I had my first IVIG treatment yesterday and will have another tomorrow. It was fine. It took 6 hours and I was given pain killers and antihistamines and apart from a few very slight feelings, it was great. I hope the next one will be the same Sarah

Sarah...are you hospitalized between treatments or do you go home? I will start IVIG after Christmas.

No. I just sat in the clinic of the immunologist for 6 hours having the infusion, then drove 4 hours home straight after wards then went to a 2 hour music rehearsal! I was prepared for anything and would not have been so adventurous had I not felt well but I was fine. I am having a further infusion tomorrow ( 4 hours driving each way again!) so it may be different- or the same. I am playing it by ear. The only small side effects were I felt slightly nauseous at one stage and a bit wheezy and tight in the chest and had strange muscle aches all over on my body on the way home. It was nothing I could not handle though. Also a patch of chronic dermatitis on the palm of my hand has flared up, and is itchy/sore and has blisters but again, nothing much. All the best for your IVIG. I hope you have as good an experience as I did:)

OK I had my second IVIG treatment yesterday and woke up in the night with a nasty headache and stiff neck which I still have despite taking Tylenol before, during and now plus antihistamines. I am happy to put up with this if it controls my symptoms though!

Did you say you got the first half one day and skipped a day then the second half on day 3? I was curious why you skipped a day. Do you have chronic symptoms? If so, what sort? Carole

You may want to check on home infusion. I am having my 21st IVIG treatment on Monday. The last 15 have been at home. Two - 5 hour treatments a month. They deliver the IVIG at home and have been on time every month. I keep the pump at home. Having a nurse for 5 hours at a time was different but it works out very well. It is easier to get 6 month approvals for home infusion instead of every month. Walt

Thanks Walt. The 8 hour drive there and back is exhausting in itself so home infusions would be wonderful. Goodness, you have had a lot of doses! How many doses did you have before you noticed a significant change or was it immediate? Carole, I am not sure how it is done normally, but I had 5 lots of 200 ml,(1000 ml total) taking about 5 and a half to 6 hours on day one, then skipped a day, then the same again on the third day, the same as Walt I think. I am a chronic leaker (you can read my profile which will tell you more). I weigh 65 kg if that helps. You can email me at sarah-foreman@hotmail.com if you want to chat Sarah

Sarah I was a chronic leaker and getting worse each week until my Doctor had the IVIG approved. It took the 3rd treatment to start seeing a difference. After the 4th, it was like before CLS. I can do 90% of what I used to. I see very little symptoms of CLS now. I worked on the IVIG flow rates until I have no side effects. The flow rates they started me on were typical. I am now at 30/60/120 ml/hr for the 1st 1 1/2 hours. Then we open to 220 ml/hr for the remainder. If I try a faster rate than 220, I get headaches and chest pains. I have not had any since the first few treatments. They can be quite painfull. Walt

Thank you Walt. I was too scared to say I have not had any improvement yet so you have allayed my concerns a lot. So are you talking about your third month of treatment or your third individual 5 hour treatment? I am getting worse rapidly too. It is very scary as you must have experienced too. I will let the immunologist know.Maybe a wee tweak of the flow rate will help stop my side effects too Very helpful information. It must be wonderful to be back to an almost normal life again.

Sarah The 4th month made the difference. The 3rd month reflected "something". I can understand your concern. One of our CLS patients in Minnesota showed no improvement after 2 months and treatment was stopped. I believe he is now back on. Hopefully he can add his comment to this topic. Never take NO for an answer when it comes to IVIG. In truth, we CLS patients get most of our information from each other, which makes sense. Try things, but do so being cautious. Arturo Can you give us an update on how many IVIG users we have now? Yaser Please give us your update on going to half dose IVIG. Is this still working for you?

I had my 1st IVIG treatment Nov 6 & 7 after 6 episodes in 2 1/2 months. My second IVIG is scheduled for this Monday & Tuesday. I had headaches & neck aches after the first treatment, but it was easily controlled with Tylenol. This week I feel like I weigh 600 pounds & even walking seems to be a big effort. My wheelchair has been my best friend ! I'm also extremely tired & sore. My allergist told me 50% of the IVIG is out of the body in 20-23 days. Maybe this is my body's way of telling me I'm due for a treatment ? Not sure. I will update after my next treatment !! Thanks everyone for posting ! I would be lost without this resource !! Take Care Everyone ! Dawn Fye Green Bay, WI

Walt Thanks for that information.That is really helpful. Sarah Dfye - all the best for next week's infusion:)

IAfter a year onm IVIG I have noticed by body has a monthly cylce. The week before my treatment I start to slow down. I guess I have been lucky. I am slightly allergic to IVIG. The get me steriods each treatment. They never go over 600 on the flow rate as I react. I do get migrane TIAs but now that I know what is going on I juct go to bed until it is over. Dawn where do you get your treatments? Rita

I just finished my first IVIG treatment!!!! I was given steroids, benedryl and tylenol from 9am to 10am and then at 10am they started the IVIG. I have a port and it worked great. It ran for five hours. My doctor started a slow start to minimize side effects. So thankful she did, because as of now no problems! I had blood pressure issues that were up and down and a little restless leg, but all in all great. I will repeat again tomorrow. Looking forward to feeling better. Merry Christmas to all! Walt and Arturo glad all is still going well!! Good reading your reports! Take care, Mary Jane

Mary Jane I am so glad you have the IVIG now. Life should be so much better for you. I think my biggest benefit of IVIG is that I don't have to worry about it anymore. Let us know how you do through the next few months. It may take a couple months to see the big improvement. Ritz Is your rate 600 ml/hr? I can't get over 230 because of chest pains and BP spikes and am curious. For my weight, 5 hours was normal each day. I had to change to Gammaplex and now it takes 3 days due to increased volume of IVIG. How long does your infusion take? Also what brand are you using? Walt

Hi Walt I will check on the brand I don't know what it is. My treatments take between 5 and 6 hours they start slow and then increase to keep side affects down. Rita

Congratulations on getting your first IVIG treatment. I have found that the side-effects have declined over time. The first few times I had a bit of a headache and felt a little odd afterward. I've had 4 so far, and now the primary thing I find is that on the week of the treatment I'm much more tired -- I usually get my infusions on Tuesday/Wednesday and the last two times I got them I come home and fall asleep in the early evening. It could very well be the benadryl they give me and be unrelated to the actual treatment. Other than that, all is good so far.

Bonjour, Depuis 3 ans et demi, je reçois des traitement d'IVIG, je n'ai pas d'effets secondaires. mon Médecin m'a prescrit de la predsinone la veille de mon traitement. 50 mg à 18h00 un au 50 mg à minuit et un autre de 50 mg à 6h le matin de mon traitement. arrivé à l'hopital je prend aussi 50 mg. de benadryl. je recois aussi mon traitement sur deux jours.. c'est vraiment merveilleux de voir qu'autant de gens puissent recevoir aussi ce traitement. avant ces deux derinères années, nous de parlions pas beaucoup d'IVIG.. Vive la médecine .... Joyeuses Fêtes du Québec Josée