IVIg Treatments

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IVIg Treatments

Written by admin on 07 May 2007

Ok, so… many of you are curious/thoughtful about the new treatments and I thought a post was in order…

Thursday, May 3, 2007

Went to MGH and had my shunt put in tonight in the hopes of discouraging any more stalling techniques on the part of my doc... Lucked out and had one of the best IV-Putting-nurses on duty to stick me + Lloyd came with and offered me a hand to hold when it took some time getting it in. (what a man!xo)

Day1

Friday, May 4, 2007 – 1st treatment. Shirley was here with Emeraude (thankfully as that meant I could walk out the door and not worry about a single thing on the home front…).

9:00amI was at the hospital a half hour late (Shirley & Baby had waken me up twice but i was in rough shape and not moving terribly fast) but realized when I got there that my 8:30am appointment wasn’t all that strict and no one had noticed (thankfully) that I was late. As per my usual, my legs were KILLING me and I was too weak to be on my feet (or sitting) for more than a couple minutes at a time so I asked (and was accomodated immediately) to be given somewhere to lay down… The nurses put me in the obs, which I would later appreciate as it has a television which is nice after a few hours, and took my vitals, they asked about my condition and i told them how I was feeling but also tried to make it clear that this IS the norm for me (hence the treatments, an attempt at quality of life)…

10:00am the nurses have been in for my vitals a few times and now she is back with news that the IVIg is ready but Dr.Hall has said he must see me 1st since I am sick….????? HUH??? I’m sick??? well, no more than usual, what is this nonsense… now i’m wishing i had packed my ativan.

i had come in yesterday to begin treatment and had been told they didn’t have the protocol…had returned yesterday evening for the nurse to put in my shunt hoping it would discourage any further stalling having also come in 2 days prior to be told by the doc learned that the IVIg plasma had come the day before that (this meant that it had been 4 or 5 days ago i could have been started AND finished the treatment by now)
ANYHOW… I ask the nurse if she knows if he’s on his way and of course he didn’t have the courtesy to mention to her when he was coming (she didn’t say that, i figured it out as things progressed) so she said she thought he must be…
10:30am I call the clinic to ask if Dr.Hall is on his way and tell the secretary that if it is easier I will cross the parking lot and come myself… I’m put on hold and she returns to tell me that no, he’s not on his way, he’s very busy don’t i know and he will be with me later… I explain to her that meanwhile I am paying a sitter, there is no reason for him to see me because AS HE KNOWS QUITE WELL my condition this morning is normal for me THAT’s WHY I’m STARTING TREATMENT well duh! … well, he’s very busy no they don’t want me to cross the street, i will have to wait *growling Karina* “I’m on my way” *hang up before she can protest*
I have made my way (slowly) across the street and enter the clinic to a less than warm reception… “he’s with a patient, you can’t wait here,he’ll be at the hospital at noon” he’ll WHAT??? noon??? me:”that’s ok, i’ll wait here, he just has to look at me and call across the street”, her:”no, there are other people waiting, he’ll be there at noon”, me:”that’s ok, i’ll wait my turn”… meanwhile there are a few friendly faces (if you are reading this thank you!!) in the clinic and seeing them/talking to them keeps my spirits up and convinces me to stand my ground… this is RIDICULOUS!!! he had no reason to tell the nurse to wait until he saw me in the first place, i was in his office just 4 days ago and he is quite aware that pain/weakness is something i’m dealing with EVERY morning and is the reason my neurologist has decide to try out the IVIg in hopes of regaining some quality of life!!!
11:00am he stops hiding in his office (didn’t come out between patients for the last 2 or 3 patients) i approach him at the counter and tell him he’s seen me, now he can call as the nurse is ready and just waiting on him… blah, blah, blah… he says he call so, I cross the street and it begins!
FINALLY!!! it’s happening IVIg… the nurse from the MS clinic in Thunder Bay had warned me it could take 5-6 hours but she doesn’t know our nurses! I’m done & out of there in 3 hours – WOHOOOOO
Felt Great the rest of the day even took a walk downtown with Emeraude in her wagon (although on the way back i debated knocking on Becky’s door for a break… dragged my butt something awful those last few houses but even then laid down for about 45 minutes when Lloyd got home and felt pretty good after! Maybe this IVIg is the solution!!!

Mom & Lloyd "before"... will have to get an "after" pic tomorrow or something... We were both THRILLED with the haircuts we got 🙂 Thanks Ladies, awesome hairdressing!!!

Friday, May 4, 2007 Happy, Happy, Joy Joy relieved to have finally started, hopeful for this new treatment!

10:45am

Saturday, May 5th, 2007

Well, things seem to be holding out pretty well… was in bed a little more than I would’ve liked this morning but not nearly as long as usual, and even did some tidying around the house… Emeraude had a beach & picnic date with Daddy at 11am so I dropped her off to a smiling Daddy @ the Lion’s Beach and then came home to get Lloyd as the 2 of us had planned to take advantage of being baby free and do a “beauty day” lol (haircuts and stuff *smile*) it was fun, we both laughed too hard and enjoyed all the attention

I’m beginning to realize that my Doctor’s lack of experience is once again an issue… Ok, so, they’ve never done IVIg at MGH before WHO CARES??? they do it everywhere else, this isn’t a heart transplant for crying out loud, it’s just another IV!!! different meds, same technique, *grrrrrr* just because the doc is scared of new stuff, does he not realize our nurses do new things all the time – they can handle it!!! SO LET THEM!!!

Emeraude tackling Daddy @ the playground.

Daniel had decided to bring Emeraude to the dump for bear watching and was nice enough to invite me along since it would be her 1st trip to “the zoo” lol… IT WAS GREAT! there was a HUGE bear there and she loved it… later we went to the trapper’s supper (I had made baby back ribs @ Grandpapa’s request & a double-berry-chocolate-topped-chesecake… Emeraude spent lots of time in Grandma’s arms and I got to enjoy supper with my family. Matt & Lloyd also came with us to the supper. All in all a pretty great day!

Day3

Sunday, May 6th,2007 Treatment #2. not much to report on this one – brought my laptop along and got most of the story about Roger & Monique’s friends written (thanks again to those 2 for making that interview possible!!)… hoping to finish it Tuesday morning during my treatment – ause it was the 2nd round the nurse was aloud to speed the IV up even quicker (and being a Manitouwadge nurse, she of course was on the case *smile*)… Can’t wait to brag to the MS clinic that here in Manitouwadge, where our nurses had never treated anyone with IVIg before, they did me in 2.5 hours flat!!! (as oposed to the 5-6 hours it takes them in Thunder Bay)
I do feel like it kicked the crap out of me though… napped for a few hours in the afternoon & Daddy came and did bath & bed time with Emeraude (nice to have him back on earth xo) She had a BLAST as she even talked him into jumping in the tub with her (not that it took much convincing lol two silly fish in my bathroom *grinning ear-to-ear for my girl*

Monday, May 7th, 2007

no treatment today, only mentioning the day to say that this morning was rough… typical 4 hours normal in afternoon, dragging my butt through supper and laid down for 1/2 hour after Daniel stopped by in the middle of writting this… keeping it short to get back in my bed as I am rather fatigued and a little worried that day 1 might have just been so successful because of the hopes i had in this new treatment & not actually because of the treatment itself *sigh*. On a positive note Daniel seems to be in very good spirits and back to himself these days which does alot for my moral although I am not as quick as I used to be to go back to our old schedule… I would love to but am holding back for the kids who had a hard time of his “issues” this time round. ANYHOW, it does feel good to have him available as a friend even if only in limited doses.

Tomorrow morning is treatment #3 the last one for now (I think it’s a monthly thing but have not confirmed this… Hoping that the 3rd time is the charm and that it has the expected result of putting me on my feet and back to a normal day (it’s been a long time since I had that without steroids)… crossing my fingers and toes, nervous about the possibility that this isn’t the answer for me *sigh again* but not out of hope yet! Shirley will be here bright and early for which I am very greatful.

Wish me luck everyone!, if you pray, say one for me & my family pls

What is IVIG therapy?

Intravenous immunoglobulin (IVIG) therapy is the infusion of immunoglobulins into a vein. This type of therapy is for people who have deficient or dysfunctional immune systems or who have autoimmune diseases.
Where do immunoglobulins come from?
Immunoglobulins are collected from the pooled human plasma and contain a wide variety of antibodies. The immunoglobulins come from plasma that has been vigorously screened, tested and found to be safe and free of HIV infection and the hepatitis virus.
What autoimmune diseases are IVIG therapies used to treat?
IVIG has been used to treat symptoms associated with autoimmune diseases such as: multiple sclerosis, myasthenia gravis, polymyositis, dermatomyositis, Guillian-Barré Syndrome, chronic inflammatory demylenating polyneuropathy, lupus, rheumatoid arthritis and other connective tissue diseases. It has also been used for the treatment of pediatric HIV infection and leukemia.
What are the added advantages of IVIG for people with autoimmune deficiencies?
With autoimmune diseases, IVIG therapy has the potential to reduce or eliminate the need for treatment with drugs that have serious side effects. IVIG is one of the only treatments for autoimmune diseases that does not suppress the immune system.
What can IVIG therapy do for immune deficiencies?
IVIG therapy strengthens the immune system by replacing the deficient immunoglobulins and provides temporary protection from potentially harmful viruses and bacteria.
What is involved in an IVIG infusion?
A needle attached to tubing is inserted into a vein and a solution of immunoglobulins is infused. Depending on your individual protocol, therapy can take from one to five hours, sometimes longer.

2.5 hours was the shortest time for me so far – have I mentioned OUR NURSES ARE FRIGGIN’ AWESOME!!

How often must IVIG therapy be given?
The number of IVIG treatments depends on the patient’s diagnosis. In general, most patients with primary and secondary immune deficiencies receive infusions monthly. Patients with autoimmune diseases may only require IVIG treatment when problems arise.
Why is home an appropriate place for IVIG treatment?
Because most IVIG treatment is provided on an ongoing basis, the patient’s quality of life becomes an issue. IVIG treatments administered in the home provide a more comfortable and convenient setting for the patient, and allow the patient to fit the treatment into his/her own schedule.

Huh! home treatments… I don’t think this is an issue for me being SO close to our hospitals and our nurses having shown that it is possible to do the treatments in such a short amount of time

Can IVIG be used with other therapies?
IVIG therapy can be used in conjunction with steroids,

OK… this is the 1st time I’ve heard/read that info… that it can be used along with steroids which is eye opening and encouraging because i’m thinking maybe a round of steroids is in order immediately to help boost the chances of this working… something to lookinto FOR SURE!!

methotrexate, and other immuno-suppressants. In addition, IVIG therapy can be used in conjunction with antibiotics if the patient is suffering from an infection. But IVIG should always be infused separately and never mixed in the same bag with other medications. To find out more possible drug interactions, the patient should check with his/her doctor or an Accredo Therapeutics pharmacist.
Are there risks associated with IVIG therapy?
IVIG therapy is considered to be no more risky than any other conventional drug therapy. First, you should review the package insert for details about the associated risks. The side effects tend to be few, but they may include chills, headaches, fever, nausea and chest tightness. These side effects are usually associated with the infusion rate or dosage. Slowing the rate of infusion and/or the use of pre-medication can help control these side effects.

taken from http://www.accredotx.com/ivig/ivig_q_a.html

Well, I think it defenitely helped although of course I’m still not the me I remember pre-MS… I have a telehealth conference with my neurologist Dr.Brown next week and will find out what the schedule is for these treatments… (from what i’ve gathered on line it’s a monthly thing) and whether I can expect to get increasingly mobile after each treatment (wouldn’t that be amazing!)

anyways, I am happy I tried the treatment. It most certainly helped, although I have had alot of pain in the last week (am considering returning to the ratio-morphine maybe at a lower dose?) I have less fatigue and am more physically able which is so wonderful!

Day 5 (last treatment) tomorrow (Tuesday) morning

Day5

well, after a bit of a wait (there were people with real emergencies swamping the emerg) a nurse snuck me into the obs room between patients (what a doll) and got me started. It went very well.