Looking for opinions on IVIg
AnonymousDecember 1, 2008 at 6:18 pm
I’m on my second day of treatment, just finished. Yesterday’s treatment went fine, it took about 7.5 hours and we went very slowly ramping it up to 100mL/hour. Everything was fine this morning when I got up, I felt great, in fact, better than I have in three or four weeks. Then we started the second infusion at the same slow rate and about an hour into it my kidneys started hurting. We gave it a little more time, I tried to drink more but I started getting nauseated so that was tough. To make the next eight hours short we slowed the rate down more and more but I kept getting more and more kidney pain and my belly kept getting bigger and bigger and bigger. So we stopped it, there wasn’t much left by then anyway. Now I’m sitting here looking like I swallowed a whole watermelon wondering what went wrong. And my kidneys hurt pretty badly too. I’m annoyed with my body. But I would like your opinions… has my body just had enough of this stuff? Do I need to do only one day every week instead of three days every three weeks? Do I need to cut down on the amount again? Ugh, I feel so horrible, I do not want to go through this again tomorrow. 🙁
AnonymousDecember 1, 2008 at 9:30 pm
whats the deal? 3 infusions in a row every three weeks? I think your idea of one every week might be better for you. Are they testing your kidney function? Do what your gut (no pun intended) is telling you. You are really good at knowing whats best. Stay posted.
December 1, 2008 at 10:52 pm
Did they use s/d this time? Different brand containing sugars? I hope you can figure this out, it sounds like you are doing all the proper protocol, fluids, slowly ramping, stopping when pain starts. If you are using gammaguard, give Baxter a call and there is a special dept. that deals with adverse reactions. Give them the lot numbers and see if they have anything on them? Good luck, thinking of you. PS Baxter is in Illinois, Deerfield Ill I believe.
DAwn Kevies mom
AnonymousDecember 1, 2008 at 11:25 pm
Sometimes the patient does know best, so tell the doctor that you’d like to try it one day. My maintenance infusions were done one day every other week and I did well. They were kept at one day every other week and were slowly cut down so I was only at the hospital for four hour instead of seven or eight.
And do check to find out if the brand of IVIG was changed after the first infusion.
AnonymousDecember 2, 2008 at 4:31 am
Thank you for your help and support. I am not in as much pain this morning but I am so puffy I feel like I’m wearing seven extra layers of clothes. I’m scared to weigh myself… and I haven’t peed since last night either but I’m cranking the water now.
It is the same brand I’ve always been getting, Gammaguard Liquid, and they always send me the same lot numbers for the entire treatment, i.e. all six bottles come from the same batch. We’re being even kinder to my body than we have been for the last year and it still doesn’t like it.
After reading your suggestions I think I’ll email my doctor and see what he says about going down to just one day a week, or every other week. My next treatment starts the day after my doctors visit, on the Saturday before Christmas, so getting any changes done then will be almost impossible since my appt. is at 4pm Friday.
I’m really not looking forward to today, I almost had my husband take me to the hospital last night so you KNOW I was feeling rough… but I fell asleep instead with one heating pad on my back and one on my belly. That helped.
Thanks again guys. I’m just stumped why all of a sudden my body is freaking out on day two but then nothing about this disease has been all that predictable so why this. :rolleyes:
AnonymousDecember 2, 2008 at 8:56 am
I think you need to call the dr that you went to about your kidneys & the swelling in your abdomen. Get in there while it’s happening & maybe he’ll be able to tell you SOMETHING.
I think doing treatments once a week is a good idea. It’ll be easier on your body & hopefully you won’t swell up so badly.
I agree with Dawn that you should call Gammaguard. They might be interested in knowing what’s going on with you.
I hope you feel much better today.
AnonymousDecember 2, 2008 at 9:01 pm
[QUOTE=Julie]I’m on my second day of treatment, just finished. Yesterday’s treatment went fine, it took about 7.5 hours and we went very slowly ramping it up to 100mL/hour. Everything was fine this morning when I got up, I felt great, in fact, better than I have in three or four weeks. Then we started the second infusion at the same slow rate and about an hour into it my kidneys started hurting. We gave it a little more time, I tried to drink more but I started getting nauseated so that was tough. To make the next eight hours short we slowed the rate down more and more but I kept getting more and more kidney pain and my belly kept getting bigger and bigger and bigger. So we stopped it, there wasn’t much left by then anyway. Now I’m sitting here looking like I swallowed a whole watermelon wondering what went wrong. And my kidneys hurt pretty badly too. I’m annoyed with my body. But I would like your opinions… has my body just had enough of this stuff? Do I need to do only one day every week instead of three days every three weeks? Do I need to cut down on the amount again? Ugh, I feel so horrible, I do not want to go through this again tomorrow. :([/QUOTE]
Have you had this sort of reaction before? I’m really surprised the person administering the infusion didn’t call your doctor when you started to swell up and have kidney pain. Getting that swollen, being unable to urinate, and having that amount of kidney pain are all signs you need to get seen by a doctor ASAP. Kidney damage can happen quickly and isn’t reversible. Please, get seen right away.
I’ll be praying for you. *hugs!*
AnonymousDecember 3, 2008 at 3:20 am
Well yesterday was the last day of my treatment and it went much better despite my nearly hysterical reluctance to do it. Before I get into what we did let me answer the following:
[QUOTE]Have you had this sort of reaction before? [/QUOTE] and [QUOTE]I think you need to call the dr that you went to about your kidneys & the swelling in your abdomen. Get in there while it’s happening & maybe he’ll be able to tell you SOMETHING.[/QUOTE]
Yes, this belly swelling and kidney pain started back in September. I managed to get to my family practice doc while my belly was enormous and they ran blood tests to check my kidneys and liver as well as did an ultrasound to check my liver and kidneys. Everything came back normal except my CO2 level and liver enzymes were a little off. Nobody seemed terribly concerned about anything except for me and my nurse so we took it upon ourselves to cut the rate in half which seemed to have helped until Monday.
So we noodled this around a bit and the only two differences between Sunday and Monday were that 1) he cut 15 minutes off the 25mL/hour part and 15 min off the 50mL/hour part so I was a total of a half hour shorter and 2) I only slept a couple of hours Sunday night due to sweating all night and having to change my clothes. That second part isn’t all that unusual for me so I’m kind of discounting it except that it made me more tired than usual. We added the 30 minutes back in and then some – now we do 1 hour 15 minutes at 25ml/hour, 2.5 hours at 50mL/hour, and then the rest at 100mL/hour. That is making my infusions more than eight hours so we will have to negotiate with the insurance company because they only authorized 2 hours per session which is hardly enough at 200mL/hour. But I didn’t have any more kidney pain last night and while my belly is still pretty big it doesn’t hurt anymore either.
Then we called Baxter – or rather my bulldog of a nurse called Baxter and kept calling until he reached a live clinician. The kidney pain they are familiar with and said we are doing all that we can, the belly bloating and the fact that it happens so rapidly during the infusion is something new to them – OF COURSE – so he said he was going to do some research and call us back. Basically what me, my nurse, and my husband with the assistance of Baxter are doing is composing an email to my doc with an update on what’s going on and questions/suggestions on what to do to try to get an answer before my next treatment. (Christmas time, can you believe that? I have poor timing)
I am concerned about the kidney pain, I had quite a few kidney infections as a child so I know what it feels like and I know my kidneys are already not in top condition though all blood tests say they are normal. Other than my nurse and husband though I can’t seem to get anybody to do anything other than scratch their heads in puzzlement. The three of us sat here yesterday feeling like the blind leading the blind trying to diagnose something for which we are completely unqualified. I am keeping a close watch on things, I am urinating again and it’s a normal color though cloudy from the proteins. The pain is back down to about 1/2 wherein Monday night it was close to 7 or 8 – the misery level and I am marginally less puffy today.
I don’t know when we will get all this straightened out but if anything significant happens I’ll post again and let you all know. The most frustrating thing about this disease is that just as soon as it seems we’ve gotten things into a routine something happens to throw it off again. Well at least I’ll never get bored. :rolleyes:
AnonymousDecember 3, 2008 at 2:15 pm
I don’t really know what to tell you about your post. What specific labs have you had done? CMP?CBC? Urinalysis? Have you had any Sed rate? CPK? Any other immune type screens? I ask because I remember you once said you had the dry eye problem and that you felt it was an autonomic nervous system issue. I also had that and basically thought the same thing, but it turns out I have lupus and that is one of the signs of lupus. I didn’t really think I had any symptoms either, but I do. Once he started asking questions it all made sense. I have lower back pain with my IVIG, which is quite uncomfortable but nothing like you are experiencing. There is a high incidence of renal problems with lupus too, but I would have thought something would have shown up in your blood work. Mine was and still is quite “off”. You may want to consult a renal person too and get their opinion. let us know what else you find out though….Also, I get once a week IVIG rather than several days in a row and it works a LOT better for me. Gabrielle
AnonymousDecember 4, 2008 at 6:31 am
Thanks Gabrielle and Jim,
To answer your questions:
[QUOTE]What specific labs have you had done? CMP?CBC? Urinalysis? Have you had any Sed rate? CPK? Any other immune type screens?[/QUOTE]
CMP, CBC was done in September when I had a big belly – everything except CO2 and ASG were normal
I have not had a urinalysis done in years. I am not sure about the sed rate, I don’t think they did that in September. I don’t know what a CPK is but I don’t think they did it. The paperwork I got says only CMP and CBC.
Back in May I had an ANA test done that showed it elevated, at the time my TSH was also elevated so they think/thought I had Hashimoto’s Thyroiditis. However, unmedicated my TSH level has returned to normal.
I’m making an appt. to get more blood and urine tests done – aside from CMP, CBC, Sed. rate, CPK, urinalysis and ANA what else do you suggest I get tested?
We have not yet heard back from Baxter’s research but my own Google of “IVIg abdominal distension” discovered a number of people’s blogs who are on IVIg and have experienced the belly bloat. Nobody seems to know the cause or treatment though and all the medical articles were related to giving people IVIg when they HAD belly bloat due to some infection so not terribly helpful.
I guess my biggest question is why all of a sudden does it seem like my tolerance for IVIg has dropped to minimal which MAY be answered by blood tests but I’m not real hopeful. 🙁
AnonymousDecember 4, 2008 at 8:39 am
Hey Julie! Hmmm! Positive ANA huh? With your kidney’s hurting and filling up in the belly.
Here are some possible labs I would have them suggest to do.
ANA, Anti Double Stranded DNA, ANCA, SPE, C-3, C-4 and a CH 50. And also a GFR.
I know one time before we had mentioned Lupus because of your symptoms. An elevated ANA is still a possible for Lupus. Plus back then you had a rash! I would keep insisting on having these labs I listed for a while. Lupus is very tricky when it comes to labs. Many normal to abnormal and back to normal.
Lupus is very hard to diagnose too!
But it might be possible.
This is bad when a medication gives you a hard time. That Rituxan they are giving me is not fun getting either. I have two more weekly treatments and then I will go every month. Then they will taper me down and stop giving it. If I do better! Hope you get better soon. Hate being sick! Wishing you better days to come.
AnonymousDecember 4, 2008 at 1:12 pm
Linda is right, just ask for a lupus work up and/or a referral to a rheumatologist. My tests were borderline, positive, and negative but a skin biopsy provided proof of the lupus. The urinalysis will check for a urine infection too, as well as protein. If you have kidney issues, you may “spill” protein. Don’t get too worked about this, but I do remember you saying the dry eye thing, which can be Sjogren’s, and is one of the things on the lupus test. ALL of this stuff is autoimmune, but it helps explain some things, at least for me. CPK is a muscle enzyme and when you have muscle damage or inflammation, like I do, it is elevated. It can also be a sign of other things. The C 3 a 4 are complements and are usually low in lupus. So, in a nutshell with a positive ANA, just ask for a blood work up for lupus or referral:)
AnonymousDecember 4, 2008 at 1:28 pm
😮 Hi Julie,
I’ve got that bloated belly stuff going on as well.. Don’t know if its from ivig or the steroids… I’ve been lean (thin) all my life so this is new… Sucks, cause I’m finding all my old pants don’t fit, yet I really haven’t gained weight… I’m curious as to what you find out… deano
AnonymousDecember 4, 2008 at 1:49 pm
[QUOTE=Julie]I don’t know what a CPK is but I don’t think they did it. [/QUOTE]
There are a million things that you could test for…What about aldosterone and renin? Aldosterone helps regulate sodium and potassium. Renin (from the kidney) signals the body to produce aldosterone. Off quantities can lead to either no fluid retention…or too much.
AnonymousDecember 4, 2008 at 1:55 pm
I’ve got that bloated belly stuff going on as well.. Don’t know if its from ivig or the steroids… deano[/QUOTE]
Whereas perhaps it could be due to the IVIg…. BUT bloated belly is definitely a side effect of steroid use. Steroids can “rearrange” how your body is shaped and/or changes location of body fat.
AnonymousDecember 4, 2008 at 4:10 pm
If you are getting IVIG a blood test for Lupus will not be accurate. IVIG affects the results.
Emily tested borderline positive for Lupus but does not have it. She had the test before she was dx’d with GBS in 2005 & then again in 2006 after receiving IVIG. The test before IVIG was negative. I was told it was from the IVIG.
AnonymousDecember 4, 2008 at 4:57 pm
Actually I inquired about the IVIG and lupus testing because you had mentioned it before to me that it was caused by IVIG. I spoke to my neuro and the rheumatologist and was told the sed rate would be elevated, but once we did the other labs, many other tests were off, and of course the biopsy confirmed it. I didn’t want to infer that was the only testing to be done, but brought it up because a renal problem can be manifested in bloating, and with the positive ANA and the dry eye problem, it might be worth looking into for Julie. But thank you for bringing that up, especially with borderline positive testing.
AnonymousDecember 5, 2008 at 4:49 am
Good grief, how are we ever going to figure this out if the IVIg affects the blood tests? I hadn’t thought about that but now that you mention it when they took my blood back in September it was the consistency of jelly and they couldn’t get more than a 1cc out – and that was after two baby aspirins. I can see how having such thick blood would affect the sed. rate. but I know it doesn’t stay that thick… it thins out again sometime during the three weeks after the infusion. I can tell because my arms and legs look like a road map for several weeks – the veins are all sticking out and blue – it’s quite ugly and of course not all that healthy either. But I try to behave and move my legs around, get up and walk after an hour and wear compression stockings to keep from getting a clot. The funny thing is that everyone has seen my road map legs and arms but they aren’t concerned about that either whereas when that happened to me in the hospital they kinda freaked out and put me on those funky boots that squeeze your legs, blood thinners and the like. At any rate, I do it myself but that doesn’t seem normal to me.
I made a list of the blood tests etc. and will make the appt. today – if it does turn out to be Lupus I have a terrific Rheumatologist that I like very much. My gut feeling (pun intended) is that it is not Lupus, just side effects, but I’ve been wrong before… once or twice….. 😉
I’m trying not to be too depressed about this but it’s hard. I was doing so well and now I’m not – I know that’s the nature of the disease but sometimes it just gets me down that nothing is predictable.
AnonymousDecember 5, 2008 at 8:47 am
I got tested for Lupus 5 years showing either nothing or borderline. Sed rates on me have always been normal! All Lupus patients can be different and have different symptoms but we all still have Lupus.
Just curious if you are taking medications besides IVIG.
What list are you taking? Some drugs can actually cause a drug induced Lupus. You may have the labs done and nothing shows up and then a year later you get positive labs. Everything you describe sounds like lupus though!
Fatigue, rash, belly aches, nausea, dry eyes, and thick blood. That has me concerned. Thick blood could possibly mean a clotting problem and some people with lupus can get that.
It took my doctors 5 years to diagnose me. I showed a bunch of borderline positives and still got no diagnoses. But an ANA is indicative of Lupus and a few other auto immune disorders.
Stick with the Rheumytologist. Also, the next time you break out in a rash, I strongly urge you to see a Dermatologist and get a skin biopsy. That might tell what is going on!
Good luck on the labs! Hope you feel better soon!
AnonymousDecember 5, 2008 at 9:30 am
Julie – I did some research on Lupus. I’m sure you’ve already looked Lupus symptoms up. The rash seems to usually be on the face & I don’t believe it goes away. I think I remember you said that your the rash was an all over prickly heat type rash & it goes away.
Here is a link I found describing the rash:
And here is a link describing the symptoms of Lupus:
As you know, Emily has opthamalopegia from CIDP & her very first symptom when her CIDP flares up is dry eyes. Her eyes get dry even before I see a decrease in movement in them.
What brand of IVIG do you use? Some brands contain sucrose which can cause problems with your kidneys.
Studies show that IVIG increases the viscosity of your blood. If your blood is that thick then I would talk with your dr’s about using a blood thinner, especially after your IVIG infusions. I know there was a concern about this when Emily was getting the huge amounts of IVIG. There is an increased risk of stroke so it’s something you definetly want to look into.
Please don’t get yourself worried about having Lupus. Remember that many autoimmune diseases have nearly the same symptoms. It’s possible to have 2 or 3 symptoms that sound like Lupus but they are also the same symptoms of CIDP or those Lupus symptoms could be side effects from the IVIG.
AnonymousDecember 5, 2008 at 9:30 am
Thank you for the support. The only medication I take daily is one baby aspirin which I increase to two when I am getting treatment. During treatment I also take Benedryl and of course IVIg. I don’t take any other drugs unless I have to though occasionally I will take 1/4 of a provigil if I am feeling OK and have a lot of housework to do. I drink coffee in the mornings and occasionally the afternoons if I don’t feel like a nap. And about once a month I have a drink of alcohol with dinner. Other than that I stay away from drugs, prescribed and over the counter.
Interestingly I read up on the coffee I drink – Kava, 99% acid reduced instant coffee. I know it sounds nasty but my intestines can’t take regular coffee… anyway I read that the chemical they use to reduce the acid can cause a low CO2 level, which I had, so that might be the explanation for the low CO2 level. I should really give it up but it’s one of the few things that gives me energy. :p
I am feeling a lot better today, my energy level has gone back up and my belly back down. I don’t think I need a provigil to do housework today. 🙂
December 5, 2008 at 1:43 pm
Kevie had an issue w/ co2, (I think it was CO2 levels) Anyway, if that was what it was, they said it was holding his breath before the poke and that affected the results.
AnonymousDecember 5, 2008 at 4:32 pm
Hey Kelly and Dawn,
Kelly I missed your post this morning as I was posting at the same time but I just checked out the links you mentioned and guess what – this is what my rash looks like.
I just scrolled through all the images and while my rash is certainly not that bad it is in the exact same places as these people and hasn’t gone away since it started last March. It’s on my forehead by the hairline, above my eyebrows, on the tip of my nose and on my chest. It starts out red and puffy, then gets scaly and itchy, then if it heals at all it leaves a scar. The only difference is that they say discoid lupus rashes typically do not itch and mine do when they get to the scaley stage. Perhaps that has something to do with my nerves being messed up though. Since it seems the rash is set off by sunlight I think it’s fortunate my eyes are so sensitive to the sun (a silver lining if I ever heard one). Well it’s nearly impossible to get an appointment with a dermatologist around here but maybe I can convince my doctor to pull some strings.
Dawn, I think that’s funny about Kevin holding his breath… I’ll have to pay attention to that when I get my blood drawn next week, maybe I’m doing the same thing. :p
I can’t thank you all enough for all your input. Not a day goes by that my husband and I don’t praise this forum and the relief it has brought us. Have a great weekend ya’ll.
P.S. I use Gammaguard liquid
December 5, 2008 at 6:23 pm
If it is Lupus, it would explain your fever issue, do you still have them?
AnonymousDecember 5, 2008 at 6:56 pm
Yes I do still have fevers, daily, they run between 100-101.5 but as you know I’ve had a fever for more than two years now and during that time have had many ANA tests. It was only this past Spring that it showed up positive. I sure hope it’s not lupus but it’s not the worst thing that could happen.
AnonymousDecember 5, 2008 at 10:22 pm
Julie – Just remember that if it is Lupus there are treatments for it. The treatments for Lupus will also help CIDP.
You should call your rheumatologist to see if they can get you in.
I think IVIG can also affect the results of a CPK. So make sure to keep that in mind as well.
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