I have asked some questions about what you all have in common and is seems asthma is not a common denominator. Another question: Has anyone here NOT benefited from IVIG treatment? Sarah New Zealand

hi sarah i us ivig since may 2010 every thing is ok right now p.s i us it alsso in acout case it work vwrey good have a nice day

Hi Elgan Thanks for the reply! Good to hear this.

Arturo and Dr. Greipp can answer that. There was one person near the Mayo that tried IVIG for two months and they took him off. Dr. Greipp can answer if they tried it again. It took me 3 IVIG treatments to notice a big difference. I think there are 6 of us on "steady" IVIG treatments. Walt

Thanks for the reply. Just out of curiosity, did your insurance company cover it? I have tried almost everything. I saw my doctor 2 weeks ago and he has put me on Lisinopril which he says takes 3 weeks to kick in so I am waiting it out. So far no improvement but early days yet...

Everyone, I was the one who tried IVIG for three months. My attacks did not stop but seemed slightly less severe. Dr. Greipp and myself thought that we should stop the drug due to the expense and the lack of not stopping my attacks. Since then my attacks have increased in frequency to every week. Also, I just found out that my insurance company refuses to cover my 2 out of the 3 treatments, which is over $80,000. Dr. Greipp has sent information and talked to a reviewer (another hematologist) but since there is limited research they still refused to cover it. I contacted Arturo who is helping out but I feel that I will need letters from everyone who is using IVIG with success. I am hoping and praying that everyone can help me out. I would like to try IVIG again for a longer period of time since there is new data out there supporting using it up to a year. If anyone is willing to write a letter in support of IVIG please let me know. I will send you my address. I would like to get all of my information into the insurance company by Jan. I also plan to find a lawyer to discuss this with. I appreciate all the help that I can get. Sincerely, Heptagona (Steve)

Steve, on what gorunds did the insurance company refuse to pay? Here in New Zealand, we have to get prior approval. Would your insurance company not do that.? Also when you say you have attacks every week, are you hospitalised with these attacks? If not' how do you deal with them? It would really be helpful if you could add a bit more information. I hope you are able to resolve your issues Sarah

Steve, If you need us to write a letter about Nolan's IVIG use we would be happy to do it. It is the only thing that has worked for Nolan. He has been on all the other medications suggested. None of them controlled his episodes. He has been on IVIG for 15 monthes. He has not had a single episode. ( He was having them every five to six days for 2 years before that.) It has made a huge difference in our life. His first dose was given during an episode and my insurance apporved it. We have to get an approval every six monthes now but they have always approved it so far. Good Luck, Wendy

Sarah, Mayo's business office thought that my insurance would cover the IVIG.Three months later the insurance finally staked their claim that IVIG was too experimental and that there were not enough valid research out there to warrant it's use, eventhough they did cover one month of IVIG and my Revlimid for 6 months. When I have attacks I go to my Urgent Care and receive 4-6 liters of IV fluids. I am fortunate that they are willing to do this. I still run into some MD's that refuse to treat me. Urgent Care has a list of those MD's who will treat me so they direct me to that Urgent Care. The only time that I have been hospitalized in the last two years is for my two bouts of pulmonary embolisms. Sincerely, Steve

Everyone, For those of you who are willing to write letters in support of using IVIG my name and address are as follows: Steven Gagner 949 Laurel Ave St. Paul , MN 55104 Again many thanks to everyone who is willing to help me out in this difficult matter. I truly appreciate all the help! Heptagona (Steve)

I've asked two of my doctors to write generic ("To Whom It May Concern") letters of support for treating SCLS with IVIG when all other medications fail to prevent episodes, telling of their successful experience with my case, and requesting that insurance companies cover at least 6 months' worth of infusions. That way, I'll have those letters ready to be sent to anyone who needs them -- starting with Steve. If anyone else is willing to ask their main MD to write a similar letter of support -- because the insurance companies will not listen to patients, but they will to doctors -- let me know _(aporzeca@american.edu)_ and I'll send you a draft they can change or use. I remember Dr. Zahir Amoura, the French pioneer in IVIG therapy for SCLS, telling me that not all of his patients stopped leaking right away, and that sometimes it took many months -- up to a year -- of infusions to stop all the leaks.

An interesting thread. Steve, When you have episodes of leak, what actually happens to you if you don't mind my asking and how do you deal with it on a week by week basis? I am asking as I have the chronic form where I swell up on a daily basis but only have bad attacks occasionally and I am trying to glean some first hand knowledge from those of you who maybe have tried more treatments than me. I hope you have success with the letters others may write to help you with your insurance rebates and coverage. Sarah

Sarah, My attacks start on Saturday. I get a tingling sensation in my head followed by dry mouth and extreme fatigue. I usually go to bed and wake up with my SBP in 70's to 100's. I then go into Urgent Care for my IV fluids come home and go back to bed. By the next day I have a runny nose which lasts for 2 days. I go back to work Monday and my week starts over again. Sincerely, Steve

How bizarre, Steve so weird. Do you have any ideas why it may be Saturday? End of week let down or fatigue?

hi i git my first visit after i talk with dr,Grippe i wint to paris to dr, amoura hi write that i have to start ivig it was at april 2010 and i had a lot of problemes her in italy becouse SCLS is not under any itemes of rare disease but i start to us it when i had my thered attac now every thing is ok i had alsso my 3° operation at 14/07/2010 in my right arm and now i can us it like 50% alsso after the operation i am stell ok thankes for god. i hope alsso from my hart that god plaes all of you yaser

Steve, I m curious to know if you work full -time and if so, do you think there is a correlation between your work schedule/number hours worked and your weekly episodes that occur on Saturdays? Do these episodes occur while you are on Holiday? Have you experimented with reducing the number of hours worked? If so, do you notice a reduction in your episodes? I am trying this.

Windows, I have no idea why my attacks occur when I am not working on the weekends. Maybe it has something to do with stress or some chemical disruption in my body. Steve

Steve/Windows I also had severe attacks near the weekend, but on Mondays. I felt OK in high stress. When I relaxed, AK the weekend, the leaks would come. By Monday, they started coming. The IVIG can work if you can get them to try it. Arturo's information helped. Yaser It is great to hear from you. I did not realize you had an operation on your arm. Was it due to a faciotomy? Walt

I start IVIG on 11/18. I will make sure I check with my insurance company on the coverage. Thanks for the information on coverage. Ritz

Great, Ritz! Your doctor must file a very well documented request for pre-authorization with your insurance company for an IVIG course of treatment. Let me know if he needs any help in doing this. The treatments are billed at around $40,000/month, and insurance companies pay hospitals about half that -- and they settle for that if they are in-network -- but pre-authorization is an absolute must, unless you want to gamble away all your savings!

Goodness. I thought it was $40.000 a year! And is it a gamble too?

I actually get the IVIG materials through the Aetna specialty pharmacy. 1 liter of it is Billed at $10,000-$11,000. I've not seen the bills for using the chair at the at the infusion center or one day but I imagine its pretty expensive too.

Right, and it's one liter per day, so it's at least double that plus the services that an infusion center provides -- not just the chair, but inserting and monitoring the IV, any meds like Benadryl and Tylenol, lunch, etc.

Everyone, I talked to a pharmacist at work who told me that the hospital's cost for IVIG was $79 per gram. This is for a medium size hospital in the midwest. Since IVIG is dosed on Grams per Kilograms the cost for me was $18,000. This cost does not include the hospital's mark-up or services they provide. I had costs ranging from $23,000 at Mayo to over $46,000 at my local hospital. Some hospital's really mark up these drugs. Steve (heptagona)

RIght I guess I am just scheduled for one treatment. Is this normal? I told my doctor that most of the people in our group seem to receive IVIG monthly. She is checking with Dr.Greipp to decide on treatment. Ritz

You may be scheduled for one treatment, and the insurance company may want to authorize just one, but those of us who receive IVIG do so on a monthly basis for the rest of our lives -- or for as long as our insurance company pays for it. Some patients stop leaking after the first treatment, others after several months' treatment, so it's important to continue the treatments for 6-12 months, at least, even if they don't stop all the leaks right away.

Ritz Great to hear that you are going to try IVIG. My insurance approved one treatment of 2 days the first treatment. Then the insurance approved 6 treatments which I did not realize was for 3 months. They counted each day of treatment as one. Now the approvals count 2 days each month as one treatment. I am actually good for a while now. Just be sure of what your approvals are for. Do be afraid to ask. Like Arturo said, it may take more than a few to get the affects. Walt

Hi all I think I had a reatcion to the IVIG. I ended up go to the hopsital about 15 hours after the treatment. I still not feeling the best. I had a really bad headache, back ache, bones and muscle hurt and running a temp of 101. I suppose it could have been the flu but my stomach was upset and I really hurt so I went in. They gave me somethimg to clam my stomach and morphine for the pain. I when home when they I could tolerate the way I was feeling. Has anyone else had trouble with IVIG?

Headaches are normal reactions, especially the first few times. That's why they should have given you 2 Tylenols and also 2 Benadryls -- to minimize any allergic reactions, as well. I was told to take Tylenol every 4 hours for the first 24-48 hours after the infusions, and that took care of it. Now I don't need to do that anymore. My body is used to the IVIG, I guess. They can also slow down the infusion rate, to give your body more of a chance to take it all in. If they took 4-5 hours to drip the IVIG into you, that's the normal pace. If they did it in less time, tell them to slow it down the next time.

Ritz, did you have your IVIG at a hospital in WI, or at Mayo ? If in Wisconsin, will you share what hospital ? I go to St Mary's in Green Bay & I'm trying to set up a plan where if I start leaking, they know what to do. It may help if my Dr has another resource to consult with. Praying for you - please keep us posted on your IVIG treatment. GO PACKERS !!

Dyfe, I have my treatments at the Medical office attached to St Luke's in Milwaukee. I live close so I just go to the infusion center that is use chemo. I am there for 6-7 hours for two days a month. My treatment are around $8000 and covered by insurance. Dr. Qamar is managing my care, she consults Dr. Griepp when she needs advice. My second IVIG treatment when better. They use interveinous Benydral and a steriod, it helped control my reaction. I get really jiggery and itch with the treatment, I had a headache that required morphin the first time. Not Not much of a headache the second time. So far it seems worth it as I have much more engery.

Ritz This is what I found in my case of IVIG treatments. I set my own rates of the IVIG from my experience of 8 treatments. I tried different rates. My starting flow rates of the IVIG are 30, 60, 120 cc /hr. This is done in the first 1 1/2 hours. Anything faster in the beginning, I get headaches. With this rate, i just take a couple of Advil just in case. After the 1 1/2 rates, I go to 240 cc/hr. Anything over this rate, I get a cold arm where the IV is and my heart rate/ blood pressure gets rather high. I'll stay at the above rates for a while. about 4.5 hours is OK with me each day. I get them at home. No sense rushing it. Walt

Ritz - Thank you for the info - I will forward this info to my Dr in Green Bay. I have been on the theophyline since Oct - I thought I was handling it okay, but my kids keep asking "Mom, R U really mad, or is it the medication ? I'll wait until after the holidays & decide if I will continue. Have a very, Merry Christmas everyone ! Glad to be spending another holiday with my family !

Ma dose de IVIG est aussi de 2gr/KG mais sur 2 jours donc, je reçois 1gr/KG la première journée (en 5 heures) soit : 30 ml/ hre pour 30 min. 60 ml/ hre pour 15 min 100 ml/ hre pour 15 min 200ml/ hre pour le reste des bouteilles. et le lendemain, je reçois la même dose. je pèse 67 kg donc je reçois un peu pus de 3 bouteille de 200 ml. aussi, la veille de mon traitement, je dois prendre 150 mg. de predinsone. soit 50 mg. à 6h00 le soir 50 mg à minuit et 50 mg à 6 heure le matin. bonne chance à vous !!!!!!

Josee Do you see any reactions to your IVIG? Any rash? Voyez-vous des réactions à votre IgIV? Toute éruption cutanée? Walt

I am still adjusting to the IVIG. I appreciate the dosage help. I ended up in the hospital for a day again, this time a week after treatment. The doctor said I either had a TIA or an atypical migraine, I will take tyneol longer next time. I am doing better now Rita

dfye, If you would like to talk I can email you my phone number. I could also introduce you to the doctor that manages my care in Milwaukee, maybe your doctor would like to compare notes. Happy Holidays Rita

bonjour, vers la fin de mon traitement, j'ai quelque fois des piquottemments, donc je prends 50 mg de Benadryl et tout va bien. Au début, il y a deux ans et demi, ils avaient essayé de me donner la dose en une journée, à ce moment, j'ai eu de grosses réactions. bonne chance et joyeuses fêtes à vous. Josée

Ritz, my email is tdfye92@yahoo.com. Yes, I'd like to forward your Dr info to my Dr. Thanks ! Happy New Year everyone !

Everyone, As I prepare my final appeal to cover my IVIG treatments and hopefully restart the IVIG treatments I am still in need of letters from those who are currently receiving IVIG. It is important to show the insurance company that eventhough there is limited research on IVIG it works for those who are receiving it. I continue to have attacks every weekend but instead of going in for IV fluids I have been staying home sleeping and drinking fluids. Please help me by sending me a letter that discusses your experience and positive results using IVIG. Any questions feel free to call me at 651-222-2374 or e-mail me at gagners@msn.com. I am truly thankful for the help that you can give me. Sincerely, Heptagona ( Steve)

Everyone, I need to amend what I asked for. Could everyone please have their MD write a letter in support of IVIG. Address it "To Whom It May Concern". As Arturo pointed out to me this will be stronger voice to the insurance company. Again, I appreciate all of the help that I have received. Together we stand for all SCLS patients. Sincerely, Steve

just wanted to update that since taylors last episode in dec 2010, and since he started his ivig treatments and his daily dose of singular he has been in the hospital with 2 episodes of the flu and also had a bad cold. during these times there were no signs and symptoms of cls. i was wondering should the ivig treatments not keep him from getting sick or does it just keep the cls from occuring. like i said he has been sick 3 times but no cls since we started it

I assumed the IVIG would also prevent colds/flus. It is not the case. I don't normally ever get them, at least in the past 20 years. But this winter, I have had 2 colds (today actually). Both have been very mild. This is my first winter on IVIG. I hope Taylor stays episode free. Does Taylor show any signs of swelling or lower blood pressure when he was sick? Walt

hello i just want to taok about the tratment with ivig i us it since may2010 every thing is ok my last time with an acut epsiod it was 11/05/2010 ntyel now i am ok i ll going to frace to make my control with dr, amoura at april 2011, i hope for all of that god bless oll the pacients of scls and oll the pacients yaser rome for any information my a mail yelganzory1@fastwebnet.it

all 3 times that taylor became sick with the flu and cold his blood pressure and blood work were all perfect. he has not had any type of cls symptoms when unwell or well.