I have been on IVIG for the last 13 years and It has worked ok but it doesn’t last very long and every time it starts to stop working my doctor just gives me a larger dose. I would really like a cure but there isn’t one so I would just like to try another treatment that would maybe work more efficiently. I cannot go on steriods because of my age (I’m 15 and it would mess with my development) but I’m open to try anything else.
Charlotte, God bless you! I’m sorry you have this yucky disease too! Have you heard of the program at Northwestern University for a Stem Cell Transplant? Check out this video on You Tube:
watch it with your family and see if it is something you might consider. I am going up the end of this month to see if I qualify for it. It is in the trial stages right now, but they have been doing them for over 6 years now with a lot of success. It's a big risk for sure, but many have come out of it with wonderful results. If you have further questions, just ask, I can offer a lot of other web sites to check out and videos are out there of others that have gone through it. The other thing is you may not quite be old enough yet, but even though some of the paperwork says you have to be over 18 and under 65, they have made exceptions - it's worth asking since you have had it so long already! God bless you!
Wendy
I live in Australia and I wouldn't be able to have the stem cell replacement. My mum also emailed them and they say I'm too young to have the treatment but I am considering it when I turn 18.
I don't know whether this would help anyone else, but for me aerobic activity every day for 20 min. makes a big difference in the pain level.
Yeeah I tried that and it worked for a while but I don't get a lot of pain mostly numbness like I can't feel my legs ans arms and like they can't hold my weight and if i did too aerobis it made them feel worse.
Charlotte, yes, keep it in mind for when you turn 18! I know I would and in the meantime keep an eye on those of us that are trying to get it done and going thru it. God bless you!
Wendy
Charlotte,
You are a brave young lady. My symptoms did not start until I was 61 and I have now been on IVIG for 18 mos.
My symptoms have been primarily numbness and weakness. Recently the first tingling in my feet and legs has begun.
You mention that your symptoms return soon after the meds. What are your symptoms? I wish I had an answer for all of us!
My symptons are mostly numbness and tingling in my legs and sometimes my arms. I get tired very easyly and have trouble climbing stairs or walking up a hill. Sometimes I get a sore back and legs but the pain comes and goes. The good thing is that I don't feel the pain anymore until a week or two before my treatment is due.
Charlotte the problem is IVIG wears off over time. How frequently are you getting your infusions? Either more frequent infusions or possible going to a subcutaneous infusion will help because the IG levels will be more steady (no trough) which is what likely causes your pain in the weeks before treatment.
http://www.cidpusa.org/subcutaneous%20IVIg.html
Take a look at the graphic halfway down. The 3 week trough on IVIG is lower than the trough on SCIG.
I get my treatment every 8 weeks, and it can't really be more often because I'm still in high school and then I'd miss too much. We talked about getting it at home, but my mum doesn't want me to get a permanent port and everytime they offer it she says no. My dosage is going up again soon though because of my symptoms but we don't know how much we can get because the blood bank needs to approve it ( I live in Australia) and I'm 15 and short (only 5 ft 1 and weigh 50kgs) so i might be at the limit they will allow me to have, but fingers crossed it gets approved!
You wouldn't necessarily need a port to get home infusions. There is a subcutaneous delivery that might work for you particularly if the dose isn't large (which it shouldn't be if it's once every 8 weeks). What is your dose and which drug are you on? Dose going up will help but more frequent infusions will help more I'd guess.
I'm on gammagloblian and getting 36grams in 600ml of liquid.
So that would be 75ml per week. It's doable but there are also higher concentration IG therapies available. If you were on a 10% solution you could potentially only need 45ml per week which is easy to do subcutaneously. Maybe an hour or so every week? You wouldn't need any help either. No nurses. Do it on your own schedule whenever you want. The infusion pumps are mobile so you can move around with ease compared to IV. I assume IV therapy takes a whole day?
Yeah about 7-8hrs and then the day after I feel quite sick. Another reason my mum doesn't want me to have it at home, during the treatment I get quite sick, pains down my arm, migraines and cold like symptoms and they last the few days after the treatment.
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.
this link looks like a virus
Wendy said:
Charlotte, God bless you! I'm sorry you have this yucky disease too! Have you heard of the program at Northwestern University for a Stem Cell Transplant? Check out this video on You Tube:
watch it with your family and see if it is something you might consider. I am going up the end of this month to see if I qualify for it. It is in the trial stages right now, but they have been doing them for over 6 years now with a lot of success. It's a big risk for sure, but many have come out of it with wonderful results. If you have further questions, just ask, I can offer a lot of other web sites to check out and videos are out there of others that have gone through it. The other thing is you may not quite be old enough yet, but even though some of the paperwork says you have to be over 18 and under 65, they have made exceptions - it's worth asking since you have had it so long already! God bless you!Wendy
Infusions sometimes defeat themselves after many years (like more than 7 or so). The B cells continue to build up to make place for the B cells the IVIG is working against. So, despite years of treatment, IVIG becomes less effective over the years and often requires a higher dose to be at the "same place" you were earlier.
Plasmaphresis, if this hasn't yet been done, can wash the blood and give someone a jump start with lagging treatment.
Unfortunately, you have to be 18 to even qualify for the Stem Cell Transplant trials.
Has anyone read about or taken fish oil for "our" disease? My dentist suggested it and my neurologist has no problems with me taking it. I understand it is best to take filtered fish oil to eliminate the mercury. Fish oil is supposed to be an excellent anti-inflammatory. Also, the same question for Metanx. It is an Rx drug that is essentially "folate" that is well absorbed. (a high % of people do not absorb OTC versions of folate). My co-pay is $90 a month so I left it at the pharmacy for now. Matanx is approved for treating diabetic neuropathy and my neurologist's partner has used it in a few of his CIDP patients with some good results. Some pts had no results.
Anyway, just looking for alternatives for this inflammatory neuropathy that we all "enjoy", ha!!. If you know anything let me know. mike
If anything I would be trying alpha lipoic acid if you want to take some supplements for CIDP. I have taken fish oil for about 7 years, but it is a good all around supplement, not taken for relation to CIDP.