Cladribine and Fingolimod - Herpes

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Cladribine and Fingolimod - Herpes

Postby oreo » Fri Jan 22, 2010 7:08 am

One step forward and two steps back.
Tysabri has its PML complication, now it looks like cladribine and fingolimod have a big problem with herpes.
We just can't win can we?
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Postby ElMarino » Fri Jan 22, 2010 12:28 pm

More like two steps forwards and one step back, no?
Apologies for my terrible username. I never thought I'd use the forum much when I registered..
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Postby Greenfields » Fri Jan 22, 2010 2:21 pm

Explain latent herpes?

Cheers
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Postby dignan » Fri Jan 22, 2010 2:55 pm

Oreo, you're right, there is no treatment without side effects, and too many of the side effects seem to be able to lead to death.

The quote below mentions problems with herpes zoster for both cladribine and fingolimod (aka varicella zoster).

two patients receiving the higher fingolimod dose died of herpes zoster infections, disseminated in one case and causing encephalopathy in the other. Increased rates of herpes zoster infections were also seen in the other fingolimod trial and with cladribine

http://www.medpagetoday.com/Neurology/M ... osis/18069


Greenfields, Wikipedia has good information about herpes zoster:

Varicella zoster virus can become latent in the nerve cell bodies and less frequently in non-neuronal satellite cells of dorsal root, cranial nerve or autonomic ganglion, without causing any symptoms. Years or decades after a chickenpox infection, the virus may break out of nerve cell bodies and travel down nerve axons to cause viral infection of the skin in the region of the nerve. The virus may spread from one or more ganglia along nerves of an affected segment and infect the corresponding dermatome (an area of skin supplied by one spinal nerve) causing a painful rash. Although the rash usually heals within two to four weeks, some sufferers experience residual nerve pain for months or years, a condition called postherpetic neuralgia. Exactly how the virus remains latent in the body, and subsequently re-activates is not understood.

Throughout the world the incidence rate of herpes zoster every year ranges from 1.2 to 3.4 cases per 1,000 healthy individuals, increasing to 3.9–11.8 per year per 1,000 individuals among those older than 65 years.


http://en.wikipedia.org/wiki/Herpes_zoster
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Postby euphoniaa » Fri Jan 22, 2010 3:30 pm

Greenfields wrote:Explain latent herpes?

Cheers


Simply put, "latent herpes" is shingles, which is the version of herpes zoster that remains "latent" in your system and appears in adulthood after recovering from chickenpox in childhood. Dignan's post gave a great explanation, but didn't use the familiar term shingles.

Here's another link
http://en.wikipedia.org/wiki/Herpes_zoster

From Wikipedia:
Herpes zoster (or simply zoster), commonly known as shingles and also known as zona, is a viral disease characterized by a painful skin rash with blisters in a limited area on one side of the body, often in a stripe. The initial infection with varicella zoster virus (VZV) causes the acute (short-lived) illness chickenpox, and generally occurs in children and young people. Once an episode of chickenpox has resolved, the virus is not eliminated from the body but can go on to cause shingles—an illness with very different symptoms—often many years after the initial infection.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby Greenfields » Sat Jan 23, 2010 12:29 pm

Thank you
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Postby euphoniaa » Sun Jan 24, 2010 4:29 pm

Aha! I finally figured it out. I've been trying to remember which of these new meds had mentioned macular edema (swelling on the retina) as a side effect, and it's fingolimod. And it caused lots of skin cancer too – both of them conditions I've had problems with in the past. Here's an older article.

http://www.medscape.com/viewarticle/573504

Macular edema had been seen with fingolimod in previous transplantation trials, and there were 4 cases of suspected macular edema in this trial (1 since the month-24 analysis). However, the diagnosis was not confirmed by external review of retinal specialists. There was some elevation of hepatic enzymes, but as had been seen with other adverse events, the frequency declined over time, Dr. Comi noted.
"All of these data taken together continue to suggest that the drug is active; second, the frequency of adverse effects tends to decrease with continuation of the treatment, and there was no evidence of any new adverse effects except some reports of skin malignancies," he said.

Seven cases of skin malignancies were observed during the extension trial: 3 basal-cell carcinomas, 2 squamous-cell carcinomas, and 2 melanomas. All were in situ, and all have been treated without other complications, he said.


They've never found evidence of optic neuritis at my ophtho exams, but I've been told I currently have dry eye syndrome, early stage cataracts, I got my first ever ocular migraine last summer (pretty cool psychedelic vision :) ), and a touch of nystagmus (my ONLY eye issue that's related to MS).

And that's why I pay so little attention to new meds. I already have enough medical problems without giving myself new ones on purpose. And my MRIs have never shown enhancing lesions anyway.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby euphoniaa » Mon Feb 22, 2010 11:27 am

Just thought I'd bump this thread now that fingolimod has a new name - Gilenia.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby valanhb » Mon Feb 22, 2010 5:42 pm

You know, I am supposed to be waiting to go on one of these once they are approved and available to the market. I've had rare, strange reactions to other DMDs. You know the "less than 4% and less than 7%" (two different side effects) which combined would be almost never. So I look at the rare, "oh you really don't have to worry about that" side effects because I've found that I do. The side effects I've had on Tysabri aren't even listed, so you know it has to be less than 1%. Didn't get PML probably only because I was only on it for 6 months.

Good lord, with side effects like these I think I'll just take my chances with the disease. :roll: And I thought Rebif and Copaxone were bad! Geesh!

Seriously, from a completely non-medical point of view - How do these drugs even move on to the approval stage with side effects like these?
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