Getting my first dose of IVIg ever

    • Anonymous
      September 8, 2008 at 11:40 am

      After a week’s delay, I’m finally getting the first dose of my first five day IVIg treatment. The room I’m in has comfy chairs, TVs, and free wi-fi. I’m glad I brought my laptop along to help keep me occupied.

      I’m tolerating the treatment well, so far. The nurse has bumped up the infusion rate once already based on how well I’m handling it. I have between four and five hours left to go today. Then it’s back again tomorrow, Wednesday, Thursday, and Friday. Hopefully, things will continue to go well.

      Any good thoughts and prayers that anyone can send my way is appreciated. I’m really hoping this works for me. I’ve been steadily going downhill for the past year. I hate to think of where I’ll be in another few months if this doesn’t work.

    • Anonymous
      September 8, 2008 at 11:48 am

      Kithlyara

      I hope the IVIG helps you. Remember to drink plenty of fluids for the next 5-6 days. It really seems to help me when I don’t drink lots I usually get ill feelings.

      Did you pre medicate with Tylenol and Benadryl? If not ask the nurse for some now. This also helps with reactions.

      Sending good thoughts your way πŸ˜€

      Rhonda from Canada

    • Anonymous
      September 8, 2008 at 12:13 pm

      [QUOTE=Rhonda]Kithlyara

      I hope the IVIG helps you. Remember to drink plenty of fluids for the next 5-6 days. It really seems to help me when I don’t drink lots I usually get ill feelings.

      Did you pre medicate with Tylenol and Benadryl? If not ask the nurse for some now. This also helps with reactions.

      Sending good thoughts your way πŸ˜€

      Rhonda from Canada[/QUOTE]

      Thanks! It’s really appreciated. I’m surprised at how well I feel right now. I guess the stress and anxiety of having a treatment I’ve never received before was far worse than the treatment itself. Isn’t that often the way of things, though? lol

      I’ve upped my water intake over the past couple of days. I’ll make a point to continue to drink more water during treatment. Thanks for the tip!

      I wasn’t pre-medicated this time around. My neurologist wasn’t certain I would need it so he decided to take a wait and see approach. I’m also allergic to Tylenol. Pre-medicating me would include steroids, something he prefers to use only if absolutely necessary. He’ll be paying me a visit at some point during my treatment today to make sure I’m alright. The hospital is attached to my doctor’s office which is helpful.

    • Anonymous
      September 8, 2008 at 12:40 pm

      Taking pre-meds is imperative, especially if this is the 1st time you’ve ever had IVIG. Over the next few days into your loading dose this is going to be EXTREMELY important. You will want to pre-med to, at the very least, avoid the possible horrible headache.

      Instead of Tylenol you can take Motrin or Aleve along with Benadryl. Emily takes Motrin & Benadryl for her pre-med before every single infusion.

      Hope that helps.
      Kelly

    • September 8, 2008 at 1:12 pm

      Best wishes with the treatment, you are on your way to getting through this!
      Dawn Kevies mom

    • Anonymous
      September 8, 2008 at 1:21 pm

      Best of Luck today! It sounds like you’re in a great place! I usually nap while I get mine, but thats also because I take benadryl and it makes me sleepy!

      Keep Smiling!

      Marjie

    • Anonymous
      September 8, 2008 at 1:21 pm

      [QUOTE=Emily’s_mom]Taking pre-meds is imperative, especially if this is the 1st time you’ve ever had IVIG. Over the next few days into your loading dose this is going to be EXTREMELY important. You will want to pre-med to, at the very least, avoid the possible horrible headache.

      Instead of Tylenol you can take Motrin or Aleve along with Benadryl. Emily takes Motrin & Benadryl for her pre-med before every single infusion.

      Hope that helps.
      Kelly[/QUOTE]

      The only pre-meds I can do are steroids. I’m allergic to Motrin, Aleve, and aspirin. Essentially, any over-the-counter pain reliever will put me in the ER. It makes getting sick and having a fever interesting, let me tell you! lol Fortunately, I don’t get fevers often.

      My neurologist will be seeing me before I leave today. If I have a migraine, he can prescribe me something for it. I wager if I have any problems, I’ll be sent home with a Prednisone prescription to fill before tomorrow.

      Thank you for your concern! When I saw my doctor last, I specifically asked about pre-medicating for IVIg because I know fairly well everyone does it. Unfortunately, my medication allergies prevent me from pre-medicating in the usual ways.

    • Anonymous
      September 8, 2008 at 1:23 pm

      [QUOTE=Dawn Kevies mom]Best wishes with the treatment, you are on your way to getting through this!
      Dawn Kevies mom[/QUOTE]

      Thank you! The best wishes are very appreciated πŸ™‚

    • Anonymous
      September 8, 2008 at 1:27 pm

      You can always try the caffeine approach…drink lots of coffee, chocolate milk and chocolate bars. It helps some people avoid the headache!

      I hate coffee and am newly diagnosed diabetic so chocolate is out!

      I am praying that you don’t get the headache and don’t get sick but sail through this :p

      Rhonda

    • Anonymous
      September 8, 2008 at 4:16 pm

      Adding my best wishes to you. Can you at the least take the Benadryl? Kelly is right-pre meding is imperative. I had ivig for several years without premeds, although I was on prednisone for several years, but not as a premed. My headaches have stopped completely now with Tylenol, Benadryl and Aleve in between, knock on wood. The last thing you want is a headache, and I wouldn’t wait till they come. Sorry you are allergic to so many OTC, but wondered about the Benadryl, and I take 50mg. Good luck.:)
      PS Nice that your doc is so close…….

    • Anonymous
      September 8, 2008 at 4:21 pm

      Hi! Just wanted to add my well wishes and prayers along with those of others here. It is cool that you are able to use your laptop while waiting. Makes a long day go that much faster. Take good care. Keep us posted on how you are doing.

    • Anonymous
      September 8, 2008 at 4:44 pm

      Hope everything went well today. thinking of you

    • Anonymous
      September 8, 2008 at 5:27 pm

      Hi, I just had ivig this afternoon.. I had no premeds, and am doing just fine… I’ve gone without tylenol/benedryl for months now with now adverse problems…..Some people do experience stuff.. Sometimes I’ve had just a very slight headache.. Tommorrow going in for another round same thing…deano
      I do drink water/coffee ……….
      P.S. I think I got worse headaches when I took the premeds… Maybe from the Benedryl?

    • Anonymous
      September 8, 2008 at 7:36 pm

      Just be prepared to be bored, and at such times bored is good! Just be aware, very aware at what rates the nurses increase your doses… and should you feel any THING at all strange speak up and speak up promptly AND clearly about what it is that is ‘strange’. It is important.
      Aside from that all, the hydration issue is a key one to keeping the headache devils at bay! Tho trying to use ‘facilities’ with a bag on a pole w/a pump and a needle in your arm can be a bit awkward? Deal with the awkward and get fluids into yourself!
      As the whole infusion process progresses don’t be shy to ask questions… as many as you can to learn about what the nurses and others do and why they do it. Knowing what nurses and other folks are looking at/for helps you understand where they are coming from in terms of your care. Should problems occur later you then have a way to speak in the best ways to address those problems. BUT I don’t think there will be any! So there!
      I realize it seems endlessly slow now, but it will go only as fast later as your own body can handle it, as it should be. I am truly hoping that you will feel better after all this and go WOW! I almost feel HUMAN! or something similar and soon! Either and any way my heart and hope is with you truly!

    • Anonymous
      September 8, 2008 at 8:13 pm

      This is my 2 cents,for what its worth, lol πŸ˜€
      I get IVIg every 3 weeks, 35gms. I pre-med with Tylenol & Benadryl 2 days before and 2 days after my one day infusion & I still get the horrible headache for at least 3 days with vomiting.

      I know we are all different & are more sensitive than others Sooooo I want to wish you all the Luck I can for a great response to the medication & that you respond well & start to feel better over all.

      Best Wishes & good Luck!:)

    • Anonymous
      September 8, 2008 at 8:38 pm

      I was told a lot has to do with your blood type and or compatability issues. Everyone reacts differently.. I think brands of ivig differ. Rate of infusion…. Your general health….etc… I think Dawn Kevies mom had some good info on this… I think if you felt pretty good during the infusion, and your temp/blood pressure stay good, and you don’t feel sick, your probably gonna do alright (from my personal experience.)… However, I have had a real minor headache sometimes, and I convey that to whoever iv’s me the next time…. I sure hope you will do fine….deano
      P>S….I finished my ivig at 3 p.m. and its about 8 p.m., and I feel great with no side effects whatsoever, and I had NO PREMEDS…., and I doubt I will even have a slight headache in the morning… I may add that I don’t have all the doped up feeling I would get if I had benedryl in me… However, tylenol/benedryl is a lifesaver if you have reactions….

    • Anonymous
      September 8, 2008 at 9:04 pm

      Thanks to everyone for the advice and well wishes! They really mean a lot to me, especially today when I was having to deal with so many new things. I know the uncertainty that goes along with this disease has really been getting to me lately. I’m a lot less stressed about getting IVIg treatment now that I really know what to expect with it all.

      Overall, I think I did pretty good today. I do have a headache right now but I’m not 100% sure it’s IVIg related. I have horrible sinuses that often give me problems, especially when the weather changes. I’ve had this exact kind of headache a few times in the past couple of weeks whenever a storm rolls in. Guess what’s deciding to roll in right now? Once the storm fully settles in the area, my headache should lessen. Either way, I’m going to tell the nurse when I get treatment tomorrow about the headache.

      My blood pressure stayed stable the entire time I got treatment today. My arm is a little sore from the IV and blood draw they did. I imagine that’s going to pretty standard for the rest of this week. I’m thinking about bringing my trusty Tramadol with me tomorrow, just in case I need a pain killer. I hope I don’t.

      I will admit, I’m very fortunate to have the neurologist I do. While my city is only mid-sized, it’s the county seat and has a teaching hospital. We have some of the best doctors here. The office building my neurologist is in is attached to one of the main hospitals. Should anything come up with me during treatment, all he has to do is cross the foot bridge over to where I am. I recently found out that my neurologist not only specializes in diseases that cause demyelination but he has the most IVIg patients out of any other doctor in the area. I’m happy he has the experience he has. I know it’s helped tremendously in getting me a diagnosis and ultimately getting me treatment.

      Thanks again for all the prayers and well wishes! I love this community and how supportive everyone is. *hugs!*

    • Anonymous
      September 9, 2008 at 2:18 pm

      I’m glad your infusion went well. Hopefully you’ll continue to respond so well. How in the heck can you live without Motrin, Tylenol, Aleve, etc? LOL. I’d go crazy. I get headaches often so I go through quite a bit of Motrin.

      About the pre-meds:

      I asked Emily’s nurse about the no pre-meds yesterday. She said there is starting to be a trend with some dr’s to not EVER prescribe pre-meds. The thought is if the person is going to have an allergic reaction they want them to have it, so they know about it. The pre-meds will mask it or make it not happen at all.

      I don’t really agree with this logic, but apparently it’s being used by some dr’s.

      Kelly

    • Anonymous
      September 9, 2008 at 3:06 pm

      Best of luck with you IViG thing- seems to work for many. 6 months later, for me, they’ve abandoned it and trying CellCept? It’s ALL so much a “wait n see” thing!

      But, just to let you know- I really didn’t have headaches w it- oplenty of fuids and caffiene are good, though;-) Hope and pray it works!

      Hey, all on the neuros I’ve seen say I’m “not that bad” as to need Plasma Exchange- yet many of you recommend it, say I should demand it, etc- Dr Cornblath, ogf the GBS-CIDP Board, Johns Hopkins fame, tells me the Cellcspt should “show results in a month of use”. They’ve tried IvIg, now cellcept and, of course, I’ve been on 50 mg of Prendisone, all the while (a year) Whhen do I attempt to plant my foot firmly and/orcheck myself in to a hospital? “Not that bad”= to them, on SSDI, unable to do small chores, haven’t slept in a year and difficulty with stairs?

      ANYWAY, BEST OF ALL with your IvIg- since my first infusions, I’ve met over a dozen folks with CIDP using it, well, in the Roanoke area. I will say, however, that some seem to resond to different BRANDS of product, differently. (OctaGam vs Gammaguard, for example) Just something to keep in mind;-)

      Eric

      If gerbils are the axis, Guinea Pigs are the Soul of the Universe;-)

    • Anonymous
      September 9, 2008 at 4:56 pm

      Congratulations on starting your treatment. I hope it goes well and you respond quickly. Some people show immediate improvement, some do not, and you should try not to be discouraged if, like myself, you are in the latter group. My symptoms continued to progress until my fourth month of IVIG treatment, and I was very worried, but then my condition finally stabilized. I write this to offer you encouragement and a reminder that everybody responds in their own way to treatment.

      GaryD

    • Anonymous
      September 9, 2008 at 10:33 pm

      [QUOTE=Emily’s_mom]I’m glad your infusion went well. Hopefully you’ll continue to respond so well. How in the heck can you live without Motrin, Tylenol, Aleve, etc? LOL. I’d go crazy. I get headaches often so I go through quite a bit of Motrin.

      About the pre-meds:

      I asked Emily’s nurse about the no pre-meds yesterday. She said there is starting to be a trend with some dr’s to not EVER prescribe pre-meds. The thought is if the person is going to have an allergic reaction they want them to have it, so they know about it. The pre-meds will mask it or make it not happen at all.

      I don’t really agree with this logic, but apparently it’s being used by some dr’s.

      Kelly[/QUOTE]

      It’s really difficult at times to be allergic to all the over-the-counter pain relievers. There are so many medications that include them in it. I’m constantly checking labels, especially on cold medicines. A lot of rubs for muscle pain (like Bengay) also have a form of aspirin in the cream to help with inflammation. Pepto Bismol has it, too.

      My neurologist tends to be against a lot of interventions. He prefers to wait to see if a person needs something specific done than to subject them to a lot of tests and medications that they may not need. When he feels someone needs something, he’s very proactive. He’s also very honest about the various treatments and tests and has told me the pros and cons of everything I’ve had done along with potential side effects. I really wish everyone on this forum could have a neurologist like him.

    • Anonymous
      September 9, 2008 at 10:40 pm

      [QUOTE=Eric the Bearman]Best of luck with you IViG thing- seems to work for many. 6 months later, for me, they’ve abandoned it and trying CellCept? It’s ALL so much a “wait n see” thing!

      But, just to let you know- I really didn’t have headaches w it- oplenty of fuids and caffiene are good, though;-) Hope and pray it works!

      Hey, all on the neuros I’ve seen say I’m “not that bad” as to need Plasma Exchange- yet many of you recommend it, say I should demand it, etc- Dr Cornblath, ogf the GBS-CIDP Board, Johns Hopkins fame, tells me the Cellcspt should “show results in a month of use”. They’ve tried IvIg, now cellcept and, of course, I’ve been on 50 mg of Prendisone, all the while (a year) Whhen do I attempt to plant my foot firmly and/orcheck myself in to a hospital? “Not that bad”= to them, on SSDI, unable to do small chores, haven’t slept in a year and difficulty with stairs?

      ANYWAY, BEST OF ALL with your IvIg- since my first infusions, I’ve met over a dozen folks with CIDP using it, well, in the Roanoke area. I will say, however, that some seem to resond to different BRANDS of product, differently. (OctaGam vs Gammaguard, for example) Just something to keep in mind;-)

      Eric

      If gerbils are the axis, Guinea Pigs are the Soul of the Universe;-)[/QUOTE]

      My neurologist has told me that I have a mild case of CIDP but he’s been very proactive in getting treatment for me. I don’t have a doubt in my mind that if IVIg didn’t work or I wished to pursue another treatment for some reason, he would be behind me 100%. Even a “mild” case is debilitating and has the potential to cause irreversible damage. I’d put some pressure on your doctors if they aren’t helping you like you feel they should. You’re your own best advocate when it comes to your health. *hugs!*

      I seriously laughed out loud when I read “If gerbils are the axis, Guinea Pigs are the Soul of the Universe.” The “Gerbils are the axis upon which the universe rotates” quote in my siggy comes from a friend of my husband’s. His best friend in high school had an older brother who had been out drinking with his friends. When they returned home, my husband’s best friend challenged his drunk brother and his friends to explain how gerbils are the axis upon which the universe rotates. I am told much hilarity ensued.

    • Anonymous
      September 9, 2008 at 10:50 pm

      I figured I’d give a Day 2 update, just in case anyone was interested πŸ™‚

      I’m still handling the IVIg well. I do have a bit of a headache right now. My neurologist has ordered the nurse to give me Solumedrol before starting my IV tomorrow to try to prevent it. Thankfully, my headache isn’t too bad.

      I’ve already noticed some improvement. My balance has improved some. I can stand up on my tippytoes without falling over. I still can’t balance on my heels at all but I will happily take what I can get. The tingling is starting to fade a bit in my legs. I just started having problems with my legs in the past month or so. I think that’s probably why my legs are getting better so quickly. Only time will tell how much improvement I get or how long it lasts, though.

      My doctor is encouraged by my improvement. He wasn’t sure how well I would respond to IVIg since my protein levels fall solidly in the ‘normal’ range. Granted, I don’t have a baseline of my protein levels from before my health started to take an abrupt nose dive. It’s possible my protein levels have gotten higher and we just don’t know it.

      At any rate, I’m glad that I’m tolerating the treatment well and responding at least a little bit to it. I know the prayers and good thoughts have been helping. I continue to keep all of you in my prayers each night! *hugs all around*

    • Anonymous
      September 10, 2008 at 4:31 am

      I am so happy for you that you are getting treatment and the good news of feeling your tippy toes. I start my IVIG next week sometime after my surgery and sure hope it helps me. A little scared of next week coming though. But I’ve handle sickness already and I guess I can handle a few months more! But am glad things are starting to go forward for you! Wishing you my best! Hugs

    • Anonymous
      September 10, 2008 at 6:13 am

      good luck on day #3. Hope the solumedrol helps your headache. Will be thinking of your and praying that you will be fine…..Emma

    • Anonymous
      September 10, 2008 at 7:15 pm

      Well, it’s Day 3 and I feel like I’ve been hit by a semi. It’s not any one thing in particular that’s causing me to feel so poorly. Just a combination of many little things that has me feeling generally unwell.

      I received Solumedrol this morning before my IV was started. I don’t know if it’s the reason for me feeling this way although it’s the only thing that’s changed. I’m still getting the same dose of IVIg at the same infusion rates.

      All I know is overall I feel shaky and weak. I have a very tiny headache and feel a little achey. I have next to no energy right now. Speaking is an interesting endeavor. Whenever I get like this, it’s like I know the words I want to say but my mouth has difficulty forming them. I feel like a drunk person.

      My legs felt shaky very briefly after I got home yesterday. I also had a hell of a time trying to get my F150 out of the hospital’s parking garage thanks to an F250 with a long bed and flared rear wheels parking so close to my truck I had to climb in through the passenger side to get into it. Ultimately, the truck had to be moved so I could get out without hitting him or the truck parked behind me. Then I almost sideswiped a minivan that was parked around a corner in a compact space. That entire experience left me stressed and agitated. My legs didn’t feel shaky before then which is why I’m inclined to chalk it up to the parking garage troubles and not the IVIg. The shakiness only lasted for an hour or so after I got home.

      I found out one of my “roomies” at the outpatient center this week has CIDP. Hers is much worse than mine. I told her she should check out the forums here. She’s a wonderfully sweet woman.

      It can be so hard to see sometimes but having CIDP has brought me many blessings. Once again, I’m thankful for all of you. Even though I haven’t been on much lately, you have all been in my thoughts and prayers.

    • Anonymous
      September 10, 2008 at 8:01 pm

      It is so wonderful to hear from you. I am so sorry you are feeling lousy today. Hopefully tomorrow gets better.

      I drive a truck, and I always try to be respectful as to where and how I park because it can make parking difficult for others. Trucks like the one next to you need to get a “parking ticket”. Years ago we used to be able to by tickets that said things like….”Thanks for the way you park your car. May the fleas of a thousand camels infest your armpits!” Never forgot that one. It sure made you feel better to leave it on someone’s windshield. πŸ˜€

      Anyway, take care and look forward to hearing tomorrw’s news. Praying it will be good!

    • Anonymous
      September 10, 2008 at 9:53 pm

      [QUOTE=jan’83]It is so wonderful to hear from you. I am so sorry you are feeling lousy today. Hopefully tomorrow gets better.

      I drive a truck, and I always try to be respectful as to where and how I park because it can make parking difficult for others. Trucks like the one next to you need to get a “parking ticket”. Years ago we used to be able to by tickets that said things like….”Thanks for the way you park your car. May the fleas of a thousand camels infest your armpits!” Never forgot that one. It sure made you feel better to leave it on someone’s windshield. πŸ˜€

      Anyway, take care and look forward to hearing tomorrw’s news. Praying it will be good![/QUOTE]

      Thank you!

      Thankfully, the guy who owned the F250 was sitting in the truck, making a phone call. He was nice enough when I asked him to move his truck. I just couldn’t believe how close he parked to my truck.

      I live in Texas. There are so many trucks here. Most parking garages and parking lots are made with trucks in mind. The spaces are typically a little wider than average. This parking garage was the worst I have ever been in. Luckily, I have a smaller car that I can drive to the rest of my appointments.

    • Anonymous
      September 11, 2008 at 9:26 am

      So glad the IvIg is working out for you- it seems to for averyone I’ve met (couse I met them at the infusion center, lol) Most folks show some immediate improvement, meaning, they are doing the RIGHT thing. Some of us recalcitrants, though, ah well, I’ read 90% or some such respond well to the Gama Globulin, Praise God you got ther long end of the stick! (this time- you deserve it?)

      Eric

    • Anonymous
      September 11, 2008 at 9:03 pm

      The view from Day 4 of my IVIg treatment –

      Last night after I logged off for the night, things didn’t improve. I got a horrible migraine that wound up making me throw up. In an act of mercy, my Tramadol decided to help with my headache. My experience with Tramadol is it’s always hit or miss on whether or not it will help with my headaches although it does great with other types of pain. I didn’t get much sleep last night, thanks to insomnia from the Solumedrol.

      Today is so much better than yesterday! I woke up feeling infinitely better. I imagine the majority of the Solumedrol had managed to work its way through my system.

      I told the nurse about the problems I had last night and said I didn’t want the Solumedrol today. She called the doctor and let him know. I was able to receive just IVIg today. I feel so much better! I have a bit of a headache but none of the other problems I had yesterday.

      I am very glad tomorrow is my last day of treatment. I’ve had 9 needle sticks so far this week. I usually have wonderful veins but they have had it. My nurse is outstanding when it comes to giving IVs and she’s starting to have problems getting one in. My arms look like they belong to a heroin addict! lol

    • Anonymous
      September 12, 2008 at 12:57 am

      Are you doing your IVIg in back to back days? If so, just have them leave the needle set in. That’s what I do, the nurse just wraps it up with coband and netting. That way I only have to get stuck once or twice during the 5 days of IVIg. Less holes that way… πŸ™‚

    • Anonymous
      September 12, 2008 at 7:10 am

      Never thought of that and that sounds like a good idea. Thanks for that tip! Will keep that in mind.

    • Anonymous
      September 12, 2008 at 9:13 am

      [QUOTE=AllyinCali]Are you doing your IVIg in back to back days? If so, just have them leave the needle set in. That’s what I do, the nurse just wraps it up with coband and netting. That way I only have to get stuck once or twice during the 5 days of IVIg. Less holes that way… :)[/QUOTE]

      I am getting the IVIg done on five consecutive days but I can’t leave the IV in overnight. My children are fairly worried about me having to go to the hospital every day. My youngest child is my son and he’s four. I’m afraid he might needlessly fret and/or fuss with my IV. I also have a three month old German Shepherd puppy at home who is really rambunctious.

      In spite of all of that, even if I wanted to leave it in overnight, I don’t think the nurse here would let me. The tape they use to hold the IV in place really irritates my skin. She’s commented on it a few times. So, multiple needle sticks for me, sadly πŸ™

    • Anonymous
      September 12, 2008 at 10:48 am

      with permission, i used vicodin and benedryl when i had ivig– vicodin works so much better at controlling the ill feelings brought on by ivig…

      you may consider it– its not contraindicated…

      alice

    • Anonymous
      September 12, 2008 at 2:00 pm

      [QUOTE=alice]with permission, i used vicodin and benedryl when i had ivig– vicodin works so much better at controlling the ill feelings brought on by ivig…

      you may consider it– its not contraindicated…

      alice[/QUOTE]

      Vicodin is related to Tylenol. Since I’m allergic to Tylenol, a doctor won’t prescribe me vicodin. There are really a surprising amount of medications that have aspirin, Motrin, Alleve, or Tylenol in them.

      Yesterday I did really well with just my Tramadol to combat a headache. I’m very thankful I haven’t had any problems aside from a headache with just the IVIg. I will not take Solumedrol with IVIg again though, that’s for sure!

    • September 12, 2008 at 2:33 pm

      Hi,
      If your doc is going to use ivig as a long term treatment, a year or more, 3 years in Kevies case before we entertain being totally weaned off. You may want to consider a port. After a while, your veins may not fare well and you might be in a position where your treatment chedule is compromised. That happened to us Last year Oct. 30th. Nov 3rd, we had a port put in and things have never been easier. Although you do not like being left accessed, the needle is higher up than an arm access. There is a special tape for those with sensitivity also. If you do decide you want to be accesses every day, I guess you could do that and with a port, it is a sure stick every time. The vein holds up and never colapses. Just a thought, it has worked out wonderfully for Kevin, but as I am sure you know by now, everyone really is different with this illness. Good luck!
      DAwn Kevies mom