I sympathize with tcwlkr - I hate needles.... but my BP and veins are good and I do not need any of that other stuff. Apart from the "hate needles" bit - the actual IVIg process is just plain boring - so I take a book. After IVIg I get a little nauseous (quick food after IVIg helps a lot) but the result has been worth all that - CIDP has (apparently) stopped getting worse and there may be minor improvement. I was also certain by the end of the first month before the next round that just perhaps there was a slight down - so I actually looked forward to the next needle!!!
I get the picture that we are all different and some have terrible extra complications but if IVIg is not beneficial (the word my specialist used) then you would be the rare case. Go positive - things could be way worse - just ask the people on chemo! CIDP is just plain nasty - what they have is not only nasty but potentially terminal.
My BP is controled, however, IViG affects it Michael. That is why, under MY doctors, they monitor it every 15 minutes. And according to my nurses at Northside, it is not uncommon for IViG to affect anyones BP. High and low. Mine is usually 120/74. I’m just on Cellcept now, which is just supposed to replace IViG. I Have bad veins, period. I think this is a forum to prepare and that is what she asked for. If she is like you with great ones, that is wonderful. I was diagnosed Aug. 2010. Started IViG Oct. 2010. 5 day a week once a month and the 2 times a month in May of this year. Cellcept started in December. And I run 3 businesses; lost my husband, my best friend, and a top client. I think sharing the ups and downs is the purpose of this site. I also lost my diagnosing neuro; have gone through 3; my pcp at the time; and am on my 4th. I have reseached this disease in and out. I own a health care market research company and was one of the companies that Johnson & Johnson hired during the tylenol scare in the '80s to revamp their image.
WOW - Your point about sharing is great - and your share is EXTRA special because some of us will get the message about just how lucky we are (and they did start me slow and check my temp, pulse and BP regularly at first - now just twice a session because - again how lucky - mine stays A-OK).
For the record - I am currently on 40g Kiovig per session.
tcwlkr said:
My BP is controled, however, IViG affects it Michael. That is why, under MY doctors, they monitor it every 15 minutes. And according to my nurses at Northside, it is not uncommon for IViG to affect anyones BP. High and low. Mine is usually 120/74. I'm just on Cellcept now, which is just supposed to replace IViG. I Have bad veins, period. I think this is a forum to prepare and that is what she asked for. If she is like you with great ones, that is wonderful. I was diagnosed Aug. 2010. Started IViG Oct. 2010. 5 day a week once a month and the 2 times a month in May of this year. Cellcept started in December. And I run 3 businesses; lost my husband, my best friend, and a top client. I think sharing the ups and downs is the purpose of this site. I also lost my diagnosing neuro; have gone through 3; my pcp at the time; and am on my 4th. I have reseached this disease in and out. I own a health care market research company and was one of the companies that Johnson & Johnson hired during the tylenol scare in the '80s to revamp their image.
It can change . . . IViG can change it at any minute. I am a positive person. I am only 47. CIDP will change on you. One minute my BP was normal then 190/110 then normal. then the other extreme. I was taken off it a month ago. had extreme withdrawals. Was it the right decision . . I don't know. Kaiser is going through so many upheavals . . they say because it is a blood product, i should not have any.... but at the same time they increased cellcept. they talk out of both sides of their mouth to cya.
I agree with this as well. My BP would flucuate and another thing that happened to me was that it messed up my white blood count really badly. Mine went down a lot. For the first few treatments, they hospitalized me for the entire treatments because I would spike a fever of 102.5 and my white count would drop really low and my platelets would go crazy. So my neuro would not do them any place but inpatient and even then they would do two, skip a day, then do the other three. They finally did them in the day hospital, kept me all day, and sent me home. That sucked, though, because I was driving home at midnight sometimes. The last go round, I did start a rash after the final treatment, day three afterward. And as I understand it, if you get a fever and have that reaction, you do with all that you do going forward, hoping that they will lessen. IVIG can help a lot but I think that my Dr. had to weigh the benefits against the effects on me. He decided that I would have no more.
OH Yeah, my veins were beat up really badly as well. I lost both breasts to cancer in 2004. They took both due to family history, having had a lumpectomy in the left one in the past, which increased my risk, but the cancer was in the right side. I lost lymph nodes on the right side, so use of my right arm is very, very limited. I let them use it one time and the vein went hard, developed thrombosis and that was it. Never again. That was another issue.
tcwlkr said:
It can change . . . IViG can change it at any minute. I am a positive person. I am only 47. CIDP will change on you. One minute my BP was normal then 190/110 then normal. then the other extreme. I was taken off it a month ago. had extreme withdrawals. Was it the right decision . . I don't know. Kaiser is going through so many upheavals . . they say because it is a blood product, i should not have any.... but at the same time they increased cellcept. they talk out of both sides of their mouth to cya.
Hi All, I get puzzled by all the comments because I am pretty happy at where I am. I dont get much pain and remain pretty active . I see a lot of you seem to be on smaller doses if I interpret correctly. I have 500g every 4 weeks have no tolernace problems and feel great after it.I usually have it early in the morning so if I stay up later the night before I tend to sleep for most of the 3 to 4 hours I am at the hospital.The only thing I have noticed recently is the I tend to have geater mood swings and sometimes find my self feeling really cranky and dont seem to know any reason why. A small price etc.
I also am lucky to not have any major side effects from IVIG. I have been on 35 grams every 21 to 28 days and am holding just fine. My symptoms of CIDP have been halted when on IVIG. So for some it does work very well.
I have had 4 IVGG treatments.I get one a month of 50 gm. This month is the best I have felt in A year and a half. The numbness in my legs and feet has decreased and my legs are much stronger.I was getting lasts exchange monthly for a year before the Ivgg. You should try to stay positive and realize that there will be ups and downs . Every case is different but I am getting better each month ! Good luck.
Kitty....I'm thinking about you as you start IVIG tomorrow. I'm new to this also as I just started it Nov. 2011. I was expecting big things to happen really fast, which did not happen with me. I had started having balance issues in addition to the pain, numbness, and shooting pains. The balance issues are MUCH better now. It has been a slow process with me. One of the members of this group said something to me that has stuck with me in this process though. IVIG is keeping the disease from progressing....which is huge. IVIG affects all of us differently, we just have to be patient and give it time to work. One thing I have noticed with the treatments is that you have to drink tons of water to flush it out of your system. Good luck and please keep water by your side as you go through the initial treatment. The initial loading treatment is the hardest, so please do not give up. You have friends here and we will answer any questions you have. Just try very hard to think "positive" and take it one step at the time.
No side effects here with the ivig, but no improvement either after the initial 3 day loading and 2 monthly infusions of 40g. I keep praying the pain, weakness and balance problems will go away and like to think the infusions are preventing further damage at least.
Ok. I need to find the dosage of IVIGnthatbi am taking. The first Neurondoc was the one who did the initial kloading of 5 infusions he was very conservative and did two times of 5 on an 8 hr drip while I was hospitalized. Then I went for 4 weeks and had 2 more as outpatient for 2 days with an 8 hr drip. Due to a miscommunication at his office ( the receptionist thought I was asking to have IVIG every DAY, which I wasn’t , the doc referred me to another Neruo
Hi, i feel with you, because i had a simular situation. there are not many specialists out there that know what they are doing when it comes to cidp, the referal might be a blessing, maybe you get to see a cidp specialist. i would do some research now about the docs you see, what is specialized in.... Good luck, don't be intimidated by a neuro. It take a special personality to be a good neuro. By the way i am on gamunex c 1 x /week 35g and i am going to get reevaluated on thursday. In my surounding area everybody in the medical field knew about GBS, but knowone knew about cidp, be carefull that your treated accordingly so you don't have longterm damage like me.
Toni King Roberts said:
Ok. I need to find the dosage of IVIGnthatbi am taking. The first Neurondoc was the one who did the initial kloading of 5 infusions he was very conservative and did two times of 5 on an 8 hr drip while I was hospitalized. Then I went for 4 weeks and had 2 more as outpatient for 2 days with an 8 hr drip. Due to a miscommunication at his office ( the receptionist thought I was asking to have IVIG every DAY, which I wasn't , the doc referred me to another Neruo
As you may have determined…not only do I have CIDP, but I am a
So very low tech and lose many replies to cyberspace.
Carli said:
Hi, i feel with you, because i had a simular situation. there are not many specialists out there that know what they are doing when it comes to cidp, the referal might be a blessing, maybe you get to see a cidp specialist. i would do some research now about the docs you see, what is specialized in… Good luck, don’t be intimidated by a neuro. It take a special personality to be a good neuro. By the way i am on gamunex c 1 x /week 35g and i am going to get reevaluated on thursday. In my surounding area everybody in the medical field knew about GBS, but knowone knew about cidp, be carefull that your treated accordingly so you don’t have longterm damage like me.
Toni King Roberts said:
Ok. I need to find the dosage of IVIGnthatbi am taking. The first Neurondoc was the one who did the initial kloading of 5 infusions he was very conservative and did two times of 5 on an 8 hr drip while I was hospitalized. Then I went for 4 weeks and had 2 more as outpatient for 2 days with an 8 hr drip. Due to a miscommunication at his office ( the receptionist thought I was asking to have IVIG every DAY, which I wasn’t , the doc referred me to another Neruo
This referred Neuro is fantastic. He is Neuro/autoimmunine certified. I now have 5 infusions spread over 3 days with a 3 hour drip and I have only had side effects from the steriods given prior to the infusions. Steriods make me rather wild-eyed and I have been cleaning out laundry room cabinets at 2am at my mothers house, from a wheelchair! We cut the steriods in half last time and the same thing happened.
So I will just deal with 3 nights of no sleep. Someone mentioned BP issues. I have high Very high BP while I am taking the IVIG…sometimes they slow it down and I take an extra BP pill. Last week I called my family doc and he prescribed an additional hot shot BP pill like my 83 yr old mother takes for spikes in her blood pressure, like when I try to get her to spend some of her money! The directions on my new BP pills are to take one, one hour prior to IVIG.
Toni King Roberts said:
As you may have determined…not only do I have CIDP, but I am a So very low tech and lose many replies to cyberspace.
Carli said:
Hi, i feel with you, because i had a simular situation. there are not many specialists out there that know what they are doing when it comes to cidp, the referal might be a blessing, maybe you get to see a cidp specialist. i would do some research now about the docs you see, what is specialized in… Good luck, don’t be intimidated by a neuro. It take a special personality to be a good neuro. By the way i am on gamunex c 1 x /week 35g and i am going to get reevaluated on thursday. In my surounding area everybody in the medical field knew about GBS, but knowone knew about cidp, be carefull that your treated accordingly so you don’t have longterm damage like me.
Toni King Roberts said:
Ok. I need to find the dosage of IVIGnthatbi am taking. The first Neurondoc was the one who did the initial kloading of 5 infusions he was very conservative and did two times of 5 on an 8 hr drip while I was hospitalized. Then I went for 4 weeks and had 2 more as outpatient for 2 days with an 8 hr drip. Due to a miscommunication at his office ( the receptionist thought I was asking to have IVIG every DAY, which I wasn’t , the doc referred me to another Neruo
The dosage is based on your weight. And you have to stay very hydrated. It is a complicated disease. As you are probably finding out, doctors don't like "not knowing." You know the difference between God and Doctors? God doesn't think he's a Doctor. The can't stand not knowing about a disease. A VERY good source of information in your pharmacist, btw.
Dear Kitty I have been on IVIG for five years now. It took a while I was in rough shape when I first started. I get infusions every 21 days and am doing so much better. Hang in there it helped me I wish you the best. Chuck B.
Dear Kitty I have been on IVIG for five years now. It took a while I was in rough shape when I first started. I get infusions every 21 days and am doing so much better. Hang in there it helped me I wish you the best. Chuck B.
Dear Kitty....my long term goal is to go 5 years without any treatment and i will be classified with the 11% who are classified as CURED. I get my #30 through 34 next week on a three day plan wtih 5 infusions on a 3 hr drip. Today, i really feel great with ALL the symptons of CIDP totally confined to me feet....all from the ankles down. With a little bit of pain meds, I don't care that my feet hurt. Hopefully the next set of infusions will make ethe CIDP blow out through my toes and I won't have anything until the next IVIG ......this may be a fairy tale, but sometimes fairy tales do come true........just ask Cinderella....My doc is hoping to try to spread the infusions out past the every 4 weeks that I am now on. I have gotten a prescrip for some high powered blood pressure pills that I am to take one an hour prior to the infusion. In the past, my BP has gone pretty high only during the infusion. Right before it is fine and right after, it goes down. We are hoping these new super pills will eliminate that. The steriods given to me pre-treatment make me nutty and unable to sleep more than two hours each of the three nights. We cut them in half last time, but same thing happened. I will just deal with the side effect of no sleep for 3 nights and crash and burn over the weekend sleeping the sleep of the dead!......you will do just fine.
Chuck B. said:
Chuck B. said:
Dear Kitty I have been on IVIG for five years now. It took a while I was in rough shape when I first started. I get infusions every 21 days and am doing so much better. Hang in there it helped me I wish you the best. Chuck B.