Hi all-
I was just diagnosed with CIDP last week, and will begin IVIg treatments on Wednesday and Thursday. I am scared, yet excited, since this may help my ability to walk and stop my hand cramping. Any words of advice from those that have and are currently going through it? THANK YOU!
IVIG is to stop you from getting worse, along with steroids (possible). For myself I've had CIPD for seven years now. (it took them that long to figure out what it was) Don't expect much from you're first treatment and you won't be disappointed, it's an individual thing and varies from person to person, but you can consider yourself a very special person because you're 1 in 100,000. Bummer thought, there is no cure but the possibility of remission is very high. Good Luck, Gary
Hi Katy,
IVIg should help you, it's one of the most common first-line defense to CIDP. There is so much to learn, so much to read, and so much to absorb. Take your time and read as much as you can stand. If it (IVIg) works well for you without anything else, great. Drink A LOT of water day before, during and after IVIg. They may give you tylenol and benedryl, you may need it or not; but you won't know if you don't need it unless you try NOT using it. I didn't take it from the first time, and didn't have any trouble but some folks get big headaches and that is why they use them. Just drink a lot of water, can't suggest that enough. Sometimes, you will need another "helping hand" along with it; a steroid of some kind. But, if you can do without, that's best! If you can handle one more thing to read, I have a blog (I have since being dxed [diagnosed] gotten a stem cell transplant) that you can read my story: wendyssct.blogspot.com If you have any other questions, feel free to write to me @ wegrow4him@gmail.com
Wendy :)
Hi Katy I was diagnosed in April and started IVIG that day and have had 12 treatments since. I went from the wheel chair unable to walk to just this week being able to walk again if only a little I am very weak but the shaky, trembling feeling is mostly gone. It seems to be working for me but everybody's reaction is different. Drink lots of water if I don't I get killer headaches and learn as much as you can. Good luck.
Thanks! Two years ago I was running half marathons, and today I can barely walk a few blocks. My hands have begun getting very weak as well. I know that I probably won’t be where I was physically, but I am hoping for the best.
Hi,
i have had ivig infusions with 35 g of gamunex c since june of 2011. i try to hydrate very well so my veins are showing well for the iv and my recomendation is to get infused very slow and than increase it over 30 minutes range from 15 ml/hour to about 200 ml/h. i have not had any reactions or side effects like rashes or headaches. i just take tylenol ahead of time. its working for me, but i was not able to walk, and now i can get around with a walker. my progress is very slow but steady. i received the infusion for 6 months 2 x a week, than for another 6 months 1 x a week, now i will be on it for 6 months 2 x a months. i hope you can keep walking. please realize that your nerves are under attack, so if you get tired out for more than an hour afterwards you will effect your progress, and you might go backwards. i was a very strong person an lifting 100# was easy for me. now i am glad that i can lift my body and a small purse. i wish you the best, just remember if one ig product is not good there are other products. gamaguard made me sick and gamunec c is great for me. everybody is different. i wish you the best!! keep us posted.
Prepare to get a port. Your veins will be under attack. I had to get 50 mg of benadryl IV and took the tylenol by mouth. My potassium went low and took that IV which is caustic to the veins. Ask for regular blood work because if the potassium (K) might (will) drop and the magnesium will usually drop too. DRINK LOTS OF WATER or non-caffiene sodas; I drank ginger ale to help the mag and tylenol go down w/peanunt butter crackers, which were offered at my infusion center. The carbonation helped them go down. I had a PIC first, but it was hard to maintain and difficult to shower w/and for long-term it is not practical. I have stopped the IViG but will probably start back up in the next week. I was diagnosed august 2010, It is a difficult, not easily understood disease. This is a good site.
Take some Tylenol before you go. It helped me with the headache. I was really tired after mine, as well. Other than that, it wasn't too bad. I went in to work right after.
Hi. Don't be scared! The medical Staff I have encountered, especially the Nurses, have been brilliant.
My experience of the treatment is that I am often very tired for a few days after but then it kicks in and life is easier.
A tip I was given by another of our select group is to drink plenty of water while you're having the infusion, it certainly stopped any headaches for me.
I wish I had known about this site when I was first diagnosed, I know that I would have felt a lot less confused and isolated.
Hope it goes well 'Katyjust' and stay positive!
x
Hi Katy ! I was diagnosed in January and started with IVIG. It worked fantastic but now because of blood disorder.... I'm unable to get it. You'll do fine ........ Good Luck !
I am one of the lucky ones, for whom IVIG works almost like a miracle. On two occasions, I was hospitalized, unable to stand up. Within a few days of IVIG treatment, I was able to walk almost normally, even able to climb stairs. I never had any bad reaction, except that I feel kinda drained and tired for few hours. My clinic does give me Benadryl and acetaminophen before the treatment, which might help.
My only advice is to take a good book (or computer, if your place has WiFi). My treatment takes about three hours, and I can't stand the TV they have on, so I use it as an opportunity to read. The Benadryl makes me sleepy, so if you have that result, you might want to take a pillow.
When it became apparent a couple of years ago that steroids were not working for me, I was started on IVIG every three weeks. I have gradually stretched that out to every eight weeks, and am hoping to go ten weeks this time. My goal is to get off it entirely, but I know some folks have to take it the rest of their lives.
Good luck!
Bill
My injection nurse gives me 4 ibuprofen and a shot of benedryl before the treatment to ward off pain and itching from the infusion. Fortunately, I have had no side effects from the treatment. Good luck!
My infusion gives me the tylenol and benadry and a shot of morphine. they won't take on my word I took it. It has to be 30 min before so they had to admin. I did take zofran before for nausea. I was not allowed to self admin any meds in the Infusion Center but I would take some zofran w/me.
Hi Katy
Just "go with the flow". I don't take anything before, and don't take any special precautions (except not too much to drink just before and that last minute trip to the loo - so I can sit out a few hours without dragging the stand off to the loo during....).
I HATE needles - so during that bit I go to my "happy place...", AND (most important) - take entertainment - book, laptop, DVD player, crosswords, whatever - to last a few hours.
You could be one of us lucky ones who gets very little reaction and hopefully you will find that you stop getting worse and do get a little better in the next few weeks (and then get a little worse before the next dose).
One clue on veins - some people have trouble. Some of my nurses have a "trick" - they use a really warm moist washer on the hand and wrist for a few minutes - gets the circulation going - particularly if you are a bit cold (or nervous).
Keep us posted - lots of people here with different stories and sure to be one that relates best to how you go.
As I said, they like to give the premeds where I go. All I took was the nausea meds. They like a 30 min before. and they wanted it documented. Where I go they have tvs at each station. I got a pic after 3 days and then a port after a month because my veins are really bad. Don't be afraid to ask for the IV team if they have a hard time. 2 sticks is all a nurse is allowed. I am not trying to add to you anxiety. Trying to inform.
And they monitored my BP every 15 minutes.. forgot to add that. made it hard to concentrate on reading or work. or anything for that matter. The IVig can cause the BP to flucuate so they monitor it, at least where I go.
tcwlkr said:
And they monitored my BP every 15 minutes.. forgot to add that. made it hard to concentrate on reading or work. or anything for that matter. The IVig can cause the BP to flucuate so they monitor it, at least where I go.
tcwlkr said:
tcwlkr said:And they monitored my BP every 15 minutes.. forgot to add that. made it hard to concentrate on reading or work. or anything for that matter. The IVig can cause the BP to flucuate so they monitor it, at least where I go.
And after the 3rd day I sometime start running a low grade fever 99.5 - 99.9 sometimes 101 but never higher. they monitor it too.
I had my first ivig about 6 weeks ago and tbh it hasn’t really been the wonder cure we all hope for , was earned nothing may come of first round so not too disappointed.
I had 4 days of 12hour infusions and was just really tired for day or two afterwards , they kept comming round with jugs of water saying you can’t get next bottle till you funished water jug so kept me well hydrated and had no headaches.
Blood pressure did rocket at one point so had 15m checks but went back after a few hours.
All in all was much less scary than it sounded it was going to be.