You may not notice anything for a while, just depends on your own body chemistry and where abouts you are with the progression, state of your CIDP. Glad you aren't having any issues so far. Those pre-meds are worth their weight in gold!
Mary said:
I had my Infusiontoday , am feeling really cold , weather is in the 70,s here and I am in asweater ad had a blanket over me the whole tiem . I have a 'headiness' and weakness . I had my pains the whole tie during the infusion , Because my symptoms have been getting worse Doctor has decide dto give me athree monts off it and then go back to he rin June to see her . Has anyone else been taken off it ? As I type I have pricklng sensations all over even my face and eyelids , I am so tired of all this but I must remember it could be a lot worse
Mary
Thanks Mary, Tureblue06 and Brenda
You are welcome Joe,
Hi there Mary,
Yes, I had a break of 3 months. My condition deteriorated somewhat so my Neuro started me back on it. I have been on it now for 3 years and am infused every fortnight. Do the nursing staff make sure that the infusion bottles have come up to room temperature before they give them to you? This can make you feel freezing! I am sorry you are having trouble, I do know how awful it can be. I have talked about my experience here in one of Joe D's posts. I don't want to bore you with a novel. It would seem that you are sensitive to the infusion so try and get the nurses to keep the rate low and slow. It just isn't worth it to try and get it over with in a hurry. The cost to your body over the next week isn't worth it. This will sound strange but having pain is actually quite a good sign, I recently met a man at the hospital who has no pain at all BUT he has lost all the muscle function in both legs and has foot drop in both feet. He uses a walker at home and has a cane to walk with and braces on his legs all the time. I also get prickly feelings everywhere as well as muscle jerks which are terrible. If you start to feel worse while you are off treatment I wouldn't wait, I would tell your Dr straight away and hopefully they can start you back on Ivig. Sometimes it is hard to tell whether you feel a benefit from the infusion because the reactions are so awful and they mask any good feelings and positive benefits that you may be having.
Hello true blue , I think my Neuro is giving me a rest because ever since my sfirst one day Infusion I have been getting progressivly worse , and am having no benefits ( as far as I can tell) I am having mor etrouble walking am very unsteady and the pain is pretty bad , I also have no feeling in two toes on each foot right next to my big toe , My strength has really deteriorated as my muscles are wasting , The nurses instructions are to give the Infusion very slow ( over six hours) I am given my Infusions at hoem which is great! When I had the five day Infusion I felt better for about two weeks , I amwondering if it is not doing much for me if it is because it took nearly 10 years before I got the right diagnosis , My Neuro says I am "vry complicated" almost forgot to say I put the Infusions out on the kitch counter the night before so they were at room temp.
Thank you so much for your advice I sincerly appreciate it :)
I went through the five days and it was a breeze for me. The most significant thing that happened was on Friday, day 5. When I was sitting in the chair with my feet propped up, I was flexing the right foot out of boredom. I noticed I was getting a feeling of very slight pressure from my dead left foot. I pulled off my brace and held the ankle so the foot was 90 degrees to the ankle then put my right hand on the bottom of the foot to hold it. I was then able to oh so slightly put downward pressure, like pushing a gas pedal down with the dead left foot. Amazing.
That afternoon after I was home, I noticed that my balance, which has been horrid, making me hold on to something as I couldn't stand on both feet and balance. Suddenly, 70% of my balance was back! I could stand upright and put my hands at my waist for two minutes! Wow.
This has to be a result of the IVIG but I believe it reduced swelling around the area(s) that my body goes to for balance as well as the axion that controls some of the muscles on my left foot. Based on what all of you have told me, it takes months for things to heal, if we even get that result. No other changes yet but with that much balance restored, I'm much safer moving around the house and will be able to go back to being the primary chef again without having to always sit in a chair. I could stand and cook until last December. I have a few weak muscles complaining slightly about having to handle the load again but I'm sure the will get stronger.
GREAT NEWS!!!! Congratulations!
BARB
Awesoem news Joe! I am so happy for you :)
Mary
Since it is a blood component everyone has different reactions. I recieve a high dose during IVIG and towards the end I feel like the blood in my brain is being rushed to the point where I can't think but there is no pain.
That is great news! Be "patient" :) you may notice just slight improvement each time you have another dose. One lady I know who had G.Barre syndrome and was completely paralyzed has been having IVIG for 10 years and she has gone from being able to do absolutely nothing to being almost normal! There you have it, slight improvement over a long period of time for her but you wouldn't know anything was amiss with her now. I'm sure it won't take you 10 years of course as already you have noticed improvement. If you can keep active on those painful muscles, it is a good sign, means they are working! When do you go back again for your next treatment?
I didn't have any trouble on loading dose time, only drank lots of water; didn't even do the pre-meds. I currently infuse at a rate of 200, higher than that and I feel "full" in my neck and lower head/shoulder area. I only have one more dose of IVIg to get before I get (my own) stem cell transplant. I am in Chicago now at Northwestern Univ Hosp for it. If you want more info on this, go to
and I have my own blog for my story: wendyssct.blogspot.com
Just want to get this valuable information out there for those who may want to go this route for a great chance of GETTING RID OF CIDP!!
Wendy :)
I hope you are tolerating it well....I have been on IVIG for 4 years. I also have IGG defiency on top of CIDP. The water thing is KEY.....it really helps with not only the headache but also the ability for the nurses to start the IV. My rate is 100 ml per hour and I get 40grams every 4 weeks. In the beginning I did have reactions to the treatment. I was hospitalized twice in respritory distress. I have ashthma and I was also sick with chest infection at the time of the treatment. I was recieving them at home but now have to have them done in the hospital because they get excited when you can't breathe. To help with my symptoms I get 50mg of benyadryl, pepsid, tylonal, and iv steriords. This has really helped with the reactions. I still get the headache but they are not severe. The steriods help also with the slugish feeling the day after. I wean my self by taking 10mg predison the next day and 5 for the next two. My pre-treatment cocktail seems to be helping with the other issues and have not had any problems since we started pre-treating. Keep working at what rate feels best to you and stay at that rate. About the bubbles......one of my home nurses started to raise the pole to the hights point and tape the tube taunt on the pole.....has made the frequent resets of the pump down to almost none.
Hi,
I have been on IVIG (Gamunex C) 35g since June 2011. For the the first 8 months I went twice a week and since January once a week. The infusion rate is often the key to not getting a headache. I get tylenol befor I start and the infusion starts at about 15 ml for 30 minutes, than goes to 30 ml for the next 30 minutes and doubles again and so on. I received Gamaguard once for 3 days in Feb. of 2011 I believe it was 70g each time and infused much faster. I felt horrible afterwards. I could not eat for a week and my head was exploding. So I believe you have 3 factors that contribute: amount, rate and product. I am fortunate to be treated by a very kind and knowledgeable Neurologist at the Mayo Clinic in Rochester MN and they go there through massive amounts of IVIG. They know what products have what side effects quickly. My recommendation is start very slow! Who cares if it takes all day, as long as it works and you can get the amount you need to get better. I hope your infusions are going well and you make a lot of progress! I am usually very tired fo a day afterwards. Let us know how things are going.
It is a while since this discussion started but thought I would add my bit as well.
I have been lucky (apparently). With the original loading dose I was certainly "delicate" by the end the 5 days. I did have headache and nausea (both not too bad) after each session. Food after helped a lot. The first session was carefully monitored and slow but as we became more confident the sessions were faster and less monitored. I did have a quite high temperature (over 38) before the last of those 5 sessions but we figure it was more due to physical effort getting there and the CIDP effect than the IVIg. The temp went down fairly quickly but getting the official go-ahead delayed that session by almost 2 hours.
I have only had one monthly session so far and it went totally without a hitch at what I believe was their fast flow rate (except I finished my anti-boredom book before the session was finished!)
The only precautions I take are to avoid drinking before the session (so I don't have to wander to the toilet towing the stand....), take a book, and arrange food as soon after as possible because that effectively deals with the mild headache and mild nausea. At my facility the nice lady comes around with tea/coffee and a nibbles assortment so that helps as well Oh! - and I am a needle whimp - so I go to my "happy place" for that bit ....
We are all different and some will find it far more difficult that I have so far.