Had my first HOME IVig …
AnonymousAugust 11, 2008 at 1:00 pm
The nurses came Friday afternoon. Of course, it took a while for them to get the IV in. I’ll leave all the little details out but here is the one that I want to talk about. I got one bottle of gammunex…20grams. They said the dr wanted to start off small b/c I’d reacted before with the menningitis headache.
Ok, so, be that as it is. It’s not enough and wont do me any good. Or is it ? I dont feel any difference at all. I had the usual after infusion pains in my legs and was better by the next day. But no magic go- go juice here. I didnt expect anything for several treatments anyway…I’m not disappointed about that. It’s the amt that concerns me.
I called to follow up with the neuro…she said another treatment in four weeks. I told the nurse that I didnt think 20 grams is enough and that in the past I had gotten like three bottles. She called back and said the dr figured according to my weight and will do 40 grams NEXT time.
Does this make sense or am I missing something here…maybe I should go back to the other neuro that didnt want to do any treatments. If I’m only getting a small amt of IVig that wont do any good, why not save it for someone it might help.
I’ve got alot going on yet once again…I’ll save it for another day. Right now I have to focus on a good week. My baby starts kindergarten Friday. I could cry right here !
Just wanted to share this latest…… a never- ending, one- thing- after- the- next crap.
Happy Monday ?
August 11, 2008 at 1:21 pm
Happy Monday indeed!!!
You started treatment, AND you know you need more than you are getting. That is a huge step from where you were even a few months ago. Maybe 20 grams every 2 weeks would be ok AFTER you were stabalized with a few loading doses. But now as you mention 20g every month really is not going to put a dent in it. Kevin weighs 121 and got 100g, 25 each day over 4 days once a month. now we are reducing and he gets 90g over 4 days. We will do this for a while and reduce slowly again. Can you beg the doc to try the loading dose protocol for your weight for 3-4 consecutive months? Is it possible tha you could ask him to try it your way and if it does not work, try something else? If he is not open, I guess you would have to switch. Can you ask the home health co. for the name of any other doc that they get prescriptions from and maybe try them. I want to come over and give you a hug and tell you chin up and chest out!!!!
About the kindergarten thing, I cried more than my kids. So I started volunteering and that way I could see them. I still volunteer. How sick is that!!! I am wrecking my boys, they are going to grow up to be momas boys!!! (I’m not that bad!!)
have a better day!
Dawn Kevies mom
AnonymousAugust 11, 2008 at 1:25 pm
Stacey, I can’t respond ot your IVIG questions as that is not my expertise and others here are more qualified to answer. I can say I remember what it was like taking my youngest son to kindergarten. It was so hard to let go. Add in that he didn’t want to go made it that much harder. I hated every moment that day, while at the same time being so proud of him as he got on the school bus. (It’s like a right of passage to ride the bus….heaven forbid that you would drive him in! someone might see!) Anyway, it is tough and lonely in some respects, but my mom always used to say, “don’t mourn these steps….celebrate them!” She always told me that if you do your job well as a mom, teach your child everything they need to be successful and self sufficient, etc. then you can let go and not worry nearly as much.
I still worried, but I would remind myself of all the things my children knew and could do and that helped a lot. I would remind myself of mom’s words….and I still do today when something happens in my grown kids lives that causes me worry. Connor will be okay and so will you! You sound like a super great mom. Hang in there Stacey. Will think of you both on Friday.
AnonymousAugust 11, 2008 at 2:05 pm
Hi Stacey –
I’m SO glad that you got your IVIG finally! It’s a step in the right direction. Emily has had the leg pains during her infusions before too. We stopped pre-medicating with Tylenol & instead use Motrin now. Since we switched she hasn’t had the leg pains anymore. It might be something for you to think about.
As for any fear that you might have a reaction, can your dr order a small dose of steroids to pre-med you with? I don’t think you could use Motrin then though because it’s an NSAID. NSAID & steroids do not mix.
I have to agree with you that 20 grams isn’t going to do anything for you. I figured out the dosing for Emily who gets 20 grams every 3 weeks. She’s 53 lbs & it equals out to be something like .5 grams per kg. I’m assuming you weigh much more than Emily does.
I think you should try to talk with the dr yourself – stay away from the nurse completely & point out your worries. Arm yourself with as much info as you can before speaking with the dr first. Figure out how much IVIG a 1g per kg dose would be then figure out how much a 2g her kg dose is. Divide that by 5 & ask the dr to give you that amount.
If the dr did the math & says you should get 40 grams of IVIG then that’s probably what you should get per day for 4-5 days.
Tell the dr that you would be willing to get the IVIG at a slower pace to try to ward off any reaction. That might help convince him too. Also, some dr’s want to give women the loading dose every other day instead of consecutive days. Apparently this helps with any adverse reactions. It might be something you want to bring up to the dr as well.
I know it’s hard to convince the dr to give IVIG. I had the hardest time with Emily’s dr in the beginning. But I did the research, went into his office armed with information & let him know that I knew what I was talking about. To this day, he pretty much leaves the dosings up to me because I’ve proved myself to him.
Sometimes dr’s just need a kick in the butt. I wouldn’t switch back to the other neuro at this point. You’ve got this one at least willing to try the IVIG. He just needs some gentle coaxing to get it right.
AnonymousAugust 11, 2008 at 5:36 pm
Are you getting Gammagard? I’ve been told it is the least likely to cause a meningitis reaction. That’s what I use and I now take 20mg prednisone on treatment days to stave it off. I still get a headache for a few days but it’s not meningitis, just a headache. I understand your neuro’s caution re: the reaction but I typically don’t show a reaction until I’ve had at least 45 grams in me, usually two days into the treatment. I’m not sure 20g is enough to tell whether IVIg is helping you OR whether you might get a meningitis reaction. I think 40g is a better bet and you might ask your neuro to have a script for prednisone in case you need it.
Good luck and stick with it for the long haul, it takes awhile before you notice things are improving. I think the go-go juice feeling I get/got from the IVIg is the reduction in inflammation – the release from the constant attack. I think that now my immune system isn’t gearing up as much as it used to so I don’t feel such a huge surge of energy anymore. Nevertheless I see constant improvements now, little ones, but they are there!
AnonymousAugust 11, 2008 at 5:51 pm
quality of IG product, how that is handled[the last batch I’d gotten delivered to my home had ice crystals in it?-got another non-icy batch that nite] and most importantly – HOW it is DELIVERED into YOU! That means rate. All three of these aspects are very key to getting a safe product and then into you safely.
As for ‘improvements’? Gee at 20g I really can’t say-does sound stingy to me…I get soo much more than most it does truly make me feel guilty, but when I get IT I feel usually so much better and can make it thru the next few weeks till the next one. Some s/e’s rite after, but, in the long run? Well worth it!
It truly sounds as if your doc is not only being conservative, but ultra-super-conservative in his dosing…Maybe he is aware of what the ‘allocations’ some reps on cafepharma speak of? I really don’t think so tho- it all sounds like lots of blather there. I do know that in one instance where my own pharmacy ran short..they traded off stuffs with another area pharm. to get what I needed. So THAT should not be an issue-with a good pharmacy supplier. Once you are IN to the IVIG acceptance mill…well you are IN! The rest of the haggling will be between your docs’ office and the insurance company. Seems like some docs have access w/no problems to the stuff and others? well… I guess it’s a dark doctor practice secret or something. I don’t want to know nor should I have reason to rite now. I hope that won’t be an issue for you EVER for sure!
Just be quiet now and then now and ‘listen’ to your body…it mite just be telling you that some very subtle things might be different. For some, like me, the changes were noticable right off; for others it takes several times to get to ‘kick in’. It is usually teeny things? Like your toes don’t feel as if they are curling up quite as much or that you suddenly find yourself not listing one way quite as much as you walk…you will know what I mean if/when it happens. And I sure hope it does and soon!
I have to ask tho – home ‘nurses’???more than one? Is that because of past reactions?
Just some hopeful hugs that things mite even SEEM better if not really? Be careful about sorting all out. But, still – you are IN the mill and it can only get better! That is the way I’ll be hoping for you!
AnonymousAugust 12, 2008 at 4:00 am
😀 I cried when my first child went to school and did with the last two. When they graduate from high school you start the crying again. Then if they graduated college more tears fly. Then when they have the first grandchild you see tears again. The beginning stages of mother hood and it really never ends. LOL!
Hope your treatment starts working soon and the treatment makes you well soon.
AnonymousAugust 12, 2008 at 4:57 am
HI there Stacey,
well you are doing well even contemplating letting your son start kindy,!!! My kindy rang last week and i told them i wasnt ready to let my baby (last of 3) start yet, why do i want to rush her growing up!!!!!!!!!!. Hubby thinks im mad but what the heck i love having her around and we do lots of cool things all the time, AND she still sleeps in pm (during Kindy hours) so i would be mad to disrupt that just to make more pick ups and drop offs eh?? She is well socialised with having older siblings etc and before long she wont want to be hanging out with me so i am making the most of it!!!!! I dont care about being selfish, that is why i have children, to enjoy them.
Re the ivig, ditto to everything else everyone has said. Sounds very skimmpy to me, talk about rashions!!!!!!!!!
Hope it gets sorted for you
all the best
AnonymousAugust 12, 2008 at 8:08 am
I’m pretty sure it was gammunex but I will check the book. I had two nurses b/c one never did the intake of a new patient. They were only both there for a while until the iv was finally started and paperwork completed.
My first neuro was very aggressive with the IVIG….always doing the five day loading doses even after the terrible reaction the first time after day four. I truly believe now, after learning so much from you all…that was b/c the nurse at that hospital was infusing me way tooooooo fast. All infusions after that were at another facility and much slower…oh and also the first loading dose with the reactions…that was stuff they had to mix ….everything since has been in the bottles.
This neuro has a different approach for sure…wants me to have treatment regularly but just not very much of it. I just really hate to waste the ivig.
But, I’ll keep my next appt for four weeks from now and then suppose to actually see the dr. I’ll talk to her in person and if she really thinks that such a small amt should work, maybe I’ll call the old neuro and tell him I want to do ivig and I want to do it at home so get me set up. How’s that for demanding. ha.
Like I say, the first neuro was very aggressive with treatments but then the last two times I saw him he wanted to do the wait and see approach. I told him I was worse…not alot but a little and still he wanted to wait.
I was looking at hotels in Scottsdale, AZ…a place I used to travel to about three or four times a year…BC…(before Connor). I’d go with my sister mostly and then went with my husband before we were married. I’ve been thru alot this year and really want to get away. Would love to plan a trip…even if for just the weekend. The Hyatt Resort in Scottsdale is heavenly !
Right now the rooms are 400 to 500 bucks a night. OUCH.
I talked to my sister about all the fun we had and realized how much my life has changed. I thought about how I am really am unable to do so much…the walking mostly. And, well all the beer we once consumed. But, physically, ten years later, here I am. I’m in bad shape. I WANT treatment and I WANT to get well.
I sure as heck dont want to get worse. I want to go back to Cancun and play in the ocean. I want to walk up and down stairs without holding on. These are things I want for myself…not to mention what I want for my son and my husband.
I guess I’m saying…if this neuro is gonna be skimpy, I’ll be moving on until I find someone that will help me help myself.
Three days till kindergarten……:eek:
well wishes everyone,
August 12, 2008 at 11:09 am
In was wondering, what made you bring up Arizona? If you can go and swing it, I am 99% sure there is a clinic there that specializes in cidp/gbs, I think the doc is on the board. Call the foundation and maybe they can hook you up. Maybe you could kill 2 birds with one stone!!!! I bet the doc would work w/ your doc regarding the long distance. It is worht a try if it is possible. I know you are going to figure this out. It is Stacey’s turn!!!
Dawn Kevies mom
AnonymousAugust 12, 2008 at 1:01 pm
Dawn, I brought up Arizona b/c I spent all afternoon yesterday looking at hotels/resorts. It was still on my mind and thinking about how much my life has changed since I was there last. I’m trying to plan a get away. I know they have the mayo there…but, I want to get AWAY from it. We’ll see.
Scottsdale is where I want to retire to. At least, it used to be my dream.
September 2, 2008 at 10:34 am
I’ve been diagnosed since 1996 and have been on every treatment protocal used for CIDP and some outside the box, the most recent trial was Tysabri, the MS drug. After 3 months I saw only decline in my condition so the neuro decided tho give me a PE one week prior to Tysabri, and IVIG, 20 gr the day after the Tysabri.
The day after the IVIG (which was used without success when first diagnosed) I noticed a few tingling sensations in my legs and some slight muscle twitching. I had a several day “surge” of energy, but attributed it to the PE and IV Solumedrol. I had another low dose of IVIG again on Thursday(with no PE) and have again experienced some additional tingles and twitching in my leg muscles, along with an energy surge that is still with me.
Has anyone else experiened this and could it be a sign that the IVIG is working? My neuro says that since it did not work in 97, it can’t work now. Has anyone gone off IVIG to another treatment and returned to IVIG with success? I’m thinking of asking my neuro to consider a higher dose or a more frequent lower dose od IVIG for a couple of weeks to see if this perceived response is real or not. His current plan is to return me to PE with IV Solumedrol once a week.
Any thoughts are appreciated. Thanks,
September 2, 2008 at 5:28 pm
As of late, I have been wondering if pp should be administered and immediateley followed by ivig. How far apart were your ivig treatments? I personally think that just because it did not work the first time, you cannot disregard it! perhaps they were not close enough or maybe enough was not given. Could you ask for pp and ivig? Good luck, keep us posted
Dawn Kevies mom
AnonymousSeptember 2, 2008 at 9:04 pm
I get 45gms. every 3wks. Dosage is weight base figured. So if he is going to increase your dose to 40 gms then thats an okay maintance dose. When I get mine they only infuse @ 50cc/hr. so I am at the clinic for 7-71/2 hrs. It is a long day but if they infuse it any faster I get sicker than a dog:(
I tale Tylenol & Benadryl 2 days prior & 2 days post infusion to prevent side effects. Oh! I also drink lots & lots of water :rolleyes:
Good Luck & Hang in there because I don’t feel any miricles after infusion but I do feel better 🙂
Take Care Stacey
AnonymousSeptember 4, 2008 at 4:43 pm
It has been a while since I have been in touch and I just wanted to say hello and WOW, have you been through the ringer! So sorry. I am glad to see you are getting treatment and am glad to hear that if you are not satisfied with this new doc. you will keep persuing. Good for you. You really hit me when you talked about what you were capable of doing just 10 years ago. I have been doing that same comparison and man can it be sobering. I just keep looking at the day in front of me though and trying to let go of the rest. It is definitely not easy. Hang in there Stacey, cause everything is guarenteed to change. It always does. It’s just a matter of how we look at it. I hope you get to go away. Take care and lots of kisses to the kindergartener! He is so darn cute!
AnonymousSeptember 5, 2008 at 10:44 pm
Thanks Linda !
I had another home tx today. I feel like crap tonite. I went to Target to get a bday present for a party that Connor has to go to tomorrow and I just wanted to lay down in the middle of the store a few times.
Home now and waiting for some laundry to finish.
I think about trying to take things one day at a time…live in the now. Problem is , I dont like the now. I’m working on getting better …a better mentality. I’ll get there.
I’m tired…watching Nancy Grace…I’ve followed that since little Caylee was first reported about. So sad.
have a great weekend.
September 6, 2008 at 9:24 am
YOu will get there Stacey, Kevin and I are at the platform of that train station, we are alsmost there. We just have some bumps along the way. Once you get the right ivig regularly, you will be at that place with us!!!! Check symposium thread.
AnonymousSeptember 6, 2008 at 2:26 pm
thanks Dawn…I know I’ll get there. I hate the up and downs and I hate the actual acceptance. Sometimes I think I am still struggling with denial.
Then, I pull out the cane to walk my son into swim lessons and reality smacks me right in the face. I cant walk that far without help. Dammit anyway.
off to a party….meanwhile, Im going to shop somewhere…THAT always helps.
AnonymousSeptember 7, 2008 at 5:06 am
I have been watching the Nancy Grace Show too about that Caylee Anthony girl and boy is she a trip! Or tripped out on something. Something very strange about that girl! I just don’t see any emotions in her at all! If somebody took my baby I would be freaking out and going to the police the very day it happened.
Guilty or not guilty.. she just does not seem to be too caring over the loss of her daughter. Dead or alive. I would be grieving my brains out. And would be telling the police every thing I knew!
Too me it makes her look guilty! Between Drew Peterson, Anna Nicole and now this Cassie Anthony case! Those have been the good ones watching so far! That Nancy Grace is something else! She’s pretty good! I like watching Glen Beck too! He has some good ones too!! Hope you feel better soon!
AnonymousSeptember 7, 2008 at 9:16 pm
Yes, Nancy Grace is something, isnt she. My hubby thinks she’s so obnoxious…and, I guess she is..but I just love her. Poor little Kaylee. I dont understand. And, like you, if it were mine, I’d be a nut case. I dont even want to imagine.
hope you’re doing well.
take care everyone.
AnonymousSeptember 7, 2008 at 9:30 pm
i guess I’ll give an update while I’m here. I had my IVIG on Friday. Did 40grams, which, still, I dont believe to be near enough. I”m just going with the flow at the moment with this dr.
I didnt have the usual pain that I get after treatment, but had some pretty bad fatigue Fri night and today. Yesterday, Saturday, I did pretty good. It was a full day of taking my son to swimming lessons, came home and watched a bit of the Huskers, then took Connor to a bday party and while he was there I went shopping. Afterwards, I picked up Connor and we went grocery shopping. Came home and we grilled out burgers and I did a bit here and then but mostly rode the couch.
Today, Sunday, I got up way too early, as I seem to always do anymore. Why cant I sleep ?
Something has been telling me to drive by my moms house. I used to drive by every day. So, I went to see my cousin that lives right down from where my mom lived. I was so happy I drove over there. The new owners FINALLY did the hedges and yard work and it looks so much better. My mom was very particular with her yard. Anyway, I was relieved to see they were doing what they need to do and had a nice visit with my cousin for the afternoon.
Then, I came home and cooked home- made chicken and noodle soup. After we ate, cleaning up the kitchen took forever and I really struggled to get it done. In between, I got Connors stuff ready for school, tended to some laundry and just dragged to get thru it. Bad. It seems like the fatigue is ten times worse than it’s been in a very long time. Doesnt make me hopeful…but, not giving up. Just tired.
I may play hooky one day this week…maybe tomorrow…Connor’s bday is Wednesday and we’re having his party here on Sat…I invited 11 kids. Afterward, a few family members will be here to watch football. Not everything is done since we’ve moved in. Now I’m down to the last minute scramble and want alot done…I cant do it and it’s frustrating. I can clean and organize tho…as much as I can, but I am afraid if I stay home tomorrow, and still having fatigue, it will be a day wasted.
sorry, I’m rambling.
gotta go fold some clothes and somehow drag myself upstairs to get myself ready for tomorrow and Connor to bed. I could lay down right here and not get up for days. That’s how it feels anyway. How do we make this go away?
Rest ? Yeah, right. How and when. ho hum.:rolleyes:
Hope everyone has a good week.
September 7, 2008 at 11:49 pm
Hello on a big telephone girlfriend!!!!![SIZE=”7″]Of course you are tired!!! I’m tired just reading it!!!![SIZE=”2″]YOu are a super woman. We have lot’s in common! I can’t wait to meet you. BTW, TAKE IT A LITTLE EASIER. I promise I will too!
Your friend Dawn[/SIZE][/SIZE]
September 7, 2008 at 11:57 pm
Sorry the font was so big, I just discovered you can change it!!! I am not the sharpest tool in the shed when it comes to computer stuff. But I did want to make it a little bigger, just not that obvious!!! Sorry!!!! Have a good night! BTW, did the Bears end up winning? I had to help Kevie finish up some homework from the week he missed last week. Make sure you take that hooky day and make sure it really is a relaxing hookie day, Kevie feels the ivig affects a couple of days later, you might too!
Sweet dreams my awesome mommy friend!
AnonymousSeptember 8, 2008 at 11:14 am
Stacey, Two parties coming up?-just swish a rag around and run the vacuum, caus you are going to have to do them all over again, when the people are gone…..I agree with Dawn, I get tired reading about all you have done. When I get my ivig every 2 weeks, it seems like I am tired for the 1st week after and then when I feel good, it’s time for more ivig. But having it at home has really worked out better for me. Good luck on your parties. No one is expecting you to have it perfect-if they are, boot them out the door!!:)
AnonymousSeptember 8, 2008 at 11:35 am
I’m with Emma. I used to clean my brains out before people came and then I would have to redo it after they left. I am smarter now. I do a “surface clean” and make it look tidy, but I do a major clean when everyone is gone. Then I get to enjoy the fruits of my labour!
Take it easy. I have a new motto/question that I am trying to live by. I should first say I am a perfectionist and need everything to be just so in my life. It makes things difficult so now I always ask myself this question when things need to get done…”What is the worst that could happen if….” and then I fill in the blank. So… What is the worst that could happen if the house is not cleaned for the party on Sat? It works!! Trust me…it has kept me sane to learn to laugh at my needs to have things perfect! In the long run, who cares but me? 😀
AnonymousSeptember 9, 2008 at 7:56 am
thanks ladies….Dawn, I’m sure we have stories to tell.
I dont know if the Bears won…hubby watched it but I forgot to ask. I was busy doing housework !
I know you are right…dont clean too much b/c it’s only gonna get messy again. And, if I tell you, the party is for a bunch of 5 and 6 yr old boys AND I ordered a chocolate cake…well, you will really know you
are right. :rolleyes: I’m planning to do as much outside as possible.
The thing is, two of my cousins and maybe my one sister and her hubby will come over and they havent seen the house in a while. Also, the mothers of these kids….we’ve moved into a area that many of the houses very nearby are in the 300 to 500 THOUSAND dollar range. One little boy that lives in a gated community in such a house, is for sure coming. I met his mother and she is super…not uppity like one may think…her house is the 500 thousand one. I just feel like I need to have things a certain way. I shouldnt feel like that. What does it really matter, right. My house is lovely and ALMOST put together. Except for the garage, the guest room, the work room, and the window coverings in several rooms. The windows are covered where they need to be…with sheers and such…just not what I want my final product to be. Who has time to shop for them. It’s been since the end of May. I think about it and wonder, why I havent made it there yet. Seriously.
So now you think I’m vain. I’m not…just particular. 😮
All the running I did over the weekend is very typical for me. And, I work full time. My day begins with the alarm going off at 4:30 and me hitting snooze till 5:30 and pushing it to the limit ! It ends at 9 or 10 pm on a good day. I guess you dont realize how much you do until you tell someone.
I did take off yesterday…seems I had a headache. A headache from work !
I took it easy till about noon and then jammed Connor’s room and it looks so good ! I picked him up from school, took him for a haircut and then ran to Shopko. He came in and made a mess in his room in …oh, maybe five minutes.
ha. It wasnt too bad tho.
back to work this morning but leaving at 12:30 so I’d better get busy.
September 9, 2008 at 12:29 pm
I totally get it! I think the reason I do it is because I can control the cleaning and the outcome. Unlike other issues such as Kevin’s illness and my weight. I also think I clean and over volunteer and help others because I am trying to prove that I am not the never good enough for anyone person that my parents made me feel like!!! Wow! DEEP!! I guess you guys are going to be my therapists today and did not even know it!!!
So, if the cleaning makes you feel better mentally, go for it!! Have fun at the bday party!! Yes the Bears did win!!! They actually looked pretty good for what I did watch, maybe they will get to the playoffs!!! See ya later aligator.
Dawn Kevies mom
AnonymousSeptember 9, 2008 at 1:34 pm
Stacey, My late husband used to tease me saying ” you are the only woman I know that cleans up before the cleaning lady comes! ” I used to respond” I’m just cleaning off the surfaces so she can get to polishing and dusting better.” You have 5 yr olds coming-all they want is cake and ice—you have people coming to watch football-all they want is a tv, drinks and munchies and a bathroom…..stop cleaning–trust me–it is going to look worse after those parties than what it looks like now. Relax and enjoy the parties, then when you have 2 minutes, you can clean……..start with the toilets-after all those little and big boys have used it:eek: 😮
And Stacey, those $500,000 homes only have one thing different than you- a bigger morgage. I have done home visits in some of them and they were pig pens, and sure some were really nice. I always thought it was the people inside ANY home that mattered the most……..
AND MRS. DAWN——-YOU ARE MORE VALUABLE ON THIS FORUM THAN YOU THINK………WE ALL APPRECRIATE WHO YOU ARE AND WHAT YOU DO FOR US…….Emma
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