*May 2012 *TO ALL IVIG USERS* Please update your post for this topic. I believe this will aide Arturo track IVIG users. If you have nothing to update, please edit your post with the month and date so Arturo knows you are "as is" and that you have confirmed.* This may be a helpful topic to compare IVIG brands, infusion rates and insurance approvals. This can serve as a fact base for all. Could all IVIG users fill in their info Name: Walt IVIG brand name: Gammagard, now changed to Gammaplex January, 2012. Changed back to Gammaqard May 2012 with NIH letter due to problems with the Gammaplex. Maxium Infusion rate: 240 ml/hr Date of 1st infusion: April, 2010 IVIG approval period: Every 6 months Place of infusion: Home infusion IVIG dose: 2g/kg

Claude Pfefferlé, born on November 18th 1953, weight 70 kg/182 cm. SCLS since May 4th 2003. Redimune : first infusion on April 11th 2005, 140 g over 24 hours in a local hospital in Sion-Switzerland. Next monthly infusions at home. Insurance approval for 3 months, then for 6 months, then for an indefinite period. Octagam first infusion on November 11th 2006, 140 g over 18 hours. Kiovig first infusion on December 11th 2006, 140 g over 12 hours. Return to Octagam on March 11th 2007, 140 g over 10 hours. Privigen first infusion on October 11th 2010, 140 g over 8 hours. Currently monthly infusion at home, 140 g over 4-5 hours without any problem, except headache.

Edit 20 Jan 2012: Brand Intragram Height 1.63m weight 65kg. Had first infusion recently - December 2011, 2000ml (ten bottles of 200 ml each) over 11 hours .over 2 days, one day apart.so 1000ml one day, the a day off, then 1000ml the third day Am on a trial period for 6 months

I have just found out there will be a 7 week gap between my first and second treatment due to the Christmas/New Year break What does this mean for me medically? I am quite concerned about getting the most from these treatments. Sarah

*No change as of May 2012:* Name: Arturo IVIG brand name: Privigen Maxium infusion rate: 432 ml/hr Date of 1st infusion: November 2009 IVIG approval period: Every 6 months Place of infusion: Hospital infusion center IVIG dose: 2g/kg/month total, infused during 2 consecutive days. No more episodes since first infusion.

I have asked and it is not possible..........:( I have it done at my immunologist's rooms not under the public system and his rooms are closed over Christmas. He is worried about a negative reaction so wishes to supervise it himself so I must abide by his concerns. I am grateful I am getting it at all. so I do not want to insist too loudly but have passed on the fact that Mayo says it should be on a regular basis. I will be having the next 4 after that done consecutively though.

Please New Zealand has a very good and robust 1st world health system and feel people might get the wrong idea from the above comments. I am very grateful for the health care I receive down here in Christchurch New Zealand and have always been able to access 24 / 7 quality health care. Ruth Nolan

Hi my name is yaser My first attack was at 02/2008 I stat IVIG at 05/2010 2g/kg until 04/2011 and right now 1g/kg one’s a month Everything is will thanks for God I’m just had my last operation in my right leg at 28/11/2011 I’m ok ,hopping for all a very good health yaser

Name: Jeff IVIG brand name: Privigen Maxium infusion rate: 470 ml/hr Date of 1st infusion: March 2010 IVIG approval period: Every 6 months Place of infusion:Washington hospital Center infusion center IVIG dose: 2g/kg/month total For those getting less than 2g/Kg keep a close eye on your weight.

Name: Nolan (First attack June 2007). IVIG brand Privigen. Receives 2 mg/kg every 28 days. Given at home over two nights over 8 hours. No pre-medication taken. First dose July 2009. Approved every 6 monthes. July 2012, no new information. Still doing great without any episodes. May 2013: Still the same. No episodes.

Name: Rita (First attack May 2007) IVIG Brand: Flebogamma 5% 100 gm per day two days in a row every 28 days at infusion center. Top rate 600 mL per hour Pre treatment steriods, tyleonal, antacid & beniral

Name: Marc IVIG brand name: Privigen Maxium infusion rate: ? ml/hr(not sure but going in Thursday for next round - very, very slow at first then fast at the end) Date of 1st infusion: July 2011 IVIG approval period: Every 12 months Place of infusion: Hospital infusion/cancer center IVIG dose: 2g/kg/month total, infused during 2 consecutive days - 5 hours each time No SCLS symptoms since IVIG!(thank you, Arturo!) Minor Side Effects: Some headaches but improved over time with steroid prior to treament. Nausea right after eating that is definiteley volume related. I have lost almost 20 lbs since the treatments started, but have now leveled off. I had been taking 600 grams of Theophyline per day but have since cut back. Rash, like red itchy bites increasing over time. As anyone seen an increase in allergic response(skin related) over time ? Or the nausea - it is not acid indigestion as I have taken omeprazole for years and this is much less acidic and happens immediately after eating. My appetite is good, just can't eat as much and also it seems that ground beef and dairy are problematic. Dr. is now prescribing metoclopramide and that helps some..... I am tired of all the meds!

I am intrigued by the rash. I have been blaming a rash I had subsequent to my first IVIG treatment ( on one arm, chest and neck) to bed bugs I might have got after staying for two nights in a cheap hotel! Perhaps it is not bed bugs but a side effect.....

In case it helps, I found this on the Internet, in a website from the New Zealand Dermatological Society: "Skin reactions to IVIG are uncommon, and the exact incidence is unknown. Of all the reported rashes, a a blistering type of eczema is the most common (a type of dermatitis). It often begins at about 8 to 10 days after exposure to IVIG. The rash characteristically begins as a dyshidrotic eczema (pompholyx), i.e., small itchy blisters on the palms, but this may be followed by a more generalised eczematous eruption that spreads throughout the body. The affected individual may become erythrodermic (red all over) and pruritic (itchy). The skin lesions often resolve within a period of 1 to 4 weeks. The use of topical steroids or systemic steroids controls symptoms and may speed recovery." "The exact cause is unknown. It is thought that the body's immune system reacts to one or several substances within IVIG. This could be a stabilizing agent or a part of the immunoglobulin. T-cells (lymphocytes) are thought to play a part. The reaction may differ depending on the batch and type of IVIG as the immunoglobulin is obtained from a different pool of individuals."

Arturo, Thanks for the info. It sounds similar to what is described above except for the blisters on the palms. Nothing on the palms or hands for me but the rest sounds similar. Mine are small red bumps but if I itch they can get flatter and bigger. I have been trying some topical over-the-counter cortizone and that helps some, but will go to the doc and find out more soon. Will update if I learn more info. The whole thing is more of an annoyance than anything urgent, so I would not discourage anyone from IVIG..AT ALL! Just trying to 'learn the tricks of the trade" so to speak.

Name: Dawn Fye Brand: Carimune First: Nov 5&6, 2011 after 6 leaks (ICU Visits) in 2 months. Approval: 1 Year Place: Infusion Therapy Unit inside Clinic Max Rate: Start slow..Max 200/Hr Dosage: 62 Grams over 2 days Side Effects: Minor headaches for a few days. Easily controlled with tylenol. Best Part: No leaks so far !!!! Well worth it !

My maximum flow rate is 350/ml per hour.

UPDATE:MAY 2012 Name: Glenn IVIG brand name: Flebogamma Maxium Infusion rate: 540 ml/hr Date of 1st infusion: March, 2011 IVIG approval period: Every 6 months Place of infusion: Drs office - Center for Cancer. IVIG dose: 2g/kg

Happy New Year Walt! Let me know if you all make it down to the DC area.

Here are the stats for my husband: Brand: Privigen Jan-Mar. 2012 Gammunex April 2012 going forward Max. infusion rate: 250ml/hr Date of first infusion: Just started monthly transfusions January 2012 (but had emergency transfusions nine times prior). IVIG approval period: Not applicable (covered by Alberta Health Care) Place of infusion: Day Medicine unit at hospital Dose: 2g/kg Pre-treatment: Tylenol, steroid (by IV), benadryl (by IV) Other: Had two SCLS episodes despite receiving monthly IVIG therapy (Started monthly IVIG in Jan 2012, had episodes requiring hospitalization in May 2012 and August 2012). This post last updated: August 27, 2012

nom: Josée Lizotte marque: Gamunex 2 gr/kg sur deux jours. débit: 50 cc/hre X 30 min 150 cc/hrs X 15 min 250 cc/hre X 15 min 350 cc/hrs médicaments préventifs: Prednisone la veille du traitement: 3 x 50 mg: 6h00, minuit, 6h00 25 mg benadryl depuis août 2008

Name Ciro Product Name : Gammagard Concentration : 10% Infusion Rate : Begin 0.5 ML/Kg/Hr double rate q30 Min. to max of 2Ml/kg/ hr Monitor vital signs Baseline ( prior to infusion) Every 15 Min.x 2 Every 30 Min.x1 Every Hour x 2 Every 2 Hours for duration of infusion Place of infusion Hospital First infusion Dec 3 rd. over 10hrs.next day8 hrs . Second infusion Jan. 3rd over 6 and a half hrs. next day 6 hrs. Take Tylenol and Prednesone day of infusion plus Tylenol for three days after

Name: Maria Morris IVIG Brand: gammagard Max infusion rate: 200 ml/hr Date 1st infusion: May - Sept 2010, 1g/kg October - present, 2g/kg IVIG approval period: every 6 months Place of infusion: Hem/Onc Clinic near hospital Current IVIG dose: 2g/kg IVIG Brand switched to Privigen, with my maximum rate being 180ml/hr

I think you meant 2011 rather than 2010, Maria. (I'm keeping a careful count.)

I had my second round of IVIG this week, however I have come against a major problem. The Intragram is covered by the Government but the cost of administering it ($1000 per month for the two days of infusions) is up to my insurance company whom I shall name- *Sovereign-* which is trying to block any further treatment. Arturo, thank you for all the information you sent me about IVIG as I shall be sending it on to Sovereign. Is there anything else I need to do or should do as I am gutted Sarah

I also `get blisters over my body. My big problem is the headache it has been 15 days since my treatment and I still get them. WILL BE GOING TO N I H THE 23rd of Jan.I hope to get some answres I also feel very tired most of the day .THANK YOU FOR ANY HELP ON MY PROBLEMS.

Custom, I have a standing offer to come and visit with anyone from the SCLS community who is staying at NIH and would like to be visited in person, so write to me at _aporzeca@american.edu_ if you so wish. Sometimes misery loves company. Arturo

arturo, i will be going to NIH monday 1/23 and will be there until friday 1/27. i guess you may be right misery likes company and i would enjoy a visit with you. i still have many questions and would like to share them with you. i will be arriving monday and they have e-mailed my schedule for the days. would like to meet and thank you for all your help and info. we tried to e-mail as per your website address but could not connect. custom

Phew, after a MASSIVE fight with my insurance company and thanks to Arturo's care packages, I have been approved by my insurance company for IVIG until May/June.It shall be reviewed then Thanks Arturo, your assistance has been invaluable

That's excellent news.

Would everyone please update their posts for this topic? If you have no updates, please edit with May , 2012. This gives Arturo a good update on IVIG users in one topic.For new IVIG users, see first post that I made for this topic. Walt Breidigan

I am receiving 36 grams of GAMUNEX-C over a 3 hour period every 4 weeks. Appears to be working as I have not experienced any symptoms in the 14 months on the IVIG Therapy. ...Donn

I will be receiving my first IVIG treatment on July 19th at Beaumont Hospital . It will be 30 grams and the brand name is Flebogamma . Thanks to the help of Dr Hayman at Mayo, as well as my Immunologist, Dr. Lauter, my insurance companty is fully covering the cost of these monthly treatments.

IVIG 0.5g/kg at 200ml/hr Every 3 weeks Make: Octagem Don't know if this works as I have just started treatment (on11/7/12). Only side effect was a mild headache.

Hi Donn, How much does this work out as per kilogram of weight? It sound like a similar dose to me as I recieved 35g. Cheers, Kevin

Name- Cristina Weight- 120lbs IVIG brand - Privigen Amount- 50g over 4.5 hrs/ every 3 months Location- at home infusion Max. infusion rate - 420ml/hr Side effects - migraine headache 2 days after The quarterly regime of IVIG that I am on is *NOT* recommended for most with SCLS. To date I have had two infusions with no attacks or symptoms since being diagnosed in December 2011. I will keep everyone updated on its effectiveness.

New to this website sorry if we are not at the proper r place. Im writing in for my wife who is currently in the Cleveland Clinic I .C.U. receiving her first Igiv infusion. She has 10 episodes over the last 10 months and they finally have diagnosed her. We are not sure it will be covered. Not sure how to get it covered. How long before we should see results? As many people with this disease it has seriously put a mental strain on our lives over the past year. We are hoping this works. Right now she is in her 4th day inc the i.c.u. and she has developed plural infusion. She is so tired.

Hello Arturo and Walt, I am recovering from SCLS attack. I was taken by ambulance July 6, came home July 13, currently home one week now. Came home with steroids 80 mg, I am now dosed to 40mg p/day, On Monday dose to 30mg and see my doctor on Tuesday. I was fusing with IVIG in Dec, 2011, Jan, Feb and March 2012. three days after my March fusion my head swelled up could not even recognize me!!! I was frightened could not breathe. Went to dr. Long story short all they could think was blood clot! Had four very extensive tests done for clots and nothing! Thank God! But my problem was not better getting worse. Went on more steroids! Finally after 3 months of that they did a test that showed I had scare tissue in my vein where the line went for my port! They ballooned the vein which gave me great relief! Five days later they took my port out because it was causing scare tissue and extras blockage. then five days after All that I had my attack!!! They could find a vein to hold IV very well my veins do not respond during attack, So the pick line team came in and put 1 18 gauge in one arm and 3 18 gauge in the other and by Sunday morning they all blew! So they wanted to put me in ICU with central line and I said no I wanted a pick line. There was a little problem with me because I had just had the intervention in my vein so all they could do was a mid line pic line Worked well. I received IVIG for first 3 days and fluid. THis time my heart rate dropped to 32 they sent in cardiologist. I was put on moniter, as well as oxygen, my heart would always drop in 30's at night. during day 40's. He is not sure if this was from Capillary Leak because he could not find any data regarding anyone else with heart issue during leak. I am still on monitor for one month. Then they will read data and let me know, I believe my rate is up since I am home, so I hope and pray nothing serious. I am extremely tired!! Each hit I believe makes you weaker and weaker. I am now anxious to start my IVIG fusion which my dr is starting in August. Because I have no vein that will sustain a 3-6 hour fusion they are going to put a pick line in every month just for my fusion and then take out, I know it sounds like a lot but all I can do . Very thankful they can do that. I have come a long way and have a very long way to go. We have been in contact with Dr. Drury, and was able to send him samples from attack. Hope they help. It has been a crazy 4 months here. Looking forward to this all behind us, and trying my monthly fusions again!! Mostly to feel better and attack free!!!!! They are not fun!!!!! Very thankful to be alive and here and very grateful to the Good Lord. Glad to read all are doing well with IVIG, for people like me it would be great if they could make it in pill form:) Take care and will update with my IVIG info when I start in August, okay. They are still following and watching my Multiple Myeloma At this time no further progression, very thankful! Still home and recovering. God bless you all. -

I'm so sorry to hear about your troubles, Mary Jane! Your head swelling is such a mystery! It's terrible that none of your veins will sustain a 3-6-hour infusion. Have you tried speeding up the rate of infusion, to bring the procedure down to no more than 3 hours? (That's how long mine takes.) If you don't have a major problem with headaches, you might like to ask about that. I'm glad that you sent blood samples from your episode to Dr. Druey for analysis. As more and more of us transition to an IVIG therapy and stop having episodes, he's running out of episode-related blood samples to run experiments with in the lab. Whenever you get a chance, please put highlights of your saga on your personal profile page, which is blank. Your story is important and shouldn't get lost in these threads. Wishing you better health, Arturo

Mary Jane I am so gad you made it through this episode. I too have gone through a tough few months because my insurance switched my IVIG brand. This caused a situation similar to before I was on IVIG. With the help of Dr. Druey, I have been back on my regular IVIG for 3 months. I seem to be back to a normal. I know we all have similar and different problems with CLS, but hang in there. IVIG still remains the best option for us. However, I think CLS causes problems in addition to the normal ones inherent from CLS. My family Doctor Barret racks his brain everytime I bring a new problem to him. Are they a symptom of CLS or does CLS cause other problems. I personally don't want to blame every problem on CLS, but before that i had no problems, almost perfect health. The nurse who does my home IVIG infusion has had a very hard time, in the last few months, in finding a vein to use. She has worked with infants, so she is very good at finding them. I always hydrate 2-3 days before. I hydrate way beyond what they recommend and it has worked the last 2 motnhs. You may want to contact Dr. Druey and see if the NIH has an expert on infusion and preperation of the veins. He had someone help me with my Colitus. I also get Remacade infusions for that. I hope you rebound back to a normal situation. CLS sucks. Sorry for the verbage, but it does. I worry about my veins in the future when we are even older and how the IVIG responds. I can say that I have lived past the previous 5 year mortality rate after ist episode. So we are making headway. Our problem still comes down to the amount of knowledge that the medical community has on CLS. your friend Walt

Hi Walt, I have had a port installed. This was before the IVIG treatments as the veins in my neck were collapsing when they were trying to get a central line started. It is great for the infusions and best of all getting veins is no longer a problem except for blood tests at my GP. Vein stick are hard, my veins keeping worst. Rita

Maryjane-Just a heads up on the comment of the heart being effected, my wife's heart rate drops every episode. There was one time it stopped and she coded. The Cleveland Clinic installed a pacemaker to help prevent that from happening again. Since then, if she were to have an episode, the rate drops to what the pacemaker is set to and she is paced at that point, which is during most of the episode if not all of it. In her case, the heart rate becomes critical. Thank god the Cleveland Clinic was proactive as it has most likely saved her life more than once. This MOST definitely effects her heart!

Our 34 year old son had his first episode in February 2012 and repeated eight months later in October. He is now on IVIG (2grs/kg every four weeks). Up to now the only secondary effect was a headache: something we expected. But immediately after his last session he has developed an allergic reaction (blotches on his arms, chest and back) which has lasted now for two weeks. In the discussion, IVIG USER FACTS, Arturo mentions an article from New Zealand that suggests the rash goes away within a period of 1 to 4 weeks. Both “Barney” and “Windows” mention their problems with rash but we cannot find any follow up to find out if the rash repeats like the headaches, what they did to help cure it or if it stopped spontaneously as the New Zealand Dematological Society suggests. Since all this was recorded last year, maybe somebody else has had the rash experience and can share their information with us. Thanks!

My rash went away after a few months. My dermatologist had a name for it, but I do not recall what it was....sorry. Benadryl seemed to help the most. I take some at night before I go to bed, since it makes me sleepy anyway, plus I have some seasonal allergies as well and take Allegra in the Spring/Summer for that. It seems the rash was worse in the winter when my skin was dry. Overall in the last year it has pretty much cleared up and I don't see it anymore. It probably lasted around 3 months or so. I get benadryl on the days I receive IVIG, so I tend to take some at night for a few days before and after the treatment and then sporadically throughout the month. I can't say that the benadryl solved it, but the rash has dissipated. By the way, my rash was pretty minor - I could have easily lived with it if I needed to. The IVIG is well worth the side effects I have had or have(headaches on and off the week following treatment). Good Luck, Barney

Thanks for the update, and I wish you continued good health!

Thanks, "Barney" and, as Arturo mentioned, it is good to hear about your good health.

Jabo I have the same "rash" or reaction as you mentioned about your son. I have the rash all month long between IVIG and never seems to go away. Same place, arms, chest and back. I saw dermatologists and they gave up. After asking several Doctors plus the NIH, my wife figured it out. She had me try Neosporin. This is after some expensive perscriptions from Doctors. The Neosporin stops the rash in 2-3 days everytime. If he keeps putting the Neosporin on every few days , he won't scar and the rash will not evolve. I waited to long for a remedy, so my arms and chest scarred. I have not had any new rashes since I have been applying Neosporin. I don't think many CLS patients get them. I originally got them on the forehead and neck also. Walt

Thank you, Walt. We will look into the availability of Neosporin or something similar in Spain. We hope that IVIG will continue being as effective with our son as it has been with you. Best of health, jabo

Walt Do you know what the active ingredient is in Neosporin. I also have a continual rash from IVIG.

Found this on the website: What type of active ingredients are in NEOSPORIN® First Aid Antibiotics? Neomycin Sulfate is in the aminoglycoside family of antibiotics active against gram positive and gram negative bacteria. Polymyxin B is a cationic polypeptide antibiotic active against gram positive and gram negative bacteria. Bacitracin Zinc is a cyclic polypeptide antibiotic effective against gram positive bacteria. (Please note that Bacitracin Zinc is not present in Maximum Strength NEOSPORIN® + Pain Relief First Aid Antibiotic/Pain Relieving Cream because it is not stable in a cream formulation.) Pramoxine is an external analgesic that provides temporary relief of pain or discomfort. (Please note that Pramoxine is not present in Original NEOSPORIN® First Aid Antibiotic Ointment, including Neo to Go!® Single Use Packets.) Walt, can you clarify which Neosporin product you use? There is a 'family' of brands and what I copied and pasted above was for the First Aid Antibiotic Ointment. There is also a product for Eczema which contains 1% Colloidal Oatmeal as the active ingredient.

Warren, I'm so sorry to hear that you also suffer from rashes. Neosporin is a hugely popular balm in the USA marketed by Johnson & Johnson, and the official company site is www.neosporin.com According to Wikipedia, "The original ointment contains three different antibiotics: bacitracin, neomycin, and polymyxin B, in a relatively low molecular weight patented base of cocoa butter, cottonseed oil, sodium pyruvate, tocopheryl acetate, and petroleum jelly. ... Neosporin is marketed for the prevention and fighting of infections and speeding the healing of wounds. ... [However,] numerous trials show little evidence that covering a small wound with Neosporin provides any benefit greater than that of simple petroleum jelly. ... There is also significant concern that use of Neosporin contributes to the emergence of antibiotic resistant bacteria." Therefore, you might want to start with petroleum jelly.

Thanks everybody

Change in IVIG: The doctor has changed me to Gammagrad 10 gm. It is going okay, I had a little trouble with the first few infusions,

Name: Robert First Attack: September 1989 Diagnosed: November 2009 I want to share the good news. Yesterday, I was given approval by my insurance company to begin IVIG treatment. I will be on Previgen, which will be administered at my local hospital, as an outpatient. My first infusion will be later this month. Any suggestions on what should be done prior to the infusion? I have read that some people take Tylenol and Benadryl. A special thanks goes out to Dr. Pecker, Dr. Druey along with my Hematologist. All of us should be grateful for all the great research and support that Arturo provides to the community. Without his stewardship we would not have gotten this far.

You're welcome, Robert, and I'm very happy for you and your family! It's part of the IVIG infusion protocol to give patients some Tylenol and Benadryl or their equivalents a half-hour before the infusion starts, and to monitor your blood pressure and temperature about every half hour or so throughout -- just in case you have some strong allergic reaction, or your body is having trouble processing the fluid at the pace that it is being injected into you. Over time, most of us have felt fewer or no side effects -- besides, you can take more Tylenol or whatever after you go home if you feel a headache coming -- and our bodies have been able to process the fluid being infused faster, so you, your doctor, and the administering nurse should keep an open mind about the whole thing. Everybody is, and reacts, a little different. Besides, IVIG is a live blood product, so one particular batch might be different from another. Good luck! I'm glad you won't be playing "Russian Roulette" any more.

Robert, good to hear from you. The one other thing that seems to help me...both to find a vein and also in post-treatment side effects, is to drink lots of fluids. I try to really start hydrating at least a couple of days prior to the infusion and try to keep drinking extra the following week as well. Lots of trips to the rest room, but a small price to pay to alleviate headaches and other complications. Good luck, Barney(Marc)

After a year of IVIG, used on a preventative(preventive?) basis, i have been episode free!!!!! What a HUGE difference my life has been. Five years ago, i had my first episode, and a year later-the second. This led me to the Mayo Clinic. At that time, the stats given were a prognosis of 5 years. I have passed this "once looming date" in Dec2012!!!! I knew those odds would change once i began ivig on a regular basis. But, to pass this mark, was quite a victory for myself and all of those who contributed to this success. Especially, Arturo who was adamant that i do whatever it took to get my insurance to cover this, my doctor to order it, to participate in the NIH research process, etc. This year has been a trying one, but a blessed one, for sure. My mother suffered a stroke in Nov. 2012, while my father's health slowly deteriorated from a fall three years before. In Oct. 2012 he was diagnosed with esophageal cancer. Due to a heart condition, and failing kidneys, surgery wasn't an option. He passed away Dec.30th. Hence, the reason why i have been flying under the radar, so to speak. This was such a stressful and heartbreaking time for our family. And throughout it all, i never became ill. With my health history, emotional and physical stress have always been my triggers for an episode. It's taken some time to iron out all the kinks but, i am now on 10g of Flebogamma with a 10% dif, 2 times a month. This has been the ideal plan for me. The rate begins at 5, then each 30min increases by 5 more. Once i reach a rate of 20, i finish the drip at that pace. This usually takes around 5 1/2 hours. Lengthy i know, but well worth it. I also have an injection of solumedrol prior to the flebogamma. Originally i used 80mg, or ml? But, we have reduced it to 60. I hope to reduce that number over time. I also drink a quart of coconut water the day before , the day of, and after. I strongly recommend this, as gatorade seems to only make me feel bloated,. due to its very high sodium content. I also changed my diet. If anyone can, please watch "Forks over Knives".(documentary on Netflix).as it pertains to endothelial cells. I found it very informative. Especially, for those who feel red meat triggers their episodes. I'm no doctor, but my sister and brother-in-law are, and they urged me to seriously consider a vegan diet. i have never believed in one magic plan or pill to be the answer. But, i do believe it is a combination of diet, exercise, and proper treatment to boost our immune system. My energy has increased dramatically over the year, and i feel like i am getting my life back. But, i still have to be careful to pace myself, as it can be very tempting to run myself into the ground. I definitely will feel it the next day or two. Again, i just want to state, please do whatever you must to get on ivig regularly. You must ACTIVELY treat SCLS, not reactively. It not only has prevented the episodes, but definitely has changed the quality of my life. God Bless.

Maire. Sorry to hear about your about the loss of your father and your mothers declining health. Like you, we have had our share of aging parents failing health and death. This is cruel part of life. Thank you for sharing your IVIG information. I am anxious to get my first treatment next week and will post my news then.

Marilyn, I'm so glad that you are alive and well, and that you've had an opportunity as of late to take care of your ailing parents -- instead of them having to take care of you.

)Nombre :Jose (JOSARE1727) Primer tratamiento en Abril de 2012 con Kiobig 10% 2gr/kg cada 28 días máximo 420 ml/hr hasta abril de 2013. Desde abril de 2013 hasta Junio de 2013 Flebogamma IgIV 5% máximo 360 ml/hr. En ambos casos ningún efecto secundario importante exceptuando los dolores de cabeza

Completed my first IVIG treatment today: Brand:Previgen Dosage:70g/day over two days. Total 140g Infusion 44ml/hr, increasing by 44ml every 30 minutes. Maximum infusion rate 264ml/hr No side effects were experienced.