Pushing time between IVIG

This week I decided to not get my IVIG on the 21st day and see if I can go out another week. I did not discuss this with my doctor, just decided to cancel my appointment that I had set for Sunday and reschedule it on the next Sunday. Trying to see if I can get 28 days betweek IVIG infusions. So far, at day 22, I feel good. No symptoms have appeared by missing my IVIG yesterday. Has anyone tried to push the time between infusions with success? I am sick of living my life around infusion dates. I counted ahead in my calendar and if i stay at 21 days my IVIG date falls on a Sunday when I am on vacation in Texas. So there is no way to get IVIG on my vacation so I decided I need to offset the date. Better to try now before I am out of town and unable to schedule an IVIG infusion if needed. What is the longest most people get between IVIG infusions? I guess i will know if I need to get the IVIG if I start to feel bad or have symptoms appear all the sudden. I hope this is not causing any damage but I feel that as long as I am not having any new symptoms that my body is not attacking my nerves and I should be fine pushing the limit. It would be nice to get the dosage amount down some day too. I currently get 40 grams every 21 days. Trying for every 28 days. I guess the next step is to have them reduce the amount to maybe 35 grams and see if I do ok.

Hi!

I just had my first of 3 days today since the original back in November. The dr. wanted me to set the time for the next set of infusions........and what with the holidays etc. I waited over 2 months. It was too long to wait..........the wooden feeling, tingles etc all returned.......not as bad as before I began but getting there. For me I think every 6 weeks will do it........certainly I will be much more careful about it.

So for you, see how far you can push it out, but the minute you feel any returning symptom, get the treatment. Good luck with this!

Jen

Hi-I get the IVIG infusion every four weeks, and a couple of months ago I had an issue with my insurance that delayed my treatment and due to the symptoms (numbness, tingling and pain in legs/arms)I was in bed for 24 hours. If all possible I try not to delay my treatment, unless it’s completely necessary.

But if you never delay or push out the days you will never know if you could go longer. I don't want to be stuck with every 21 days for the rest of my life. I was hoping some day to get to every 5 or 6 weeks. Much more managable. I guess I will just do the wait and see thing and if the symptoms do return I will get my infusion ASAP. But today is two days past my usual 21 days and still no new symptoms. Keep your fingers crossed for me.

Hi c, i am just starting my treatments so I can’t give you any info on the time. I hope you dont mind me asking you for some info. Does your dr want you to have IVIg every 3 weeks no matter how you feel? Or are you supposed to do it like you are doing…only go when your symptoms start returning? I have only had one treatment and having second today. I felt worse last night. Like my body was raging against the meds. I cant imagine feeling normal w no symptoms. My dr told me she wants me to have it 5 days in a row, then 2x a day, every 3 weeks for 6 months no matter how i feel. She says it’s possible that could put me into remission for years. Do you know anyone with cidp who has been in remission for years? I know my Crohns has done thar. Been in remission for years w no meds. Any advice or info you could offer would be appreciated.

It is different when you first start treatment. You need to get it more often and stick with the schedule given by your doctor. As for me, no, i did not tell my doctor I was trying to push my time in between infusions. I just decided to try mainly because I booked a trip to Texas in March, after purchasing the tickets i noticed that my infusion day fell right smack on the same Sunday that I will be in Texas...no way to get infusion in Texas. So I started to think about how to offset my infusions. Well, i know the insurance company will not let me have an infusion early unless ordered by my doctor. They won't order one early just to fit my schedule. So I decided to try and push one out now, while I have the ability to get right in if I start to feel symptoms. I can usually get in and scheduled within one day. I don't think he would mind as I did discuss with my nurse whom I see more than the doctor on my last visit that I want to try and get more time in between infusions. She said that it would be ok to try and see what happened. The first time i tried I felt symptoms so I waited a while and am trying again. So far, so good. Two days past infusion due date and still no symptoms. As for remission on IVIG. I was told that most patients who go the IVIG route for treatment don't usually go into remission for some reason. They told me the time between can increase and dosage needed can decrease but remission isn't that common. In order to try for remission he said I would probably need to go on one of the cancer drug treatments (which right now I am not willing to do). But he said never say never....there have been some reported cases just not as common. I am going to try and be one of the uncommon reported cases :-). As for symptoms. I had way more symptoms when first diagnosed. I had a numb foot first off that got worse over a few weeks. Then tingling in my feet started and then I started to have weak 'noodle' legs when walking, tripping sometimes on my feet for no apparent reason and then started to have burning sensation on my top of hands...started to drop things out of my hands all the sudden. Now, after about a year being on IVIG I really don't have any symptoms except sometimes at night on days when I have been too active I get a creepy-crawly sensation in my feet for about 20 minutes after laying down. It usually subsides as the night goes on and finally disappears. Sometimes my knees feel weak when going down stairs and I tire more easily then before CIDP. I am lucky, the IVIG is pretty much keeping me somewhat close to normal with just some annoying symptoms. But I do get anxiety and depression when symptoms flare up. I learned this month that if you are fighting a cold or flu your CIDP symptoms will flare up. Mine did and I was so scared I was getting worse and my IVIG was not working any more. My doctor assured me that it was probably the cold/flu I was fighting causing my immune system to attack again. Once my cold went away I would feel better...and i did. He said if my symptoms did not subside with the cold that I should get an extra IVIG as soon as my cold was gone. I never did get an extra IVIG as symptoms went away. Now I won't freak out next time. So my advice is to try IVIG and see how you do. Maybe you too will be lucky and go into remission or at least lose your symptoms and increase your time between needed infusions. Good Luck.

My experience is that even though we all suffer from cidp, our care needs to be tailored. I think its admirable that you want to experiment with your ivig. The only way to know is to experiment. My suggestion would be to make sure your doctor is aware of what you are doing and make sure the doctor is on board with this. I wish you well and hope that you are successful.

If you want to be empowered you could check out subcutaneous ig therapy. I am doing this and love it. If interested you can get additional information at www.hizentra.com

Again good luck

I plan on asking my neurologist about SQ in April when I have an appointment with him. I only get in to see him about every 6 months. I usually see his assistant nurse in between appointments and only would get to see him if I start to have problems. But I printed a bunch of info on SQ and fully intend to persue this therapy option. Can I ask what dose of IVIG were you on before going to SQ? I was told you need a very low dose in order to do SQ. I am currently on 40 grams every 21 days of 10% Gammunux. I am pushing to 28 days then if stable at 28 days will try to reduce to 35 grams of Gammunux. I currently weigh about 120 pounds. do you think I am at a low enough dose yet?

At hizentra’s site there is a calculator to help you figure out how much subq to use. It takes me 3 hours from start to finish. I get 50g per week. I usually start a movie, sit in the chair, and just relax. I have no ill side effects from subq.

I used to get 80g of gamunex split into 2 sessions. I dont think there is a magic limit to switch to subq. Personally I think most neuros dont know about it and dont understand it. Luckily for me, I found a neuro who was involved with clinical trials on the effectiveness of this therapy.

Hello Chirpy (or is it Birdy?),

Good question. I started about 2 years ago, getting IVIG every three weeks. My neurologist warned me very strongly not to let myself get too weak. On a couple of occasions, I started to get weak before even the three weeks were up. So, I called the clinic where I get the infusions, talked to a nurse, and moved the schedule up a few days. Afterwards, I talked to my doctor about this, to make sure that it was all right. He said: "Absolutely! There is no test to tell if you need IVIG, only how you feel. If you feel like you need it, schedule an appointment and come on in."

Then, as the months went on, I noticed that I was feeling fine after 3 weeks, so I did exactly what you are discussing, and moved it out to 4 weeks. I did this for a few rounds. At first I would start to get symptoms by the end of the fourth week, but eventually I got to the point that I was feeling pretty good, even after 4 weeks. So, I stretched it out to 5 weeks, and now I am up to six weeks. My doctor is fine with that. I still feel somewhat weak after 6 weeks, and the pain and numbness in my legs and feet are starting to get a little worse by that point, so I will not push it beyond that, for the time being, at least.

I should tell you that my doctor started me on Imuran shortly after I started the IVIG. I was on it for some months, then off again because it looked like my platelet count was getting too low, and now back on for a few months. The Imuran is supposed to eventually take the place of the IVIG. My dose is currently pretty low, 100 mg vs. an eventual target of 200 or 250 mg. So, I don't know if my improvement is due to the Imuran, or due to repeated doses of the IVIG, or just the miserable CIDP running its course. You might, or might not, be able to stretch out the interval as much as I have. Just be careful not to let yourself get too run down.

I completely understand why you want to do this. When you go every three weeks, your whole life seems to revolve around it. It is hard to schedule trips, or holidays, or anything. I keep a Excel file on my computer, with all my past treatments, and where I expect the next few upcoming treatments to be. I try to use that to plan vacations, family get-togethers, etc. Also, if there is something that I cannot move (like a wedding), I will try to schedule my IVIG treatments around it. I also try to schedule trips right after an IVIG, which is when I feel the strongest, and have least concern about a relapse.

Hope this is helpful. Good luck!
Bill Henstock

Thanks Bill. Very helpful for sure. This is still all very new to me. I have only been on IVIG since May of 2011. Still trying to grasp that this is for life!!! I have always been very healthy before I got the dredded H1N1 in November 2010 that changed my life for ever. Now I am trying to learn how to accept that this is NOT going away and that I need to learn to adjust my life to having CIDP. I never use to slow down and was always running and running to get everything I need done. Very hard to change but trying. Thanks again for your imput and info.

Chirpybirdy,

The Gamunex package circular states the serum half life of the product is about 35days. So, it stands to reason that its effective half-life should be at least that long. Realize that in some patients this serum half-life will vary by about 8 days meaning that on one extreme it might be 27 days for me and 43 days for you. Early in therapy I imagine most doctors want to make sure we get the most possible medicine to help us. Later with trial and error we might find less frequent dosing is satisfactory.

It is admirable for you to take some control over your therapy and its frequency. I did this with my neurologist's blessing in the summer and fall. I went from every 3 weeks to every 4 then eventually to every 6 weeks. But, by the end of the second 6 week cycle I seemed much weaker. Once I returned to every 4 weeks I feel fine. I had my IV today and told my home health nurse that I feel about as good as ever since the diagnosis. Strengthening my calf muscles and walking in my special rocker sole shoes at the gym has helped a lot.

My insurance actually charged me more (using the every 6 week schedule) since they have the provision to charge a$200 copay for the 6 week schedule and $100 for the 4 week schedule. So, my "out of pocket" copay for a year would have been more money for less medicine!

You are like me in not liking to sit for the IV but my insurance pays for most of the home health nurse charge. And, my 51 grams per day for 2 days only takes about 2 hours per day. I did ask my neurologist about taking all 102 grams each month at one time (one stick, one visit by the nurse) but he did not want to do that.

Blessings and best wishes!

mike

Hi Mike,

I guess I am lucky. I only need one stick per time. I get 40 grams each time in one dose. But it takes about 4 - 5 hours to run it all in. They don't run it above 120 rate for the infusion so I don't get a headache. I would rather sit a little bit longer in the center to get the infusion slowly then deal with a headach that could last for days. I worry about my veins giving out down the road. I do not want a port if possible. I think it would gross me out and I would obsess over it. I hate the feeling of the IV in my hand for just a few hours... I could not imagine having an IV port in that never goes away. I just hope my veins don't give out for a long, long, time. I alternate hands and areas where the IV was placed each time.

Thanks for your information.

Hi, I've pushed my IVIG treatment out. Before I got 33grams every 6 weeks (I'm 15 so my dose is quite low) and now I get the 33grams every 8 weeks. My doctor tried to stretch it out to every 12 weeks but I got really sick and after 9 and a half weeks I had to get the treatment. I was considering stretching it out again but they just but then they had to put the dose so they said I won't be able to go any longer without having the IVIG.

Hi all,

Great discussion. I've been on IVIG for about 6 years (have had CIDP for 21 years - plasmapheresis for the first 15) and am pretty soundly at 4 weeks. Whenever I have to travel on my infusion date, I either push my IVIG up or back by a week to 10 days. But, if I do a 5 week cycle, then the next is 3 weeks so that the average is 4 weeks. It works best for me. I tried to extend to 5 or 6 weeks about 3 years ago, but noticed more symptoms. I intend to try extending the time again, but will discuss with my neurologist first. I applaud all those who are trying to extend their treatment cycles - I believe the right amount of treatment is just enough. I've run into doctors who say "if it ain't broken, don't fix it", but I believe that we should always be willing to try something new.

I'm really interested in the discussion of Sub-Q IG. I was told by my home health nurse that this is only approved for Primary Immunodeficiency (PI) and not for CIDP. When I asked my neurologist, he said he wasn't familiar with it and didn't want me to try it. I would really like to have the flexibility to do my own treatments. Does anyone know if there is or may be an approval for CIDP? How can you get the insurance to pay for a treatment that isn't officially approved? Thanks for taking the time to post your stories - it really makes a difference.

tom

I agree you should try and push a little bit each time but with your neuro’s blessing. I am surprised you only see your Dr. every 6 months. I usually see mine every 4-6 weeks. I am a little skeptical about seeing an assistant with such an insidious disease. You don’t even have to extend a week, just try a few days and go from there. Personally, every time I pushed too far in between, I paid a price for it. I always have my IVIG before vacation also. It just makes sense to me because I am off schedule with eating, sleeping, etc.


thanks so much for the info and for sharing so much of your story. I had my second treatment today and maybe I am crazy but I already feel stronger and I think some of the feeling is returning. My balance still sucks but hey, tomorrow is only day 3. I also think the horrible burning in my hips & back is less and I took less pain meds today. Just that freedom from pain would allow me to function better and have some company. I am hoping that the IVIg will also keep my Crohns disease in check. Wow, to actually feel good, be able to drive again and leave the house on my own…I wouldn’t know what to do with myself. Teehee! Is this really possible? Can this medication really give me my life back or am I just dreaming that it’s working? Jo


chirpybirdy said:

It is different when you first start treatment. You need to get it more often and stick with the schedule given by your doctor. As for me, no, i did not tell my doctor I was trying to push my time in between infusions. I just decided to try mainly because I booked a trip to Texas in March, after purchasing the tickets i noticed that my infusion day fell right smack on the same Sunday that I will be in Texas…no way to get infusion in Texas. So I started to think about how to offset my infusions. Well, i know the insurance company will not let me have an infusion early unless ordered by my doctor. They won’t order one early just to fit my schedule. So I decided to try and push one out now, while I have the ability to get right in if I start to feel symptoms. I can usually get in and scheduled within one day. I don’t think he would mind as I did discuss with my nurse whom I see more than the doctor on my last visit that I want to try and get more time in between infusions. She said that it would be ok to try and see what happened. The first time i tried I felt symptoms so I waited a while and am trying again. So far, so good. Two days past infusion due date and still no symptoms. As for remission on IVIG. I was told that most patients who go the IVIG route for treatment don’t usually go into remission for some reason. They told me the time between can increase and dosage needed can decrease but remission isn’t that common. In order to try for remission he said I would probably need to go on one of the cancer drug treatments (which right now I am not willing to do). But he said never say never…there have been some reported cases just not as common. I am going to try and be one of the uncommon reported cases :-). As for symptoms. I had way more symptoms when first diagnosed. I had a numb foot first off that got worse over a few weeks. Then tingling in my feet started and then I started to have weak ‘noodle’ legs when walking, tripping sometimes on my feet for no apparent reason and then started to have burning sensation on my top of hands…started to drop things out of my hands all the sudden. Now, after about a year being on IVIG I really don’t have any symptoms except sometimes at night on days when I have been too active I get a creepy-crawly sensation in my feet for about 20 minutes after laying down. It usually subsides as the night goes on and finally disappears. Sometimes my knees feel weak when going down stairs and I tire more easily then before CIDP. I am lucky, the IVIG is pretty much keeping me somewhat close to normal with just some annoying symptoms. But I do get anxiety and depression when symptoms flare up. I learned this month that if you are fighting a cold or flu your CIDP symptoms will flare up. Mine did and I was so scared I was getting worse and my IVIG was not working any more. My doctor assured me that it was probably the cold/flu I was fighting causing my immune system to attack again. Once my cold went away I would feel better…and i did. He said if my symptoms did not subside with the cold that I should get an extra IVIG as soon as my cold was gone. I never did get an extra IVIG as symptoms went away. Now I won’t freak out next time. So my advice is to try IVIG and see how you do. Maybe you too will be lucky and go into remission or at least lose your symptoms and increase your time between needed infusions. Good Luck.

Hi Tom,

Just curious: why did you switch from plasmapheresis to IVIG? Did the plasmapheresis stop working? Or did your doctor think the IVIG would be more effective?
Bill

Tom V said:

Hi all,

Great discussion. I've been on IVIG for about 6 years (have had CIDP for 21 years - plasmapheresis for the first 15) and am pretty soundly at 4 weeks. Whenever I have to travel on my infusion date, I either push my IVIG up or back by a week to 10 days. But, if I do a 5 week cycle, then the next is 3 weeks so that the average is 4 weeks. It works best for me. I tried to extend to 5 or 6 weeks about 3 years ago, but noticed more symptoms. I intend to try extending the time again, but will discuss with my neurologist first. I applaud all those who are trying to extend their treatment cycles - I believe the right amount of treatment is just enough. I've run into doctors who say "if it ain't broken, don't fix it", but I believe that we should always be willing to try something new.

I'm really interested in the discussion of Sub-Q IG. I was told by my home health nurse that this is only approved for Primary Immunodeficiency (PI) and not for CIDP. When I asked my neurologist, he said he wasn't familiar with it and didn't want me to try it. I would really like to have the flexibility to do my own treatments. Does anyone know if there is or may be an approval for CIDP? How can you get the insurance to pay for a treatment that isn't officially approved? Thanks for taking the time to post your stories - it really makes a difference.

tom

Hi CB, my neice is a nurse and said that the port they put in for this is not a picc line and that people who have had it tell her they do not even remember it is there. It has very little instance of infection and can be left in place a long long time. If i get tired of being poked, I may request it. The only down side is that it’s a procedure to put in. If anyone wants, I can get more info. Jo



chirpybirdy said:

Hi Mike,

I guess I am lucky. I only need one stick per time. I get 40 grams each time in one dose. But it takes about 4 - 5 hours to run it all in. They don’t run it above 120 rate for the infusion so I don’t get a headache. I would rather sit a little bit longer in the center to get the infusion slowly then deal with a headach that could last for days. I worry about my veins giving out down the road. I do not want a port if possible. I think it would gross me out and I would obsess over it. I hate the feeling of the IV in my hand for just a few hours… I could not imagine having an IV port in that never goes away. I just hope my veins don’t give out for a long, long, time. I alternate hands and areas where the IV was placed each time.

Thanks for your information.

I am sad to say it is only three days past my usual infusion and I am leaving work to get an infusion. Well, at least I made it 3 more days! Maybe I can stay at 24 days instead of 28. My legs are feeling stiff and heavy today and some burning on my top of the hands. Symptoms for sure. Bummer.