Copaxone and Photosensitivity

[woodstock]

I started Copaxone about 2 1/2 weeks ago. This weekend, I wasn't outside for that long and noticed that I got a bit of sunburn much more quickly than I would normally. I checked the Copaxone drug information and didn't see anything about photosensitivity. Is sun sensitivity a side effect of Copaxone?

[BigA]

So it's hard to know - are you taking any other meds which might make you more sensitive? Was it one area or all over? Even your anti-age skin cream can make you more sensitive.

but it is listed as an infrequent side effect here, about as common as suicide attempts

http://dailymed.nlm.nih.gov/dailymed...?archiveid=837

Events are further classified within body system categories and listed in order of decreasing frequency using the following definitions: Frequent adverse events are defined as those occurring in at least 1/100 patients; Infrequent adverse events are those occurring in 1/100 to 1/1000 patients; Rare adverse events are those occurring in less than 1/1000 patients.

Body as a Whole:

♦ Frequent: Injection site edema, injection site atrophy, abscess, injection site hypersensitivity.

♦ Infrequent: Injection site hematoma, injection site fibrosis, moon face, cellulitis, generalized edema, hernia, injection site abscess, serum sickness, suicide attempt, injection site hypertrophy, injection site melanosis, lipoma, and photosensitivity reaction.

[woodstock]

The sunburn was all over where the skin wasn't covered by clothing. It just happened with a very short exposure time and I typically don't burn that quickly. I'm taking no other meds other than 20 mg of vyvanse.

[beadyeyes]

I have always tanned quite easily until I started on Copaxone 11+ years ago...my skin is very sun sensitive now and I burn very quickly.

[twisterred]

Since tanning isn't in my vocabulary, I've not noticed.

[KatW]

Definitely, yes, I am more photosensitive. I even get sunburned with 45 spf sunblock.

[twisterred]

Hi everyone,

My husband reminded me that during an MS checkup, my Neuro mentioned that while on Copaxone, I needed to avoid the sun.
He said the reason was that since the immune system is lowered, the body is more susceptible to sunburn.
And, he said it would take the body longer to recover from a burn.

So glad my husband was there and recalled that!

[MarkLavelle]

Infrequent adverse events are those occurring in 1/100 to 1/1000 patients

As someone who's ridden the tail of the medical bell curve for a long time, I have to say that 1/1000 isn't all that rare when it's you who's the 1...

[MarkLavelle]

My husband reminded me that during an MS checkup, my Neuro mentioned that while on Copaxone, I needed to avoid the sun.
He said the reason was that since the immune system is lowered, the body is more susceptible to sunburn.

Whoa! This is almost the exact opposite of what my neuro has said (except for the sunburn part - no comment, there)!

According to mine (and what I've read myself), Copaxone is the only DMD that does not inhibit you immune system.

[twisterred]

Mark,

Copaxone as I was told many years ago weakens it.
I've had a few infections and had a h*** of a time getting rid of them. One DR told me one I'd have to just live with due to Copaxone.

http://multiple-sclerosis.emedtv.com...ecautions.html

[MarkLavelle]

I assume you're referring to this part of the link:

Copaxone works by limiting immune system reactions. Theoretically, the drug could weaken the immune system in such a way as to make infections or cancers more likely. However, there is no evidence that Copaxone actually has these effects.

I think "theoretically" is the key word (as with almost everything we'll ever hear about how DMDs work -- theory rules! ). The interferon drugs are designed to suppress the immune system, and the other approved DMDs are worse, that way. C is supposed to be different in that it gives the immune sys something else to attack that looks like the myelin that it would be attacking otherwise. At least that's the theory!

I probably overstated my neuro's certainty, but I'm sure he said it's the safest DMD for my already-compromised system. That doesn't contradict the fact that some people have serious problems with it...

[twisterred]

I assume you're referring to this part of the link:
I think "theoretically" is the key word (as with almost everything we'll ever hear about how DMDs work -- theory rules! ). The interferon drugs are designed to suppress the immune system, and the other approved DMDs are worse, that way. C is supposed to be different in that it gives the immune sys something else to attack that looks like the myelin that it would be attacking otherwise. At least that's the theory!

I probably overstated my neuro's certainty, but I'm sure he said it's the safest DMD for my already-compromised system. That doesn't contradict the fact that some people have serious problems with it...

Agreed Mark, Copaxone is different. Thanks.
It has been the safest DMD for me. The interferon meds made me sooooo ill from the side effects so quickly, I never had a chance to know if they lowered my immune system.

I know Copax. has, but it's still doing good work in me, so I tolerate the down side of it.

Thanks again Mark.

[MarkLavelle]

I know Copax. has [lowered my immune system], but it's still doing good work in me, so I tolerate the down side of it.

I guess it's as good as we can get, at least until BG-12 (maybe).

Today I had my 1st neuro visit since starting C, and he was genuinely surprised that I hadn't skipped a single shot.

He said we could talk about BG-12 in Nov., but it apparently reduces the count of some lymphocytes by 25% (on average, and not usually to the "below normal" point) and he's kind of fanatic about my immune system. I got the "we've all got cancer cells in our bodies all the time and you need your system working as well as possible" talk (again!).

He's sure my cancer/chemo/radiation in '96 damaged my immune system, and has even hypothesized that '96 is the real reason for my lesions...