    • March 29, 2011 at 1:24 pm

      great news on the response to the ivig. my son went from not walking or being able to hold anything at all to running down the halls and doing push ups after the first round. just an non medical mom observation, take it for what it is worth, it seems like the people on the site, you, my son, others that respond instantly seem to progress well, as well, it seems they mostly fall into the category of relapsing remitting cidp as opposed to the progressive kind. about the privigen, i did not know it comes in iv form, i thought it was sub q. we use gammaguard, they have a program called guardian that you can sign up for that helps you get ivig if you should ever loose insurance, it also puts you on a list that guarantees you would get ivig first should there ever be a shortage, because they stockpile for those enrolled in the program first. Just another mom opinion, it seems like the people who stick with one brand seem to do better because the results are constant. it is just a matter of figuring out which brand works for you. btw, you probably already know this, but in case, you could do at home health care too. regarding your children it might be easier. for instance, you can have a fanny pack of sorts that allows you to move about your house while the nurse is there with you and allow you to go on with your everyday life and get treatment. some ins companies work with particular agencies, for example bcbs has an exclusive contract with coram, volume discounts and they like if you go with coram because they pay less for the ivig/nursing say compared to other source. maybe each ins does this with other agencies. i only can speak for us.

    • Anonymous
      March 29, 2011 at 2:48 pm

      Thanks for the info. I did not know you could do it at home, I will look into as it sounds more convienent, especially if I am doing once a month for a long time.

    • Anonymous
      March 31, 2011 at 10:06 pm

      but check with your insurance tho? My own insurance limits home ‘nursing therapies’ to 2 hours a day. And, my infusions take 2-1/2 hours-and? I get to pay for that WHOLE third hour at a non-insurance discounted price!
      In my plan [a very good one] the issue is their assessment of your ability to get to any infusion facility.
      When I’d opted for home infusions? I’d really felt the side effects of both the infusions and pre meds! Driving by myself alone post treatments? Was and is an adventure at times.
      In a neuro or other infusion suite? The hourly limit is about 6 hours [+/-] so most folks can handle that …tho it’s boring.
      Hospitals or the infusion suites are the best place to start or continue infusions. Cost wise the suites are much cheaper overall. Home therapies for me have come in second and the hosptials were the most expensive and least efficient overall. Simply one person’s opinion tho.
      I’m truly glad that you felt better after your first set of treatments! After my second round? I went shopping like a demon! I’d not really been able to go and get new clothes or other essentials on my own for the year prior! Then I went and got garden plants and hanging baskets and let SPRING get to my door! It was wonderful! I truly hope that wonderful-ness continues for you a good while between infusions! Keep it up! Ask questions if you have any, please. More than one of us has been around this issue many times!
      Thinking things will go well for the future!

    • Anonymous
      April 21, 2011 at 11:05 am

      I apolgize beforehand for busting in on a thread like this. I have searched everywhere and even tried to contact my BC/BS provider (as I have had insurance with them for 30 years…and could not get one iiota of simply ‘what if’ detail from them) for help. The ‘story’ is as follows: I have a dear friend from Eastern Europe who moved to America a couple of years ago. Due to difficult work circumstances he has been unable to afford insurance (he now understands the necessity of such despite his limited income). As fate would have it he had to check into the local emergency room (and was ultimately admitted to the local hospital) on Christmas Day 2010 and was eventually diagnosed with ITP (Idiomatic thrombocytopenic purpura – which is basically an unknown condition wherein one’s immune system attacks/destroys one’s platelets). Normal platelet levels (I believe) run about 120,000 to 150,000. His were 1000 upon entrance into the hospital (he was bleeding from eyes, through skin, in mouth, in urine, etc)…and subsequently he was administered a 140units (infusion/bag) of Privigen (10/gm per 100ml)…which when the dust settled cost $44,000.00. He also had a number of xrays/test and spent 4 days in the hospital at a charge of $1185/day.

      I was able to help him with information about usual and customary (like BC/BS – Blue Cross/Blue Shield) insurance allowances for the hospital room. For instance, when my wife was in the hospital some time ago…they charged about $1100/day for her hospital stay per day…but BC/BS only allowed about $300/day and the bill was considered paid in full. I am hoping that someone might be willing to share with me some kind of similar feedback with regard to how thier insurance (hopefully something like BC/BS) handled the charges from the hospital for Privigen infusion. I don’t think anyone is privy to how these behind the scenes ‘allowances’ are derived. But for instance, when I had achilles tendon surgery last year…the doctor charged over $10,000.00 for the actual surgery and again BC/BS only allowed him payment of about $2600.00. Again the bill was considered “Paid in Full”. I’ve got to believe that there are similar situations or ‘allowances’ with regard to the payment for Privigen through powerhouse insurance providers like BC/BS.

      I am requesting this information so that my friend can have at least some sense of usual and customary insurance related/established allowances with which to barter with the hospital. If anyone has information wherein they were administered a similar transfusion of Privigen…and were charged a similar amount (HCPCS billing code for Privigen is J1459 ($275 per unit…140 units = $38500.00)…and then their insurance provider paid fractions of this cost (say 20-35%) and the bill was considerd “Paid in Full” and would share this detail with me…it would be GREATLY appreciated.

      My friend’s life was saved with this Privigen protocol and he wants to honor payment. However, he is simply a waitor in a restaurant…and even sends portions of what little money he makes home to his parents in Romania…and will never be able the pay his hospital bill of $62,000.00+. He would like (to offer/negotiate) to pay whatever is usual and customary (like possibly BC/BS would do) if at all possible. Again, any detail and/or helpful information that anyone can share will be very GREATLY appreciated.


      Bobby Griffith

      PS – Feel free to call me at (334) 324-9687 if it might be easier than posting. A basic idea of what is acceptable payment from a large insurance provider is all that I need to move forward/negotiate with a sense of purposeful accountability.