Hi,
Hope that your treatments went well!
I try to pamper myself on days I get my treatment (usually Saturdays). Drink lots of liquids. I take a drink from Starbucks, my Nook, and settle in. After, I go home and take a nap (for some reason it makes me very sleepy - probably the Benadryl), and then I have ice cream. Works for me!!!!!
Let me know how you did -
Katy,
I am going to try my 2nd round next week. My 1st did not go that great I got aseptic meningitis but I have a flow rate of a 350 on the second day. That’s the bad news the good news is after about 4 weeks all my problems were gone. IVIG worked for me we just have to play around with the rate. This go round I am getting half IVIG I got the first go round and IV steroids the flow rate is going to be 150.
There is some playing around that may need to be done. Drink lots of water and try to keep the flow rate low if you can.
I don't recommend caffiene. We have an Arden's Garden here; but I watched them make it. Cheaper at home. Take one cup of juice (apple, OJ, Cranapple or mix to your taste), one yogurt (plain or flavored [they didn't do that at Arden, but it adds], then fruit of your choice, ie, bananas, peaches, blueberries, strawberries, kiwi, whatever "floats your boat," and then blend in a mixer. If you use frozen, it is ready to drink. If not, I add crushed ice. Flax seed is also good to throw in. I have lost all appetite, but this tastes good. In the frozen fruit section they have "good for smoothies" fruit prepackaged. And one companie has the yogurt already chunked in. I also but Vick's. Salve on the bottom my feet sometimes to stop the burning and then put socks on top of them. It is a constant struggle.
Good luck.
HI:
Pretty much same comments as all the others. HYDRATE WELL before and during. My husband, has CIDP, receives 50MG a day of IVIG for 5 days in a row every four weeks. He gets killer headaches if he is infused too quickly. For him, the first bottle is done at 15, then 30, 60, 90 and then 120ml. The remaining 4 bottles are done at 120ml. If he exceeds that rate of infusion, he gets nauseous and very bad headaches. For my husband, IVIG alone did not do the trick and he also takes an immuno-suppressant (Methotrexate). He was also taking Cymbalta for pain management. Keep positive. IVIG is there to help you!
Hi Katyjust. It's obvious you already have had your IVIG treatments. It sure is boring, isn't it? I think sitting in an oncology unit frightened me more than the infusion. I'm sure you're really frightened, just as I was. It's important to stay as level headed as you can. It's also more important than ever to look for positive ways you can improve you life versus getting too caught up in to being ill. I know that is so much easier said than done, but with practice and time, you can do it. Every year, I've found myself using a walker, however, I have also found myself jogging at some point during those same years. It sounds crazy, but it's true. So, during those periods that I'm hospitalized and someone is cutting up my food, I remind myself that the illness eases up greatly for me, at times.
LOL - The REALLY scarey thing for me is the needles! Last week I had a beginner on the job - but they were so good I had to rate it as the best yet! So - scary is relative. Sitting next to someone having chemo is also a lesson in relative - CIDP might be a trial but at least the treatment does not cause your hair to fall out and our outlook is far more positive.
So - Katy - take your entertainment - (be scared of needles) - and be positive. Sometimes the best you can expect is that you will not get worse (and even that is great) - but others will tell you that they have got a lot better and others that they experience highs and lows - we are all different. Live the moment!
I myself am due for my IVIG tomorrow morning at 8:00am and plan to entertain myself by taking my notebook computer with me. I know by the time I get home all I’ll be able to do is sleep until Wednesday sometime.
Michael, I've lost about 50% of my hair. So it is a side affect. Some people do lose some of their hair. No bald patches. However, it came out. It has always been thin, but very thick. Not any more.
Springmang, I took a book; magazine; my laptop; in the beginning think I could work. I could not because w/the blood pressure cuff going off every 15 minutes and them coming by all the time, I could not concentrate. But that is me. I was in an open room that was a huge square. We were along the wall and the nurses station was in the middle; each "station" had a tv and we could have ear plugs. I don't like those so I would have "cc" and have it on a low volume; but how to you even watch a movie with all of the distractions. The benadryl and morphine shot could not even knock me out. I would talk to some friends on the phone and watch game shows in the background. Again, that was my experience. I did it aug. 2010 til June 2010. I am going back to the diagnosing neuro Sept. 6. I may start them back up. I know I am worse.
We are all different. Good luck all.
tcwlkr said:
Michael, I've lost about 50% of my hair. So it is a side affect. Some people do lose some of their hair. No bald patches. However, it came out. It has always been thin, but very thick. Not any more.
That is rather unfortunate - have not heard of that before - still got mine so score another lucky point for me.
Springmang, I took a book; magazine; my laptop; in the beginning think I could work. I could not because w/the blood pressure cuff going off every 15 minutes and them coming by all the time, I could not concentrate. But that is me. I was in an open room that was a huge square. We were along the wall and the nurses station was in the middle; each "station" had a tv and we could have ear plugs. I don't like those so I would have "cc" and have it on a low volume; but how to you even watch a movie with all of the distractions. The benadryl and morphine shot could not even knock me out. I would talk to some friends on the phone and watch game shows in the background. Again, that was my experience. I did it aug. 2010 til June 2010. I am going back to the diagnosing neuro Sept. 6. I may start them back up. I know I am worse.
We are all different. Good luck all.
My facility has semi-private booths and is usually very quiet. They come around with light refreshments (tea/coffee/etc) so with nice lay-back chairs, pillow and blanket you could have a snooze if you wanted. I just take a book but have seen others with games, crosswords, DVD players and laptops - must ask if they have wireless..... Isn't it interesting how we all have different experiences?
Different, but basically the same. I download what I want to read for the day, or artwork I have to work on prior to my treatment because they have wireless, but it’s not free. SOB. Gary
IVIG is the least invasive form of treatment for the disease, which makes it more popular than, say, plasmapheresis. Aside from a needle stick, long boring days, that's pretty much the extent of the treatment. As always, I would reference your treatments and condition in several places so that you can get a balanced idea of what is and isn't going on or going to go on so-to-speak. Although meaning well, there is information that can not be referenced. What jumped out at me, and I mean no offense, but was that 'hair loss' can come from IVIG infusion. High stress and worry can cause hair loss, even major hair loss. However, I have never seen any reference over the years that hair loss can or will happen with IVIG infusion or in conjunction with IVIG infusion.
HI, I JUST WANTED TO ADD TO THE HAIRLOSS. I HAVE TO SAY MY HAIRLOSS QUIT BY STOPPING THE PROGRESSION OF CIDP. SO ONCE I WAS ON A REGULAR SCHEDULE OF IVIG 2 X /WEEK OF 35G GAMMAGUARD THE HAIR STARTED REGENERATING. BUT YOU CAN LOOK AT EACH INDIVIDUAL HAIR AND SEE DIFFERENT THICKNESS THROUGHOUT. MY HAIRLOSS CAME FROM MY BODY BEEING SICK AND NOT GETTING ENOUGH HELP, ONCE I HAD BEAUTIFULL THICK LONG HAIR AND I LOST ALSO AT LEAST 50%. THE HAIRLOSS FINALLY STOPPED IT TOOK ABOUT A YEAR. I HOPE THIS HELPS.
I was on IVIG for a little over 4 years. I went on sub-q last Dec. In either treatment, I did not lose my hair, however, it is so dry and brittle it is pathetic. And I was always the kid who had to wash my hair every day, no conditioner, etc. Now, I go to the beauty supply store for professional grade and it still very dry. Everybody reacts differently, and also being stuck in with Chemo Patients (not for IVIG but for Iron and/or Blood) was really hard on my emotional and mental status. Take on day at a time, and I am to the point I live for the day......
Take Care!
Nana, My hair needs to be washed everyday. But reaching up and feeling 50%-70% less of what USE to be there is hard to handle. But I'm sure not as traumatic as losing it all. We all have our crosses so to speak. I do HIGHLY recommend the Aveda products. A little expensive, but they are one of my few splurges. And trust me, with the expenses, I don't allow myself many. I am on cellcept now; lost a little more w/that (1500 mg/day) ... discussion of upping it to 3k mg/day. I don't think my body can take that much. but like you, 1 day at a time.