So I did 234 grams over 2 days " I am 260 pounds", day 1 went good I drank lots of water and was going to the bath room every 30 mins about. It took then 8 hours to push the 117 grams. The 2nd day the ramped me up and got it all done in 6 hours. I guess that was to much for me I ended up going to the ER at 4 am the next day with the worst headache I had every had in my life. They gave me dilaudid 1 mg x2 and that stuff only took care of the pain for 3 hours after that the pain was back. I went back to the infusion center and they took care of it.
But let me get to the best part Saterday morning I went to spin class I just want to feel normal and take it easy just get the blood pumping since I laid around for 4 days pretty much. The work out went great till I got home and started peeing blood " it looked like fruit punch" I called the doctor and he told me this was not a side effect of IVIG.
I ended up going to Care Now they think its a Kidney stone or a UTI. I dont have any pain when I pee and after a few hours my pee is normal again. But it happend again after I played basket ball my pee was red. I am going to talk to my GP on monday I guess and see what she says.
Any advice would be great. I feel like crap and run down so I have no clue if the IVIG helped at all over all I am feeling alot worse then I did before all this.
The blood in the urine, as you describe, it what each of my brothers has experienced from kidney stones. One had pain due to the blockage, the other did not. I've not be plagued with that problem. So hopefully it is unrelated to your CIDP.
I'm still awaiting approval of my IVIG. I'll be taking my first dosage over 5 days. I hope it's slow so I don't get the headaches. As to when IVIG helps - of course I've no experience yet but I have read a lot of posts here on this forum and I get the opinion for many of us it takes a week or two to kick in. Although some notice effect earlier and some of us never get any help from IVIG. Many of us feel terrible, with flu like symptoms for several days after the infusion. It's like the old saying, "Your actual mileage may vary from the EPA posted average."
Let us know how it goes.
I know how it feels to want to be normal but I have never been able to be that physical after IVIG. I have never had blood in my urine but when I attempted too much after treatment I would have a headache or nausea again. Not as bad as the first days after but still there. Usually, the IVIG starts working about 10-14 days after but others have said right away also. If you are taking spin and playing basketball, you are way ahead of most of us, so you will hopefully benefit from the treatment. I was plagued with severe headaches and nausea even with premeds. The only thing that has worked is rate of flow. The slower I go the better. My treatment is 4 days. That is really slow but works for me and I only have a slight headache with it. Be patient sometimes it takes a cycle or two to see results if this is your first one. My advice is to slow the rate down and try to take it easy for about a week after.
I have never had any problems with IVIG, so I suppose I am one of the lucky ones. My clinic always gives me an injection of benadryl and two acetaminophen, which they say is to avoid the side effects, so maybe that is part of the reason. But, I do feel drained after the treatment, and usually come home and sleep for an hour or two. By the evening I am pretty much back to normal, or as normal as I ever get.
You are getting a pretty high dose, so that may be part of the problem. They might need to spread it out over more days to avoid the headache.
As far as how long it takes to see an effect: I usually start feeling the effect about 3-4 days after starting, so I am one of the people for whom it works really fast. But if you are good enough to play basketball, I wonder how much further improvement you can get? I would be ecstatic to be able to run and play basketball. At this point I am happy that I can still trudge up and down stairs, with some difficulty.
I'm sorry to hear that the first treatment didn't go so well. I remember before my first treatment - I was told by some of the other patients that it was important to get sodium after the treatment and they said they all ate McDonald's french fries. I wouldn't suggest this. It is important to make sure they do not push the infusion too fast. I know at times I just want it over but you do pay for it after. I know it took a little while before my nurse was able to figure out what I could handle. My doctor added Ketorolac through the IV after I had finished the IVIG and sodium chloride. This really helped with the headaches. You didn't mention if they gave you IV fluid (sodium chloride) after the IVIG. I know this also helps. Keep drinking the water - before, during and after the treatment.
I did have some kidney issues but not until after about 9 months into treatment. My bloodwork had very high Creatine Kinase Total and was diagnosed with Rhabdomyolysis. I was sent to ER and they basically had to flush my system and then I came off of treatment for a couple of months. After going back on treatment, I ended up with a kidney infection. They weren't sure it was related to the treatment but I did go back off for a couple of months. So after your first treatment - I'm not sure if it could be related so quickly - but I'm not a doctor.
I also was always wiped out the night and day after the treatment - so I just planned my schedule to make that a rest day. I know others that felt great. It really is different for everyone. Don't get discouraged - it may just take some adjustments. But the Ketorolac really helped with the headaches. I wish you all the best! Keep us posted.
My onset has been very very slow and I count myself very lucky for that. I just can't seem to find anything that will stop my symptoms. It seems like every time they try something new it just makes my symptoms worse. I am starting to get really worried I have something like ALS and not CIDP.
I am feeling better today no more blood when I pee and I don’t feel as wiped out. But my twitching has moved to new places. Everyone tells me I will get better but I can't seem to shack this feeling of dread that I will not. I wish someone could just sit me down and work through this with me and get my mind to a better place.
Thanks for all the help guys.
Have you tried Plasmapharesis? Prednisone? Cellcept? Imuran? Rituxan? There are many treatments so don’t get discouraged. Talk to your Dr. about your concerns and if he won’t listen get another opinion. There is also a Stem Cell Transplant study at Northwestern University. I am thinking about this one but there is a protocol that you may have not reached yet. Keep trucking! This is a chronic disease and sometimes it takes awhile to feel better.
Right now I am on IVIG and we lowerd my Prednisone to 20 mg from 50. I dont deal with 50mg very well.
Even with treatment, I understand how you feel about the treatments not doing you any good. That's based on the experience of what a lot of others have written. I think you are very fortunate to have gotten a diagnosis in the early onset of the disease. From my experince, over 18 months, things just got worse and worse. Slowly until enough things cropped up to get a diagnosis and start me down a path of treatment. I don't know if IVIG will do me any good, whenever my insurance decides to move ahead and approve or disapprove the treatment. If it does not, then my symptoms will continue to worsen until I find the right drug that does the job. I believe you will find the right mix. I hope it happens soon. I'd give about anything to walk well let alone run again and chase the grandkids. I'm pulling for you Jast. I believe it will all work out.
Thank you Joe D thats wht I needed to hear ^_^
Jast, I do hope you read this note. I hope the infusion center informed you of the do’s and don’t’s of of this product. It is dangerous. I want to enforce, you MUST rest after these treatments, use caution.Doing exercise is not important at this time, what’s important is allowing your body to absorb the IVIG product and sleep extra when you can. Forget the Spin class for now.Have you read up on the IVIG and what it actually is? YOUR BODY MUST GET USE TO THIS.PLEASE call your Neurologist for council and make a list of questions for him to answer.Keep in mind this treatment is to help with fatigue, BUT in most cases it may take 10 doses to see a difference. My treatment is a 2 day dosing every 3 weeks…I no longer work, and I have figured out how to pace myself so my energy will not be drained.I can not stress enough to call for council from your physician.Please feel free to drop a line back, I will do my best to assist you. Please read, be informed about the IVIG,it’s dangers and rewards.Life has changed, the best way to cope is please understand your diagnosis. Bonnie in FL
I did go see my Nuero today and we went over everything that has happened to me after my first IVIG treatment.
1 I am now short of breath and sweet like crazy doing things that were easy before the IVIG. I don’t think I can even do spin class now. Before the treatment I could do it but now I don’t think so.
2 The blood in my pee is gone as far as I can tell. I worked out today but really light. I could not do what I was doing before the IVIG if I wanted to I just get to tired. And still no blood in my pee.
He has stopped treating me, cancelled my next IVIG treatment and is sending me to UT southwestern Medical Center. I hope I can get to see them before my next IVIG treatment date that was on the 28th. I have read they are really good and I really need some good news soon.
Hi Jast, please do not get discouraged. No doubt your Neuro cancelled the other treatments due to blood in your urine. The IVIG is hard on the kidneys, it can cause real issues with the kidneys…I need to stress to you to please REST. Doing the cycle is too much for your body to handle.Focus on other things such as reading,drawing,learning how to cook really healthy meals that your body needs to heal yourself.Look at how much protein you are eating. The protein will help build your muscles now…Did your Neuro explain what is in the IVIG? Please drink several glasses of water every day. I just had my 2 treatments yesterday and today. I ask to have a copy of my lab work results. Do this also. Learn what the results read,ask questions…my number one rule: You are the captain of your ship, you must learn how to steer the ship, when you need to rest, what you need to eat and drink and how to take care of your self. If a problem occures, CALL the Neuro day or night,he always has a call service to locate him 24 hours a day.Again, drop a line to me and let me know how you are. OK? Blessings, Bonnie