ivig goal–to induce remission or longterm?
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November 17, 2011 at 7:41 pm
Seems like a lot of people are on ivig for long term, i’m curious, is the plan to be on it forever?
My dr. has said that one can become dependent on ivig-and she didnt want to see that happen. I was told the goal is either the ivig will modulate the imune system–halt the attack, or it won’t.
just wondering for how many people is this the case? Because it seems like a lot of people are on maintainance doses and are just going to be on it forever.
Maybe there are people out there who have done a few rounds of ivig, their immune system was altered, and we just don’t see them on here because they are doing well? -
November 17, 2011 at 8:37 pm
I hope I am interpreting what your dr said in the wrong way. If not then…WOW!
Warning! I am going to be very blunt. I might offend some.
Your dr is stupid! I would find a new one ASAP.
IVIG is not a controlled substance! IVIG is NOT addictive! NO ONE can become dependent on it. It is an immuno-modulator.
My daughter has been receiving it for almost 6 years. Does she depend on it help keep her CIDP at bay? Yes…because it fights off the CIDP so she can function like a normal kid. Is she addicted to it? Absolutely not!
I’m sorry but I’m so sick of dr’s telling people wrong information. A very quick Google search & 30 minutes of their time will give them correct info. I figure if I can find it, & I didn’t even go to college, then they should be able to as well.
Every single CIDP’ers goal is to go into remission. But I think everyone is aware that it might not happen & they are prepared to be on treatment long term.
CIDP is a chronic illness. It should be treated as such…much like asthma. You can control it & treat it, but it will may always be there. Sometimes it will bother you & sometimes you can go about your life & not think about it.
Or you could compare it to a high blood pressure. You take the medicine to control it…which is exactly what you do for CIDP.
I think it’s been said here that most people who are doing well don’t stay around.
Sorry for the rant…
Kelly
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November 18, 2011 at 9:35 am
no—thanx for that kelly–that’s what i want others opinions.
My dr did say that most people are on ivig forever but in my case the goal was to use it to modulate the immune system in the hopes the immune system would “reboot” more or less and stop producing the bad antibody.
MY second opinion was by Dr Dyck and he too said to try a 16 week ivig regiman in hopes to modulate the immune system.
I just finished the 16 week plan and am scheduled to see my dr in a month for an emg/ncv too determine if the cidp is still active or not.
I have felt better on the weeekly 16 week ivig regiman and have made some very minor gains–not 100%–but some.
so my thoughts are does one stay on ivig forever because its keeping you from getting worse or do you go onto the next treatment that may be the one to alter the immune system in the hopes to be treatment free one day? -
November 18, 2011 at 3:05 pm
Well, now I have more info.
Dr Dyck’s 16 week plan is to see if a patient improves & how much. I would think he would then decide, depending on improvement, if the patient is staying on IVIG or if he’s adding another treatment. I believe he chooses IVIG as the main treatment.
For us, Emily’s main treatment will remain IVIG. We tried steroids in 2006 & they made her worse. If IVIG ever stopped working we would then move on to plasmapheresis. Chemo drugs & STC would be very last resorts. In 2006 methotrexate was offered to us & I declined.
My personal feeling is, whatever the treatment, if you are responding to it & continue to improve that is the treatment you should stay on.
I know kids are different but Emily was a really difficult case. It took a massive amount of IVIG to get her CIDP under control but once we did she has done nothing but improve. We all believe remission is in her future. I can see her improvements &, as her mother, I can feel it. I know first hand that with IVIG remission is possible.
Kelly
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November 18, 2011 at 9:51 pm
Well said Kelly!
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November 18, 2011 at 10:06 pm
yes it sounds like Emily is doing well—you are a great advocate for her and I’m sure a big part of why she is doing so well today 🙂
Dr Dycks next recommendation was PE for me as well if the ivig did not work. I’m looking forward to the emg/nvc next month (never thought I’d say that–i hate the emg part) to see if the 16 week ivig stopped the active cidp.
With the slowly progressive type it is very hard to determine progress and regression on a daily basis, but looking back through my notes–i am better than i was 16 weeks ago and DEFINIYELY better than a year ago.But have not regained strength and balance in ankles and feet enough to run,jump, ski etc. A year ago I was just finishing prednisone , it made me worse too.
My neurologist is the one who set me up with Dr Dyck, I hope she continues to confer with him through my treatment, MN is too far to go every time i have an appt. He wrote on my report to either go back to him or my own Dr when finishing the 16 weeks.
Do you think where ivig is helping a little, keeping things from getting worse, that PE might work better? that was my thought. Dr Dyck mentioned an immunsuppressant if the latter didnt work, and rituxin was mentioned by my own dr.
Its great that we have these options to select from—just difficult knowing when to move from one to the next. -
November 19, 2011 at 9:44 am
Lori,
I have just started my loading dose of IVIG. I was told that just last week that I have CIDP. I would say that from what you have said in your last post that you are on the right track. My neurologist is a great one he taes time to listen to me and answers every question that I have. He has never told me once that the IVIG is addictive.. I do not know if I will be on IVIG long term but I have resolved myself to stay the course what ever the treatment is. All I want to do is be able to function. If not at a normal level then at least better than what I am now.
Kelly has some great answers because she has gone thru the fight with her daughter. Keep your chin up and eyes forward and if you are not getting the answers you want from your doctor then find one that will give you the right answers.
Good luck and if you need support we will be here’
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November 19, 2011 at 11:27 am
Hi,
Right on Kelly!
I have been on IVIG for over 17 years. For several years it was every 3 weeks. If I failed to do IVIG timely I rapidly – 3 to 4 days – regressed to great difficulty walking and any kind of stair, ever 3 inches, was out of the question. With regular IVIG I was NORMAL. Able to hike and run. I am now on 7 week cycle and doing quite well.
IVIG is not addictive. For many of us it is the difference between walking and riding in a wheel chair.
Again. RIGHT ON KELLY YOU NAILED IT.
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November 19, 2011 at 6:22 pm
yes gh-cidp it is a dependency to ivig not an addiction i am referring to.
Not ALL people become dependent on the ivig. My concern is if I settle for just “getting by” with the ivig—how will i ever know if one of the other treatments might be better and put me into remission.
Also I was very clear with my dr that I did not want to be on ivig forever. Its not simple like an inhalor one can use for ashma or a pill to pop for high BP–it is an inconvenience, requires time off from work,is extremely expensive, you never know whats in each batch that’s going into your body, you need needle sticks which eventually damage the veins!!—there is nothing simple about it—its okay for a try but i do not want to do it forever. I did the ivig every 12 weeks for a year and a half, every 6 weeks for 5 months, then every week for the past 16 weeks. Although I have not gotten worse I have not gotten SIGNIFICANTLY better on it. -
November 19, 2011 at 6:48 pm
I believe that each treatment regimen I had was for a period of time, followed by a time for evaluation of its success. Then decide whether to continue or try a different direction.
Information is our greatest ally. The more you can learn about both your body and CIDP, the better a patient you can be. The more you know, the more accountable your Dr. will be.
Dick S
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November 19, 2011 at 9:01 pm
My Plan is to get 100% rid of CIDP by tomorrow morning or sooner!
My doctor, however, seems to be pleased “I’m stabilized”. I’ve had IVIG same interval/dosage for the past 12 years. Plasmaphersis did not work for me – and no steroids for me.
My Plan is the Best Plan, but until something else comes along and convinces me different — I’m on an IVIG maintence plan. I had a ‘treat’ment yesterday and feel alot better already … I won’t try to define better because I can’t.
Yup, My Plan is the Best Plan.
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November 20, 2011 at 1:55 pm
yes there are a lot of people on ivig maintanance plans—and its great if it’s working and one has the patience to do it forever.
Maybe i would be seeing it differently if it was giving me huge improvements but its just keeping things the same.
I realize there is no one magic treatment that will work for everyone—but i just dont want to feel like im locked into this ivig regiman just because im not getting worse—-i really feel the need to find the treatment to alter the immune system for good—not just ivig to get by.
I believe being “ivig dependent” makes one eligible for sct—which means they consider it a failed treatment if you get worse after stopping the ivig.
I will try plasma exchange next because its the next least toxic thing to try—-even though it sounds like its a lot more work then the ivig even.
That is another treatment that i feel I should try–but again i do not want to do it longterm. I have read posts from people that have done this and are now treatment free.
That is my goal to keep trying treatments until i find one that works and i can be off them all one day—–i just feel the drs are so afraid to take risks—if we are doing just ok on ivig then they will keep us there–less risk to their practice. -
November 20, 2011 at 2:01 pm
[QUOTE=Dick S]I believe that each treatment regimen I had was for a period of time, followed by a time for evaluation of its success. Then decide whether to continue or try a different direction.
Information is our greatest ally. The more you can learn about both your body and CIDP, the better a patient you can be. The more you know, the more accountable your Dr. will be.
Dick S[/QUOTE]
that’s a great plan Dick —-to set a period of time with the Dr for each treatment. That is what I should have done in the beginning with the ivig and i never would have done this long on it (ahh..hindsight ). From now on Im setting definite timelines—. Im trying PE next and rituxin if that fails. -
November 20, 2011 at 5:08 pm
at least you’re working toward possibly being treatment free one day:)
I’m not feeling that’s going to happen to me with the ivig only.
I am not exactly sure of the plasma x/c and or rituxin plan –will find out on the 16th. We only had a brief phone conversation discussing it, i was at work, did not have a chance to get into a lot of detail.
After reading up on both, Im thinking maybe a few cycles of PE then rituxin after. There are some people on here who have gone into remission from the PE –but im not getting my hopes up because i know thats not the norm.
I have more faith in the rituxin, seems there’s been some good results with this.
If I was in worse shape, i would definitely apply for the sct. I do not think I am affected enough at this point to qualify. -
November 20, 2011 at 7:51 pm
We were hoping that we would be off of ivig by now as we have been on it for 2 1/2 years. We know what the cause of my daughter’s cidp is and research has shown that a know cause usually means a quicker remission, but…… We started sub-q 12 weeks ago and my daughter started to go backward about week 6 and we figured out she was being underdosed and it was increased. This disease is AWFUL. Not very many things compare. It is so rare as well. Our doctor says that 50% of adults with this go into remission. I think that sounds high. Prayer changes your odds! God is not into statics.
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November 20, 2011 at 8:38 pm
Pam – Don’t forget I read a few years ago that 70% of kids go into remission. Emily has been on IVIG for nearly 6 years & we’ve had more ups & downs than a ferris wheel. And look at her now! It is possible!
And I too believe that prayer certainly helps.
Kelly
PS, Did the info I gave you the last time we talked helped? You said Selah was being underdosed – I guess the dr agreed that she should get more Sub Q than she was?
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November 20, 2011 at 9:05 pm
my heart goes out to the two of you. Its frustrating as an adult dealing with cidp—i can’t even begin to imagine how difficult it must be to have to watch your child go through it. It sounds like you are both great advocates for your child—-70% is high odds—that with prayer—I’m betting on a full remission for both 🙂
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November 29, 2011 at 9:02 pm
im getting 100g of ivig every two weeks. this is barely enough to keep my cidp manageable. on weeks where there is a long weekend holiday and my treatment is delayed one day i get considerably weaker. are there any people on here getting larger doses that this ?
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November 29, 2011 at 10:28 pm
I was most recently getting 0.4 gm/per kg weekly for 16 weeks. Prior to that I was getting 2gm/kg evry 6 weeks. the 2 gm is considered a loading dose–
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November 30, 2011 at 8:04 am
I have been getting 300 mg of IVIG a month. I know it seems a lot but keeps my mean old CIDP somewhat at bay. I recently tried having four infusions a month (50mg each day) and I have relapsed. I’m 5’8″ and weigh 160 pounds so this amount is true for me.
REED350:
My neuro is about the only one in my city who gives higher doses because he’s seen them work. Maybe you need to see about increasing dose or frequency.It’s been hard to find nurses where I live who will do all day home infusions. I did have some who cranked the pump up to fast and too high because they wanted to leave (scarey-they’re long gone) and now have very competent nurses who tailor my infusion to my needs.
For me it makes CIDP behave–remission….no. Working well for me…yes.
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November 30, 2011 at 11:07 pm
do you mean 300 grams? if so- that is a high dose. I am 5’9″, weigh 140 lbs and was getting 130 gms over 2 days when getting the loading dose.
I found that when Dr Dyck switched me to weekly infusions–even though he decreased the dose from 2 gm/kg to 0.4gm/kg that i felt better than the higher dose at less frequent intervals. makes me wonder if frequency isn’t as important as amount. -
December 1, 2011 at 5:49 pm
I have 300 grams of IVIG a month. Recently tried going down to 200 grams a month but CIDP acted up.
Are you having 130 grams a week? Total monthly amount?
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December 1, 2011 at 6:55 pm
When Emily was 4-5 years old she was getting 300 grams a month of IVIG.
It worked to get her CIDP under control. She’s currently getting 20 grams of IVIG every 5 weeks. She’s 93’ish pounds.
Kelly
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December 1, 2011 at 8:30 pm
im 6’3″ 210 lbs .. so i guess 200g a month isnt out of the norm.
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December 2, 2011 at 8:05 pm
I get 25 g/week in two infusions of Gammagard per week, for a total of 100 g/month. I fully believe that frequency is part of the equation needed for success, not just the total dose/month. I have found my symptoms – particularly cramping and nerve pain – escalate right before I am due for my infusion. I also find I do not sleep at all on the nights before my infusions due to an increase in nerve pain and muscle spasms/cramping.
I have tried to push the window and lengthen the number of days in between infusions to no avail. Even a few days delay causes serious setbacks and symptoms. I plan to explore sub-Q but recognize I am too symptomatic to do so now.
I am not in remission, but much stronger than when first diagnosed. FYI, I developed another serious auto-immune disease 6 months after being diagnosed with CIDP, perhaps contributing to continued physical challenges.
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December 2, 2011 at 11:10 pm
no–when i was getting the 130 gms (loading dose) i was getting it every 12 weeks. When i started getting weekly infusions, i got 26 gms weekly. Been two weeks since i finished the 16 week ivig regiman, currently on nothing.
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December 2, 2011 at 11:16 pm
I receive 80g of Gamunex C every two weeks.
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December 2, 2011 at 11:19 pm
that sounds close to what i was getting at 0.4 gm /kg. weekly.
Maybe if you got the 50 gms weekly insted of 100 every two weeks it would help? this is the protocol Dr dyck from mayo recommended for me–he said getting the high dose every 12 weeks was keeping my body on a roller coaster—-will see, finished the 16 weeks of weekly infusions…now awaiting emg/ncv test to see if he was right. -
December 3, 2011 at 12:26 am
I get Privigen 10% 25 grams every ten days. Been getting this amount and frequency for almost the last 1 1/2 years. Tried to wean down to every two weeks, but became weak (mostly felt in my legs and thighs). My doctor says he needs to wean me down occasionally to prove to my insurance that my body gets worse after weaning down the IVIG.
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June 24, 2015 at 8:28 pm
After I watched this I went in search of some answers over the very topic of why people might need IVIG for so long. With this Dr., himself saying the CIDP was in our Bone Marrow, Spleen , Lymph Nodes, Thymus..I questioned the magic of IVIG’s ability to rid these extremely important parts of our bodies so quickly. In my research and in my opinion only because I am not a doctor..I found when researching other reasons that IVIG is used..some of our bodies have a defect in producing antibodies..thus rendering us susceptible to multiple autoimmune diseases. With that being said..once you stop the IVIG’s delivery of the good antibodies..our bodies will then again produce the defective ones, thus causing us to need the constant supply of the good antibodies. Again this is my research and my opinion!
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