Side effects from IVIG/PP?
AnonymousJune 16, 2008 at 11:23 am
Have any of you had lasting side effects from IVIG or PP? My neurologist is saying that my son’s GBS is mild enough that the risks of getting something from other people’s blood is not worth doing either of these treatments at 3.5 weeks since diagnosis. I trust him and he is the best in our county, but I want to hear from you have had these treatments as well.
My quick intro. is that I’m the mother of our young adult son, Tory (19), who came down w/GBS on 5/20/08 and it thankfully only affected his legs, feet, arms and hands. He swaggers walking and doesn’t lift his feet very much. When he closes his eyes, he looses his balance. We think Strep throat triggered it or was the last straw before it hit him. He had some problems with sorenss in his face/neck/eyes but that went away. The weakness in his legs and arms does not seem to be getting any better but it’s not getting any worse either. He has fallen 2x and cannot get back up w/o help but he can still walk unaided.
He has not had a spinal puncture. We had trouble seeing the neurologist because he’s so busy, and finally our GP told me to take Tory to the ER and the neurologist showed up in 5 minutes. This was at 3 weeks and we saw the GP on day #3 and he diagnosed him on that day, saying that he has a classic case of mild GBS. My understanding is that he should have shown signs of healing by 4 weeks if this is acute GBS. What would you say about this? Thank you for your support, we are in Mendocino county, CA if anyone is in the area and would like to meet or talk.
AnonymousJune 16, 2008 at 12:05 pm
Welcome! I have a grandson with CIDP. He’s first dianosis was GBS but was changed after seeing the course of the illnes. Did your son have symtons for a while before seeing the neuro? What was the onset like? Did he have any treatment and followup with the neuro? Sounds very much like Josh’s story, he’s legs were first to be affected and he had began to fall. He was hospitalized and recieved the 5 day loading dose of IVIG and Solumedrol. The response to this was very good. 2-3 weeks after DC he complained of numbness starting in his fingers and having difficulty using he’s hands. He’s neuro put him back in the hospital and did another round of treatment. He again responded very well and had marked improvement. He did have an MRI and spinal tap along with with a large number of other lab tests with the first admission. His diagnosis was changed to CIDP based on the course of the disease. He is now on po prednisone along with IVIG very 4 weeks. We live about 60 miiles north east of Sacramento, feel free to contact me if I can help in any way. This is a real adventure.
AnonymousJune 16, 2008 at 1:10 pm
Hi Brenda, Welcome to The Family. Recovery is not that quick usually. Recovery takes its own path, very individualized, and there is no right or wrong to it. Nobody can tell you exactly when or how long recovery will take. He should get ivig or pp, it will slow the damage that is being done to his nerves. The chance of getting anything from ivig is nil, it goes through a very thorough cleansing/testing routine before it is given to patients. you can read all about it on an ivig/pp site online. Not giving ivig for that excuse tells me that dr doesn’t know much about gbs/cidp. I wasn’t treated until my second paralysis and that was because of this site and all the info I got from the members and telling my drs what they need to try. I had aseptic menigitis from my 2nd day of ivig, it was not anything you actually get from the ivig itself-but a reaction that my body had to it. Which isn’t all that unusual considering I’m allergic to alot of meds and myself:rolleyes: . I still have had more problems without treatment than I might have had with treatment. And my neuro is telling me I might be able to use ivig again in a different form and infusion process, my fingers are crossed. Is Tory getting enough rest? Rest is really important and is very hard to do. Rest helps the nerves heal. PT helps the muscles retrain the nerves to do their job correctly. start off doing easy movements and work up slowly from there. Please feel free to ask any questions you have or just vent when you or Tory needs to. Take Care.
AnonymousJune 16, 2008 at 1:27 pm
You son sounds just like my 19 year old daughter. Her feet, lower legs, hands and lower arms are the only things affected. Hers is also weakness with no numbness. Her illness also started the same way and we think it followed an illness. She gets IVIG weekly and is also on Cellcept. She has not gotten better, but has not gotten any worse. We go back to the Mayo Clinic in July.
AnonymousJune 17, 2008 at 12:57 am
Tory had symptoms for 3.5 weeks before seeing our neuro because that was the absolute soonest they told me he could be seen. He wasn’t actually scheduled to be seen until 4 weeks, but our doc said to go to the ER because he was uncomfortable with knowing that the neuro was taking a long time to see. This really frustrated me. I was told that nothing needed to be done sooner because he could still walk, and was not having breathing or heart problems. What was the MRI for? Was this before they knew what it was? I’m very happy to say that just tonight I noticed him walking faster than usual, and a couple of minutes later he came up to me with a big smile and said I noticed that I’m walking faster. We both smiled at each other, I’ve been waiting for this day! I hope your day is soon too.
AnonymousJune 17, 2008 at 1:03 am
Is Tory getting enough rest? Rest is really important and is very hard to do. Rest helps the nerves heal. PT helps the muscles retrain the nerves to do their job correctly. start off doing easy movements and work up slowly from there. Please feel free to ask any questions you have or just vent when you or Tory needs to. Take Care.[/QUOTE]
Well, Tory sits at a computer a lot. He is not exercising, I’ve been encouraging him to flex his muscles while sitting every now and then. I think he’s resting, he gets about 9 hours of sleep a day. We’ve been working on improving his diet. He’s eating more fruit, like blueberries, strawberries, raspberries and cherries, and I’m making him a glass of fresh vegetable juice each day too. Yesterdays was carrot, beet, apple which I think tastes great but he chokes it down. We’re also cutting out soda altogether and reducing sugar which is a challenge for him.
AnonymousJune 17, 2008 at 1:08 am
[QUOTE=Carla]You son sounds just like my 19 year old daughter. Her feet, lower legs, hands and lower arms are the only things affected. Hers is also weakness with no numbness. Her illness also started the same way and we think it followed an illness. She gets IVIG weekly and is also on Cellcept. She has not gotten better, but has not gotten any worse. We go back to the Mayo Clinic in July.[/QUOTE]
How long has your daughter been diagnosed? They do sound similar, but Tory has never had IVIG. Did your daughter ever have respiratory or heart problems, or get to the point that she could not walk? Just today Tory started walking faster! He has shown no change for the last week or so but I put it on the calendar that there’s improvement. Hallelujah! These small steps are big to me. Sorry you guys, I’m trying to figure out how to use this board and I know I’ve replied to some of you but didn’t do it right. Maybe this one will work. Brenda :p
June 17, 2008 at 8:11 am
My 11 y/o son was dx w/gbs 21 months ago. Had the symptoms for about 5 weeks. Very subtle in the beginning, tired, hamsttring/calf tightness. Then by the third week, tripping, not able to hold pencil, constipation, some urinary problems and could not walk. Breathing started getting affected in picu for 10 days. IVIG helped immediateley. With in 48 hours, he was running down the hospital halls. We had 5 days total of a loading dose, 2g/kg. 6 months later, back again, cidp dx. We now get ivig every 30 days over 4 days. We just went to the neuro yesterday and Kevin is at 100% with a little weakness in his thumbs. He does get tired when he does to much and usually is in pain a day following too much activity.
IVIG is a blood product (clear) that contains the antibodies of 15 K donors. It is cleaned with detergent to remove viruses and carefully screened. The process is quite legnthy. I have read it is 6 months before they actually use a donated batch. While all medication has risks, even tylenol, sometimes the need outweighs the risk. I no longer give it a second thought.
The reason you do need it for your son is to completeley stop the demylienation process so no more damage happens. There are a few explanations given as to how it works, some say it loads the body with antibodies and out produces the bad autoantibodie, other explanations suggest it is a barrier on top of the myelin sheath. The immune system then has something else to attack instead of the myelin. With gbs, the attack eventually stops and no more damage is done, but you are left with damage that take along time to heal. A mm a day, if you do the math, it is something like 14.37 inches a year, starting at the head and going down. but healing does not start until the attack is finished. If you notice he feels better, maybe it has, or maybe he is adapting to the symptoms. I would do the ivig just to be sure, you cant’s always get full function back. Be watchful that the symptoms do not reappear, as others have mentioned, they too had a dx of gbs and then cidp. If it gets changed to cidp, damage is continual and MUST be maintained with ivig.
It really is too early to decide which it is. The conservative thing to do either way would be to do a loading dose of ivig and then wait and see how the healing goes. Other than a spinal I would get a ncv/emg for a baseline in the event a question of additional weakness arises. Then you will have something to compare it to should you have a repeat. If you do not want to do any of those options, another simpler (procedure wise and informativeley speaking) test might be a grip test to measure the pounds of pressure he has in his hand stregnth. A PT person can do this, our neuro also does it. This is a long journey, be vigilant and document everything so you have accurate notes for comparison. If you do get ivig, ask for the slowest possible flo rate, a liquid constitution, not powder mixed (s/d) do premeds, benadryl, tylenol, followed by aleve a couple of hors later and plenty of fluid. My son had the a difficult time with the medicine reaction time and finally for the first time in 21 months was symptom free of reactions last week. Good luck!
Dawn Kevies mom
June 17, 2008 at 8:13 am
Is ca mom short for California? We are going to be visiting Ca soon (Southern) as Kevin was granted a wish from Make A Wish. Do you have any awesome suggestions of where to go (off the beaten path) ?
AnonymousJune 17, 2008 at 8:23 am
Good morning Brenda.
I am still recovering from GBS and it has been over a year. My life is normal other than soreness in my back.
Your Neurologist sounds like so many. They do not know what GBS is or don’t care. From what you said my doctor would have had your son in the hospital and on IVIGs. I had a very mild case of GBS. it only affected my legs and feet.this to me is a mild case. I would find another doctor and report this one you are seeing to the AMA.Ask your GP to get you with a doctor that cares. Your Neurologist knows he is the only one and has a big business and really doesnt care. Your son needs help NOW not when the doctor has time to see him. My doctor sent me to the hospital from her office and this was after she had spent 3 hours testing me. I have you.ll in my prayers (Steve)
AnonymousJune 17, 2008 at 9:55 am
My daughter’s illness started in the fall of 2005. It has been really hard to pinpoint when hers started because she was very active in Color Guard and Winter Guard in High School. Hers seemed to start with pain in her toes and then the pain traveled up into her calves. By fall of 2005 she started falling during her Color Guard performances and then finally she told me that she was having trouble buttoning her jeans. They first diagnosed her with CMT, but the tests came back negative and we did not have any family history. We went to Mayo in 2006 and that is when she was diagnosed with CIDP and started on the IVIG. A year later they added Cellcept. We are now at the two year mark with medication and she has not gotten any better, but also not any worse. She has worn AFOs since January of 2006. Her neurologist is now sending her back to the Mayo Clinic to see if they need to change her diagnosis. Her symptoms have been all strength related with no numbness. From pretty much the beginning this has affected her from her knees down and her elbows down. It all seemed to happen in a short time frame and it has remained stable.
AnonymousJune 17, 2008 at 4:39 pm
I am going to offer an opposite opinion. I like your doctor. When I saw that I was getting GBS a second time twenty years later, I called several hospitals and spoke to the people in the blood dept where they did the IVIG and plasmapharesis. I did not like the side effects they told me about. But if it came down to my not breathing, then I would have considered it. I did not have either both times I had GBS. Looking back, I am grateful. I consider myself a medical intuitive and I had a really bad feeling about these two treatments. So I attacked the GBS wholistically. I was a middle school teacher – gifted science and math. I have read tons of books on health for the past 35 years. I am not on any pain medication and I wonder what I did to be able to say this – was it the supplements or the lack of Physcial therapy or the lack of IVIG. I do not know.
Since your son has a mild case, I think your doctor is wise. FInd old posts on here about IVIG. Reading some of them opened my eyes. Had I had to do it over again, I would not get it. GBS attacks and then you start getting better. TO translate that – you don’t get worse. Just don’t look for improvements. They will come but slower than you will notice. IF your son is not getting worse, If you decide to go the wholistic route, read some of my old posts.
There was just a show on tv today about Post polio. The doctor said that those with polio were worse years down the road if they exercised alot. The doctor’s name was Lauro Halstead. I intuitively thought that exercising the body when it was so damaged was stupid. So the only exercise I got was to drawl around the house for 4-5 months. I wonder if this is why I do not need pain medication now.
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