Is there such thing as too much IVIG?
AnonymousJanuary 7, 2008 at 8:14 pm
Hi all. I have been getting monthly IVIG treatments for the last year. I started at 20g and now get 70g once a month. The doctor and I feel that this is not working well enough and changed the frequency to every 3 weeks. I have not heard of anyone getting that amount that often. Is there such thing as too much IVIG?
I can’t take steriods. We have entertained the idea of using other medication to treat, but the options sound really scarey. I would appreciate any thoughts anyone has on this.
Sometimes I think I should just stop all treatments and let whatever happens happen. I am tired of fighting this, being a burden to my family, feeling like ****. I guess I am just very depressed over the whole situation. (boy it felt good to admit that)
I am interested in what treatments others are using.
AnonymousJanuary 7, 2008 at 8:31 pm
I can’t comment on too much IVIG cause it did not work for me (I had about 16 treatments durinng 2 diff hosp stays). Right now I am doing Plasma Exchange and so far it is helping. I also take Prenisone and Imuran. I can understand about wanting to give up because there were so many times that I wanted to also but my family, friends and church members would not let me. The unknown is always so scary. I have descided that I was not going to let CIDP defeat me! I would do my best to fight as hard as I can.
Good Luck to you and do not give up!
AnonymousJanuary 7, 2008 at 10:51 pm
My daughter felt exactly the same way the first year. If it helps at all, I think it is normal to be depressed about the sudden life-changing events you have gone through. It does get better, once you get past this hump and find something that controls/minimizes the relapses. You will find joy in the small accomplishments along the way, and I know your family will be rejoicing along with you!
Doctors & hospitals pushed anti-depressants at every opportunity for my daughter, but I declined. Before being diagnosed w/cidp, she was given anti-depressants for “anxiety disorder” that had horrible results, but many here on the forum have had good results with them. Mabe someone with experience can share their story. Whatever you do, don’t give up; don’t give in!
I have an article on the art of administering ivig somewhere, I just can’t put my fingers on it right now. It described various ways of finding the appropriate TIMING of doses to control relapses. What I found interesting was that the same total amount could be administered more frequently; for example every 2 weeks instead of a larger amount once every month, with better outcomes (and vice-versa – for others one large dose at greater intervals). If you are having positive responses to ivig, but just not lasting for the whole month, talk to your doc about trying different schedules. Treatment amount is based on your weight – 2g/Kg as a loading dose usually given over 5 days. In our case, a maintence schedule was a daily dosage given every 2 weeks. Here’s the math as an example using 150 lb person:
150 divided by 2.2 = 68.2(Kg) X 2g ivig = 136.4 grams total, divided by 5(days)=27.3g daily dose
Hope this helps,
AnonymousJanuary 8, 2008 at 5:21 pm
I have done massive amounts of research on the frequency that IVIG should be given. What I found was that no one knows how often is too much. Emily was 5 years old, 45lbs & getting 200 grams of IVIG a month in order to get her eye under control! Now she gets 20g every 2 weeks.
I’ve learned that every person is different in how much IVIG they need & the frequency of it. In the beginning it’s a lot of ups & downs trying to find out the correct dosage & schedule. Once you find it, it gets a lot better.
I don’t really have any advice on how to deal with the depression. It’s different for me because I was dealing with a 4 year old child who suddenly has her world turned upside down. I know that I had a bout of depression too, in the beginning of all of this. I’m not really sure on how to describe how I dealt with it…I just decided that CIDP was the enemy & wasn’t going to run my or Emily’s life. After that, life became easier for me.
The thing is, CIDP really tests your ability to cope with things. You have to rise up & fight against it. You have to believe that you are stronger than it & that you won’t let anything get you down.
Also remember that your family loves you and as much as you feel like a burden, it is their job as a family members for you to be there to lean on. I’m sure none of them are angry with you for needing them right now & I’m sure one day they will need to lean on you too. That’s what family is for.
Hope that helps,
AnonymousJanuary 9, 2008 at 10:25 am
My daughter is 19 years old and starting noticing problems when she was 17. It took a very frustrating year to finally get a diagnosis. She went to the Mayo Clinic in August of 2006 and they started her on IVIG twice a week for 6 weeks and then it has been once a week since then. She gets her treatments weekly and she receives 22 grams. Her stamina has been much better ever since she started the IVIG – the only problem has been that her strength has not gotten better, but she has not gotten any worse. Six months ago the doctor started her on Cellcept – she takes four pills per day on top of the weekly IVIG treatments. She saw her doctor a few weeks ago and her strength has not changed yet, but he did not expect any changes from the Cellcept until 6 to 12 months of being on it. She has been so frustrated. She has noticed though that her hands and feet have gotten some padding back, which we feel is a good thing. She had axon damage and I know that it takes a very long time to heal. She is an awesome young lady who is attending college in their pharmacy program. She wears AFO’s for her foot drop.
AnonymousJanuary 10, 2008 at 10:56 am
Maybe it depends on a few issues…1- your doctor’s philosophies about using IVIG, some docs are very, very conservative in starting the use of it, and for how long. 2- your tolerances for any or all different brands of IG and lastly- 3-what your immune blood work indicated and to what degree you ultimately respond to the treatments.
It is my understanding [tho this might be dated now as this info is 3 years old-from an IV nurse] is that doctors and hospitals are each ‘allocated’ a quota of IG to prescribe as they deem fit. I do know that I’d gone from a MD office infusion situation [doctor quota] to a hospital infusion quota…then to home infusion [doctor quota, again] The hospital tried to declare that my IG dosages were the hospital’s property. Yes, you are reading this correctly.
Needless to say I got my quota thru home infusion services.
Doctors also have a wide variety of ‘philosophies’ or biases pro, con, and neutral about infusions and the amounts of doses, for how long and how much. I have to say that overall, my dose is far greater than yours, for each four weeks and I know I need what I get. At times I guess how any single person’s dose is increased or decreased depends on their individual responses-and the doctor’s biases/philosophies.
As for depression being ‘tied’ to infusions always? I view it this way: I have more quality pain-reduced days with infusions. I do watch and be Absolutely sure that I am getting the correct brand and doses tho. I found out that that ‘hospital’ used 6 different brands of IG in 8 different infusion days. I now know why I wasn’t ‘feeling’ any improvement at all! Substitutes of brands are not legal..according to the FDA. Substitutes used and not notifiying the prescribing doctor and the patient are subject to heavy fines.
Yes, depression about it all comes with the territory- not to get depressed is a worse sign of possible coping problems. Turn your viewpoint about it all around and see all the good and better things becasue of it!
AnonymousJanuary 10, 2008 at 11:52 am
You’re saying that there is a quota on how much IVIG a dr can prescribe their patient? I have never heard of that before. I’m going to ask Emily’s dr about that. I know that some dr’s are afraid of the side effects (blood clots,stroke, etc) and therefore will try other meds in place of IVIG or in conjunction with it.
I do know that IVIG is regulated by the federal government. Each state is allocated a certain amount & then that’s divided up among the hospitals, infusion centers & home care companies within that state. I know that hospitals can borrow IVIG from each other if there is a shortage. It’s not an easy task to do, but it has been done & was done for Emily.
I am aware that some dr’s are pressured into not prescribing IVIG because of it’s costs & supply shortages.
AnonymousJanuary 10, 2008 at 12:33 pm
but the hospital tried to imply that I would not be able to get my doses thru a home service agency. That it was the hospital’s allocation. Claims of the dose possession stopped when I reminded the hospital that I ‘brought’ my ‘allocation’ with me from my doctor’s office tho.
I do know that it it’s possible that it’s merely an issue of supplies and availability tho. And that distributors and suppliers often trade off stock on hand for future stock. I would bet that no doctor would admit to it tho, and I’ve not found any resources to this allocation aspect in print anywhere.
There is more, much more to the business of being a doctor than we know, and maybe shouldn’t know.
AnonymousJanuary 10, 2008 at 7:54 pm
I ve had 51 treatments over the past year and half at the rate of 40 grams per day, three day in succesion ,every four weeks. I am ready for the next session when the time nears, My doctor seems pleased with my progress and i don t take any other medications so i feel fortanate. When i get down and some depression i try to remember how far science has come and where i would be without it. This site has helped me a lot to relate to people who face much of the same problems and what the ve done to handle them
AnonymousJanuary 11, 2008 at 5:19 am
Hospitals are usually first in line for IVIG shipments as they supposively treat the sickest. Twice in the last 2 years a shortage occurred and my doctor couldn’t get IVIG t all. I tried to get lined up at a hospital but was told they were not taking new IVIG clients. I went down hill quickly.
Medicare threw in a wedge with not covering nearly the cost so doctors were losing money at their clinics with it.
Thank goodness I had private insurance that now pays for my home infusions and I’ve not had any problems receiving it.I deal with a major distributor and my monthly shipments are guaranteed.It’s paid in full through my Blue Cross pharmacy benefits with no life time limits.
I have kept a journal from day one on brand (removed the sticker off drip bag), dose, side effects, pump rates and how long each infusion lasted. It’s great to review to see how far I’ve came.
I had such severe nerve damage pain I was considering a morphine pump surgically implanted.Now the pain is tolerable.
My neuro has had me on 50 grams for 3 days biweekly for 2 and half years. I asked for additional meds to help control attacks- Methotrexate pills 3 days a week.
Unfortunately I too feel attached to the pump and every time I turn around it’s time once again for IVIG. I get down and accept this as part of CIDP/meds. Getting out of the house, short walk, visit to the library, talking to a friend and loving on my big kitty helps so much.
AnonymousJanuary 12, 2008 at 4:15 am
I think it’s possible to have too much IVIg for YOU. When I was getting 45g every 6 weeks I was having a lot of kidney pain, very little urine output and bloating for up to 3 weeks after the infusions. We have now changed it to 30g every 4 weeks and so far I’ve had no kidney pain. I’m still having trouble with urine output and water retention but it’s not as bad as it was.
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