posted
I started IVIG on Saturday and my first infusion went ok. But today was my second one and it was a little tougher. I passed out when they started the infusion. Like bam out. And my bp drops to like 102/68 which is normal but a little low. Yesterday I felt fine after ward. I was tired during the infusion but fine afterward.
Today I got very sick afterward. I almost threw up. I was super dizzy, my right knee had an intense amount of pain, and now I am getting spasms again.
I have similar reactions with b-12/c infusions that are supposed to boost my immune systems. I am wondering if this is just because it's boosting it or if this is normal. The RN said most people have little to no symptoms but some do get fatigued.
If you all could let me know your experience that would be so great!
-smiles
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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lymetwister
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Not to scare you, but IVIG really messed me up.
I was in the ER with the 3rd dose. Couldn't get my breath. My Heart Rates was in the 40's and I developed fevers with the very first dose of IVIG and they went on for 2 years until I got on IV abx. My WBC counts alos went up after the IVIG and never before.
Not sure what it did to benefit me, but it sure made me feel alot worse.
I did 125gm over 5 days.
The RN is correct, but when used for Lyme I have seen some pretty bad reactions.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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posted
Interesting...Well that is a very high dose. She said the range is between 1 and 70 grams. I am doing 20. I'm not sure how long ago you did the ivig but I guess it's also changed a lot in the last two years (in a good way). Maybe your dose was too high?
I am doing it because I've been on IV rocephin twice now..first time for 18 months and this time 8 months (so far) and my lyme is getting better but my immune system is crashing. I've been on orals off and on since I was 12 with major surgery starting in 2nd grade. So We're hoping that with the ivig my immune system will improve and I can be done. My temp did go up a little during the infusions. Tpyically I run 97's..and it was up to 98.6..but i'll see how the next one goes.
I really hope this works because i've been treating lyme and co's for 5 years and I really want to get well. I've also heard some great things about it.
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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lymetwister
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My dose was a standard dose. It was last July. The brand was Octagam. 20gm is a low dose. Just giving you the facts and wish you the best.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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Tracy9
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I'll be restarting it again soon, as well. We do have an IVIG group now in LymeFriends. My doctor also told me it has improved a great deal in the last two years. I don't know my dose but I do know I'm changing brands. I'll find out at my first transfusion.
I'm just waiting for them to get the brand in. It's been two weeks. They are always jerking me around at the Cancer Center where I go.
Your reaction does sound scary. I have reacted every time I've had it, but only as they increase the infusion rate. The last time I had it I reacted badly afterward in CVS pharmacy filling a script, right after leaving the Cancer Center.
My BP went up to 165/133 and heart rate was 135. I was dizzy, out of breath and confused. I had felt really sick and walked over to the blood pressure machine to check myself out. They had to call an ambulance. The Cancer Center refused to transfuse me again after that happened.
It has now taken me four months of jumping through every hoop they have set up, seeing three different doctors (my PCP, my Lyme doc, and their oncologist/hematologist) and getting them all to okay it for them to take me back. I can't get it ANYWHERE else. No home care company will take me because of my reactions.
I believe my reaction was because they amped up the infusion rate that day higher than ever before while I was sleeping. (They like to hurry it up so they can get out of there.) They decided I was "rejecting the antibodies." My lyme doc and PCP agreed with me it was probably due to the fast infusion time, and that at the very least trying to change brands before giving up would make sense.
The Cancer Center's concern was that my reaction was worsening after I had left there and long after the IVIG had been stopped.
I am anxious to try it again to see what happens. They of course have dragged their feet at every step. I think it has turned into a big huge power struggle and the nurses there are not real happy I managed to make my way back in there. So now I'm probably paranoid, but they NEVER call me, I always have to call them to find out what is going on....and last time I called, she said I was all set, she was just waiting for the pharmacy to get the new brand in.
Two weeks later? Over two weeks now. I'm not calling because I want to see how long it is going to take them to call me this time.
Anyway, I digress. It just seems to me people have all kinds of bad reactions and no one ever kicks them out because of it, like what happened to me!!! Your reaction sounds pretty severe. I hope it doesn't happen again.
Often they can change brands as a first line of action when you react. Or slow down the infusion rate. My reactions were always in direct response to the infusion rate rising.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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I'm confused about what LymeTwister said; he said he got the IVIG last July, but in his post said this:
"I was in the ER with the 3rd dose. Couldn't get my breath. My Heart Rates was in the 40's and I developed fevers with the very first dose of IVIG and they went on for 2 years until I got on IV abx."
This makes it sound like he did get it over two years ago, before IVIG became so much safer.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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lymetwister
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I got the IVIG last July. Daily fevers and elevated WBC counts until starting IV Abx this year.
I did say 2 years, but it was only a year. How time flies when your feeling like cr*p. Look back in my postings. The correct dates should be there.
Tracy9
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Got it, thanks for clarifying! I did look back at some of what you went through. It's surprising they gave you more treatments after your ER visit with the low heart rate.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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lymetwister
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Whats worse is that the ER would send me home still short of breath, bradycardic, a fever, and an elevated WBC count.
But then again, the Shortness of breath was anxiety
The fever wasn't a fever as it was my circardium rhythm
The White count was from stress
and well, plenty of athletes have heart rates in the 40's.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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Tracy9
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Geesh, we had the opposite problem. I tried to convince them to give me IVIG after my brief ER visit, where everything returned to normal in no time and I don't think they did anything for me.
They refused, insisting I was "rejecting the antibodies." I read all these stories all the time of people ending up in ERs, having bad reactions after IVIG, but they all just kept on getting it. What is wrong with the place where I go???? My symptoms resolved in no time. The whole deal was over like an hour post infusion.
And it's taken me four months to get them to even TRY it again, with a slower infusion rate, one at which I have NEVER reacted, and a change of brand.
Granted my BP and heart rate were extremely high but it didn't last long. By the time I was in the ambulance they were already going down. My primary care said they shot up because I'd been laying or sitting all along and it was the first time I'd stood, walked, and then stood in place at the pharmacy counter so everything got worse.
This whole thing just makes me so angry. It's been almost 2 1/2 weeks and everyone knows it only takes a couple days to order IVIG. Grrrrr!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
My husband had intense reactions to IVIG when he first started. His red blood cells would drop signficantly enough that he needed a transfusion after the first IVIG.
However, he was already anemic before the IVIG and each time he had IVIG his reaction was less and less.
My personal opinion is that the IVIG helps wake up the immune system and it starts to go after the bugs. For my husband despite the scary beginning, IVIG has definitely been worth it.
Posts: 984 | From San Diego | Registered: Nov 2006
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posted
Interesting. My home health nurse told me today that they do their infusions for ivig (first time 6 hours) and second time 3-4 hours. My first infusion was under 2 hours and second time was under 2 hours.
Today I have the worse headache. I am also doing IV rocephin 7 days a week and working 40 hours..ugh I am struggling for sure..Also the only place I can have this done (bc insurance won't approve home health ivig) is 1.5 hours from my house. So it's been stressful and a lot on me to get there, infuse, drive home, work, infuse again..plus I had a nursing visit tonight. My heart beat is higher and I feel it racing through the day. But again, I am doing A LOT. Too much, but I have to work to pay for this all.
I want to keep doing it, but I am not sure if I can handle driving there every day..do you know how long they prescribe it for after the 5 days? I also don't want to tell my ordering doctor all these negative things because I am afraid she'll say it's not beneficial and then pull it. And I know so many people have had great success...and I want to give it a fair shot.
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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posted
Interesting. My home health nurse told me today that they do their infusions for ivig (first time 6 hours) and second time 3-4 hours. My first infusion was under 2 hours and second time was under 2 hours.
Today I have the worse headache. I am also doing IV rocephin 7 days a week and working 40 hours..ugh I am struggling for sure..Also the only place I can have this done (bc insurance won't approve home health ivig) is 1.5 hours from my house. So it's been stressful and a lot on me to get there, infuse, drive home, work, infuse again..plus I had a nursing visit tonight. My heart beat is higher and I feel it racing through the day. But again, I am doing A LOT. Too much, but I have to work to pay for this all.
I want to keep doing it, but I am not sure if I can handle driving there every day..do you know how long they prescribe it for after the 5 days? I also don't want to tell my ordering doctor all these negative things because I am afraid she'll say it's not beneficial and then pull it. And I know so many people have had great success...and I want to give it a fair shot.
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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Tracy9
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Wow.....under 2 hours is way too fast!! Mine takes five hours and any faster leads to reactions.
I also could not tolerate 5 days in a row, and had to switch to 2 days every other week instead of 5 days once a month. I ended up getting meningitis shortly after my first 5 day course finished.
Then I got just one day of my first new regimen and had the reaction in CVS and haven't gotten it since.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
My husband receives 130 grams over two days. So 65 grams each day. His infusion time is about four hours (his first infusion was probably 6 hours) and he has a small pump in a sling he wears around his waist which makes him mobile. He does his infusion in the evening so he can work in the day.
Day 4 counting from his first day of infusion is always his roughest as far as feeling bad.
The nurses need to slow down your infusion rate and you should probably slow down your schedule a touch. Could you ask someone to drive you and pick you up so you could rest both ways.
My husband gets Gamunex which requires dextrose be infused before and after each infusion. Half the time the nurses forget and we have to remind them so it's important to know if there are any requirements like that for your IVIG solution.
Posts: 984 | From San Diego | Registered: Nov 2006
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posted
So today I went and they slowed down the rate because they realized how sick I was the last time and I started to get these pounding headaches. They said if the headaches continue they will have to stop the infusions.
They always start off the infusions slowly at 20 then rate the rate of infusion. Today they got to 175 and it still finished in 2 hours. I told them I could do it in a longer amount of time but it finished in 2 hours. Unfortunately, my schedule with it being so far away doesn't allow for the infusions to be done too much slower.
Tomorrow I will get there at 7:30 start at 8 and I need to be gone by 11 because I have to return my rental car, pick up my car and then drive to work by 1:45. Then I work until 7 and then go home and infuse for another 3 hours. Same thing on Thursday. I can't call in sick because my boss is out of town and her kids would be left hanging.
After the 5 days, how often do you guys do this? My insurance won't approve home care for it so I have no choice but to go so far away and there is no one I know that could drive me.
The infusion today was pretty tough too (3rd) day. As soon as it hits me I feel tired and within 5-10 minutes I am asleep. They have me hooked up to blood pressure machines and take my temp every 15 minutes but if I'm not awake enough to open my mouth and my bp is normal then they just skip it.
Today after I don't feel as nauseous. I stayed and did a bag a saline after the ivig, but I feel warm, my ears are red, and I feel weak. My headache is still there but not as bad as it was this morning. Tomorrow will be day 4 so hopefully since I skipped monday it will really be like day 2 and not so hard!
Thanks for all the advice and support!
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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Tracy9
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Mine was supposed to be five days once a month. I'm really worried about you getting meningitis with those headaches. Infusing it slowly is the key.
I got it about 2 days after the 5 days was done. After that happened I changed to 2 days every other week instead of 5 days once a month.
I always fall asleep too. If I get red at all, they slow down the infusion rate right away. That is symptom that you are reacting to it.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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I just want to clarify that aseptic meningitis is a side effect of IVIG and being infused too fast is a major cause of it. If you are getting bad headaches now it is a warning sign. Having meningitis meant a 4 day stint in the hospital for me, about a month recovery time afterward at home, and EXCRUCIATING pain that no pain killers would touch; not even IV Dilaudid. I laid in the hospital just sobbing wishing I had a chainsaw to cut my head off.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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My experience on IVIG has been very mild. I get a slight headache after getting it, but that's really the only side effect I've experienced. About 6 weeks after tarting my first course, I got a lot better on all my symptoms, but then they returned again a few weeks later. I've started a second course now and I can say that it's very predictable that IVIG help my neurological pain (it helps a lot) but other symptoms seems uneffected, at least for now. Hope that's helpful!
Posts: 30 | From Massachusetts | Registered: Dec 2009
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Tracy9
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Today when I went for a blood draw I went to the hospital pharmacy and actually spoke to the pharmacist. I found out my IVIG is there, and has been there for over a week. He even showed it to me.
I then went to the Cancer Center. I was told I would be "all set" as soon as the pharmacy got it. I'm sure by the time I got there the pharmacy had probably called and told them I'd been down there....because I was of course finding out it had been there over a week was not making me real happy.
Anyway, my nurse would not come out and talk to me, but the receptionist delivered the message that "they are working on reimbursement issues and scheduling and I can check back on Monday." Today is Wednesday.
This is such BS. She told me I was ALL SET and ready to go as soon as the IVIG arrived. I'm so sick of getting jerked around!!! Honestly, the pharmacist told me the new one they switched me to is VERY expensive...do you think the hospital would have BOUGHT it if it hadn't been approved first by my insurance?
I think now they are going to punish me for going "over their heads" or whatever and going to the pharmacy to check and see if it was in. I'm sure she is LIVID.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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interesting...i told them today to not go over a rate of 150..my allotment is 220..they start at 15 or something low like that and then increase it every 15 minutes until they get to 150..i finished in 2 hours again today..i asked them about this but they said it's the way they time it..and i said i wanted to do it over more time but i don't think they understand because it's a pump and I think it's preset time but infusion speed is adjustable..I think how it works it that it's set for 2 hours..and then u can choose to let x amount of cc's per pump..and they are letting up to 150 (now)..i dunno those because i've never used their pumps..
I hope I don't get menigitis too..what are the symptoms..My temp goes up to normal 98.6 after the infusions and starts out at 96/97..my cheeks are red, my right knee hurts so bad, and i get the headaches etc..I am also very irritable because I am so over tired still dealing with a car situation..and working full time and infusing at night and trying to manage it all...
My neurologist said that I take a break for 3 weeks after tomorrow (my 5th day) and then meet with her. Then I will do once a month if we find it beneficial. That doesn't seem like enough to me? I feel like this is definately doing something because when I do vit-c/b-12 infusions I get the same reactions with nausea, headache, fever, red cheeks and ears and fatigue..so i feel like it's gotta be doing something good for my immune system..
I also have other systems from it thought like my face spasms came back, knee nerve pain and just in pain in general all the time..hard to walk..hard to drive..brain seems foggy-I am not understanding things-i don't remember names-i feel so horrible after the ivig but then i do the rocephin and feel good..it's such an odd combo but i feel like if i am that tired and sick it must be helping me.
what is standard for teatment?
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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interesting...i told them today to not go over a rate of 150..my allotment is 220..they start at 15 or something low like that and then increase it every 15 minutes until they get to 150..i finished in 2 hours again today..i asked them about this but they said it's the way they time it..and i said i wanted to do it over more time but i don't think they understand because it's a pump and I think it's preset time but infusion speed is adjustable..I think how it works it that it's set for 2 hours..and then u can choose to let x amount of cc's per pump..and they are letting up to 150 (now)..i dunno those because i've never used their pumps..
I hope I don't get menigitis too..what are the symptoms..My temp goes up to normal 98.6 after the infusions and starts out at 96/97..my cheeks are red, my right knee hurts so bad, and i get the headaches etc..I am also very irritable because I am so over tired still dealing with a car situation..and working full time and infusing at night and trying to manage it all...
My neurologist said that I take a break for 3 weeks after tomorrow (my 5th day) and then meet with her. Then I will do once a month if we find it beneficial. That doesn't seem like enough to me? I feel like this is definately doing something because when I do vit-c/b-12 infusions I get the same reactions with nausea, headache, fever, red cheeks and ears and fatigue..so i feel like it's gotta be doing something good for my immune system..
I also have other systems from it thought like my face spasms came back, knee nerve pain and just in pain in general all the time..hard to walk..hard to drive..brain seems foggy-I am not understanding things-i don't remember names-i feel so horrible after the ivig but then i do the rocephin and feel good..it's such an odd combo but i feel like if i am that tired and sick it must be helping me.
what is standard for teatment?
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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It's typical to have treatments only once a month depending on dosage and what condition they are treating. Some people get smaller amounts but more frequently ie. once a week or every two weeks.
Posts: 984 | From San Diego | Registered: Nov 2006
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susank
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This is making me not want to do IVIG. SubQ maybe. I started a thread about IMIG which I don't think anyone understood. ie the IM injections of Gamma Globulin. I would prefer to try a couple of IMs to see what happens. Thoughts on IMIG please!
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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