You have lots of things going on! My now 14y/o was dx when he was 9. First things first, regarding your vacation, I might reconsider, especially until you get the l/p results. Are you flying? Maybe if there is still time, you can add insurance to your trip so that you can be refunded if need be. If it is cidp, you might want to be close to home. On the other hand, if it is cidp, you are on prednisone, so that may be helpful. Regarding the prednisone, in case the doc did not explain it to you, it is very important you take it as directed and DON’T stop it on your own. You have to be weaned off of it. If you are diabetic, steroids could pose additional problems. The problem is, you do not know if it is cidp, gbs or something else. For example, steroids do not work for gbs, as well, not all people w/cidp respond to steroids, some actually get worse. Your comments about feeling better after you rest could indicate gbs, in the begining, my son was PROGRESSIVELY weaker each day, for about 4-6 weeks before he was paralyzed in picu for days. On the other hand, a crucial thing to remember when dealing with cidp is that no one progresses or responds to treatment the same way that another does. CIDP has many variables in its presentation, dx and treatment.

The anxiety, depression is totally normal, not knowing what is wrong with you is frightening, not knowing what is ahead is frightening. Yoou have to be strong and persistant so that you can get to the answer of your problem as quickly and efficiently as you can. If it is cidp, there are many treatment options depending on what you respond to best. We get ivig, aka plasma. It has worked wonders for us, but requires us to be infused every two weeks with tweaks along the way. It is time consuming, expensive regarding what your insurance co pays out, deductables, copays etc. But it is relatively safe. There is plasmapheresis, a process that basically cleans your blood and gives it back to you (just a quick way of explaining it, it is involved as well) Of course there are steroids, which are not a long term solution. A variety of imunosuppressants are availabe, some have taken chemo drugs and had great results and some are currently involved in a trial that involves chemo to wipe out your immune system, harvesting of your own stem cells and then giving them back to you. The process like the others is much more involved, this is just a quick explanation to ease your fears that there are options out there to combat cidp.

I would be lying if I said it is easy and everything gets back to normal, but it does get better and along the way you learn to adapt and carry on. It takes time.

I’m so sorry to hear what you are doing through. I am in the same boat as you, just a little further along. Just diagnosed a week ago based on the spinal tap protiens being high, along with the EMG etc. Getting my first IVIg treatment next week. Hopefully your Dr will get you the correct diagnoses soon so you can get on the right treatment path for you. I will say I did get a spinal tap headache after the spinal tap and had to do a blood patch procedure as a result. Not fun, but was able to go to Mexico for a schedule trip about 10 days after the spinal tap as I was fine by then. I would say if you are feeling good and your doctor okay’s it you should go on you vacation and try to relax as that may help you with your anxiety and depression. My dr. offered me depression/anxiety medicine at my diagnosis visit but I declined at this point. I have been on that before and it did help me in the past and if I start feeling depression again will go back on. Keep us posted on your progress and hang in there.

Please see my response to your post on the Main Forum

Several opinions. seems the spinal in an important test to help determine diagnosis. There not fun but if it gives you a good answer then worth it. I had no pain afterwards. This stuff affects people differently and varied. IVIg saved me. My five day loading dose gave me a flu like symptom. Once the infusion center knew that they slowed the rate and all symptoms went away. I look forward to my infusion of 40 g every 28 days because it gives me relief The one thing I didn’t know about and was not expecting is how this stuff can affect you mentally. Talk with your Neurologist and let them help you. my issue is related to the side effects of steroids as a per medication for the IVIg. When I knew I was snappy to my wife and kids I ask for help and started very low and slow and deal OK now. Keep the faith.

I am also fairly new to the diagnosis of IVIG (July 2010). I had a lot of inconclusive tests (lumbar puncture, numerous nerve conduction studies, MRIs of brain and back and neck, 40+ blood tests) done by various doctors, so my current neuro recommended a biopsy of the sural nerve (lower leg) and also biopsy some muscle in the area. I was so frustrated after four years of going to various doctors (including another neuro) and they could not figure it out. I hated not knowing what I had. You also begin to question your own sanity after a while. After I got the pathology report from my neuro I actually felt relieved to have CIDP. There was no doubt left when the pathology report arrived. Before the diagnosis I read a lot of medical stuff that was really scary. I decided at that point that I would try to keep a positive attitude. I am lucky that I have a lot of support from friends and family as well as colleagues at work. Yes, I still work full-time even though some days it is difficult to walk. But I keep on going and do as much as I can. My advice–treasure each day and be an advocate for your own health. Being part of this forum is helpful in learning more about CIDP and also it allows you to ventilate—and that is therapeutic. It is comforting to hear from others with similar problems. Always remember that CIDP symptoms and effective treatments vary with each of us. For example: my feet are numb all of the time, even when I lay down. I wish you the best.

I know that it is time to go to bed!!! I proofread my response to your thread and I did not catch it. I was not diagnosed with IVIG, but CIDP. Ha!

how did the lumbar puncture go?

everyone responds differently, we had the headache about 6 hours after. the fact that you layed on your back all day is very helpful. are the steroids helping? Good luck, keep us posted

Chirpy Birdy,

I feel your pain. I had a vaccine injury in Nov 09 from the flu vaccine. Similar symptoms. I was worried about GBS/CIDP/MS, you name it. I never had the lumbar puncture. Lost my reflexes, had arm weakness, lost 25 lbs. You will find my story under the vaccine injuries. Never had any treatment because my symptoms were not considered severe. Had severe anxiety/depression/suicidal thoughts. It is part of the disease and the reaction. Your nerves have been affected. I have a 3 yr old and 5 yr old and was totally fine before the vaccine. I improved over the last year very slowly. Would have relapses of fatigue every 3 months or so. Have been working the whole time. I had to work at home for the first month because I felt so terrible. I have been able to have a “normal” life. I am not back to where I was before the vaccine, cannot exercise, etc. Right now, I have taken a downturn for the worse. I had some major stressors recently and have developed joint pain. I did not have joint pain before. So now, I am going to the dr trying to figure out if I have RA, lupus, fibro, etc. I think that you will get better and you will get back to a normal life, but it will take time. The best advice I can give you is to rest as much as possible, keep your stress level down, seek help from a therapist, and take antidepressants. I see a therapist weekly and I take Xanax, antianxiety med, but I react negatively to antidepressants, low blood pressure, etc. I would recommend getting some Xanax if you start to have panic attacks. One day at a time is all I can tell you. You have to have hope and focus on getting better. If you want to talk, Private message me and I can call you.

After my spinal tap, I was forced to lay on my back for about an hour and then was told to take it easy for the rest of the day. They gave me coffee and juice. I walked out of Baylor Hospital without problems and had very little headache afterward. The next day I got on an airplane bound for China—not on vacation but for my job. I had no problems related to the procedure while I was there for three weeks.

I got the spinal tap headache about noon on the day following my procedure, which was at 1 the day prior so it came on at 24 hours. Lated about 5 days even with the blood patch done on day 3. It was really bad so you will know it if you get it. Good news is it was much better when laying down. Sounds like you are doing well and hopefully in the clear of getting any headaches. Hope you enjoy Florida.

I had my LP on Thursday morning. I was fine until I got a severe headache on Monday morning–4 days afterwards. I didn’t do anything strenuous on any of the days prior to my headache. I drank coffee on Monday & drank a lot of fluids. This helped me.

Chirpybirdy:
CIDP is not a death sentence. Yes, it is a chronic neurological disease and is to be taken seriously. Yes, it has the potential to cause significant damage. However, there are treatments out there, and most people seem to find a treatment regimen that works to at least some extent to combat the progression and symptoms of CIDP.

Like you, I was an active person in my late 40’s when my left foot went numb, followed by my right foot. My hands were then affected. I also went to my GP who put me through a battery of tests, all of which were negative. Luckily, I then saw a great neurologist who diagnosed me quickly and accurately in April of 2010. We started aggressive IVIG treatment that month and I had an immediate positive response. Nearly a year later I am still on the IVIG. I have very little pain, a little numbness in my feet (worse on the left) some hand tremors and clumsiness, and a little fatigue (which could come from the Lyrica I take for pain). I live a full life. I work full-time as a trial attorney. I travel extensively for business and pleasure. I lift weights. I have no restrictions on my physical activities. I have acclimated myself to living with my CIDP, and other than my infusions and taking my medication for pain, have not had to modify my life one bit.

Please try to keep a positive attitude. I know the anxiety and depression that a CIDP diagnosis can cause. I’ve been there. Many live a near-normal life with CIDP. Please keep that in mind. Use this forum; I guarantee you someone (and often many) have been through everything you are and will be going through. Over the last year I have learned that fear is the greatest enemy I have, and most of what I feared never happened. I wish you all the best. Keep in touch.:)

Chirpbirdy your symptoms sound pretty mild thus far and it is very positive that you feel fine after a rest. Don’t scare yourself by imagining the worse. Hubby has fairly severe CIDP with motor symptoms and atrophy and drop foot and I have MS. We both live good lives, and are happy people. Attitude is critical to managing the disease. You’ll do fine –just do lots of reading and empower yourself with good accurate info. and trust your doctor. Good luck.
Laurel

You are not supposed to take ibuprofen with the Prednisone. I am taking 10 mg now and the nurse told me not to take anything else while I am on this, but you should check with them.

Chirpy, I am glad the lumbar puncture went well. Sounds like your doctor is very careful using the scope while doing it. Don’t overdo things for the next day or so–try to lay down as much as possible to keep flat until your body produces more spinal fluid to replace what was taken out. Don’t know the answer about the safest analgesic to take with prednisone. Take care.
Laurel

God bless you chirpybirdy. It has to be a tough thing to deal with especially when you have young children, we don’t. What has helped me to keep perspective is that my next door neighbor lady that was my age, (I’m 49)suffered and died from MS and a man at our former church died from ALS. In the beginning there was thoughts that maybe I had ALS but tests and some symptoms ruled that out. So I thank God frequently that I don’t have something worse. I also have people in my life that love me and care about me. I don’t know you but I care about you and the struggles that you’re enduring, your post really moved me. I shall continue praying for your situation. Wishing you and yours the best, Johnny3

Chirpybirdy:
My understanding is that the lumbar puncture results are just one piece of the diagnostic puzzle when it comes to CIDP. No one single test is definitive, although EMG/NCV results showing nerve demyelinzation comes close. You can have CIDP without necessarily having increased spinal fluid protein. On the other hand, if you do indeed have the increased spinal fluid protein, that tends to confirm the CIDP diagnosis.

Under no circumstances should you ignore your symptoms and just hope they go away! You are exhibiting abnormal neurological symptoms which need to be evaluated and treated NOW. Keep in mind that the sooner you commence treatment for whatever condition you have — especially if it is indeed CIDP — the better off you will be. I went through denial to some extent when I was first diagnosed, and it is common. But you still need to take care of yourself, for your sake and the sake of your family.

I agree with goodney in the part about there not being just one piece of the puzzle. My case was GBS, although it took them 3 days for a final confirmation. I had tingling of the fingers and hands the whole day prior, and passed it off as carpel tunnel of the wrist, although I was off my feed that day. The following morning at 4am I stood up from the bed and the nerves that tell my knees how to work were already demylinated, so I ended up on the floor, with no use of my legs. The rest of my body didn’t feel all that bad at the time, however, it didn’t take long from the time the wife took me to emergency at 5:30 am, that the rest of me became immoble. No two people come down with it or recover from it the same way, that is for GBS. I talked with a GBS’er ten years out at the hospital, ( he was in for a mild stroke ),and for him, it took 3 weeks till onset, and his made it up to his waist, whereas mine went all the way up to the brain.
Good luck to you.

You ARE NOT obssessing. Those would be the side affects of the prednisone, regarding the sleep issues. You probably will be getting really crabby, aka as roid rage, you may start getting acne and your face will appear round, as well as weight gain. Regarding the other issues you mention, it is hard to distinguish if those are cidp symptoms or, the steroids. Some people actually worsen with the steroids regarding the cidp symptoms and the steroids are counterproductive to this group. Others respond wonderfully to them and the inflamation / pain is knocked out. You will have to discuss with your doc.

Good luck with appointment! Perhaps discuss getting the steroids in pulse doses–seem to be less side effects that way. Let us know how things go.
Laurel

Chirpy bird,
Whatever you do , DO NOT TAKE YOURSELF OFF OF THE STEROIDS, it has to be done properly, slowly, you have to be weaqned off of them. Your doc will help you. Let us know your results. In an earlier post you said you hope it is not cidp, just so you know, if it is, it is not a death sentence AND there are treatments. The people here will help you if you want the help. Good luck today

I came down with a very severe case of CIDP back in 2002 & was inpatient at Mayo when it was decided to finally try steroids on me. I didn’t do the oral, instead they started me out with 1,000 mg of solumedrol for 5 days straight, whic is prednisolone, but still steroids. Before they even began, they sent a shrink to talk to me about what I would be feeling on the steroids. He warned me about feeling very agitated, extremely talkative, nervous, difficulty sleeping, even suicidal thoughts. 40 mg a day is a high dose to be given without these warnings. At this point, I believe your biggest problem is the steroids. If you get a diagnosis of CIDP I do hope your neuro will try IVIG instead of steroids, or at least put you on steroid infusions (solumedrol.)

Hi Chirpy bird,
Hey, I am just a stupid housewife and I said the same thing as her it’s not a death sentence. Our csf was 65. Typically the first # is what they go by. Other numbers are usually checked, for instance we had one white cell which is normal. Each level is indicative for different diseases. Aout the nerve biopsy, not sure what the statistics are, some people have no trouble others have problems that you describe. However, I have not read that the results could be contradictory re a cidp dx. Either the onion bulbing is present or its not. Since your csf came back high, you really don’t have any reason to do it as you decided. Furthermore, when you get the ivig, any benefits you get from it would proove its eficacy and solidify the dx with the response of the ivig. If you can get your mind wrapped around the idea that you have this, there is a medicine and you can go on, you will be all the better. Just be patient and know that it might take some trial and error to figure out what plan works best for you. Also expect some bumps along the way and know that people here will help and listen. I am kind of at a bump now myself, well actually a frealing ditch, but I’ll get myself out somehow! Good luck. BTW, I think you wrote she is going to get you off the steroids in a week, I am not sure that a week is enough time to properly wean off of 40mg a day, she is the doc, but it would not hurt for you to google and research it.

Chirpybirdy:
Good call on the sural nerve biopsy. My neuro at Weill Cornell in New York City tells me he rarely orders the biopsy anymore, and only when there is a real question as to whether the person has CIDP. The skin biopsy sounds like a much better bet. Make sure you get on the cancellation list for your neuro at the University of MN. Even if you get on the cancellation list, keep in contact with them. You can’t depend on them to contact you when there is a cancellation, so keep calling at least once a week and talk to the staff about any potential openings in the doctor’s schedule. Get to know the staff a little — ask if there is a particular staffer you should contact about cancellations — be very nice to them, and they will may try to squeeze you in. I even had a staffer take pity on me and talk to the doctor to get me in at an odd time in the morning. Keep your chin up; I’m sure you will feel much better once you’re off the steroids and the IVIG does its thing.

CBirdy ~ The literature says the earlier you are diagnosed and get appropriate treatment the greater your chances of recovery. After several years of being misdiagnosed and going to four Neuros I ended up in the hospital. One evening a nurse came in and asked me if she could look at my chart ~ well, yeah, I said. It took her less than a minute to say “hmm, looks like GBS, I’m going to put a note in your chart…..next day my doc (a GP) looks at it and says “I think that’s it!” After too long, I finally get to a neuro again and he sends me to another neuro who specializes in peripheral neuropathies and yup its CIDP, and recommends IVIG. Meanwhile back at the ranch my neuro Rx’s me to plasmaphersis(!) which did not work so, totally bummed out I managed for a number of years and finally asked about IVIG ~ OK and WOW – did that ever work for me. I refused corticosteroids/predisone whatever they call it (long story). I think back and wish they had 1) diagnosed me sooner (like one-minute) and 2) got me into IVIG (but didn’t). Consider yourself fortunate for an early diagnosis and (while I won’t do steroids they are certainly a part of a treatment plan that others write about) and ask about IVIG. Not every one responds the same but the statistics lean heavily in the IVIG direction. As you have probably noticed there are lots of opinions about what to take, how much, when and all that. The bottom line for me was to learn as much as possible, read everything, ask questions, take notes, stay as positive as possible, and [U]do not give up[/U]. It’s a journey, it can be lonely, it can be scary, confusing, have its ups and downs, but it sounds like you are getting good care. My best wishes to you.

Chirpy birdy,

The insomnia is a result of the prednisone. I was on a short low dose course and as soon as I started tapering off, the sleep came back better. Problem is that the pain is ramping up again. I felt fatigued and a bit weird, like the blood was drained out of my face. There are bad side effects, but you have to weigh those with the benefits of it. Good luck with everything. You are on the right path with the IVIG.

Jessica

well, on the positive side, stopping the prednisone is working for you. on the more positive side, if you have your doc document properly your adverse reaction to steroids such as the normal side affects associated with them and as well, most importantly, YOUR INCREASED cidp symptoms and joint pain and the other things you describe you should have ammo for the insurance company to not demand you do steroids as you are a subset that gets worse with steroids. This along with your positive result w/your csf elevation and your clinical presentation should be enough to approve ivig

jessica,
never before have you mentioned an improvement as profoundly as you did now. just a stupid mom (yes i know i am having self esteem issues) but…you are now saying that once you stopped or tapered the steroids, the pain came back. so, oif it were gbs, steroids would not help. so if it is not ra (idon’t think steroids help ms, maybe lupsu) it might be reasonalbe to re-explore that it might be cidp not gbs as your signature indicates? Actually, since reading all of your posts, these months, to me, this is the info that stood out most to me regarding finding out what your actual dx is

Thanks Dawn. I have not gone to the neuros since last July. (Dr. Driss at NW, works with Dr. Burt on SCT). I do not have muscle weakness and my nerve problems have gotten better except the autonomic issues go up and down. I don’t think that I have CIDP, but you never know. All of the neuros said that all of my tests were normal, including the EMG/NCV’s (3 or 4). My MRI’s were normal so I don’t think I am looking at MS. I am still on the dx of fibro/CFS, possible lupus/RA, some other arthritic condition going on. My mom has very disfigured fingers so that is why I am worried about RA, BUT I test negative for the RA factor. The only slightly elevated tests are the ANA and sed rate and even the sed rate went back down. I am in some bizarre category of vaccine injuries. Very frustrating when all of your tests are normal, but you are fatigued, nauseous and in pain all the time. I am still searching for answers…..I am seriously considering going to Miami.

Hi Chirpy,
I feel your pain as a young mom, I’m 35, with 2 young girls, 5 and 3. It has been a tough road for me because of the lack of treatment due to being misdiagnosed. I am so happy that you were diagnosed at an early stage. This greatly increases your chances of living a normal life. Yes, it is a very scary thing to hear. Especially when there is so little information on it and so few doctors who specialize it. You will find that one of your greatest resources will be this forum. In here, you will find new treatments that you can bring up to your doctors, you will also find alternative treatments that have worked for others so that you can decide what you are comfortable with and bring things to your doctor that he/she may not be current on.
I agree with your decision on opting out of the sural nerve biopsy. I had it, it was inconclusive and am now living with permanent foot pain and an uncomfortable feeling that can’t be described. I walked around with this disease for over 8 years before it was diagnosed. The pain, tingling, and numbness kept getting worse so a neurologist went ahead with a NCV and EMG and noticed the severe lack of conductivity between the nerves. I followed up with more NCV’s and EMG’s for the next few years and the demylination was clear as day! I have been receiving IVIG treatments for almost a year and a half and can say that the IVIG has been a Godsend! I didn’t react well to the prednisone at all! I became so mean and moody! And this was before I had kids! I don’t know how my husband stayed married to me! I was just awful, and that was on just 10 mg of prednisone. They wanted me on 100 mg! I said “no way”!
Although IVIG sounds scary, it really is the only thing that has curved the demylination of the nerves. Since there is still no cure for this disease, the trick is to stay ahead of the demylination. The side effects of the IVIG can be painful, but the loading dose is done in the hospital so that you are monitored around the clock. You can expect to get migraines, back pain, nausea and then some. Planning ahead is key! Ask your doctor to have the orders ready for pain medication (tylenol is a joke for this), you will need something strong, Imitrex for migraines, and something for the nausea. Also, prevention is the best medicine so insist on getting at least 1 full liter of IV Saline and stay fully hydrated. Hydration will lesson the side effects of the IVIG.
It is tough explaining this to your kids. I had a very hard time. How much information is too much information??? I just realized that the sicker I got, the more honest I had to be, no matter how young they were and are. They saw a mom that went from working full time, studying part time and still being extremely involved in their lives go to a mom that was spending 3 days at a time in bed and when I was awake, I was exhausted, in pain, walking with a cane and in and out of the hospital. It scared them. I didn’t realize how terrified they were every time I would go to the hospital because I would leave for 5 days, come back with bruises from collapsed veins and spend another 2 weeks in bed vomiting and suffering from severe pain and migraines. Just last week I went to the hospital and I took my video camera with me. I filmed part of my stay and treatment and explained it. I just showed it to my 5 year old today and she told me that she is no longer as scared as she was before about the hospital. She was able to see that it was a normal building where mommy is taken care of 24/7. This really put her at ease, which puts me at ease.
This disease is a such a sneaky little bastard!!! It affects everyone in a different way. Take from this forum what works for you. And when you feel like crying, cry with us. That is what we are here for. I remember when I was first diagnosed, I would post my feelings here and it was brought to my attention, thanks to this forum, that I was going through the classic symptoms of denial. I also mourned myself here. I learned how to say goodbye to the person I was pre illness and accept that this disease is bigger than me, so I stopped fighting my new limitations. There are new limitations that we have all had to get accustomed to. That is one of the most hardest things to do. But this is a great support group. Don’t ever feel like you are whining, feeling sorry for yourself (because you will, and who wouldn’t). None of the emotions that you are going to experience are emotions that we haven’t all gone through. We are here for you. Welcome to the forum family. I wish it was under happier conditions, but it is a good thing to know that there are people just like you, out there, sharing your world and experiences.
Be well.

Just a footnote; I had 44 IVIG infuions back in 2002, & had no side effects whatsoever. No headaches, no nausea, nothing, & it was poured into me in 2 hr. each time. There are many people out there with CIDP who get monthly IVIG & are basically asymtematic, one would never know there is something wrong with them. But they don’t come to the forum, as they are too busy leading their lives. I pray you will be one of those people, God bless…

I am one of those very fortunate individuals who are afflicted with CIDP and yet am able to live basically a normal life. I do have pain and numbness in my legs and feet and sometimes in my arms and hands, and my hands certainly aren’t as reliable as they used to be (tremors and clumsiness), and I do suffer intermittent bouts of fatigue, but none of those things stops me. I am certain there are those really lucky ones who have no symptoms — and God bless them. For the rest of us, there is living as best we can in spite of our symptoms (Pam being a wonderful example). I encourage all — no matter the status of their CIDP — to continue to participate in this forum if at all possible. I especially welcome the encouragement and hope I am provided by those participants who are really successfully facing down the challenges of this disease. In my book, that is true heroism.

Chirpybirdy:
I have never been on Prednisone for my CIDP, but it sounds like the weird feeling you had this weekend, and perhaps also the emotional issues, could be related to you coming off the steroids. It could also be the stress of dealing with what you are going through, or a combination.

Having your infusion at an infusion center should be fine. I have never felt any discomfort from the IG going into my arm. At times I have felt a cool sensation along the course of my vein, but that’s all. If you get a good stick, you may be surprised at how painless the actual procedure is.

You should hydrate as much as possible before, during, and after your infusion. Initially, it helps get your veins nice and fat. It also helps with side effects during and after the infusion. The IG itself is extremely sticky. A lot of people pre-medicate. I take tylenol and benedryl to help with side effects.

We all react differently to the CIDP and the IG used to treat it. No two people are exactly the same. Once you get a little experience with the infusion process, you will be able to anticipate how you tolerate the treatment and will be better at planning around it. Don’t overextend yourself.

Please be patient with your husband. He is also stressed by your illness. This disease is hard on the families of those who have it. There is a section here for families and caregivers if he’s inclined to visit.

Hi Chirpy birdy,
Two days is pretty quick to infuse a load. How much do you weigh? For instance, we are on a maint dose, that is one day every two weeks. It amounts to 35 grams of ivig per kilogram of weight for each day, so 70 grams total a month. we weigh 165, a load dose would be 140grams of ivig (2g/kg.) There is a formula that is followed according to your weight regarding how fast it should be infused. It takes us about 4.5 hours for 35 grams. Try to find out how much you are going to get total. to figure out a load dose, you take your weight, diivide it by 2.2 and that is your weight in grams. for a loading dose (4-5 day treatment) you multiply your gram weight by 2 and that is the equivalent of a loading dose, your actual weight in kilograms is a maintenance dose. The center will be able to slow down the infusion rate if you are feeling sick, lightheaded, blood pressure issues, pulse headache, palpitations etc. They will be monitoring you every 1/2 hour as the speed is ramped up, they can slow it down as needed. Just a suggestion, if it were me, I would make alternate plans for someone to pick up your child from school. You can’t be sure how you will feel, if it will be completed on time etc. The pre meds consist of benadryl and tylenol, we used to do them religiously, they did not help. We are not the typical response to ivig regarding reactions, we used to get the aseptic meningitis reaction every time, sick for 4-5 days post, fever, chills migranes throwing up. Others do perfectly fine. That is why it might be a good idea for the alternate plans to pick up your child till you know how you will react. I will pm you my number if you would like to call. Regarding pain, it does not hurt, per my now 14 y/o, started at 9. It only hurt if they blew a vein. Now we have a port so it is no big deal to access regarding blown veins. Probably the best way to get your husband to understand is print him out factual info from the ninds website and then print out some posts here that you think best describe what is going on for you too. something to ask your doc, is inquire if you can do treatments at home, it would be so much easier. I think I already mentioned to you that you can get a fanny pac and move about. A friend of mines daughter even goes to the mall or out to dinner and the nurse goes along, no one is the wiser. We opt for the stay at home and shoot bb guns outside with the nurse option and play texas holdem and xbox. You could opt for the lay on the couch route or get dinner ready. The point is, you can do what ever you want as opposed to being limited to sitting in an infussion chair. regarding your crying, I would say part of it is still prednisone part of it is the unknown and part of it is grief that comes with the disease. You will eventually go through all of the steps, sadness anger, despair acceptance and the ability to stand strong and take it day by day. Honestly it is not a death sentence, just a blip in the radar that you will have to maneuver and will make you stronger in so many other ways.

Hi, I received IVIG into my arm or hand 3 days every month over a 2 year period. No big deal. I did get some very mild flu-like symptoms for the first couple of days – nothing else. Pre-medication was done at the infusion center, Benedryl via IV and Tylenol orally. Check and see how they are doing it before you take anything on your own.

I also was on up to 80mg Prednisone for a while but couldn’t tolerate it so we stopped. I had weakness in my legs to the point of almost collapsing and terrible electrical shock sensation down my front.

Good luck.

flu-ish symptoms mite occur? The runs, and loss of appetite? But first before you start? HYDRATE LIKE CRAZY… Get some Gatorade. Drink a[1] 12-16 oz bottle then slurp more water till you slosh! Why? First off, makes your veins easier to ‘access’ or get a IV-line into; Second? Helps you slough off all the dead bad antibodies the IVIG mite create? It does put a stress on your liver which is the filter? So, more water to help ‘filter’ helps things along.
Silly tho this all sounds? It can help reduce ‘flu-like’ symptoms…but, don’t forget that you are having an immune ‘booster’ essentially and there are other parts of your body that mite well, object? Ususally it’s the ‘runs’, but occasionally it’s loss of appetite or even vomiting. Best advice is to eat very light like a broth and fruit cup the nite before? Likely after your first infusion? You WILL be HUNGRY!!!! I know I’ve been that way after each one..tho sleepy too from the pre-meds.
Web up the two most common brands ‘Gammagard’ and ‘Gammunex’ and add ‘full prescribing information’ – then read that stuff…don’t let it scare you, just EDUCATE you as to what all this stuff is and what it can do for you? Then..what side effects there mite be.
The process itself is ‘interesting’ at first? Get’s dull after a while.. Dull? IS a good outcome! Truly. Go and do it!
Also? Sounds like you’ve got a good schedule. But, to be safe? Do you have a friend to meet your daughter? Just in case? Be safe, careful and good infusing!

C Birdy ~ I’ve been on IVIG for 12 years (I think) each 6 weeks and my only side effects are I get very cold and have to bundle up – I have a kit for that. Sometimes a mild headache and I carry acetaminophen for that. I also carry claritin (w/out the D), a and a good book. Benedryl makes me feel goofy-headed. As has been said previously on this site you’ll learn as you go. Hopefully it will be short term.
Its normal to be apprehensive and not knowing adds to the anxiety. Hydrating is good and I hydrate every day, your body will tell you when its enough. The first week, I couldn’t be too far from a bathroom but my body adjusted. IVIG, CIDP or not, hydrating is good for you any way. Ask your nurses.
Best wishes………it will interesting to hear the results.

Chirpybirdy:
To a certain extent sure, listen to your body after your infusion and let it dictate your activities. At the same time, don’t make any plans to engage in any strenuous or stressful activity if you can avoid it. I never know exactly how I will feel after an infusion, but I am usually fatigued for a day or two. Every batch of IVIG is different, and each infusion is obviously received under different life circumstances; sometimes I am already fatigued or stressed, sometimes not. Try to take it easy after your infusions and build in time to nap, etc.

I also generally don’t feel much difference in my CIDP symptoms after an infusion; if anything, I may have a little more stinging and tingling temporarily. For me, the IVIG is working if I am not getting any worse over time; I’m not hard to please. Everyone reacts differently to the treatment. After some time, you can be examined by your physician and undergo testing to determine whether there is any objective improvement.

My neurologist tells me that no one is really sure exactly how IVIG works. One theory is that the infused antibodies block your own “rogue antibodies” from attaching to receptors on the myelin sheaths and damaging them. Another is that that the infused antibodies dilute the rogue antibodies so that fewer attach to the myelin sheath receptors. Either way the fix is temporary because the infused antibodies eventually die off and need to be replaced.

My neurologist tells me that the myelin sheaths can heal/regenerate with IVIG treatment, though each individual case is different.

Hi Chirpybirdy,
I believe I have a similar case of CIDP. I think we are in the lucky category. I have been on ivig for 6 months now and it is really starting to work. You have to come the realization as quickly as possible that you may not ever get back to full operation. It has taken me about a year to get to that point. I have learned to change my life as needed to adapt to my weakness. I am able to work, walk, do most of the things I used to do except I wear out very easily and I sleep a lot. It’s not so bad. Keep reading the posts on this forum and it will help you a lot. Reading these posts have put me at ease. Ask all the questions you can and educate yourself. The biggest thing is not to freak out. You can’t change what is happening. Good luck. Paul