I have been on IVIG since Now 2011. During the 4th week, I'm extremely fatigued and dizzy. A 2-3 hour nap during the day is normal for me during this week. I ck'd with my Dr & was told this wouldn't be due to the IVIG. Does anyone else find a difference b4 the next IVIG treatment ?

To my knowledge, there is a minority of SCLS community members who are on IVIG and who felt less energetic (or more fatigued) in the 4th week after an infusion, which may be due to the fact that the infusion's potency does decay as time goes by and thus the capillaries may start leaking again. As far as I know, these patients' doctors have tried different things to steady the benefit of the IVIG infusion: (1) give more than the recommended dose of 2 gr/kg/month over two days (e.g., 2.2 gr/kg/month); (2) split the monthly infusion cycle in two, giving their patients 1 gr/kg for one day and then 1 gr/kg two weeks later; and (3) experiment with a different brand of IVIG, as long as the concentration remains at 10%. I haven't heard how all these sensible alternatives have turned out, but they are worth discussing with your doctors. One thing you may want to do is to have your blood drawn and tested every day (or every other day) during the 4th week after an infusion, to see if your hemoconcentration is more elevated than during the 1st week after an infusion. That would provide scientific evidence that you are/are not having capillary leaks.

I have been on ivig since Dec. 2011 and was on a two day a month.but, was getting fatigued about 2 to 5 days after the infusion. I went to Dr. Mark Pecker in N. Y.and He did split the monthly infusion cycle to every two weeks. I have only been on it for two months and still get tired about two days out of the two weeks a month, but not as tired as before. I also went to see Dr. Druey at the N.I.H. and he also recommensd spliting the infusions to every two weeks or a different brand as Mr. Aporzeca said. I do get blood test every two weeks and the levels have been good. so I will keep in touch if anything changes. It seems the IGG in the blood remains more level every two weeks if it has anything to do with the fatigue.

Thanks everyone for responding. I forwarded a copy of this info to my Dr & he seems to think I am fine because I havent been in the ICU since I started IVIG. He will not rewrite the IVIG sceduled order, nor will he put in order to ck my hemoconcentration levels. He said I would need to see an allergist b4 any changes are made. So, I scheduled an appt with an allergist & will need to go over this l-o-n-g story again. How frustrating ! Any suggestion of a different type of specialist to see besides an allergist ?

It really takes a medical team to treat a patient who has SCLS, because there are various angles to it and most doctors nowadays are overly specialized and can thus miss things. Ideally, the team should include, as the anchor doctor, someone senior in Internal Medicine who can see "the big picture" -- preferably a physician affiliated with a major university hospital. It should also include a consulting immunologist -- those are the doctors most familiar with an IVIG therapy -- and a consulting hematologist -- because SCLS is a blood disorder -- who can be called in to deal with specific issues (e.g., how to administer the IVIG). And then, of course, some of us need a podiatrist, an orthopedic doctor, and/or a physical therapist to deal with whatever damage we may have suffered in our limbs. Some of us also need the services of a psychologist or psychiatrist, because it's not easy having a life- and limb-threatening serious and rare illness, and also because some of the medications that we take -- particularly theophylline -- alter our mood and behavior for the worse. If your doctor thinks you are fine just because you are no longer ending up in the ICU, and if he's not willing to gather the scientific evidence necessary to rule in or out your having mild capillary leaks towards the end of your IVIG cycle, well, you should start considering getting yourself another doctor along the lines suggested.

i also would feel a "crash" the fourth week of ivig treatment. Dr.Druey at NIH did respond about this via email, saying that the half-life of ivig is actually 21 days, and for some, this exhausting feeling was more evident than others. So, after speaking with my internist's nurse and my ivig nurse, they discussed the alternative plan of bimonthly infusions, to which my internist approved. I just had my second of the two last week, on Thurs. Unfortunately, i have been in bed mon-wed. (the first three days i deal with headaches and of course the irritating feel of steroids, but the second three is bloating and more pain at the base of my skull). It seems that the solumedrol has worn off, i also had a different nurse this time, and my ivig infusion time was about 2.5 hours rather than the previous 4 hours. I have spoken with my original ivig nurse who agreed, we must run it slower, and possibly a low dose medrol pack might get me thru these uncomfortable symptoms i am having these past few days. And then, there's the other variable.....was it a bad batch? uggggghhh.

I defination have noticed that I go through a cycle with my IVIG. Each week is a little different. It almost seems like I am getting closer to an attack right before my next treatment. My doctors are checking for other problems such as lupus. Rita

I have been on the 2 week IVIG schedule now for 6 weeks. What a difference ! I still get tired & nap when I can, but I feel so much better ! I also felt extremely tired & close to an attack during the 4th week prior to infusion before the change. I also have a new allergist who is prescribing my IVIG infusions. He is very open to the new schedule.

It has been 3 months since I started infusions every two weeks, but have been on I. G. for a year. last month my Hematologist changed from Gammagard to Gamunex. and this is the first month since I started that I have not even had a minor episode, Next week I have a appt. with Dr. Mark Pecker and will post if he thinks it had anything to do with the change in Immune Globulin. or if it is to soon to tell. Ciro

bonjour, je recois des IVIG depuis 4 ans, il arrive assez régulièrement que je doive en recevoir plus tôt que prévus.sois dans la troisième semaine. l'idée de recevoir 1 gr/kg aux deux semaines pourrais être envisager.. merci, je vais en discuter avec mon médecin . Josée

Hello all I am starting a change in my infusions this week. Instead of 2 days back to back, I am going to once every 14 days. My problem has been fatigue and dizziness. I was without a single episode for 2 years on IVIG. Last December , the insurance mandated a brand change in the IVIG. I would strongluy suggest staying away from Gammaplex if you are already on an IVIG brand. I am back on the original IVIG but have had problems a few days a month. My doctor has been in contact with Dr. Druey on blood tests that we will track for a few months. They will draw blood before and after each infusion. Walt

Hi Walt, Sorry you are having problems. Today marks the two year point for IVIG for me. I am still doing two days back to back with the orginal brand. I am starting to notice more little things. Aches, bone pain, tiredness and vision changes. I am curently working full time and finishing up my MBA which I was part way through before I was diaginosed. I have one class from Jan to March 2013. Right now the IVIG is working its magic. I hope it continues,

Ritz Glad IVIG is working. I forgot to mention I have been having vision changes. Your post surprised me becauise I had asked the question about eye sight when we joined rareshare. No one reported such problems. My eye sight is blurred at times or both eyes seem to focus at different angles. It does not happen often but is a pain when I am on the computer or trying to do something with the hands. I had an optomolgist and opthamologist review my eyes and they found nothing to cause the vision problem. Hard to blame on CLS but it comes on during my fatigue periods. I will start the 14 day cycle of IVIG on Dec 2, I just had my last double dose last Mon/Tues. I'll post after a few weeks to let you all know how it works. The one main perk of IVIG for me and my family is that we all do not worry about critical problems anymore. Happy Thansgiving to everyone!!!!!!!! I remember a few years ago when CLS was referred to as the holiday killer. IVIG and Arturo have really helped this group and how we have come along. Walt

The 1 IVIG day every 14 days schedule is continuing to be a blessing. I'm not as "spacey" & fatigued as b4 & I'm very greatful !

I'm glad to hear the good news! We are all contributing to advance medical knowledge in our own way.

I definitely start feeling fatigue in the week leading up to my next IVIG treatment, almost like clockwork on the weekend preceding my treatments (which I get Thursdays and Fridays). I am very interested in how well it's working for those taking it every two weeks and look forward to hearing updates on progress.

I am also doing better on the 14 day cycle of IVIG. I have only had 2 infusions on this cycle so I will see in a couple more months. Walt

SCLS patients who feel that the beneficial effects of IVIG tend to wear out before 4 weeks have passed may wish to discuss other alternatives (to getting a half dose of IVIG every 2 weeks) with their doctors: *to increase the dose or the frequency of the dose.* After all, the recommended dose of 2 gr/kg/month is what has been proven to work for patients with several other illnesses -- but it is NOT a dosage or frequency that scientific experiments have determined is the right dose for patients with SCLS. We are all contributing to advance medical knowledge in our own way.

I am on 0.5 grams/kg every 3 weeks. The immunologists at King's College described it as a case of increasing until the symptoms are no longer seen. Seems to be working so far which may indicate that the larger doses are not required (in some cases at least). The jury is still out however and I would not conclude this yet as I have been free of symptoms since July.

I'll chime in. I've been having 4th week symptoms for a few months now. I'll talk to my Dr. About by-weekly treatments.

I'm still on the 2 week schedule .5 gram/kg. From Oct-Dec 2011 I had the procedure done @ outpatient due to insurance reasons.The biggest prob there was getting a different nurse every time. I am still on the same schedule, but back to the infusion therapy department where there are only 2 nurses who are more like sisters now ! I take tylenol & benadryl b4 treatment. I am down to a minor headache after treatment. I have, though, changed my lifestyle to put myself "first" & mellow out more than I have in the past. I have also experienced eye focusing & dried eye issues in the past 1 1/2 years. I thought it was due to the Intac Eye Insertions I needed, but maybe the SCLS is a factor !? I wish everyone a Blessed & Attack Free 2013 !

dawnfye I am interested in your problem with your eye focusing. I have been plagued by eye focusing and cross eyed type vision for the last 9 months. I had cataract surgery in the left eye last August. I have also been plagued by Keratoconus so i have considered Intac eye inserts to correct the cornea. My thought and guess is that my vision is a symptom of the CLS. I think that we all have pre-symptoms of the CLS leaks which is caused by X (obviously no idea). I believe the end result is a capillary leak. IVIG is definitely the treatment to prevent the leaks, but does not treat the "I call it the pre-leak stage". Arturo and I disagree about this phenomona because I do not believe that anyone has looked at pre-leak markers. Dr. Druey, as well as all of our Doctors , look for CLS leak markers, Albumin levels , hemoglobin levels,etc. My Doctor looked at my blood before and after these tired , pre-leak episodes, but nothing shows up. I also do not think we all have these pre-leaks. Or at least some may pass them off if not substantial. I sleep for the entire day when this happens to me. I usually wake up during the night and find it stopped. I feel crisp and clear at that point and it is liking turning a switch off. It is that sudden when it stops. With all that said, I have only dropped in blood pressure once while on IVIG. I know IVIG is helping. That one time, my BP dropped to 90/60. I am normally now 130/80. The single IVIG infusion every 14 days has made a big difference. I will stay with it. Walt PS If anyone is experiencing vision problems and/or fatigue/dizzyness days while on IVIG , please e-mail me. See profile for email. Thanks

Hello, This information about me may be useful to you. Diagnosed with SCLS in 1988 but without treatment by IVIG (only acupuncture) I started working on computer in the 1990s in order to access information on the Web about this rare disease. After a few hours spent in front of the screen, I realized that I had vision problems, especially the glare and headaches, while my sight was good. In fact, these were not not due to SCLS but was induced by a too long presence in front of the screen that asked too much a part of the brain causing symptoms similar to those of epilepsy. What is now known and it is necessary just to stop regularly, as this is recommended to anyone working on screen. Here the link of the document prepared by INSERM (Institut National de la Santé et de la Recherche Médicale/ National Institute of health and medical research in France) : GUIDE PRATIQUE DU TRAVAIL SUR ECRAN/ PRACTICAL WORK ON SCREEN) about it on page 15, in French. "www.rh.inserm.fr" "http://www.uvsq.fr/servlet/com.univ.collaboratif.utils.LectureFichiergw?ID_FICHIER=1262860922794&ID_FICHE=45795" I will translate this page in english this weekend . Maggy

I am on 14 day schedule with my IVIG and have been for two months. I still get some days that I stay in bed most of the day but I do not get the feeling that I am going to have a attack.I have been On IGG sinse Dec. of 2011 and, have had only had minor leaks. For the last two months I have not had any. I have also experienced a problem with eye fcusing for about a year and was thinking maybe it was from my book reading but, could be from the CLS.

I've been on the biweekly treatments for about 6 weeks now and its working much better than the monthly ones. No 4th week symptoms at all.

This has been interesting to follow. When I posted 4 months ago, I was feeling sick and very fatigued a few days prior to my IVIG treatment which I get every four weeks. However, not long after that I stopped experiencing the issue and now I more or less feel fine throughout the month. I'm probably a little more tired than usual leading up to the treatment, but definitely not the way I used to feel. In general, I do have occasional days of fatigue -- like last week when I slept all day on Tuesday -- but I find these are often related to over-extending myself, or if my fiancee has a cold, as if I'm fighting off the bug. I had read that IVIG sometimes takes as long as 8 months to take full effect...when things got better for me, it had been well over a year. I have no idea if there's a reason for feeling better, but I definitely feel better...maybe it takes time for your body to fully heal after being so sick. Maybe it's luck and next time around I'll feel lousy again. Who knows? It's one of the many mysteries of having a rare disease...

Based on what I've seen on this site individual symptoms, and reactions to treatment, vary widely. There seems to be a lot of experimentation to get a regimen that works.