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IVIG dose and 12 days in the hospital - again.

carolethorn Message
2 Aug 2010, 08:30 PM

had my first IVIG treatment a month ago- there was this big question about the dose - 2mg/kg over 2 days or 2mg/kg X2 days. To me - the order meant to spread the total dose over a 2 day period. That wasnt what I got. I got the dose x2 days. Oh well. I got home and felt like death - okay - thats an exaggeration - I felt like a bad case of the flu. Took some ASA about a week into this "flu" and my legs and whole body were still so bloated - I started running fever and getting SOB. Went to ER as my doctor who had been following me (very closely) had up and quit and nobody knows where he is - I don't blame him - the ER doc literally told me I was swelling because I drank too much water. I mentioned something about still having working kidneys and it wasnt quite that simple and he told me I could believe "those people up there" (referring to my recent trip to Mayo and current diagnosis of atypical SCLS) or believe him - and do what I'm not clear. I ended up being admitted, told I needed a bone marrow biopsy and ran a fever of 104 before antibiotics were started. They said my blood counts were all messed up - pancytopenia. I weakly suggested that there may be a dilution issue at play here with those CBC results considering my history of fluid balance problems. Anyway - luckily a young doctor found my case interesting enough to look into the med. records I brought with me from Mayo. (meantime my 02 sats were 88 on 9 liters with a mask) The original doctor - hospitalist - who admitted me - wrote discharge orders on me a week before I actually went home and asked me -"what do you want me to tell the Utilization Review doctor why you are taking up this bed?" I told him to send the f--ing UR "doctor" to my room and I would put it in very clear terminology for him. Anyway - I'm home now and weak and on 2 liters of 02 and at least 20 pounds lighter and it's 115 degrees with the "heat index" outside. I had to cancel my next IVIG tx. Too weak - too hot and attached to 02. I'm 47 years old and NOT stupid - yet I feel like I'm in the twilight zone. I don't know why I wrote this. Any insights...anyone? I hate to be a downer. Trying to keep some sense of humor... Carole Thorn
jisenhour Message
5 Aug 2010, 01:43 PM

Wow, its pretty obvious those Doctors don't get it. I can only say that if at all possible look to see if you can find an internist or some other Doctor who will read the literature, talk to the experts, and come up with a reasonable treatment plans. Dr. Grippe or Dr. Druey I'm sure will help on the dosage and how it needs to spread out.
josee Message
6 Aug 2010, 01:06 AM

bonjour, voici le message que j'avais écrit il y a un an.. tout va toujours très bien pour moi, donc, je ne change pas de recette. This is my attempt at translating what Josée wrote: “I’m so sorry I can’t communicate in English! I am happy to hear that your insurance company will pay your [husband’s] treatment. For my part, I have been getting a monthly dosis during the past year and all has been well since. Before my treatment [with IVIG], I would have to be hospitalized every week. My dose of IVIG is indeed 2gr/kg but spread over 2 days, such that I receive 1gr/kg the first day over a 5-hour period: at first 30 ml/hr for 30 minutes; 60 ml/hr for 15 minutes; 100 ml/hr for 15 minutes; and then the remainder at the rate of 200 ml/hr. And the next day, I receive the same quantity at the same pace. I weigh 67 kg, and therefore I receive a little more than 3 bottles of 200 ml each. Also, the day before I get IVIG, I must take 150mg of Predinsone: 50mg at 6PM, 50mg at midnight, and 50mg at 6AM. This past month, I forgot to take the Prednisone and, sure enough, I had an alergic reaction [to the IVIG], so it’s important for me to take the Prednisone. I am pleased that others are getting to try this treatment plan that has been so beneficial in my case. Good luck to you, and if you have more technical questions, I am certain that my doctor will be pleased to answer them. Good luck!" Josée: Donnez-nous s’il vous plaît le nom, l’adresse, téléphonez et les renseignements de contact de courrier électronique de votre docteur et hôpital?
carolethorn Message
6 Aug 2010, 01:19 AM

Thank you for clarifying the dose and the info about the prednisone!!! Ahhhh! There is hope! I was scheduled to get 2nd dose yesterday and today but I'm still a little too weak from being "bedridden" in the hosp. for 12 days. OK - I'm thinking all is good again! Thank you both for your replies. Carole Thorn
jelliott Message
6 Aug 2010, 03:09 AM

Carole First of all I am sorry you were treated that way sometimes we have to report this doctors and make a big thing so thy can listen. Clarkson is a very hard disease and not many doctors know about it you should tell them to read on it. My daughter has clarkson and the doctor who diagnosed her was not from mayo but he knew he had a strange case and took the time to read and he talked to other doctors and they came to the conclusion she had clarkson's and stared treating her symptoms today she is doing very well. I hope everything turns out good for you and always stannd for what you believe. jessica
aporzeca Message
7 Aug 2010, 02:34 PM

I agree with the above observations and recommendations. I was told by my doctors to take 60mg of Prednisone before each IVIG infusion, but after the first 4 infusions I cut down on the Prednisone to 40mg and then 20mg, and during the past 2 infusions I have taken no Prednisone at all -- and have had no reactions to the IVIG except for some temporary headaches, which I've always had, and which can be controlled with Tylenol.