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Living with Polyneuropathy CIDP, GBS, & CMT

Allergic reaction to IVIG


#1

At 4:58pm on January 3, 2016, Papa Ray said…

I had four days of IVIG treatments the end of November and had the usual side effects, a headache for about four days and body cramps (can we call them Charlie Horses) throughout my legs and upper torso which still are bothering me at times.

Approximately 15 - 16 days after the last IVIG treatment my wife noticed some red spots on my back and stomach that resembled chicken pox for lack of a better description. After three days with the spots multiplying and becoming sore and itchy I went to my GP who prescribed antibiotics and antibiotic cream and antihistamines. They continued to worsen so I called my specialist in Vancouver and she felt that it was an atypical reaction because it should have appeared within 12 days (?) and cancelled any further IVIG treatment until she saw me again which we hope will be this month.

Because the cream that my GP prescribed seemed to make it worse I went back to him and he prescribed Predisone which I am slowly going off of and and a tropical corticosteroid cream which has helped. The bumps have lessened leaving me with red spots over my entire body and after a shower it looks like I have been scalded. Now my skin is starting to peel just like I had a sunburn. Perhaps it is the cream. Was wondering if anyone else has had a similar reaction.

As far as the IVIG goes, I believe that it has helped tremendously. I can walk further, my legs are stronger and although I walk with braces (have for ten years) I no longer need a cane. I think that the good of the IVIG outweighs the bad reaction and am hoping to carry on with the treatment once my specialist in Vancouver sees me again. We live on the Island so it is a bit of a trip to get there. If anyone would like to share what they have done to overcome this allergic reaction to the IG's it would be appreciated. I have also relied on Benydral to help with the itch.


#2

Wow, Ray, do I have a long reply for this. In Aug. 2015 I had my load-in dose, 3 wks later I had regular treatment. Approximately 10 days after that, I broke out from my chest up. My back was covered solid, also had, and still have red spots on my face, arms, chest, around the back of my neck along my hairline, and chest. They started out kind of fine, then would get bigger and more red, My neurologist sent me to a dermatologist, which done a biopsy on my back, and gave me medicine for my face, and a different medicine for the rest of my body, plus a lotion to put on after I get out of the shower. Yes, I look I have been scalded when I get out too. My neurologist put me on Predisone for my next treatment, 3 days prior and 3 days after treatment. By the way, the biopsy showed it was a reaction to my IVIG, which, at that time was Gammaked. My neurologist changed it to GammunexC, well, 9 days after that treatment, the spots really came back again. After a lengthy conversation with my neurologist and dermatologist, I am now on Privigen. I am 2 treatments in with it, and the spots are not worse. I still have some of them, and only some of those itch. The ones that itch I can say almost hurt, like a pimple. I do a Benedryl 30 mins prior to every treatment, plus a Tylenol and Zofran. They are keeping a very close watch on me, and document where every spot is during every treatment. I do home infusion, so I have become pretty close to my nurse, and she notices pretty quick. In some of the areas where I had spots, they almost look like a red scar, or that I have been burned. . So, yes, I have had, and still have a very similar situation to what you are going through. In the beginning, I wasn't sure if the IVIG was worth suffering through this nasty looking and feeling rash, but my neurologist is pleased with the progress that he has seen, plus I go to PT twice a week too, which I am sure with the IVIG has been a help. I was told it can take a good 6 weeks to get the medicine out of my system since it is IV. I am patiently waiting, and hoping the Privigen will work ok for me, and that the rash will leave.....permanently.

Please keep us posted, I am interested to hear how your situation comes out

Good luck to you, and I hope things in all ways get better with your health.


#3

What medicine are you on for IVIG?


#4

Thank you rocketsmoke for your very informative reply. We have indeed been sharing the same problems with the IVIG reactions.

I do not know which IVIG product I was on but I have been on Predisone and a cortisone cream as well as Benydral which has helped immensely. Because my rash has subsided substantially and the IVIG treatment was so beneficial my specialist has decided to continue with the treatments and at this time I am awaiting to hear the date of when I will continue.

The specialist wants me to premedicate with Benydral. Hopefully all will go well. I will keep you posted.


#5

High dose IVIG has a rare side effect of causing some to develop dyshidrotic eczema. It isn’t permanent, but can become worse with each subsequent dose of IVIG. Treatment usually involves topical and/or oral steroids. Refrain from water exposure as much as possible, since it is an irritant. I’ve had several bouts of this and was puzzled when it first started. I developed watery blisters between my fingers, on my face, chest and back and then they turned bright red and began itching like crazy and peeling. Anyway, I am not a doctor just a person battling CIDP. There are several scholarly articles on IVIG side effects and skin reactions. You should look into these and share with your physicians. Hope this helps!


#6



Lola said:

High dose IVIG has a rare side effect of causing some to develop dyshidrotic eczema. It isn't permanent, but can become worse with each subsequent dose of IVIG. Treatment usually involves topical and/or oral steroids. Refrain from water exposure as much as possible, since it is an irritant. I've had several bouts of this and was puzzled when it first started. I developed watery blisters between my fingers, on my face, chest and back and then they turned bright red and began itching like crazy and peeling. Anyway, I am not a doctor just a person battling CIDP. There are several scholarly articles on IVIG side effects and skin reactions. You should look into these and share with your physicians. Hope this helps!

#7

Thanks Lola. For sure I have eczema but it isn't dyshidrotic because it doesn't blister and is not on the soles of my feet. It does however cover most of my body. I would say a good 85% of my body is involved. It is red and itchy and got worse after my second round of IVIGs. The doctor has put me back on a regiment of Prednisone and we are hoping for a lessening of the symptoms. Now I have to go back to the neurologist to have more nerve conductive tests to see if it is the IVIG or the Prednisone that is making me feel stronger.


#8

How are things going to for you Papa Ray? Have you had your nerve conduction test yet? How is the rash doing?

My doctor has halted my infusions until my rash gets better. Put me on Prednisone for 15 days, in hopes to keep rash at bay so I can get back to infusion. My leg feels like it has an anchor tied to it. I am 6 weeks out now since last treatment. Boy can I tell it! The rash is getting better. I have not had any on my feet either. Just from the chest up, especially my hands and around my hairline on the back of my neck. When they do calm down, they peel. Sometimes they come back in the same spot, sometimes they don't. I have spoke with a patient advocate at IGLIVING magazine about this rash, ans she has told me that is it common, some worse than others. Do you premedicate before treatment? I take 3 different meds 1/2 prior. I have been on 3 different IVIG meds, and have had the same issue every time, only some has had a delayed reaction.

I hope you are doing better. Are your treatments done at a facility or at home?


#9

Papa Ray and others,

I also had these same reactions to IVIG, to the point of my neuro not allowing it any longer. My first time in May 2014, I had 5 days of around 150 a day.( Not sure of dose) My schedule was to be skip 5 weeks and then repeat for 1 week revolving with that schedule. I saw dramatic change and was greatly enthused. 2 weeks later, broke out with those dreaded red dots. Neuro put me on Prednisone., and cancelled IVIG to wait and see. We tried another round in Jan of 2015, and 2 weeks later the same reaction only worse. Besides the dots all over the chest and back area my palms and neck got so red and peeled entirely. Looked like I had fallen asleep at the beach for a whole day with no protection. I had been on Prednisone since June 2014 at this time. That was my last try with IVIG and later in 2015 she put me on cellcept. I just weaned off of Prednisone in Jan 2016 and hope I never have to go back to that drug. I hate it. Oh, I still have some red dots that have never gone away entirely, but find that some are not red but the bumps instead. 100's of them. Wish you success.


#10

Ray says, thanks to rocketsmkoke, bbirder and lola, the ivig I was on was Octagan, administered in hosp. and the second was worse than the first. I am now on Prednisone (20mg daily) for three months. Neuro says that if I can find a better ivig, it might be worth a shot. any ideas?? The rash is pretty much gone but the scars remain.



rocketsmoke said:

How are things going to for you Papa Ray? Have you had your nerve conduction test yet? How is the rash doing?

My doctor has halted my infusions until my rash gets better. Put me on Prednisone for 15 days, in hopes to keep rash at bay so I can get back to infusion. My leg feels like it has an anchor tied to it. I am 6 weeks out now since last treatment. Boy can I tell it! The rash is getting better. I have not had any on my feet either. Just from the chest up, especially my hands and around my hairline on the back of my neck. When they do calm down, they peel. Sometimes they come back in the same spot, sometimes they don't. I have spoke with a patient advocate at IGLIVING magazine about this rash, ans she has told me that is it common, some worse than others. Do you premedicate before treatment? I take 3 different meds 1/2 prior. I have been on 3 different IVIG meds, and have had the same issue every time, only some has had a delayed reaction.

I hope you are doing better. Are your treatments done at a facility or at home?


#11

Hello Papa Ray. Glad the rash is getting better for you. Mine has been gone now for about 2 weeks, and like you, the scars do remain. I FINALLY am back on treatment, I had one yesterday, and I am having one today. My neuro has ordered to premedicate with Solumedro which goes into my IV and takes about an hour, and changed my infusion medicine to Bivigam. This will be my 4th different medicine. With the premed of Solumedrol, which is a steroid they are in hopes it will keep the rash from reappearing or at least not as bad as previous episodes. The reason for my neuro to come up with the Bivigam and Solumedrol is because he and the pharmacist at Optioncare, which is my home infusion company, discussed my issues and thought it would be a good avenue to try.

How long do your infusions take? Mine are 5 hrs, 2 days in a row, every 3 weeks. I truly hope something good comes out of this for you. I am happy to help in any way I can, and I truly understand what you are going through. Please keep me posted, and good luck, hope this input can help.


#12

Hi rocketsmoke, glad to hear from you. At this point I am on Prednisone for the next three months. No infusions. My neuro and I will make a decision then. She did a full work up and the nerve conduction tests showed almost no improvement. Maybe it is my age, I don't know. Please let me know how your new infusions go I am keeping my fingers crossed for you.



rocketsmoke said:

Hello Papa Ray. Glad the rash is getting better for you. Mine has been gone now for about 2 weeks, and like you, the scars do remain. I FINALLY am back on treatment, I had one yesterday, and I am having one today. My neuro has ordered to premedicate with Solumedro which goes into my IV and takes about an hour, and changed my infusion medicine to Bivigam. This will be my 4th different medicine. With the premed of Solumedrol, which is a steroid they are in hopes it will keep the rash from reappearing or at least not as bad as previous episodes. The reason for my neuro to come up with the Bivigam and Solumedrol is because he and the pharmacist at Optioncare, which is my home infusion company, discussed my issues and thought it would be a good avenue to try.

How long do your infusions take? Mine are 5 hrs, 2 days in a row, every 3 weeks. I truly hope something good comes out of this for you. I am happy to help in any way I can, and I truly understand what you are going through. Please keep me posted, and good luck, hope this input can help.


#13

Hey folks. Just jumping in with my perspective. I've been on IVIG every two weeks since May of 2013. I kept a bit of a diary of my infusions, the effects (including side effects), which I encourage everyone to do. It's always good to have a record of these things and to not just try to rely on memory.

My first year was a bit shaky. After my loading dose I developed a headache that I thought would kill me (could barely get out of bed for two days, couldn't eat, etc.) but it passed and never came back, although I did occasionally get much lesser headaches on my infusion days after that.

I also had some odd pimples and boils show up here and there, but never any kind of major breakouts. I also developed a rash on the palms of both hands which sounds a bit like the dyshidrotic eczema that was described above (this is the first I've heard of that!) or at least something similar. The description from my infusion diary is "it appears to be many tiny little bubbles of fluid, some wet, some dried out." I showed it to my neurologist. She switched me to a different brand of IVIG (from Privigen to Gamunex) and it went away quickly. She also told me that sensitivities to IVIG can be temporary, and that sometimes you can have a reaction to a particular batch and then it never happens again.

Reading through my diary from that first year I'm reminded of all the little irritations; feeling "spaced out" after infusions, getting chills sometimes, low energy, etc. All of these things would come and go, so it was never a constant state of any side effects.

I mention all this because I had essentially forgotten about it. For the past year or so I've had no side effects that I can attribute to the IVIG. Infusion day is a snap now. I show up at 8:30AM, get plugged in, and I'm out of there just after noon, feeling a big tense (it puts my blood pressure up a bit, which is already on the high side) but otherwise feeling normal. Which is to say, normal but with numbish feet and sometimes numbish hands, but always a bit less numbish on infusion day.

Oh, as I'm writing this I'm remembering another important detail; for the first year and a half I was also getting a dose of Solu-medrol (Methylprednisolone) with the IVIG.

So that's it. Just wanted to add my two cents and to encourage eveyone to keep a log of their infusions and well being.


#14

I agree that doing a diary, or taking notes is a good idea, as I have had to refer to mine for my neuro, my home health care nurse and the pharmacist for my home health care. I have never had the "spaced out" feeling or high blood pressure. My blood pressure always dips down because of the pre-meds I take 30 mins. before infusion. I have had more "pep in my step" the day after my infusions. So far, the Solu-medrol seems to holding the rash at bay, and hope it stays that way so I can get back on track with them.

How long did you take infusions? Did you doctor have you do physical therapy too? I haven't heard many people on this site mention physical therapy. My neuro wanted it to coincide to help with strength, then we started on balance, in which it was helping little by little,


Tingle said:

Hey folks. Just jumping in with my perspective. I've been on IVIG every two weeks since May of 2013. I kept a bit of a diary of my infusions, the effects (including side effects), which I encourage everyone to do. It's always good to have a record of these things and to not just try to rely on memory.

My first year was a bit shaky. After my loading dose I developed a headache that I thought would kill me (could barely get out of bed for two days, couldn't eat, etc.) but it passed and never came back, although I did occasionally get much lesser headaches on my infusion days after that.

I also had some odd pimples and boils show up here and there, but never any kind of major breakouts. I also developed a rash on the palms of both hands which sounds a bit like the dyshidrotic eczema that was described above (this is the first I've heard of that!) or at least something similar. The description from my infusion diary is "it appears to be many tiny little bubbles of fluid, some wet, some dried out." I showed it to my neurologist. She switched me to a different brand of IVIG (from Privigen to Gamunex) and it went away quickly. She also told me that sensitivities to IVIG can be temporary, and that sometimes you can have a reaction to a particular batch and then it never happens again.

Reading through my diary from that first year I'm reminded of all the little irritations; feeling "spaced out" after infusions, getting chills sometimes, low energy, etc. All of these things would come and go, so it was never a constant state of any side effects.

I mention all this because I had essentially forgotten about it. For the past year or so I've had no side effects that I can attribute to the IVIG. Infusion day is a snap now. I show up at 8:30AM, get plugged in, and I'm out of there just after noon, feeling a big tense (it puts my blood pressure up a bit, which is already on the high side) but otherwise feeling normal. Which is to say, normal but with numbish feet and sometimes numbish hands, but always a bit less numbish on infusion day.

Oh, as I'm writing this I'm remembering another important detail; for the first year and a half I was also getting a dose of Solu-medrol (Methylprednisolone) with the IVIG.

So that's it. Just wanted to add my two cents and to encourage eveyone to keep a log of their infusions and well being.


#15

Apparently IVIG and saline don’t mix well. I had a new infusion nurse that ran them together, eczema ensued. As well as increased heart rate and the famous rash. I felt awful for days. New nurse, that previously worked a decade with immunology, said “never ever let them run saline with IVIG AND make sure they actually flush the line before running the IVIG” - my center uses dextrose to flush.

On another note, monitor your dose rate. Find what works for you and keep your nurses informed. Beyond 150, I get very uncomfortable (chest pressure, heart rate increases) and usually a few of my red spots will flare back up. I have mometisone cream that seems to help with itching and healing, but there is always a little patchy spot left behind. Just happy to have the itching over! But, please do pay attention to your infusion rate. Now that I know my max, I don’t have as many issues after.

Oh, and for those that asked, my IVIG is Gammagard-weekly. I also take CellCept daily and am looking forward to another round of Rituxin this month. Woo hoo! I used Carimune for six months until a bout of anaphylactic shock ended that for me. I really liked Carimune, though.


#16

Hi Lola,
Realize this is an old conversation but thought I would try contacting you. I was surfing thru posts to try and find some relief for the dreaded exzema reaction. I’m about to crawl out of my skin right now(what’s left of it).What caught my eye was your statement to never mix saline with IVIG. I had read this somewhere before and asked the nurse infusing me about her procedure. She assured me that she was not giving me saline with the Gammagard. She was only using saline to flush with. Well hell, this is the same as mixing it.Anyone else want to chime in on “The dreaded itch”
I took a dexpak which helped at first, but it has worn off and the itch returns. Think I will start another round. I have an appointment with a dermatologist but thats still a month away.
I have family members who sell essential oils so I will also ask their advice. Hope all is well


#17

Yes I’ve had it, was really bad at first and is only VERY mild now, 3 years into IVIg.
Its Vasculitis and is a common side effect.
Nothing to be concerned about, you should just be prescribed Steroid ointments. A strong one for your body and a gentler one for your face etc. (they thin your skin).