Copaxone and chronic hives

[Susan ABQ]

Hi I've been on copaxone about five years. Almost two years ago I started getting what I thought were "bites." Really, really itchy bumps that last several days and often come in clusters. After much investigation, it was clear they were not bites. Allergy testing showed nothing, but finally a dermatologist did a biopsy which revealed "drug eruption." Has anyone had similar reaction to copaxone? What did you do? I am following a very strict diet (gluten free, dairy free, sugar free) hoping to boost immune system. I'm desperate and miserable itching all the time.

[Koshtoo]

I did

I developed chronic hives after 9 months on Copaxone. Allergy testing found nothing else that might cause them. My allergist said she could not say with certainty that the copaxone was the culprit, but felt it was the cause. She didn't think it was an allergy, but that it did something to change my immune system, causing the hives. Allergies are not the most common cause of hives, but unfortunately they don't really know what causes chronic hives.

My whole body was covered in hives, and I started to have swelling of my lips and tongue, so I quit Copaxone. It's been over a year since I took my last dose and my hives are about 90% better. I still break out if I have pressure on my skin for extended periods of time, but its manageable now.

Recently, I was at a copaxone lunch, and the doctor mentioned something about an "immune response to mannitol", the inactive ingredient in copaxone. He said the immediate post-injection reaction could be a sign of an immune response to it. (I had an IPIR after being on it about a month.) I've also read research reports on people who develop sensitivities to mannitol. It's possible its really the culprit.

[Seasha]

Years ago I was on Copaxone for 5 years and had no s/e other than the usual minor itching, redness, site reaction.

But I read up on this - "Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficult breathing; swelling of your face, lips, tongue, or throat.

http://www.rxlist.com/copaxone-drug.htm

Maybe it's time to have a talk with your neuro about possibly switching to another DMT?? Three years of suffering from hives sounds like "enough is enough" to me!

Hope you can get relief

[Susan ABQ]

Thank you for the reply. I will see my neuro in a couple weeks. I don't think I can take the horrible itching anymore! I want to talk to him about gilenya although I'm really nervous about changing meds. My MS symptoms have been stable on copaxone but my body seems to be rejecting it!

[Northerngal]

Chronic hives or CIU

I was diagnosed with MS 4 years ago. I started the Copaxone about 3 months later. 2 years ago in May my lip swelled for no apparent reason. Last May my lip swelled again again. A few days later my right shoulder got hot and itchy and red. Then my left shoulder
did the same and my right side. Each flare up would last a few hours. A friend encouraged me to get to ER. I was given a med that took the itch away. When I went to see my GP, my right shoulder was flaring up again. When I saw my neurologist a week later, I had no itch. Later that week my face had swollen more than once, my arms, hands, feet, sides and back have been covered in these itchy spots more than once. When I saw another doctor I was so covered in these spots he had a tough time
doing a scratch test on my back. He calls it CIU (Chronic Idiopathic Urticaria). Another term for it is Chronic hives. Unlike hives, from what I understand, there is no known origin. I have been on antihistamines ever since. Apparently there is a histamine reduced diet. (Apparently the itchy red spots or weels (sp?) are from too much histamine in the system.) I struggle with not being allowed to eat what I want so haven't tried it.
This is good information about the Copaxone. The MS clinic Norse was wondering if that is the culprit. The oral alternatives also say they cause hives. The doctor that diagnosed my CIU thinks I shouldn't change meds. He also admits not knowing anything about MS.
I also find if my skin is rubbed while carrying something or when I am in the hot sun the CIU will flare up.

I developed chronic hives after 9 months on Copaxone. Allergy testing found nothing else that might cause them. but felt it was the cause. She didn't think it was an allergy, but that it did something to change my immune system, causing the hives. Allergies are not the most common cause of hives, but unfortunately they don't really know what causes chronic hives.

My whole body was covered in hives, and I started to have swelling of my lips and tongue, so I quit Copaxone. It's been over a year since I took my last dose and my hives are about 90% better. I still break out if I have pressure on my skin for extended periods of time, but its manageable now.

Recently, I was at a copaxone lunch, and the doctor mentioned something about an "immune response to mannitol", the inactive ingredient in copaxone. He said the immediate post-injection reaction could be a sign of an immune response to it. (I had an IPIR after being on it about a month.) I've also read research reports on people who develop sensitivities to mannitol. It's possible its really the culprit.

[Perennialz]

I've had CIU for a couple of years before I started on Copaxone 40mg. During that time I've seen the allergist and a dermatologist for my hands, elbows, knees.
The new thing I've got now are these itchy little lumps, and some minor redness that surface post injection but they disappear after a few days.
I make sure to slap an icepack on the site once I finish injecting to hasten the disappearance of the sting, and keep my skin as calm as possible. I do heat before, ice after.