IVIg "atypical" side effects
AnonymousSeptember 9, 2008 at 5:42 am
Back in March I broke out into a weird pattern of blisters shortly after my IVIg infusion started. We doubled my Benedryl and it didn’t get any worse so we continued the treatment. Fast forward to now and I still have those blisters – most had been reduced to just small scaly patches that itch like mad until they disappear. I’d say about 80% of it is gone with the exception of a rather prominent patch on my forehead – oh so attractive I assure you. :rolleyes: At any rate – we increased my IVIg dosage in the last two rounds and while my nerves are doing better I’m getting lots more side effects and those darn patches are coming back. I go to the doctor in a few weeks so I’ll ask him about it but I was wondering if anyone else has had this come up. I’ve tried cortizone creams but these blisters ooze stuff and the cortizone tends to make that worse… the best so far has been Bactine spray but that just deadens the itching, doesn’t make the blister go away.
Another side effect from the IVIg that has gotten much worse is the belly bloat and ache. I haven’t managed to get in to get any blood work done recently but in the past my liver enzymes have sky rocketed after IVIg and then settle down a few weeks later. Now that we increased the dosage of IVIg my belly is always a mess, you can see the outline of my liver at times, and I just have no appetite at all, nauseated and sick to my stomach most of the time. Any suggestions for this – I take Maalox, or Pepcid and Gas-X and try not to eat anything difficult to digest but I still have a lot of pain, bloating, nausea, etc.
I’ve had a lot more of my usual side effects too – meningitis, kidney pain etc. so I am likely going to ask the doc to back down a bit, maybe from 45g to 40g to see if that helps with the side effects. It figures doesn’t it, I am one of those people for whom IVIg has been a miracle cure – but the side effects make it quite unattractive to me and are almost as debilitating as CIDP at times.
Thanks for any input,
AnonymousSeptember 9, 2008 at 7:59 am
Hi Julie! I think it might be wise to rule out the IVIG treatment and get to see a Dermatologist. I would schedule an appointment with the dermatologist as soon as possible. We can get other auto immune disorders even with what we already have. And sometimes a drug can cause Drug Induced Lupus. Or you may be getting the skin form of Lupus. A skin biopsy which is very simple can be performed and checked. If it’s an allergic reaction you would get the hives. Terrible itchies. But lessions that oooze could be totally different. Folliculitis, Lupus Lessions, Dertomyositis and also a Porpheria Problem. It can cause you stomach problems with Lupus and you can also get sicker and sicker without treatment. All four listed can cause itchies and oozing. And the biopsy will show allergic reactions or a problem saying Lupus.
Not trying to be bossy or tell you what to do, but I would get checked out very quickly. Just to make sure you have not gotten another auto immune disease trying to come out of the woodwork. These sound like Discoid Lessions but I can’t see them and am not sure. But Lupus once developed if not treated can be fatal if ignored and it can also make you very sick. Something you don’t want to add on to what you already have. Please take my advice and get this checked.
So many that get drug induced lupus or even lupus first think they are having an allergic reaction to something and let it go. Then they get so sick and can’t function. Take my advice and get this checked. Folliculitis is very treatable with antibiotics. But the others are serious problems.
I hope this helps and I’m not trying to scare you, but this could be something totally different than that IVIG. How long have you been on IVIG’s and if you have had this a while and had no major problems before the this could be a totally different ball game.
Hugs my friend!
AnonymousSeptember 9, 2008 at 8:05 am
Sorry you having such luck. I used to get a rash every time I got the IVIG..it looked more like really bad acne all over than anything. It itched and then it burned and it oozed clear stuff. It took several weeks to go away. My dr tried to tell me it wasnt from the IVIG but it happened every time but once that I got it. I am now getting a much lower dose and not had a rash. That tells me it was the ivig.
I get pain from it. I call it traveling pain b/c it moves and only lasts a second in each area it hits. One second it’s on the top of my foot, then the side, then my calf, then hand…all over of my arms and legs…elbows down and knees down. Strangely, all areas I am affected most. And, it lasts for only the night of the treatment. Nothing in the way of pain meds takes it away.
I used a benedryl gel for that rash …it was clear and it helped with the itching, but it did NOT help make the stuff go away.
good luck to you…I wish you many better days.
AnonymousSeptember 9, 2008 at 8:21 am
Tho mysteriously, docs never seem to have heard of it. Web up the side effects of your IVIG brand and look up ‘pruritis’ and ‘urticaria’ [hives]. It took me two trips to my dermatologist to have it long enough to ‘see it’, and topical steroids knock it out fast. It truly does ITCH! tho.
It pays to read all that fine print on the ‘full prescribing information’! It’s a livable side effect, far better than headaches!
I can’t help you with the bloating per se, but when I started out I would gain 4 pounds each round of infusions and lose two of them before the next round. This went on for about 2 years and then stopped. I don’t know if it was a brand change that stopped the gain or what…But, those pounds sure did add up!
As for the meningitis and all? Check very carefully how the IVIG is prepared and delivered to you…that all safety precautions are being taken and also check that rate? It’s either a rate issue or a brand issue….the option is you really can’t tolerate it. I don’t know about you, but that option isn’t one I’d consider at all – it’s a tradeoff.
Good luck this next time!
September 9, 2008 at 12:35 pm
Kevie has that rash on his forehead, it looks like little blisters. Luckily his golden shiny curls cover it!! I put prescription stregnth cortisone on it. He did get the headache really bad this time. What about switching brands, maybe the particular detergent used in your brand is what bothers you. Good luck and hope your husband is doing better too!!
AnonymousSeptember 9, 2008 at 12:42 pm
Julie- I just started in the last 2-3 months with the rash. Doc and I ruled out new hair sprays, shampoos, etc. The diagnosis was folliculitis and he prescribed HC Valerate 0.2% and I tried 1 1/2 tubes, went back to him and he decided it was acne, side effect to the ivig. I tried Benadryl, like you, and it didn’t help the rash. The bloating(my nurse calls it muffin top) just started when I was on Octogam, but switched back to gammagard, had a 20 lb. weight gain since Christmas, and like homeagain said, the pounds add up, and I have only gotten 4 off!!arrgggh…..any chance he can slow that rate down a little bit more at home? I have been taking a Compazine at bedtime for the nausea, and it seems to be helping some, eating a little better, but still on soft foods mostly. Does make sense to get a culture on one of those blisters though-can your home nurse do that and draw any blood work you need just before he starts your ivig? What brand ivig are you on now? You haven’t switched brands, just gone from 40-45gm? My headaches are 0 now that the rate is 450cc over 4+hours, and I changed my premed to Darvocet-2( or Tylenol-2) and benadryl-50mg (both 1 hr before ivig) and 1/2 way through Aleve-2 and Benadryl-2 8 hours after first dose and Aleve-2 12 hours after first dose. Always a guessing game isn’t it? That is what is working for me now anyway. Good luck Julie. Maybe Canada Jan and I better reduce your ETOH a little at the tavern:D .
AnonymousSeptember 9, 2008 at 1:26 pm
Well I did some research, looked at a lot of spots on people and the closest thing in description and visual appearance are the discoid lesions. I’m not jumping to any conclusions though and I’ll see if I can get an appt. with a dermatologist sometime this year. There aren’t many around me and mine died of cancer last year… so far I haven’t been able to find anyone who can see me before December but I’ll keep trying.
Thanks for the input, it’s always something huh?
And thanks for the wellwishes for my husband too, he is doing better though the CT scan of his abdomen showed enlarged lymph nodes so we’ve got to track that down… as I said, it’s always something isn’t it?
AnonymousSeptember 9, 2008 at 7:47 pm
I had what I thought was something like rosacea a couple of months ago; I have my IVIg every four weeks.
I never even thought of it being in anyway related to IVIg. It took about 3-4 months to go away, and I get little bits from time to time. It itchs like mad and is just red, raised and not nice.
I got pure Vitamin A cream from my facialist (my one personal luxury); and that worked really well. Any little spots are dealt with quite quickly.
She said that cortisone, etc. doesn’t work on that stuff very well – steriods will work but obviously I didn’t want to add to the load of toxin already in my body! The other thing to remember is that no matter what you try, your body takes about 28 days to recycle skin cells (longer as we get older!), so it won’t really get “cured” for at least that long and likely longer.
Anyway – it might not be anything to do with what you guys are dealing with — but as I said the Vitamin A cream worked a treat – helped with the itching as well. Could be a less “invasive” alternative to the other things.
AnonymousSeptember 9, 2008 at 7:59 pm
I get horrid headaches about 1-2 days after the IVIg that usually leads to vomiting (that’s even after premedicating). I’ve had to go to the ER and get an antinauseant and Dilaudin (for the pain).
Also, I’ve developed eczema on the palms of my hands from the IVIg. Not pretty and QUITE itchy!
AnonymousSeptember 9, 2008 at 8:28 pm
When Emily was on the super high doses of IVIG she got a weird rash on her forehead. It was light brown scaly spots. They weren’t raised. I put hydrocortisone cream on them & started using my face wash on her. They cleared up in a short amount of time & haven’t come back. I still use my face wash on her daily.
Emily has weird stomach issues as well. She got really bloated & had terrible stomach pains when she was on the high dose IVIG. We’ve tried everything from taking her off of milk & food containing milk to putting her in a warm bath when she has the pains.
She’s also taken Prevacid & Gas-X. The Gas-X seemed to alleviate some of the bloating. She says that a warm bath really helps.
AnonymousSeptember 10, 2008 at 5:10 am
Hey Debs, Ally and Shelly,
Thanks for your responses. I’ll give the Vitamin A a shot, I’ve got some around here somewhere… the spots aren’t that bad anymore, they are almost gone after 7 months but they had pretty much stopped itching until the last two infusions. Wow, it’s maddening to wake up at night scratching yourself raw! Ally, my hands and feet peel too but I wash my hands a thousand times a day so they are pretty raw to begin with.
As for the belly bloat, I know it’s related to the IVIg and has gotten much worse as we increased the dosage. On a good note I’ve lost 10 lbs of the 30 I’ve gained but on the other hand I’m not eating properly, everything makes me nauseated and I can’t chew very well either. Fortunately I don’t have much sense of taste so though stuff hitting my stomach makes me nauseated, it’s not the taste or smell. I’m lactose intolerant so I don’t drink or use milk products but now I have little tolerance for anything acidic too – my favorite food spaghetti gives me a stomach ache now. 🙁
The headaches come and go, the prednisone helped for awhile but unfortunately gives me horrid nerve pain. My doc says “you know people TAKE prednisone for nerve pain don’t you?” I know – my body is weird, I’m sick of my body being weird but I can’t just redirect my DNA to make something different. Popsicles help when the headache ventures into the meningitis range – you know that brain freeze you get? Well it helps with the pain in my brain…
We have tried changing the rates of my infusion but that doesn’t seem to make a difference in the side effects I feel, I get Gammagard liquid, supposedly it has the least amount of side effects of all brands so the only thing I can think of to do at this point is premedicate earlier and stronger and post medicate longer as well. Along with dropping the dosage back down a little bit. I’ll let you all know if anything works for me – thanks again for all your input.
AnonymousSeptember 10, 2008 at 5:42 am
Hi Julie! Bless your heart! You sound so down right now and I hope that you start feeling better soon. Not easy having to deal with a medication that makes you feel sick. It’s bad enough already being sick and then to have to add on more sickness can be a pain! I hope that you get better soon. And will keep your husband in my prayers! Hugs
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