For those who get regular IVIG infusions, how often do you get them?

Hi Bryan,
I get IVIG every 3 weeks for my CIDP. I use to be on IV Steroids and was switched to IVIG 5 months ago. Without boring you with a long story, suffice it to say that the “plan” is for me to stay on the 3 week treatment plan for awhile. Once I get to the point where I improve to where I don’t feel I need another treatment after 3 weeks, then the doctor will change me to a 4-6 week plan. I believe this would keep stretching out until maybe I reached a remission.

Personally, I do find that the IVIG helps me, but it’s a short term help. I call my CIDP life a “rollercoaster” ride. I have a few days that are really ‘up’ (good) and a few days that are really ‘down’ (bad)… and all the rest of the days are in between. I believe the IVIG allows me to have those good days (usually occurs for me 7-10 days after treatment). Without the IVIG I don’t believe I would have these good days. BTW… ‘good’ days for me are when my balance is significantly improved and I have no fear of falling. I can walk much better and faster (still with cane though). But I can’t seem to maintain the really good days for any more than 1-2 days every 3 weeks.
My ‘bad’ days however, seem to be fewer and less ‘bad’, as I keep taking the treatment. I want to improve on a 90 degree scale… but the reality for me is that my improvement goes on a 1 degree scale. Seems to take a LONG time and one wonders if they will ever get back to ‘normal’ or ‘healed’ again.

For me, after much time, I have decided to not linger on determining if/when I will be back to ‘normal’ again. It’s a waste of energy. Something to do, but doesn’t accomplish much! One thing I have found after living with CIDP for over 2 years and discussing with other patients… this disease affects everyone differently… so do the treatments. I sincerely hope the treatments will help you. I also hoped this answered your question.

Regards,

Tom

My doctor prescribed a 4 day loading dose of 2g/kg (so 0.5g/kg/day), then doses of 1g/kg every 4 weeks. My research shows this is a fairly typical protocol. Insurance approved every 3 weeks. My MD prefers every 4, but the approval at 3 weeks is nice because it gives me a day or two of wiggling room when scheduling. I’ve only had the loading dose and two maintenance doses, so I don’t feel qualified to answer how it’s working. But I can say I have side effects for 1-5 days after treatment, and the maintenance dose headaches are nothing compared to the loading dose severe migraines.

Yes, I agree with B…. the effects from the loading dose (migraines) were pretty bad. Never had a headache that bad in my life… but it did go away. It also takes me 4-5 days to get rid of the milder side effects from the maintenance doses. One of the biggest side effects for me is not being able to sleep the first night (mainly due to the solu-medrol that I get with the IG. I use to get mild headaches from the maintenance dose but that seems to have passed. It does do a little number on my GI system though…. but all in all the maintenance dose isn’t that bad. At least for me I believe it’s worth it as I don’t have the lowest of low days anymore (unless it’s my fault… like over exerting myself too much).

B – For me, it’s always good to hear from others who are dealing with this. For the longest time I felt a little all by myself and wondered if anyone else was going through this. This site really helped (and continues to help me). Thank you!

Bryan – yes I would definitely talk with your doctor about the side-effects of the prednisone. Especially talk about the reward vs. risk topic. I had the exact same talk with my doctor when I was on IV Steroids for a year. Initially I saw improvement, but then it simply tapered out. Prolong use of steroids made me irritable and to the point, that the treatment was worse than the disease. He agreed and changed my treatment.

I wish you well Bryan. This disease is bad enough to deal with. When there is real benefit in the treatment, it’s easier to go through the side-effects knowing there is some good that will come out of it. When that isn’t true anymore, then it’s time for a plan B. Good luck at the doctors tomorrow!

Tom

Oh yes… one more thing. I too had real cognitive issues when on the steroids. I worked as a computer system programmer for 30 years and to toot my own horn… I was really good at it. But I got to the point where I couldn’t think clearly and was making stupid mistakes that I never made before. It was worse because I managed a team of system programmers and it was very noticeable to all. I use to be able to multi-task with the best of them, but after fighting the disease for a year (and dealing with treatment side-effects)… I had to eventually retire much earlier than I wanted. I wasn’t doing my team nor my company any good… and I guess most importantly, I wasn’t doing myself any good either. My body needed to rest more. I became exhausted a lot and when I pushed myself I would be down for 2-3 days. Now that I no longer work, I am able to get the rest that I really need and I feel much better because of it. I concentrate on myself, rather than a large corporation! 🙂

Bryan F – I think one of the things insurance companies are looking for in order to approve IVIG is “tried and failed” treatments. Perhaps your issues with steroids will help demonstrate the medical necessity of IVIG. For what it’s worth, I was never on steroids — my neurologist wanted to avoid them because of the side effects.

Hey Brian,

I think I mentioned before that my treatment that started in early January was IVIG every 2 weeks but my spinal fluid showed the elevated protein levels. I am supposed to do the every 2 week infusions for 6 months before my first real evaluation, nerve conduction, strength tests, etc. I don’t notice too much difference after my infusions. I have had 6 so far. Only had a slight rash after my loading dose so no bad side effects for me. My mystery after all the research I have done is that I feel much better by being active versus rest, which seems to run contrary to what I have read about not overdoing it. Houston has a chapter meeting on Saturday and a physical therapist is the speaker so I will be curious to hear what they say as I have not initiated pt yet. I do the cidp exercises I found online but as I mentioned, I spend a lot of time working in the yard and spent 5 hours working outside today in a warm (high 80s) sunny day in Houston. My legs muscles do get sore and my nerve activity is from the knees down but the pain is low and very tolerable. Is it the IVIG? I hope so. I see my new neurologist this Wednesday and have a ton of questions for him but Tom is right in that everyone is different as to how this disease progresses and how they react to treatments. Best of luck in trying IVIG if routine treatments are in your future. Keep us up to date on your progress. Jeff

I get IVIG every 5 weeks now. I was at every 4 weeks for a long time and recently decided to try and push it out to 5 weeks. so far, so good. I have been at the 5 week maintenance dose for about 4 infusions and no problems in between treatment. My hopes are to try to push to 6 weeks in about 6 months to see what happens. I too tried prednisone for my first line of treatment. I was miserable and hated the side effects. I insisted I be taken off the crap and that was when I tried IVIG (6 years ago) and have been on IVIG ever since. I don’t have any symptoms of my CIDP as long as I stay on the IVIG. I go experience very mild symptoms from time-to-time, mostly related to stress. When i get stressed my buzzing feeling in my neck returns, my feet tingle and wobbly knees. But once my stress evens out the symptoms also go away.

Anytime Bryan. All of us who suffer from this type of neuropathy certainly find it helpful to learn from and sometimes lean on each other. I have found this forum to be very helpful to me in the past. Best of luck next week on your treatment. I truly hope it helps.

I get my IVIG every six weeks.

The comments here (and in other threads) about IVIG frighten me. I had my first round of 5 infusions in March — a very high dose because I have severe CIDP, with a lot of nerve damage in my legs, and was having near-constant stabbing nerve pains down my left leg in particular, so bad that my leg would buckle under me numerous times a day. After the first round of IVIG, the worst of that pain was gone. But I am still so weak and bone-deep fatigued that I can barely make it across a room with the help of a cane. If I try to stand up for more than three minutes, soon I’m trembling all over and drenched in sweat. I can’t do much of anything. I don’t have the strength to go anywhere. I’m now taking my second round of 5 high-dose infusions, and I’m concerned, after reading some of the comments here, that I’ll never regain my strength and get my life back. I’m a professional novelist, and I feel so awful all the time that I haven’t written a word in a year. Just getting to my office and my desktop computer is an ordeal. If this second round doesn’t help at least a little with the fatigue and weakness, I don’t know what I’ll do. My insurance isn’t going to approve a switch to PE. They take a hard line with expensive drugs.

Hi Sandra,
I certainly can understand your frustration and valid concerns. In fact, I believe many on this forum have experienced to some degree or another, similar feelings and worries. This disease can be SO relentless, unforgiving and let’s face it… down right SCARY!!! All I can do is share the knowledge of my own personal experience with IVIG and maybe it can bring some hope to you.

When I was finally diagnosed with CIDP (I say ‘finally’ because it took 6 months to get a diagnoses), I had my first round of IVIG treatment. At the time I could hardly walk (even with a cane) and physical exhaustion was part of my normal every day life. I had severe numbness in my hands/feet and my hands shook at times when I tried to use them. I hated it because I was a ‘normal’ human being just 6-7 months prior.

I was lucky, I saw marked improvement from my initial 3 day IVIG treatment. About 2 weeks after my treatment I was able to walk with my cane and felt as if I was back to ‘normal’. That feeling lasted for about 2 months. Then my CIDP came back with a vengeance. At times I could barely walk at all. Another round of IVIG did nothing for me and I was then put on IV Steroid treatments.

IV Steroid treatments are far less expensive and my insurance company didn’t require prior approval. I stayed on IV Steroids for one year. My life was like a rollercoaster. I would have a few days a month that I would feel at the top of the rollercoaster, like I was close to ‘normal’. And I would have a few days a month where I was at the bottom… couldn’t walk or use my hands well… so exhausted I couldn’t leave the house. Then all the rest of my days would be somewhere in between… either moving up the rollercoaster or moving down. At times it would be so frustrating, having close to the ‘normal’ feeling for a few days and then start going slowly downhill right after (and can’t do anything about it). I eventually, learned to embrace those good days and use my energy to enjoy them instead of cursing why I didn’t have more of them (though I still wish I did!).

After awhile, I really wasn’t benefiting from IV Steroids any more. I moved to Florida and my new neurologist started treating me with a different brand of IVIG. My initial “load dose” was for 4 days and it wasn’t pleasant. After the side effects were gone and about 10 days – 2 weeks after the treatment, I started noticing some marked improvement with my balance and dexterity.

I now have IVIG treatments every 3 weeks (have been on it for 5 months now) and I can graph my gradual improvement on about a 2 degree scale. This can be frustrating in itself as we all would like to see improvement on a 90 degree scale and reach the pinnacle as fast as we can. Unfortunately, for many with CIDP, that’s just not how improvement is obtained. My ‘bad’ days however, are not as ‘bad’… and that in itself is a major positive. I don’t know if I will ever get back to where ‘normal’. I sort of doubt it as I am 56 years old and feel like 86! 🙂 But I am grateful for my good days and even my average ones as I know how awful the ‘bad’ days can be.

All I can suggest to you, is to keep getting the IVIG treatments if the doctor recommends them. It is a positive sign that you have seen some improvement from the last treatment. You hopefully, should continue to see some improvement… but it may not be to the degree or within the timeframe you would like to see.

With regards to the extreme fatigue… my experience is that once I started listening to my body (instead of my head)… meaning ignoring my head saying I could do something, when my body was saying ‘no’ I can’t… the fatigue improved. This meant, I limited my activities and when I felt exhausted, I would take a day (or several days) to rest and let my body heal before continuing activities at a level that wouldn’t produce severe exhaustion. When I pushed myself to exhaustion (by listening to my brain instead of my body), I became very disabled for many days until I rested and allowed my body to heal. Admitting and redefining my limitations, was one of the hardest and best things I ever did.

I am so sorry for this post being so ‘winded’. I am not a writer and certainly find it difficult to convey my thoughts into the proper words. I sincerely wish the best for you, Sandra, and for improvement of your CIDP side-effects. You certainly are not alone in this, and this site is very good for support and information. If I can help in anyway, please let me know.

Best wishes… sincerely,

Tom

No, I don’t take immune suppressants. I have hypoglobulinemia and my body is unable to produce much in the way of gamma globulin antibodies in the first place. I can’t take high doses of steroid because I have osteopororis and auffered serious bone fractures in 2015. My sacrum is criss-crossed with seven enormous surgical screws/rods to hold it together, and I have fractures in my pelvic ring that never healed properly because of the condition of my bones (my surgeon compared my bones to soda crackers). Steroids would weaken my bones further, and so would so e other drugs. I had never fully recovered my ability to walk unassisted, and was still in constant pain, when the neuropathy hit me, The last two years of my life have been oure hell.

BTW, my neurologist and others in the same practice, all of them regarded as top doctors, never prescribe steroid therapy for neuropathy because they feel it’s too dangerous and has too many serious side effects. You know how rare CIDP is, but my neurologist is treating 5 cases, including mine, because other neuros refer them to him. He has one patient who has been off IVIG for almost a year now with no backsliding. He regained most of his function. But he’s much younger than I am, is otherwise healthy, and has a relatively mild case, while I’m older with other problems and had already lost 75-80% of the nerve function in my legs by the time I was diagnosed. Age matters a lot with this disease.

My posts woukd be a lot cleaner if I could figure out how to edit and make corrections. I see the “edit” choice on some posts but not others. My fingers don’t work very well anymore and I end up with a lot of typos. Sorry!

I have my IVIG every month. A series of four straight days once a month scheduled at this point to have 6 months.
Whoever may read this could they please respond if you experience any of these symptoms and have they gone away with IVIG infusion? The symptoms are: both feet are numb and I have sever pain in both knees. Severe twitching in both of my hamstrings that feel like a bad charlie horse is about to happen. I have sever pain in both of my hands and it is very difficult to pick things up, turn pages of the paper and typing this forum as well as hold a cup of coffee, I have spilt a few! ugh… I am also very dizzy/light headed or feel like I’m in a fog most of the time. Driving is very difficult because its hard to gauge how hard am I pressing on the break. I also have shortness of breath and pain in my chest. I am on Comiden ( spelling?) due to previous PE in January 2016. My Neuro said I had to go back on because IVIG thickens your blood and I am at a greater risk for blood clots? I also take 900 mg of Gabapetin twice daily for a seral nerve biopsy completed Dec. 20, 2016. I have had two series of treatments and there is no improvement thus far. In fact the chest pain and hand situation is worse daily. I was diagnosed January 8, 2017. I am exhausted at the end of my work day and on the weekends seems like all I want to do is sleep. I feel awful about this as I never want to do much with my wife and family. I went from being a very active guy to this…anyone ever stop all these meds and feel better?? I pray a lot of you will respond if you have similar experiences or am I just weird? Thank you to all take the time to respond!

Bryan ,
I have had two rounds of IVIG thus far. My first round was late February and my second was in late March. They are 4 weeks apart. My third round begins April 24-27. Up to six treatments. I do NOT take daily doses of prednisone. I get injected before each IVIG. I go to my Neuro on April 24 to be evaluated and to see if she feels IVIG is working ? At this point after two rounds it is not. I appreciate your response.
Thank You!
God Bless

Hi Buckeye55@,
First off… I don’t think you are “weird”. All of us that have CIDP or any peripheral neuropathy have strange symptoms that we never had before in our lives. Some of us can have similar symptoms or different one’s all together. Thus, as you probably know, no two people with CIDP have the exact same symptoms and most likely don’t respond to treatments in the exact same ways.

My symptoms are somewhat similar to yours. Before IVIG I had numbness from my knees down to my toes and elbow down to my fingertips to various degrees. Pricking/stabbing pains were the norm… along with the occasional feeling like someone had a pair of pliers and was squeezing as hard as they can on various parts of my arms/hands, legs/feet. Gabapentin has really helped me with the pain. Like you, I take 1800mg a day (600mg three times a day).

When all this first started, I was working as a technical Lead system programmer for a major insurance company. I had worked in this field for 30 years and to toot my own horn… I was really good at it. But when this disease hit me (and at first I didn’t know what was wrong with me)… I noticed the numbness and gait issues, but worse of all was that I felt major fatigue after only working for a few of hours. I became weaker and my hands started trembling. My thought process began to suffer. I couldn’t think straight and multi-task the way I use to. In fact, it was awful because I always prided myself in my multi-tasking abilities and helping my team to obtain their goals and professional growth. Eventually, I had to stop working. Not because I wanted to, but because I needed to. I wasn’t doing the job well and I certainly wasn’t much help to my team. I struggled with the decision to leave… to me… it was admitting I was no longer the same person I use to be. But leaving, ended up being the right decision for me… for I had to take care of myself now. I can’t take care of others if I don’t take care of myself.

This response is long enough so I won’t go into all my initial treatments the first year of diagnosis, but I will give you a brief description of what my treatment is now…

I now take IVIG every 3 weeks (one treatment). I initially started with a loading dose of 4 days in a row and then went to once every 3 weeks. I get an injection of Solu-Medrol prior to each infusion. For me, I noticed some improvement in my balance and reduced numbness in my feet and hands. I have been on the 3 week treatment for 6 months now. I feel I am making progress but it is SO S L O W ! ! ! ! I would say my improvement is about 1-2 percent a month and now am about 75% like you. I still have times that I regress. I attribute most of my bad times from me overdoing things and not getting the rest that I need (but not always). If I push myself too far one day, I pay the price for it by being ‘down’ for several days afterwards.

To be totally honest, I’m not sure if IVIG will ever get me back to 100%. I sort of have my doubts as I am in my upper 50’s and have been taking some form of treatments for 2 years now. But I can say that I stopped all treatments for about 2 months (because I moved out of state). I saw no major difference the first month and a half, but then I quickly starting going down hill to where it was extremely difficult to walk with my cane. But my current IVIG regiment got me back to the 75%. Morale to story… for me, if I stop IVIG I get worse. I “maintain” and slightly improve with IVIG. A year from now.. I hope I am much better, but if I’m still at 75% then I will at least have to be glad that I didn’t get worse.

One last thing, you talk about IVIG side-effects. For me, my first night after IVIG, I can’t sleep. I believe this is due to the Solu-Medrol. I feel wired and hungry all the time. The next day as the Solu-Medrol wears off, I begin to feel tired but still can’t sleep. Basically the first 48 hours after my treatments, I may sleep a total of 5-6 hours. I also have GI problems after IVIG. All in all, it takes me about 5 days to feel back to ‘my normal’ after IVIG. My CIDP life is sort of like a rollercoaster. Every 3 weeks (between treatments), I have 1-2 ‘high’ days where I feel really good (like 80-85% normal) and I have a few ‘low’ days where I can hardly walk at all or am just totally exhausted. The rest of the days I am either moving up to the ‘high’ days or moving down the rollercoaster toward the ‘low’ days. I usually start seeing improvements 7-10 days after my IVIG treatment. Some people see it sooner. For me it is usually closer to 10 days.

I am so sorry for this long winded response. I hope in some way it may have helped you to some small degree. I sincerely wish you the very best. If you have other questions/concerns please post back.

Tom

Tom,

Thank you all your experiences and the very informative response ! I greatly appreciate it. Do have or have you experienced sever knee joint pain ? Lower back pain? Plus a few days after IVIG I get what look like bites but itch so bad and then break open and bleed and then scan over which take several days to go away ? Once again thank you !
God Bless

Buckeye55,
I don’t have (nor had) joint pain or back pain. But I do get bite like bumps after IVIG. I went to a dermatologist and they took a biopsy. They told me the bumps were not from an allergic reaction to medication (but then again IVIG really isn’t medication)… but rather it looked to be a “contact dermatitis” or something like eczema. I found this a little questionable, because for me, it occurs after every IVIG treatment.

The dermatologist gave me a medicated cream called Clobetasol and it works great. I put it on the red spots as soon as I see them popping out and not only does it take care of the itch, the bumps are pretty much gone in just a few days.

I hope this helps and I wish you well.

Are the bumps generalized, or do they occur on parts of your arms touched by the infusion tube or the tape used to hold things in place? I’m seriously allergic to the adhesive on some medical tapes. After extensive back aurgery I developed bad “bumps” that turmed into bleeding, weeping blisters around every incision site (and there were lots of them). It was a mess, and very painful as well as itchy. The hospital nurses had to change my dressings every day, and my husband had to continue doing that for me for several weeks after I came home. I also know people who are allergic to some types of IV tubes (some are made of latex). My IVIG infusion nurse atsrted using paper tape when I developed a reaction to what he had been using, and the problem went away. If the reaction is all over your body, it may be an allergy to the medication, and you need to have it looked into. Have you told your neurologist about it? He/she definitely needs to know!

If the problem clears up after you finish the infusions, and reappears during the next cycle, that’s a pretty good clue that you’re reacting to something about the infusions.

Yes, they appear after IVIG and then Clear up. Thank you for your response ! God Bless

Tom,
Your response was very helpful! Thank You ! God Bless

My hubby has been diagnosed with MMN….. after 4 neurologists
We are at CIDP approved Dr.
he first tried 60mg on presidone for 6 weeks was horrible no sleep and thinking
Was altered…. stopped that with our latest Dr putting him on IVIG..
Dr. Has him on IVIG for past 4 months
150mg over 3 days outpatient then 150mg 3 days outpatient. Last 2 month 180mg over 3 days at home IVIG.
Every 4weeks they say. Now we have 3 more months of 180mg over 3 days…at home to see
If we can get him feeling stronger in hands and lower legs. First 2 months he felt stronger. So we are hoping this huge dose… highest available for next 3 months
Show better improvements. Is this a normal dose??

He gets a bag of water, and take a Benadryl and 500 mg Advil
He has had headaches so he drinks a ton of water now before and after for days…
He has had 3 gout attacks which he rarely gets so must be IVIG anyone else experience this side effect?? His arms are sore and swollen after 3rd day.he is a hard stick so
Nurse only uses his hands….. and one time all his joints were achey… so I see all have different side effects?
I pray they are on target with his diagnosis…. they did 4 months ago think CIPD
Then ALS…. now MMN.
He has trouble with steps and balance and left side lower leg and left hand 2-3 fingers and his strength is gone from his normal. Started PT but hard for him.
So maybe this IVIG is keeping him stable..
Thank you for any suggestions.. sorry for long post

I had two IVIG therapies and now insurance has revoked all further treatments due to Dr error in reporting. I saw significant changes after my second round. I am back to severe weakness in both legs. Left leg is much worse. I have severe pain in my left knee that feels like a burning/ tearing feeling when I stand and walk. Manual dexterity has gotten much worse. My Dr claims they are doing everything they can to resolve the issue. I never thought CIDP would get this bad! Does anyone else have these same symptoms ? I’m really afraid what the future holds if I can’t resume my IVIG therapies. I feel helpless and afraid. I look forward to any responses. Thank you to ALL and God Bless!

Thank you for your Reply BrianF

I pray you continue to see improvements!
God Bless