Things not going good after IVIG

General General CIDP Discussion
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Hey guys,

Things for me have not been going very well. I just wanted to recap everything that’s been going on and get your guys input because right now I don’t have any were else to go. Keep in mind during this whole time I was going to the gym at least 4 days a week for a hour and a half lifting some heavy weight. I was also playing basketball on Sundays with no problem.

This all started over a year ago when I got a twitch in my right leg "quadriceps" that just would not go away. I hurt my right knee a few months before so I figured it was related to that. Then a Few months later the twitching moved to my right arm "triceps" Then I a bold spot in my beard on the right side.

So I go to my GP she told me to wait 3 months see if it goes away. I wait 4 months to go back to see her. My twitching has gotten a little worse but it was still just my right side. She sent me to a Nuero he did a EMG on my right leg and arm , It showed signs of demyelinating disease. He also did a lot of blood work that all came back normal. Up till that point I was not really worried about anything. It was after nothing showed up on the test my stress level went up allot. I went on prednisone 20 mg for 3 months at first I showed signs of getting better kind or. I was doing more at the gym but the twitching was getting worse and had moved to my left side. But strength wise I was getting better.

Then one day my right side started to tremble when there was any stress on it. If I tried to stand on just my right leg it would start to shack, my right hand started to shack holding a slice of pizza and if I tires to smile long then a few seconds the right side of my lip would start to spasm all this went away the next day. My recovery from working out was taking longer now my legs stayed sore for 5 to 6 days when before they would recover in 3 my whole lower body workout had stalled I was not long making any improvements I was slowly losing ground. I was getting the burning feeling in random place in my body to, It never lasted long and would come and go. I told my nuero what was going on and he said we need to start IVIG and up my prednisone to 50 mg. It was going to cost me $7000 to get the IVIG and I wanted to make sure that I had CIPD so I went to see a 2nd nuero. It took about 3 weeks for the 2nd Nuero to see me and get a MRI of my lower back. After looking over the MRI and the blood test he ran I told me I should start IVIG ASAP so I made the appointment and got my loading does of IVIG on 2-17,2-18

I got 234 mg of IVIG over 2 days, the first day went great the 2nd day I ended up in the ER at 4am with the headache that is so common. They gave me some drugs and then I went back to the infusion center and they gave me so more and by Friday morning I was better. I felt really tired like I had the flu but after all that I figured it was normal. Saturday morning I went to the gym and did the spin class I always do. I took it easy and did not really push myself since I still felt somewhat tired, I worked up a good sweat and got the blood pumping. Then I went home and found out there was now blood in my urine. I called my Nuero he said this is not a side effect of IVIG and to go to the ER. I went to Care now and they ran a bunch of test for a Kidney stone and UTI. I was there for about 4 hours. I have no pain when I pee and nothing showed up on the x ray for a Kidney stone. The doctor order a CT that I have not gotten. Funny thing is right when I was leaving my urine looked normal again and has since.

I went to see my Nuero one last time yesterday and we went over everything that was going on. After the IVIG my strength has dropped allot. I get winded and sweat like crazy if I tired and do anything that was easy the week before the IVIG at the gym. I can’t even walk and talk without running out of breath sometimes. Plus on Monday my twitching was the worse it has every been it was all most going on nonstop and it was every were but my left leg was the worst I had to take valium 5mg to calm it all down. My Nuero is sending me to “UT SOUTHWESTERN MEDICAL CENTER” he is no long going to treat me he says I am to “ Weird “. The doctor I am being sent to is Sharon Nations.

Does anyone know anything about this place and this doctor?

Have any one here had or read about someone getting way worse after IVIG?

Can I have a EMG that shows slow F-waves but that be normal for me. Maybe I just have slow f-waves?

Can IVIG make CIDP worse?

My doctor is not even sure I have CIDP anymore but nothing he could think of seems to fit. Right now I am seating here in worse shape than ever and just pissed off. No one seems to have any answers for me at all its just more and more waiting. If I keep sliding at this speed by the time I get to see this new doctor I will be lucky if I can walk.

I don’t know what to do I am thinking about just going to the ER and hoping someone there knows what they are doing.

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Stress has always seemed to make my symptoms worse. Is it possible that since the 2nd day of IVIG went so bad that my stress was so high It kicked the CIDP in to over drive making the IVIG not work?

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I've not real insight on all this to explain a darn thing Jast. Your earlier problem of twitching was a lot like mine but instead of twitching I was getting random cramping. First left leg, the both, then admonimal muscles, and finally my fingers would cramp together if I tried to say, pick up a dime off the floor. From what I've read here, IVIG can be very rough on some of us, I pray I skip that step myself. I truly wish you didn't have it either. This is one frustrating disease. So similar, so different from person to person. Then add the frustration of the drugs that are prescribed that either don't work, work for a little while, just make you sick or even make you better. Like the old saying goes, your mileage will vary.... The whole thing can be difficult to deal with. This is the place to come and shout, scream, or ask a friend for a shoulder to cry on. I'm pulling for you Jast. I'm so sorry about the aggrevation of finding a drug that works or a positive affirmation from medical science that it's CIDP and nothing else sprinkled in just to mess with your life. Hugs Man!

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Jast,

I have been getting IVIG regulary for 3 years. Northwestern would only give me the initial treatment in the hospital under close supervision. It was a five day treatment. I also began to have a headache and my blood pressure rose to dangerous levels. They slowed down the treatment to 7 hours. Also the type of IVIG was changed to Carimume. Both changes made all the difference. Your dosage amount sounds high for 2 day treatment and I would question that. Headaches commonly come within a few days after treatment as well. IVIG often makes us weak. For me it feels like a war inside the first 5 days after treatment but I felt so much better day 6 and 7. Then it was time to get it again. I do notice that it hurts the most on the areas that need it the most. My diaphram is weak so after IVIG it's also hard for me to breath. It does improve w/i a few days. Have you taken the test for your diaphram where you breath into a straw? How is your blood pressure? One clue it is your diaphram is that after you eat it is more difficult to breathe because the weight of the food is pressing on your diaphram. Also, I do get methprednisone infused when I have IVIG because of the weakness IVIG causes me. I am not so weak after IVIG with the prednisone. My neurologist says all of this is not uncommon. It takes time to figure out the dosage and type of medicine you personally will respond best to. The odds are better you can find a better doctor at a big medical center even if it means you have to drive far. Please let me know if you have any questions.

Mabes

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The thing that drives me crazy Is I have not read one story any were about anyone having CIDP and being able to do all the things I can do. I can run, play basket ball, workout, do kung-fu, I am in pretty good shape. So either people like me with CIDP don’t post on any forums or, my CIDP is just not at all normal, or I don’t have CIDP. I am starting to think I have tricked myself in to having CIDP symptoms if I look back on it I never had any of the other symptoms before I read about them. All I know for sure is I have twitching and a EMG that shows Slow F waves on my right side . All the other stuff started after the Doctor told me I had CIDP.

And now after IVIG I look more like someone with CIDP then ever. I have not read any were about anyone having IVIG and getting so much worse on it. I have read a lot about people getting a little better or not better at all or a little worse but nothing like what has happened to me. Having such a drop in overall performance I have not read it any were and it seems to puzzle the doctor also. I trusted this guy to know what he was doing and had complete fate in him. And after everything that happened to me he could not even say I am sorry or give me some kind of word of comfort. He made me feel like he was just quitting on me giving up. I understand if you need help but the lest you can do is sit down and tell me why your sending me off. This is his fault he pushed the IVIG that fast he is the one who said its CIDP and I am now worse than ever because of him. I understand he is human and people make mistakes but at least own up to it.

I was thankful that I could still do all the things I love in my life and that CIDP had not taken that away yet. Then to read about IVIG and see how well it worked in most people it gave me more hope that I would have a long time before CIDP would start to take those things away from me. Then there is the steam cell trail that may be a cure for this and if everything goes well by the time IVIG stopped working I could get that and just be fixed. Then to have this happen to have the drug that should make you better make you so much worse.

I had my GP check my kidneys and they are fine now so that’s good news. My knees feel better then they have for a long time I am not sure if that’s from the IVIG or just because I can’t really work out anymore. My next date for IVIG was the 29 so I am hoping that by then if it was the IVIG that did this to me my system will have gotten most of it out and started fixing its self up.

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Jast, the two doctors who were recommended to me were Sharon Nations and Alan Martin. I could not get an appt with Dr. Nations until Aug, so I am see Dr. Martin. I had my first IVIG yesterday and seem to be fine. I also have mild symtoms. I've been going to the gym since October, but just walk, stretch, and lift small weights under the guidance of a personal trainer. I walk fine, but have trouble going up stairs or standing on my foot (toe part). If you can get into UTSW they are great. I've been going to an eye specialist there for 15 years. I just was afraid to wait until late Aug to confirm any diagnosis or treatment. Let me know what you end up doing, ok? GOOD LUCK!, barb

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Hi Jast, My husband has cidp and is on ivig. The ivig works really well for him and he can lead a pretty normal life. He gets 240gm a month divided into 4 doses and has minimal side effects. It seems what you got is a lot over two days. And I am pretty sure your first dose should be given over five days at a hospital or clinic. Maybe you just got too much too fast! I hope things work out for you!

barb said:

Jast, the two doctors who were recommended to me were Sharon Nations and Alan Martin. I could not get an appt with Dr. Nations until Aug, so I am see Dr. Martin. I had my first IVIG yesterday and seem to be fine. I also have mild symtoms. I’ve been going to the gym since October, but just walk, stretch, and lift small weights under the guidance of a personal trainer. I walk fine, but have trouble going up stairs or standing on my foot (toe part). If you can get into UTSW they are great. I’ve been going to an eye specialist there for 15 years. I just was afraid to wait until late Aug to confirm any diagnosis or treatment. Let me know what you end up doing, ok? GOOD LUCK!, barb