Scary

[frosty123]

I have been on Tysabri for 18 months, every 28 days infusion.

I am currently experiencing my first ever ear infection and it is a doozy. Middle and outer ear. Pain was excruciating, low fever, vomiting, sleeping 20 hours a day. 3 antibiotics and 6 days later I am still experiencing pain and tummy upset.

This experience has been very frightening to me. Saw 3 docs.
1st PC, "Take this antibiotic and you will feel better in a day"...no. Pain so bad throwing up. So 2 days later called PC said go to ER.

2nd doc, ER, pain was horrific, take this pain reliever put in a wick in ear and put drops in, "you should feel better in a day or two". Not so. Was told to see ENT in a few days.

3rd Doctor ENT, "you shouldn't have come back to have wick removed so soon but let me look... AHHH, need to remove wick and give you different wick in your ear and different drops". Me, crying in pain as the wick is removed and ear is vacuumed out.

My MS questions:

Is this normal recovery with strong antibiotics?
Does Tysabri have something to do with getting my first ever ear infection (I am 58!)?
Is Tysabri making me have a slower response to antibiotics?
I work in a hospital (Pastoral Care for Inpatient Hospice), is this too dangerous an environment on Tysabri?
Last one, Anyone have a MS doc in Chicago? Mine left the practice and I am not comfortable with new guy that inherited me. Makes me feel like the "red-headed stepchild".

Thank you.

[lindaincolorado]

Hi frosty123,
sorry you experienced this and that I cannot answer your questions. I can tell you my Tysabri story. I have had 110 infusions since 9/2006. I take vitamins to keep up my immune system; my biochemist son told me to this and I have I have probably had 3 colds in this entire time and basically warded them off (very short durations and mild) with 2000 mg vit C for a few days starting at the first sign of a cold. I exercise, eat somewhat healthy. By the way, I will turn 68 next month.

I think the problem with antibiotics is the Dr. need to find the right one!

Take care
Linda

[frosty123]

thank you

I do take a lot of different vitamins every day. B12, D, E, Coconut Oil, but I will throw some C in there as well.

[jreagan70]

Does Tysabri have something to do with getting my first ever ear infection (I am 58!)?

Possibly. Tysabri is known to increase the risk of infections, and immunosuppession and infections are listed in the Warnings and Precautions section of the Prescribing Information. Tysabri works by preventing immune cells from sticking to sites where inflammatory chemicals are. So the immune cells might not be able to work effectively to fight an infection.

Is this normal recovery with strong antibiotics?

The course of the infection depends on what agent is causing it and how long it takes to find an antibiotic the bacteria are susceptible to. It sounds like you picked up really strong and nasty bacteria that aren't susceptible to the first antibiotics your doctors tried. (Those antibiotics were chosen first because ear infections are usually caused by bacteria that are susceptible to them.)

Is Tysabri making me have a slower response to antibiotics?

Mostly no, but a little bit maybe. The bacteria are killed or suppressed by the antibiotic, and (unless there's something about the interaction that isn't known yet) Tysabri doesn't affect antibiotics or how they work.

In theory, Tysabri could be slowing down the recovery a bit if the mechanism that keeps immune cells away from inflammation is slowing the way your immune cells are able to "clean up" the site of the infection. But that's secondary. The primary action is the antibiotic doing its job.

I work in a hospital (Pastoral Care for Inpatient Hospice), is this too dangerous an environment on Tysabri?

It depends on the hospital, who the patients are and what you do there. You may not be able to know how risky it is for you until you've worked there longer. Generally, if you follow standard/universal and cleanliness precautions, it's probably no more dangerous than anywhere else. But that would be something for you to talk over with your neurologist.

[frosty123]

thank you

we do practice excellent standards of cleanliness in our hospice and I have been there many years. However like all hospice units we see our share of MRSA, c-diff, sepsis, etc. I, of course, follow protocols but pastoral care is one of intimacy, stroking hands, holding family members in their grief, whispering prayers and encouragement to patients and holding vigil at bedside.

It is a job I love, very, very much. But as I stated previously, this episode scared the pop out of me.

[Poppy7402]

I'm just thinking outside of the box here, but could the doctors definitely 'see' an infection? The reason I ask is that Trigeminal neuralgia can sometimes manifest itself as 'feeling like the worst earache in the world', with the pain so bad it makes you vomit.

Best wishes

Poppy