Are you high risk for infections?

[Pomegranate]

So my Dr. wants to switch me to Gilenya since Copaxone is no longer working and I am JCV+, but I have been having a hard time accepting this medication due to the immunosuppression. I am in school to become a veterinarian, so I am concerned that I'll be opening myself up to zoonotic diseases.

Do any of you have jobs in which you are constantly exposed to diseases (e.g. nurse, doctor, microbiologist) and taking Gilenya? How often do you get sick and when you do, is it much worse than before Gilenya?

I want to pick the right medication for my MS, as it has progressed, but I also want to look out for my health. When I brought my concerns up with my neurologist, she had never been asked this before, so she is consulting with other neurologists and immunologists, but I just wanted to see if any of you were in the same predicament as me and how you are handling it.

[BigA]

That's a really great question I'm sure no one knows the answer to or is willing to guess.

You'll just have to go with the your own probabilities. But why not try rebif or avonex instead? That has a more well known immune modulating effect and a long history. Or have you tried that already?

[Pomegranate]

I was recently referred to an MS specialist from my neurologist due to the severity of my lesions on my last MRI. I would definitely prefer to use an interferon over a drug that causes immunosuppression, but she said that based on my MRI and how often I've been having attacks, she feels that the interferon drugs will have the same efficacy for me as copaxone and would do me no good.

Her top two choices are either Gilenya or Rituximab and of the two we chose Gilenya. She was saying at least with G, she could flush it out of my system in 2 weeks if I come down with something, but I'm still hesitant.

Maybe I should ask a different question...How often do you get sick (cold, flu, etc)? What is the severity compared to the same illness in the past not on G? Have you had any infections that aren't normal based on your injury/exposure? Has your healing time significantly increased?

[onlyairfare]

I work in public health in an IHS (Indian Health Service) clinic, and I deal with sick people all day long. I have been on Gilenya for almost 3 months now, and I am just now getting over my first cold this season. That seems to me about the same as previous years.

When I read through the Gilenya paperwork and saw that it says basically "Stay away from sick people," I was wondering if my doctor had forgotten my occupation - but no he said I should be fine. I admit I do keep one of those little bottles of hand sanitizer on my lanyard that has my ID card on it and I use it frequently, and I also wash my hands a lot. Any patient who comes to our clinic coughing is told to put on a mask.

So far, so good.

[newbie but goodie]

Gilenya can lower you WBC but I do know two people who take it and work in health-related fields. One is a pediatric nurse and one a medial assistant (in other words, they both have lots of patient contact) and do not get sick more often than before.

They have told me that they are more conscientious about hand-washing, wiping grocery carts, etc but don't live their lives like cancer patients.

[HellsBells1]

Pomegranate, you probably know better than I about the risks of diseases passing between animals and humans, but I do know that this is considered to be quite rare. And of the few zoonotic diseases that can be passed to humans, the majority are from livestock. I don't know how much you deal with livestock.

Additionally, I don't know a ton about Gilenya, other than that you are at an increased risk of infection (but I can't find anything that says what that specific increased risk is - such as 200% etc.). I do know that my husband, when prescribed prednisone for his psoriasis, had a lengthy discussion with his doc about the increased risk of infection when on steroidal immunosuppresants. Apparently, steroids (at the dosage he was prescribed) would "double" his risk of infection, which sounds really bad.

However, the doc further went onto explain that in the general population, the risk of infection was something like 1% at a given point in time, so clinically speaking, prednisone would increase his risk to 2% - which really is not that bad. He just has to take extra care - he is a Chef in a restaurant and is around people 15 hours a day, and he never gets sick with more than a minor cold. Knock on wood.

Before making your decisions about changing medications, ask your questions of the prescribing doctor and research the specific zoonotic diseases that can be passed from animal to humans. I am sure that people working in the health system with other humans are at a much more significant risk than someone working with animals.

With Gilenya, the most severe infections seemed to be herpes, so if you have exposure to herpes, or already have simplex I (cold sores), then I would be even more cautious.

Unfortunately, it seems that whatever medication is chosen to treat MS or other auto-immune conditions all come with a scary list of potential side-effects, but that doesn't mean everyone gets them (otherwise, the FDA would not approve them). Sometimes the benefits outweigh the risks. My hubby's DMD can affect his liver, so he has to get that checked monthly. So far, after about 8 months or more, his liver function has not been affected at all.

The other suggestions for meds should also be questioned, if they have fewer side-effects and risks, to find out why your doc doesn't feel they are right for you.

Good luck.

[Pomegranate]

Thank you onlyairfare and newbie but goodie for your accounts on how you/your friends are handling being in an infectious environment while on Gilenya. It makes me feel a little more amenable to taking this medication.

HellsBells1 - Thank you for your response.

While the risk of contracting a zoonotic disease for the general public is low due to lack of contact with animals, the veterinary world has a higher risk. There are over 200 zoonotic diseases. I have attached links so you can be aware of what is out there. Since the B lymphocytes are being sequestered, I would be at risk for viruses, fugi, and higher bacteria. One of the most worrisome viruses is rabies (I'm vaccinated, but I don't know how effective it will be with most of my lymphocytes out of circulation). I'm consulting with my school's immunologist about my rabies vacicne. And while I'm still in school I am exposed to all animals from companion animals to zoo to domestic large animals.

List of companion animal zoonotic diseases:
http://www.cfsph.iastate.edu/Zoonose...WebVersion.pdf

A more thorough list of zoonotic diseases (worldwide):
http://www.phsource.us/PH/ZD/Zoonotic_Disease_Table.htm

My MS specialist didn't have the interferons on her list of possible medications for me to switch to because my MRI was suggestive of a highly active disease so I need something more effective. And while I am JCV+, I can't take Tysabri for more than 1.5 years. So her next options were either Gilenya or Rituximab. She is consulting with other MS specialists and immunologists for their opinion on me taking an immunosuppressive drug. She said that she is leaning toward G because if I do become infected with something she can flush it out of my system in 2 weeks, so I can have my lymphocytes back to fight whatever I am infected with.

Concerning Herpes, I don't have much a risk of developing oral herpes as my husband doesn't get cold sores and I can choose not share beverages and eating utensils with other people. I have had the chicken pox, so I am susceptible for developing shingles. I'll make sure to be more conscientious of fomites. Also, if I'm working with non-human primates, I'll be exposed to herpes B, which is a very dangerous/fatal disease.

But as I was planning on going into anatomic pathology (necropsies/autopsies) where I would be exposed to many infectious diseases both known and unknown I became concerned when she recommended an immunosuppressive drug. I am now looking in to other areas of veterinary medicine where I won't be so at risk :/ I have to value my health over my dream career.

-Pom

[onlyairfare]

I made sure to get my shingles and yellow fever vaccines before I began on Gilenya, specifically because of the live vaccine issue. My yellow fever wasn't "due" yet, and yes there are medical waivers, but I didn't want any hassles at the border crossing of some remote country that requires proof of vaccination.

You might inquire of your immunologist about the shingles vaccine too. Though "not approved" for those under 50 (which I infer is the case since you are currently in vet school), I know that studies have been done involving younger vaccinees. IIRC there was a positive effect, and the question for the approval age had to do with cost/benefit ratios in the general population. For someone who can plan when to start immune suppression, your cost/benefit ratio may be different.

As for anatomic pathology as your preferred specialty, have you looked into job possibilities with the super-specialized, top-secret government labs? In researching bioterrorism they do study risky or unknown-risk infectious agents, but the lab security and protections are at the highest level of sophistication. I think both AMRIID and WRAIR (or their contractors) hire research veterinarians in civil service positions. Maybe you don't have to give up your dreams, if your thoughts were toward an academic career at a university where they don't have one of those Level 4 (I think that is the terminology) labs, but rather a lower level security facility.

I HATE taking no for an answer because of MS! Note I am currently working in Arizona and taking Gilenya, even though coccidiomycosis is quite common here. No problems yet.

In the same boat (kinda)

Pomegranate,
I am SO glad that you started this thread!!! My neuro also wanted to start me on Gilenya because I've had 2-3 flares within a year or two; a bit too close together and severe enough to put me in the hospital. However, I have been sick a lot this past fall/winter and was also concerned about the possibility of it being an increased risk for infections.

My neuro has delayed starting me on Gilenya (already had all of the tests done: labs, EKG, and an MRI). He just had bloodwork done on me at the end of February and I noticed that my IGG and IGM levels were flagged as low. He hasn't gone over these findings with me yet, so I don't know what to do with that information.

I have had chicken pox (and, of course, it showed up on the initial lab workup), and apparently, I've had Mono (though, I am not sure when; perhaps the first time I was hospitalized, after I thought I was going through a second flare - almost back to back). Does this mean that I would have to take a vaccine for shingles?? I didn't know there was such a thing.

Please keep us updated on what the decision is for your treatment. I am also concerned about the risk of infection, since I have two school aged kids who bring everything home...and have considered homeschooling one of them (not for that reason). If I homeschool my daughter, I don't want to be too sick to help her (would be online schooling, so I would be basically making sure she does her work and checking her progress; not teaching).

Thanks, again, for your thread.

[Pomegranate]

I totally understand your concern.

I don't know how low your IgG is, but IgGs are your antibodies. Your doctor will most likely want to check your titers to see if they are high enough for key diseases like chicken pox. If your titer is low for chicken pox, he'd probably want to give you the shingles vaccine. IgM are used in acute diseases, they are your first responders. Again I don't know how low, but a low level could effect how efficiently you ward off new infections.

If you do get an infection on Gilenya, at the first sign of sickness, go to the doctor ASAP so you can treat it before it gets too bad. If you get a bad infection, they can always flush the drug out of your system, takes 2 weeks, and then you'll have your immune system back to help fight it off.

I unfortunately don't belong to this Gilenya forum anymore. After my preliminary tests I found out I have borderline long QT syndrome, meaning I have a cardiac risk. After my neurologist got my C spine MRI back she found an equally alarmingly large and aggressive lesion there so she said that I needed to be on an aggressive medication has an equally or higher efficacy as Gilenya.

Last week my neurologist started me on Rituxan (Rituximab), which instead of sequestering my B cells to my lymph nodes it kills them all. I am just much more conscience on my cleanliness. With Gilenya you are just going to be more susceptible to viruses and fungi; at least it's not bacteria.