10% Ivig is not available in Australian Public Hospitals as yet as far as I know. I was getting treatment 2 weeks ago and the nurses were saying the hospital will be switching over to it soon. Don't know where you are but I am in Queensland
Hi, I'm in Perth and I'm not sure about the 10% IVIG, All I know is the red cross are reluctant to up my dose and we are having a bit of trouble getting them to approve some extra medicine.
Hi Charlotte,
I'm so very sorry you are having problems. Are you a public or private patient? I have CIDP, I should have said that first silly me, and I have been on Intragam for 3 years, I was diagnosed 2009. I think the change to the 10% dose should end up being Australia wide as all blood products come from the Red Cross. The nurses, who I know well after going there every fortnight, were all talking about it as they had been to a meeting about the new IVIG. It is coming in from the USA. They seemed to think that there would be less side effects with it but when I looked it up on the internet it said it really was the same as what we are already on only more concentrated. This says to me that there might be less bottles needed but won't necessarily make life any easier for us. I can't remember what it is called but bear with me I will find it again as I looked it up on the USA sites. Do you see a Neurologist or Immunologist? As I said I am a public patient but I am very lucky I see a very good Neurologist who treats me as a public patient, he has been so good to me. I know he organises my dosage from the Red Cross. Perhaps you could ask you Doctor about it or even the Red Cross? I will get back to you on the name of the new Ivig and I have a few suggestions you might like to try with your reaction to the infusions. I get the same problem but have managed to overcome it, I'll tell you how shortly just let me try and find the name of the Ivig and I'll write back to you. I had to go out shopping before so that is why I didn't get back to you straight away. Talk to you soon..
charlotte_1996 said:
Hi, I'm in Perth and I'm not sure about the 10% IVIG, All I know is the red cross are reluctant to up my dose and we are having a bit of trouble getting them to approve some extra medicine.
Hi Charlotte,
Found, it's called "GAMMAGUARD" here is the link http://www.gammagard.com/patients-and-families/ I don't know when it will be available but I do know it is coming into Queensland.
About your reactions. Do you pre-dose a couple of days before with Phenergan 25mgs x 1? I start taking them 2 days before and then on the morning of the infusion I take 1 tablet nice and early, this has helped me heaps. This will probably sound weird but I also start drinking lots of water at least 2 litres a day and then the morning of the infusion I make sure I have had at least 1 litre before I get there. This has all been trial and error with me as I have had really bad reactions from time to time. By doing these couple of really simple things it has made such a difference and I barely suffer any side-effects now except for occasional out of the blue ones. I don't know how your veins are coping but mine have been a problem from day 1. The one thing that has saved me each time is making sure that the water I drink is not chilled. There is another patient that has treatment the same day as me and we have become good friends. She also has trouble with her veins so she started doing the same as me, water at tap temperature and we haven't had any trouble since! Make sure you have plenty of water before during and after, it seems to help with the awful reactions. I have ended up in hospital about 4 times so sick and it has all been from the infusion. I hope you get this sorted out. Let me know how you are getting on. Good luck....
Hi, I'm a public patient but my neurologist is really good, he normally only treats private patients but he was interested by how rare CIDP is in children and has been treated me ever since. My doctor has applied to the red cross for more IVIG, we have also considered steriods but the side effects arn't very appealing, according to my doctor I could stop growing and gain weight and at 15 i dont really want this but we are still waiting to see whats happening.
trueblue06 said:
Hi Charlotte,
I'm so very sorry you are having problems. Are you a public or private patient? I have CIDP, I should have said that first silly me, and I have been on Intragam for 3 years, I was diagnosed 2009. I think the change to the 10% dose should end up being Australia wide as all blood products come from the Red Cross. The nurses, who I know well after going there every fortnight, were all talking about it as they had been to a meeting about the new IVIG. It is coming in from the USA. They seemed to think that there would be less side effects with it but when I looked it up on the internet it said it really was the same as what we are already on only more concentrated. This says to me that there might be less bottles needed but won't necessarily make life any easier for us. I can't remember what it is called but bear with me I will find it again as I looked it up on the USA sites. Do you see a Neurologist or Immunologist? As I said I am a public patient but I am very lucky I see a very good Neurologist who treats me as a public patient, he has been so good to me. I know he organises my dosage from the Red Cross. Perhaps you could ask you Doctor about it or even the Red Cross? I will get back to you on the name of the new Ivig and I have a few suggestions you might like to try with your reaction to the infusions. I get the same problem but have managed to overcome it, I'll tell you how shortly just let me try and find the name of the Ivig and I'll write back to you. I had to go out shopping before so that is why I didn't get back to you straight away. Talk to you soon..
charlotte_1996 said:Hi, I'm in Perth and I'm not sure about the 10% IVIG, All I know is the red cross are reluctant to up my dose and we are having a bit of trouble getting them to approve some extra medicine.
From my experience, Steriods work for me, but the side effects are nasty (as above, plus migraines and aches). So on the negative side are the effects, but as they are working I am staying on them and trying to reduce the dosage ASAP. The problem is that it takes a few weeks to see if I stop getting better as the dosage is reduced.... In theory they then put you on immuno-suppressants or other blockers, which mean you could catch anything going!! From my experiences, IVIG seems more effective in general than any other treatment (see http://gbs-cidpsurvey.blogspot.co.uk )
I think I can understand why your mom doesn't want you to get a port, but as Kris said, you don't need a port to have home infusions. I have home infusions every 4 weeks at night so I don't miss work, and though I have a port now, I did not have a port for the first 2 years of treatments. I know regulations are different in Austrailia, but you might also want to look at having home-care IVIG without a port. I agree that more frequent seems to be a better way to go given the half-life of the product. If you are only getting treatment every 8 weeks, the IG is completely gone before you get your next treatment.
Talk to your mom and doctor about why you'd like to check out other options. And maybe see if you can find out exactly why your mom doesn't want you to get a port. There might be a good reason, or she might just be afraid and need to talk to your doctor to clear things up.
Good luck!
Katie
Hey Kris, I thought I had read somewhere that CIDP patients couldn't take SubQ treatments. Not true?
Kris said:
It's possible those would go away as well if you went with subcutaneous infusions. Those reactions I believe are caused because of the concentration of IG in your bloodstream. If you did weekly infusions (just an hour on your own time. No missed school) you would never get the high concentrations you get immediately after an IV infusion. Migraines are the most common side effect of IVIG infusions and the incidence is lower on subcutaneous infusions. You do have to put up with local site reactions on your skin. Itchyness/swelling that sort of thing which is very common but it might be worth it and is at least worth talking to your doctors about.
I don't know for absolute certainty but it seems like some CIDP patients do receive IG therapy subcutaneously. I come at this more from a PIDD patient perspective where subcutaneous infusions are much more common.
Thanks for the info, for I just started IVIG two months ago and wondered what the heck was going on because I'm having the ups and downs too.
I am starting subQ IG today for my first time. I usually get it IV but I want more convenience and to be in charge more of when I receive my dose. So my doctor approved me for SQ form. I currently get 35 grams 10% solution every 21 to 28 days IV. I will let you know how it goes. I am hoping for the same outcome that I get with IV when I get the IG SubQ. I have to do it more often (once to twice weekly) but for shorter infusions and at home. So I can hook up my needle under my skin at home and watch TV or something for an hour instead of driving to the infusion center and spending time commuting, paying for parking and taking an average of 5 hours to complete my IV infusion. Now I can get it in the comfort of my own home and no more IV's only a smaller needle under my skin. Wish me luck.
Oh, yes, I do have CIDP and am starting SQ infusions of IG. Somehow I was approved even though it is not approved for CIDP. My doctor got my insurance company to approve it.
chirpybirdy said:
I am starting subQ IG today for my first time. I usually get it IV but I want more convenience and to be in charge more of when I receive my dose. So my doctor approved me for SQ form. I currently get 35 grams 10% solution every 21 to 28 days IV. I will let you know how it goes. I am hoping for the same outcome that I get with IV when I get the IG SubQ. I have to do it more often (once to twice weekly) but for shorter infusions and at home. So I can hook up my needle under my skin at home and watch TV or something for an hour instead of driving to the infusion center and spending time commuting, paying for parking and taking an average of 5 hours to complete my IV infusion. Now I can get it in the comfort of my own home and no more IV's only a smaller needle under my skin. Wish me luck.
Good luck Jane. I know you will do well. Please keep us posted as I think I am heading in that direction myself. Jo
I started SCIG yesterday. I don't know if I will like this. It is a bigger project than I thought it would be. I have to put three needles into my tummy or other site on my body. then I have to administer the IG through a large syringe and a pump. It took almost 3 hours for my dose yesterday. And I got redness and itching at all three sites. Then my tummy hurt for the rest of the night and I got a headache last night (not severe but enough of a headache that it is uncomfortable). I still have the headache today. I also feel very fatigued. I don't get any side effects when I get it IV. So I just don't know about doing this twice weekly. I can't imagine feeling this way every three days. At least when I do get it IV if i feel fatigued it is only once a month and not every three days. I will continue for this month and see if things improve but if not I am back to IV.
Charlotte,
You can ask your neuro to try alpha lipoic acid
The treatment dose 2 or 3 600mg pills per day. You have to wait 3 to 4 weeks to see the improvements.
I take it.
Pablo
Do you take the daily lipoic acid instead of IVIG or in conjunction with it? How frequent is your IVIG
dose? I’ve been on IVIG every 4 weeks for past 6 months but it seems to wear off if I stretch it out longer. Mike
I had a port inserted at the Mayo Clinic. That is one of the very first things they did. I had so much as far as treatments going in- their was really no other alternative. It was a life savor at first. Within just a few months it was removed and they just inserted the IV each time for treatments. Their are some risks with the ports, but I, personally, would rather my child do the port as there is also risks with the numerous IV insertions required. It really depends on what treatments and how often you are having them.
Katie said:
I think I can understand why your mom doesn't want you to get a port, but as Kris said, you don't need a port to have home infusions. I have home infusions every 4 weeks at night so I don't miss work, and though I have a port now, I did not have a port for the first 2 years of treatments. I know regulations are different in Austrailia, but you might also want to look at having home-care IVIG without a port. I agree that more frequent seems to be a better way to go given the half-life of the product. If you are only getting treatment every 8 weeks, the IG is completely gone before you get your next treatment.
Talk to your mom and doctor about why you'd like to check out other options. And maybe see if you can find out exactly why your mom doesn't want you to get a port. There might be a good reason, or she might just be afraid and need to talk to your doctor to clear things up.
Good luck!
Katie
I am back on IVIg instead of SCIg. I made the decision to return to IV because I found Sub Cutaneously more invasive of my time and it sounds weird but I did not like turning my kitchen into a hospital every two days. This made me feel sicker and made me feel like CIDP was invading my life more. So I now have my Ig given through the veins but I have switched from going to the Univeristy Infusion Center to having it done at home every three weeks. So far I am happy with home infusions. But the one thing I don't like is that I have to give up a Friday every 21 days because the home infusion group does not do weekends or holidays. I use to be able to get my infusion at the center early on Sunday morning so I did not have to give up a week day. But being at home is nice too. Either way, I guess IV is the route for me until I start to have problems with SQ. It is good to know that I can do SQ if I have to in the future. It did work on keeping my CIDP symptoms at bay. Maybe someday they can streamline the process or I won't need as much volumn of the drug to put under the skin. I had to put three pouches of 25 cc under the skin. Too much for me.
Hi Jane, This is Joann. I don’t know if you remember me. I have been struggling with the IV or SubQ question myself. I was getting IVIg @ home for two days every three weeks but I was getting such horrible side effects I was sick the entire three weeks. Then I would get another treatment and be sick for three weeks. i had absolutely no life whatsoever. I seem ok the day of my treatment but then the next day, I have: nausea, vomiting, horrible diarrhea, exhaustion, headache, fever, body aches. It really feels like I have the flu and YES, I have had a bloody nose also. I saw that somewhere and I think it was you who wrote it. So my nurse thought I was getting too much Ig and niw Iget one day. I’m not sick as long but still get pretty sick. I was thinking SubQ might be the answer for me biput reading your post has me wary. I thought it was two days a week butyou had to do it every two days? I am also hacingissues with my veins. Do you? I may have to get a port. CIPD SUCKS!!!i don’t want to have it anymore 
Hi Joann. I got the SQ Ig twice a week. I did it on Sunday and then again on Thursday. But it felt like I was always giving myself the infusion because I would only have about two sometimes three days off in between the infusions. But give it a try. Maybe it won't feel so invasive to you. Especially since the IVIg is giving you side effects. I never had any side effects from IVIG. I only went to SQ because I wanted to be more in control of when I got my infusions. I thought it would be very easy to slip a tiny needle under my skin and sit there while the fluid went under my skin. But I was not aware when I switched over that I would have to place three needles under the skin each time. I for some reason thought it would only be one needle like my sister who is a diabetic. I just felt it was more painful for me to place three needles under the skin and then I got redness and itching at the site of the infusion. The redness and itching did go away after a few hours. But some times I also got a hematoma at the sight that lasted for a week or so. But the good thing about SQ that would work for you is you are giving yourself less Ig at the time. You give yourself a smaller dose twice weekly instead of one big dose one a month. So for you, having side effects due to the amount of Ig you get when getting it IV might go away since you give yourself much lower doses more frequetnly. As for me, i did just fine with the higher dose IV and decided that I did not like having to stick myself so often and deal with infusions all the time. So since I had the option to go back to IV I did. So far doing just fine at 21 days. Trying this month to go 28 days to see how I do. But if I start to have problems with IV I now know that I am able to control my CIDP symptoms with SQ and will go back if needed. I don't want to have to do pred or the cancer drugs to control my CIDP. Did pred and HATED it. I was miserable! So for me I am lucky to have such a good response to Immunoglobin and I keep my fingers crossed that I keep having a good result. Also the SQ did get easier as I did it over the month because I got a routine down and streamlined my process. I also was able to do it late at night after my daughter went to bed and just sit there and enjoy dumb TV by myself for some quality down time. That was a plus in my eyes. My goal is to get my dose I need of Ig down lower so I would require much less fluid to be put under the skin. Then maybe switch from Gamunex which is only 10 % solution to one of the immunoglobin that is a 20% solution...Thus requiring much less fluid for under the skin and maybe only needing one needle vs. three. But my doctor did not want to switch me off Gamunux since I am doing so good on it. He said that switching the Ig could trigger me to have side effects and not do so well. So I didn't try the 20% sloution of IG. Maybe you could try it. I can't remember which IG is 20% but there is one for SQ that is 20% solution. Good luck. Oh, my nose bleeds have stopped thank goodness. I have no issues with my veins at the time so I don't need a port just yet. I would switch back to SQ before I would consider a port for me. I hate IV's and can't imagine having one in me 24/7.