Hi I have a question to all of you, I started with ivig at 2010 thanks for God I haven't any problems if any of our community had any problem because some time I read that someone had a episode untel using ivig Thank you Yaser.

Hello Yaser I had an episode after IVIG because the IG wore off before 4 weeks with me. I am now "good" on 2 weekly IVIG. John

Yaser I hope you are doing well. I have been on IVIG since 4/2010 like you. I am infusing every 3 weeks due to problems with periodic fatigue. It has helped very much. I had one episode since 2010 on Jan 31 this year. I think it is from eating out and what they put in the food. My blood pressure dropped at the restaurant and passed out. It was over by the time they loaded me in the ambulance. My Docotor has been working on this all year. If I could get one sample while passed out , I think it would help Doctors assess it better. That is my thought. Have a great Christmas and new year. Walt

Hi Walt, I found the same issue with food. I have not sorted it out fully, but I cannot eat MSG, fresh yeast or yeast extract, bananas. The bananas don't cause so much problem if I only have a small amount. I don't know whether this is due to the condition or the IVIG. What happens is that my heart races and becomes irregular. I have an implanted loop recorder which can capture this at the time. I then press a button on my external device and it picks up the tracing via wi fi. But all it does is tell me that I am not imagining it. Sorting out the diet is up to me. I am ok with meat, peanut butter and crackers, wine ( of course!), and I grow my own vegetables. I take any new food very carefully. Let me know what you think? John

I had a massive episode Friday last and was just discharged from the hospital. I was finally infused with IV iG over three days and also treated for newly diagnosed hyperinsulinemia which may account for my severe autonomic dysfunction. I am producing four times the normal amounts of insulin. The good news is that I may be able to wean off the corticosteroids. I am almost euphoric to see my feet and ankles and to have reduced endocrine symptoms with insulin blockers. It will take some time to restore stamina and muscle mass but I am hopeful. Grace a Dieu!

I had one serious episode after I started IVIG but I strongly suspect it was due to under dosing, and stress.

Woo Hoo! Stedrick". At last. I am so pleased for you.

I have had 2 episodes since I started on IVIg, but this was my fault because I missed 2 IVIg sessions. I was OK again after the IVIg kicked in. No further episodes to report and no more missed appointments.

Jcarson, you are spot on. At last. I happen to have an avocation as a jazz/blues vocalist so with apologies to Etta James: At last, my meds have come along My swollen days are over And life may yet be long Oh, yeah, at last My ankles are not blue My veins were wrapped up in steroids The night I looked at you I found a drip that I could speak to A drip that I can call my own I found the care that I've been seeking The care that I have never known Oh, yeah when you wait, you wait Oh, and it seems your hope is past But here we are infusing For hope is mine At last

A Tribute to Joe... They're everything I hope for They're everything I need IVIG's so beautiful to me Your drugs are beautiful to me Can't you see Tired of all the swelling, the drips and all the meds You're every, everything I need You are so beautiful to me

Haha you guys. I am a jazz keyboardist and bassist. We could start a CSCL band and go on tour spreading the word!! Glad all is going well for you finally Stedrick( and of course John:) )

I realize that this is a serious site, and I am a serious lawyer-type, but we need to break some time. To wit, shall we call it the Dick Clarkson Bandstand Tour? I think it's a swell name. Slightly more seriously, where are you located? Do you jam often?

Yes its nice to lighten up sometimes. A great name by the way! Yes I play a lot...but am located in New Zealand so that might prove problematic.....

If we could make a slight change to Dick Clarkson Bandstand Company. Then we could further abbreviate it to DC/BC...and sing a song called "Highway to Heaven". Since this condition made itself known, I get attacks of Pulmonary oedema, and the first warning sign is laryngeal oedema. My wife says "your voice has gone again.." Meaning, "you're about to have an attack". (It's my only warning before extreme shortness of breath. At which stage, I start with my Joe Cocker repertoire (RIP). I am surprised you haven't heard me in the long white cloud! (It's a coping mechanism) John

Hi guys, You have put a smile on my face. Humour is a wonderful antidote! I have a serious question for you all who are on IVIG. I am contemplating (after talking with my new haematologist) starting IVIG. My reluctance comes from the fact that I don't appear to be affected in the same way that you all do. I seem to only have acute attacts with long periods in between. 2005 was my first attack will a couple of very minor attacks between then and June 2014 (9 years). I keep good health and feel pretty good most of the time. I have other issues of pain and a disability due to my 2005 episode which will not be helped by IVIG. In short in my head I ask myself why would I be treated with IVIG when I feel well and keep good health? And what happens if my body does not tolerate IVIG? I am fully aware of the outcome of ISCLS has on my body and am extremely grateful to the hospital system here as they have managed both my acute attacks amazingly well. The medical staff have always listened to both my husband and myself along with followed what has been on this site especially the 5 minute consult paper. Your thoughts please it's a big decision for me. Ruth Christchurch New Zealand

Hello Ruth, Hard decisions! I can only offer an approach, not an answer. First, are you able to predict an oncoming episode? If you get enough warning, then perhaps you can get a dose of IVIG only when needed. I tried to get some idea by daily weight, bp, haematocrit etc but it didn't work for me. May work for you. Do your Drs have any thoughts? Secondly, while IVIG has kept me out of trouble for 15 weeks, it is at max dose. Higher doses can cause SERIOUS side effects. This may well be an area for discussion with your Drs. Third, and this is not for me, it is possible to get IVIG subcutaneously at home with the District Nurse, once dose etc is established. Sorry I can't offer more. Good luck. John

John thanks for your quick reply. As for predicting an attack... No not really my attacks come on very very quickly and acutely. I go from feeling unwell with cold symptoms (not always when I get a cold do I have an attack) up and about doing things to collapse blood pressure drops ambulance called admitted to A&E and then ICU where the doctors do all they can to save my life. (Following all that has been documented so far about ISCL apart from IVIG at the time of an attack) This is why it is difficult for me as I am different to you all that leak (what appears to me from reading this site) all the time? I have read and re read all the literature and I am still not convinced that IVIG is right for me due to me keeping so well in between attacks. I understand I am now back in the "who knows" stage, so to speak, due to having this last acute attack however 6 months down the track I feel fit and well again. The one thing I do have is excellent doctors who all seem to think it is the correct approach, its just me not feeling like I want to go down this road because Do I really need to just yet? and its a huge commitment once a month along with not knowing if I'll have side effects etc. Thanks again for your reply and all the best to you. Ruth NZ.

Ruth, My attacks seem to be just like yours. I have only had two and they were a year apart. I too was not sure about IVIGG. The monthly inconvenience and side effects were holding me back. The first attack was awful because of the extra fluid administered, when the doctors did not have a diagnosis for me yet. After visiting the NIH I was convinced to begin IVIGG, but I only wanted to do it every 3 months. A year later I had my second attack. It was not as bad, no fluids were administered, because the doctors now knew my disease. During the second attack the doctors monitored my vitals and administered IVIGG. It took 5 days in the hospital and week at home to recuperate. I decided to go to monthly IVIGG, because the doctors said something to me I didn't think about. They said the undo stress the attacks are putting on your heart, kidneys, and other organs is something they can not measure. They did not know how many attacks my body could deal with and would the attacks always remain the same or get more severe? There is too little known about our disease and not a big enough group to make any assumptions. I began taking monthly IVIGG, and when I had side effects such as migraines I opted to split my monthly dose into two. I now receive a dose every other week. It takes 2 hours a session and brings me peace of mind knowing that I am not further damaging my organs. This is my experience with making the decision you are struggling with. I hope it helps. Cristina

Hi Ruth I start IVIG about 4 years ago, since then I have gone back to work full-time and completed the MBA that I had quit because of my health. I am sensitive to IVIG so I have to have pre-meds and have it infused slowly but it is worth it. Rita

Thanks Cristina and Rita for your reply Cristina you having given me sound advice and I thank you for that. Tuesday I see my doctor so with a couple of questions under my belt, I am thinking maybe yes lets give it ago? Ruth

Ruth, I too have had long periods between attacks. However, the impact of any attack as we know causes great strain on our bodies not to mention our emotions. I started monthly IVIG more than a year ago and have not had any further episodes. The peace of mind knowing that a treatment is working is wonderful. I get my monthly treatments over two consecutive days, each month. This minor inconvenience to sustain life and limb loss is a small price to pay. The side effects are very manageable with the provider administering the correct dosage/rate. It took very little convincing from Dr. Druey at NIH and Arturo to begin the treatment and I am very grateful that I on IVIG. You will be making the right decision. Good Luck. Robert

I have just been discharged from my second hospitalization in 5 weeks. My first IVIG infusion was early January in connection with a severe attack and hospitalization. Unfortunately, my second infusion was unable to be scheduled at the four-week mark and I had another attack, resulting in a four-day inpatient stay, IVIG, very flat veins, ten IV attempts, and seven successive IV infusion sites that worked for a while, then infiltrated. The situation was complicated by adrenal insufficiency. I am very tired but happy to be alive and to have been infused. I am praying that the outpatient schedule will be in place before the next infusion is due.

Hello Stedrick, Too bad about the last attack.. It seems so dispiriting! BUT. I found my 2g/ kg did not last 4 weeks.. Only 2.5 weeks. So I changed to fortnightly ivig 19 weeks ago. ( who is counting?) without another attack, and today I started a graduated exercise program! Whoopy doo. I also reviewed the first draft of a publication covering my 4 attacks. Don't let this get you down! John

Woo hoo John! It is so encouraging that you are starting an exercise programme .A sign that things are really improving for you:)

Hi Ruth , This is Linda , guy Allen overland's sister. I started talking to my brother over two years ago about going on ivig and he had an Appt with dr Druey to get started on Jan 26 2015 . He passed away Jan 23,2015 from a his second severe episode in 10 years. He was similar to u and Robert and did not leak a the time. He only tool theophylline and had a minor leak here and there which were managed just fine. He was lulled into a false sense of security that he could just continue and not have to go to the ivig. Some that have major leaks all the time have no choice . I completely understand that this is a big decision I will tell u that both dr Druey and arturo were trying to convince him to go on ivig for some time as well and even during this last episode we all said if he survived there was not going to be a choice - he was going on ivig. Please please please do not hesitate and just go ahead and do it if ur doctors agree. The one thing that haunts me are dr. Greip's words when my brother was diagnosed at the mayo clinic over 10 years ago in Rochester. He said " it will come back, we don't know when and how bad, but it will come back" . Arturo and dr Druey told me ivig is 98 percent successful and yes there are some possible side effects but at least u will be alive!!! Not to mention the repeated attacks even if infrequent and the toll they take on ur organs which may have been a factor in guy's second severe episode and the fact that even tho he was only 54 and still in excellent health he was still older than his first episode at age44. If u do not take ivig u r playing russian roulette with ur life. I don't know u but I have been on rareshare since the beginning and I have followed u and the others and I care what happens to all of u. Please just go ahead and take that step to the ivig which I know will save ur life. I only wish I could jVe persuaded my brother just a little sooner . Good luck and be well!! Linda

Hey Ruth , One more thing to remember is that the 98 percent success rate of ivig is in the prevention of scls episodes only. In regard to stopping or slowing an episode once it begins the results are not as clear. I can tell u that in the first 48 hours of this final episode the ivig was given twice( his first time ever getting it) but seemed to do very litlle. Dr Druey was there every other day and in contact daily and arturo was there every day and every protocol was followed and everything anyone could think of was tried. I will be eternally grateful for their help in trying to save his life and I hope by witnessing and taking samples more can be learned to save those during a first episode or those who continue to leak. The autopsy was also done at NIH. They both told me that even tho ivig is given during episodes it's effectiveness and success rate is not nearly as good and has mixed results. I think guy thought that if he ever had another severe episode he would just start taking ivig then and be fine. Not true!! I am adamant about what I am telling u because I lost a brother who was very dear to me and my two children and two grandchildren. My 30 year old daughter who is a teacher still cries when we talk about him. I want Guy Allen Overland to be the last name on the dedication page by arturo. To me the decision is obvious and do not waste another minute. Best of luck and I hope to read that ur doing well for many years to come! Linda

Hello all, I had my first attack 6 years ago, 3 Times since today and prof Amoura told my internist that I needn't IVIG. I have never met him and I would like to know wy some need IVIG and me no ? I am to sad about Guy Allen , When I read his last attack I wonder if IVIG would have save his live ? Just about me....I would like to say you that my MGUS is on the increase , I have proteins in my urines ,I will maybe have a myeloma in the futur, now I have an appt every 4 month with the hemothologist to invigilate if my kidneys are well. Take care, Anne Laure.

Hello Anne Laure, That is too bad. However, it is precisely this area where IVIG is good. Anecdotally, it has decreased MGUS proteins progressively over time and may in fact reduce your urine proteins. John

Perhaps a note re my recent hospitalization may be helpful to others. Dr. Rivera at Mayo Clinic Jacksonville Hematology encouraged me to provide Dr. Druey with attached photos of a recent episode . In addition, I had a vascular collapse resulting in seven consecutive infiltrated IVs and significant difficulty conducting the IviG. Infusion. I am scheduled for placement of a port on Friday at Mayo and outpatient infusion at Munroe Regional Medical Center next week as recommended by Dr. Rivera. Dr. Rivera has seen one prior case of SCLS and worked at NIH Bethesda earlier in his career. I hope that you find this information useful. Susan H. Tedrick stedrick@centurylink.net

Hang in there Susan!

Hi Susan, I love my port, I have a double port that was installed before I started IVIG as the Doctors had trouble starting a central line.Good luck to you!