Aa
IVIG side effects
Has anyone receiving IVIG treatment experienced an ongoing out break of wide-spread patches of psoriosis-like rashes?
Artie24.
My husband had IVIG in 2007 as a treatment for peripheral neuropathy (he wa not diabetic). He had no motor neuropathy, just completely numb feet. His doctor said "you might have CIDP, so let's try IVIG". He has severe pain between his toes (for YEARS now). We asked the neurologist if this will help with the pain and she said "it might'. IT DID NOT. He was on IVIG for about two years. He also had psoriasis (not too bad at the time). I remember asking the neurologist "Will this help his psoriasis"? She said 'it might'. Well it did not. Presently he has full body psoriasis (which after coming on this thread), I now believe was triggered by the IVIG. We've tried everything, even laser treatment which worked the first time (a series of 3 months of laser treatments) and all his psoriasis was GONE. His primary care physician (who is also our friend) said "it might be gone now but when it returns, it returns with a vengeance, that's what psoriasis does."
He was absolutely right. All I do is pick up dead skin from the couch. We use lotions, potions, whatever. topical steroid creams do nothing. Last night I put lotion and wrapped his arm in saran wrap (saw that on Dr.Oz show).
I think it's his immune system that's in overdrive and that's what IVIG does. It boosts the immune system. It triggered a card 14 gene mutation (I have read up on this). If anyone cares to correspond my email is ***@****. My name is Melody. Thanks for letting me share my story.
My husband had IVIG in 2007 as a treatment for peripheral neuropathy (he wa not diabetic). He had no motor neuropathy, just completely numb feet. His doctor said "you might have CIDP, so let's try IVIG". He has severe pain between his toes (for YEARS now). We asked the neurologist if this will help with the pain and she said "it might'. IT DID NOT. He was on IVIG for about two years. He also had psoriasis (not too bad at the time). I remember asking the neurologist "Will this help his psoriasis"? She said 'it might'. Well it did not. Presently he has full body psoriasis (which after coming on this thread), I now believe was triggered by the IVIG. We've tried everything, even laser treatment which worked the first time (a series of 3 months of laser treatments) and all his psoriasis was GONE. His primary care physician (who is also our friend) said "it might be gone now but when it returns, it returns with a vengeance, that's what psoriasis does."
He was absolutely right. All I do is pick up dead skin from the couch. We use lotions, potions, whatever. topical steroid creams do nothing. Last night I put lotion and wrapped his arm in saran wrap (saw that on Dr.Oz show).
I think it's his immune system that's in overdrive and that's what IVIG does. It boosts the immune system. It triggered a card 14 gene mutation (I have read up on this). If anyone cares to correspond my email is ***@****. My name is Melody. Thanks for letting me share my story.
I had my first IVIG treatment March 26 in preparation for a transplant.. I had it in the hospital, seemingly no reaction and the next day I was released. However that night I had violent vomiting, headaches, fever and a stiff neck. Being the har head that I am I did ot go back in and went the entire week treating myself after a call to the emergency room and following their instructions to use headache med of tylenol and alternating with motrin. That Monday the next week I could not breathe so I was again hospitalized and was diagnosed with aseptic menigitis and fluid retention around my heart. I was released and 1 day after I developed a rash with litlle pinpoint dots on my hands and fingers. The rash began to clear up and my skin is now peeling, but I had my 2nd treatment April29 and the rash is returning with itching and burning.
In the spring of 2006 I was diagnosed with CIDP, and then under went a full year of treatment. Every other Saturday for one complete year to the day. Headaches, Nashua, and extreme vomiting to where I needed to hospitalized several times. The visiting nurse per medicated me with benadryl
And tylenol. I was forced to stay awake to drink a gallon of watering the five hours of infusion. The vomiting continued for years, only letting up in 2011. The second strange reaction was torso sweating. Which continues today.
The pain from CIDP never really went away, and I manage the pain today with Gabpentin and Morphne. I was told by THREE Neurologists that I went into and remain in remission. Honestly, I'm fearful of what this treatment has done to my body that won't show up for decades. After seeing what side effects other people have experienced, I feel lucky that this was all that happened to me.
And tylenol. I was forced to stay awake to drink a gallon of watering the five hours of infusion. The vomiting continued for years, only letting up in 2011. The second strange reaction was torso sweating. Which continues today.
The pain from CIDP never really went away, and I manage the pain today with Gabpentin and Morphne. I was told by THREE Neurologists that I went into and remain in remission. Honestly, I'm fearful of what this treatment has done to my body that won't show up for decades. After seeing what side effects other people have experienced, I feel lucky that this was all that happened to me.
Has anyone had side effects while being weaned off of IVIG? I've been on 80 grams every 21 days for the past 9 years. 9 weeks ago - my doctor started weaning me off of the IVIG 10 grams at a time because he says I'm now cured of multi focal motor neuropathy - thank God! In any event, I am having bouts of anxiety - feel lightheaded, seems like adrenaline rushing through my body - almost like I'm going to pass out. Thanks.
I have two sons ages 12 & 16 who have received IVIG all their lives. They have an inherited immune deficiency called x-linked gammagloublinanemia. There is no cure for it & the IVIG gives them their "immune system" for that month. The ONLY time either of my sons had a reactions such as fever, tremours, rashes, etc was when they had a yet undiagnoised infection of some sort. One son had these "reactions" for almost a year & the doctor kept saying it was normal for some people to have these reactions. Well, he was incorrect with him. Finally the "reactions" got so severe I had to take him to the ER where they correctly determined his "port-a-cath" had a bacterial infection. He stayed in the hospial 3 months taking IV antibiotics. Had a new port-a-cath implanted & went home on oral anitbiotics for 4 more weeks. He was 2 years old then. Then last year when he was 11 he started these "reactions" again. I IMMEDIATELY took him to the ER & once again he had a bacterial infection (sepsis) in his blood stream.
In summary I am not a big fan of the "reaction" diagnosis to IVIG treatment.
FYI, my older son has had these reactions too that always resulted in some sort of bacterial infection in his blood stream----not a reaction to IVIG.
In summary I am not a big fan of the "reaction" diagnosis to IVIG treatment.
FYI, my older son has had these reactions too that always resulted in some sort of bacterial infection in his blood stream----not a reaction to IVIG.
I have developed the same type rash as you described. Have been on IVIG for about one year getting a treatment once a month but the rash has only appeared within the last month. Driving me nuts. Dermitologist wrote scrip for a steroidal cream which seems to help but does not make it go away.
Jaybird900
Jaybird900
I had my first IVIG treatment in January and second treatment February 2009, I was very tired day of and day after treatment. The following day I developed a severe headache and red pinpoint rash on eyelids and around the eyes with severe nauseau and vomiting then a upset stomach. I got very dehydrated with both treatments and was unable to move my neck, turns out I was one of the RARE cases of someone that developed a severe case of aspectic menegitis and was in the hospital for 5 days. Due to this I am now unable to continue my IVIG treatments. Hope that your rash will soon go away but please watch for these other symptons and if you develop anything unusual please consult your Dr as soon as possible. Good Luck, martintm
I have have received about 60 or more doses of ivig products over 5 years. I developed a rash on my neck but unlike yours. I saw a dermo because I was told it was a coincident (I didn't believe it ) It is a reddening that is encomassing my entire neck, pain free and appears like red bruising. The dermo told me it was pokadema, basicly sundamage( small capalaries coming to the skin surface.). With each infusion it seems to worsen. Now I am having vascular pain in on arm after infusion,and have developed veracose veins in my feet legs, which appeared in less than 3 months. I have CIDP. The infusions have helped dramaticly however the illness was caught late and extensive damage has occured. I have stopped the theropy from time to time and in each incident my symptoms got exteremly worse. At this time I am gathering info myself to stay informed. It is a must. I do believe ivig affects vessels and skin. I have a top neuro man and I am waiting on better options. Best wishes rickaroo
I've been getting IVIG once a month for 9 months, and every month I get a rash on the same part of my right hand. It is a blister-like itchy scaley rash that never spreads anywhere but the left side of my right hand and on the palm and wrist. It usually goes away after a week or so, but this time it just keeps getting worse and it's spreading to the top of my hand. Weird.
I am back to tell you that only a week or so after my infusion with the new brand of IVIg the rash returned. I am very disappointed, but I am still going to stay with treatment. The immunologist has decided we will switch brands once again and biopsy the rash (although I am pretty sure at this point it is the IVIg causing this rash). They have told me in twenty years of infusing these drugs, only twice has a rash been truly related. Well, I would say that my reaction is rare then....and so is yours, but it can't be so rare if we can find it in the forums and in medical papers via the internet. My next infusion is March 2nd. Have you been taken off the IVIg or was another brand tried? How is your rash? Good luck and well wishes.
Funmonkeytoes (Debra)
Funmonkeytoes (Debra)
Hi,
No, I haven’t heard about peripheral MS. I think you need to discuss this with doctor's regarding the cause and effects and its presentation.
What were your symptoms in first place?
Have you been diagnosed with MS?
Multiple sclerosis is a chronic remitting disorder characterized by multiple white lesions in the CNS separated by time and location. The most frequent presenting symptom is unilateral weakness or ataxia. Headache is common, ill defined paresthesias are noted, Visual symptoms like diplopia, blurred vision are also present initially.
MRI is the neuro-imaging of choice, small plaques of 3- 4mm can be identified, particularly those located in brain stem and spinal cord.
MS can cause changes in sensation, muscle weakness, abnormal muscle spasms, or difficulty in moving; difficulties with coordination and balance; problems in speech or swallowing, visual problems, fatigue and acute or chronic pain syndromes, bladder and bowel difficulties, cognitive impairment, or depression.
The initial attacks are often transient, mild and self-limited. The most common initial symptoms reported are: changes in sensation in the arms, legs or face (33%), complete or partial vision loss (optic neuritis) (16%), weakness (13%), double vision (7%), unsteadiness when walking (5%), and balance problems (3%); but many rare initial symptoms have been reported such as aphasia or psychosis.
Keep me informed if you have any queries.
Bye.
No, I haven’t heard about peripheral MS. I think you need to discuss this with doctor's regarding the cause and effects and its presentation.
What were your symptoms in first place?
Have you been diagnosed with MS?
Multiple sclerosis is a chronic remitting disorder characterized by multiple white lesions in the CNS separated by time and location. The most frequent presenting symptom is unilateral weakness or ataxia. Headache is common, ill defined paresthesias are noted, Visual symptoms like diplopia, blurred vision are also present initially.
MRI is the neuro-imaging of choice, small plaques of 3- 4mm can be identified, particularly those located in brain stem and spinal cord.
MS can cause changes in sensation, muscle weakness, abnormal muscle spasms, or difficulty in moving; difficulties with coordination and balance; problems in speech or swallowing, visual problems, fatigue and acute or chronic pain syndromes, bladder and bowel difficulties, cognitive impairment, or depression.
The initial attacks are often transient, mild and self-limited. The most common initial symptoms reported are: changes in sensation in the arms, legs or face (33%), complete or partial vision loss (optic neuritis) (16%), weakness (13%), double vision (7%), unsteadiness when walking (5%), and balance problems (3%); but many rare initial symptoms have been reported such as aphasia or psychosis.
Keep me informed if you have any queries.
Bye.
After my neuro doc heard from my derma doc that the rash was probably coincidental, she (neuro) restarted the IVIG....Two days later and the rash is back.........You asked my age. I am 59 going on 103.......A while back, a different neuro doc said that there have been some rare cases of MS reported that presented peripherally as opposed to strictly central. Have you ever heard of anything similar? Aside from feeling like I had just been run over by a stampeding herd of cattle for the first hour or so post treatment, and other than the rash, I have never experienced any of the side affects that you mentioned in you first reply.
My life sustaining motto has always been : "An inconvenience is an adventure wrongly considered."
OH what an adventure this has all been!
Be of goood cheer and keep me posted......
Arthur
My life sustaining motto has always been : "An inconvenience is an adventure wrongly considered."
OH what an adventure this has all been!
Be of goood cheer and keep me posted......
Arthur
Thanks for your response....
your rash sounds like mine without the feet and soles being affected (ouch!) My IVIG was suspending an appointment with Dermo....which happened 10/13 when the rash was pronounced coincidental and not related to the infusion. But I'm not so sure.....I've never had a rash like this before. As per your experience, I will discuss the change of brand/formula of my drip with my neurologist. Her initial instinct was to stop IVIG and begin plasma-pherisis. My current diagnosis(I say current because it has changed a few time over the past 8 years) rules out MS so I am not familiar with the drugs you have mentioned. Lyrica has calmed the spasms and minimumized the zingers. I was on Neuronton (nerve rotten for 6 years......Will see what they have in store for me next. I am due for some more EMG work soon. "Massive" damage throughout my peripheral nervous system has already been well documented. I don't know what else they expect to find. IVIG was providing some return of strength to my hands and fingers. The infusions were put on hold when the rash developed. My life sustaining motto has always been : "An inconvenience is an adventure wrongly considered."
OH what an adventure this has all been!
Be of goood cheer and keep me posted......
Arthur
your rash sounds like mine without the feet and soles being affected (ouch!) My IVIG was suspending an appointment with Dermo....which happened 10/13 when the rash was pronounced coincidental and not related to the infusion. But I'm not so sure.....I've never had a rash like this before. As per your experience, I will discuss the change of brand/formula of my drip with my neurologist. Her initial instinct was to stop IVIG and begin plasma-pherisis. My current diagnosis(I say current because it has changed a few time over the past 8 years) rules out MS so I am not familiar with the drugs you have mentioned. Lyrica has calmed the spasms and minimumized the zingers. I was on Neuronton (nerve rotten for 6 years......Will see what they have in store for me next. I am due for some more EMG work soon. "Massive" damage throughout my peripheral nervous system has already been well documented. I don't know what else they expect to find. IVIG was providing some return of strength to my hands and fingers. The infusions were put on hold when the rash developed. My life sustaining motto has always been : "An inconvenience is an adventure wrongly considered."
OH what an adventure this has all been!
Be of goood cheer and keep me posted......
Arthur
Thanks for your reply......my neuro doc says that the rash is a far from common complaint following ivig....Had an appt. with a dermatologist on 1/13 who said that it was strictly coincidental and rxed some ointment that seems be helping. I've yet to disucss this with my neurologist who is out of town until tomorrow. Will update.....
Arthur
Arthur
I was being treated with IVIg for Multiple Sclerosis about a year ago and developed a rash (rather quickly) on my lower legs. The rash was itchy, plaque-like lesions that spread to my palms and soles of my feet. Unfortunately, after only four infusions, I decided to stop IVIg and begin Tysabri. Now, after flaring three times in five months on the Tysabri -- I am back to IVIg (as it was the one treatment that seemed to be making a difference in my overall abilities/health). My immunologist says that merely slowing the infusion, pre and/or post-medication with Benadryl, or changing the brand/formulation of the IVIg can all get rid of the rash -- if not lessen it to a tolerable level. So, my answer is, YES -- I have experienced rash associated with IVIg......but I wish I had not given up on it so easily. If you feel that IVIg is working for you, have your MD give you some options while staying with your treatment. Good luck to you! Oh, and I experienced much of the side effects JainMD wrote about in the previous post......but they seemed to lessen with each infusion. By far, the first (two days x eleven hours) infusion(s) were the worst. I am willing to do it all again for just a bit of energy! My appointment with the immunologist is on January 30th.....and I am hoping to hear that we can give it another try -- otherwise my options have slimmed to Cytoxan or Methotrexate. Any Information on either of those drugs in comparison with IVIg? I am a post-Novantrone user, but I reached the 140mg maximum dosage. Since then everything seems to be a trial with minimal to no benefit. :(
Hi Artie,
How old are you?
In general, adverse reactions to IVIg therapy occur in no more than 10% of patients.
Mild-to-moderate headache is common.
Chills, chest discomfort may develop in the first hour of the infusion. Fatigue, fever, or nausea may occur after infusion and may last as long as 24 hours.
Other side effects include, dizziness, leg cramps, muscle aches and pains and pain and tenderness at the injection site.
A severe anaphylactic reaction may occur in patients who have a serious deficiency of IgA associated with anti-IgE or anti-IgG antibodies against IgA, which react with the IgA in the IGG preparation. The reaction is rare.
Keep me informed about your condition.
Bye.
How old are you?
In general, adverse reactions to IVIg therapy occur in no more than 10% of patients.
Mild-to-moderate headache is common.
Chills, chest discomfort may develop in the first hour of the infusion. Fatigue, fever, or nausea may occur after infusion and may last as long as 24 hours.
Other side effects include, dizziness, leg cramps, muscle aches and pains and pain and tenderness at the injection site.
A severe anaphylactic reaction may occur in patients who have a serious deficiency of IgA associated with anti-IgE or anti-IgG antibodies against IgA, which react with the IgA in the IGG preparation. The reaction is rare.
Keep me informed about your condition.
Bye.
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