Pneumonia and MS

[IntoDust]

Last December, before I was diagnosed, I got pneumonia. I didn't have the flu or an upper respiratory infection beforehand. I was just really tired and acting like the Grinch on Christmas Eve and woke up unable to breathe with 104* fever on Christmas morning and still waited 5 days before going to urgent care. Whoops.
So of course this year, I got the mandatory lecture about the flu shot from my PCP. He told me, "You don't want to get the flu, then get pneumonia with multiple sclerosis." I told him, "Well, I survived it last year!" Yeah, but barely. Pneumonia is no joke.
So I compromised and told him that I don't do flu shots but I'm willing to get the pneumonia shots. I got 1 of the 2 available. I'll get the second one at a later date.
My question is: Is pneumonia that much more dangerous when you have MS? All of the research I can find says that we're more prone to aspiration pneumonia if we have swallowing difficulties, but nothing stating that there is an increased risk of complications. I understand the concern if the patient was non-ambulatory or had advanced MS but I'm still functioning relatively well.
This is something I've been wondering and now that I've been sick for 3 1/2 weeks (URI that's turned into bad bronchitis) I figured I should ask. I'm not the type that goes to the doctor when they have a cold, the flu or bronchitis as they all tend to be viral but I'm not sure when to be vigilant about my health and when to self-treat now that I know I have MS and there could be complications.

[KoKo]

My question is: Is pneumonia that much more dangerous when you have MS?

IntoDust ~

Some studies have shown that infections such as UTI and URI may trigger relapse.

http://www.msdiscovery.org/papers/bi...iple-sclerosis

Also, pseudo exacerbations (worsening of existing symptoms) often occur with infections.

In the case of more advanced MS, a weak diaphragm and compromised respiratory function can make a URI more dangerous.

I have become a serious germaphobe, after having contracted simple cold viruses, which caused an increase in my symptom severity and much trouble trying to cough, due to having a weak diaphragm.

In any case, hope you are feeling better.

Take Care

[Mamabug]

Being in a wheelchair or bedridden can make the person more susceptible to infection, blood clots, and pneumonia.

And, MS is not fatal, but it is not unusual for people with MS to die from "complications of MS", such as pneumonia, infected pressure sores, or bladder infection.

[IntoDust]

Some studies have shown that infections such as UTI and URI may trigger relapse.

Also, pseudo exacerbations (worsening of existing symptoms) often occur with infections.

I’ve read that a URI increases relapse rates by around 25-50% and that’s a pretty big risk, but I’m not sure if I can control that as the infection I have is likely viral. I know I’m supposed to be resting, but I’ve never been good at “self care” when there are things to be done around the house. I need to work on that.

As for pseudo exaserbations, how likely are these to occur in absence of a fever? I haven’t had a fever this whole time but the numb patches on my legs have spread quite a bit and My legs from my feet to my knees aren’t registering temperature like they should be. I noticed in the shower yesterday that I could feel the water hitting my legs but it had no temperature to it, if that makes sense.

[pennstater]

My understanding is similar to KoKo's. It is the MS issues that an infection can trigger, not that MS brings on pneumonia.

Not sure what, if any DMT you are on. If you are on one that suppresses the immune system (not just a modulator), it could be that your doctor was concerned about a higher risk to contracting pneumonia.

Years ago, I once read an article that said bronchitis rates went down for MS patients. I found it fascinating, as I always had bronchitis and then it stopped a few years before diagnosis. Then came Tysabri, get them again, but that is a different story. It made me think - was it really the MS keeping it away or the fact that I ate better, walked, slept more, and reduced stress - all supporting a healthier immune system!

[KoKo]

As for pseudo exaserbations, how likely are these to occur in absence of a fever? I haven’t had a fever this whole time but the numb patches on my legs have spread quite a bit and My legs from my feet to my knees aren’t registering temperature like they should be. I noticed in the shower yesterday that I could feel the water hitting my legs but it had no temperature to it, if that makes sense.

For some (myself included here) even a very small increase in core body temp (which may not even be noticeable) can cause worsening of symptoms.

"These temporary changes can result from even a slight elevation in core body temperature (one-quarter to one-half of a degree). An elevated temperature further impairs the ability of a demyelinated nerve to conduct electrical impulses."

https://www.nationalmssociety.org/Li...re-Sensitivity

However, I have long standing PPMS and, along with the progression, have become increasingly more temp sensitive over the years.

But to answer your question, temporary worsening of symptoms can occur with infections, even without a fever. I've had infections, minus the fever, with accompanying worsening of symptoms.

Take Care

[SNOOPY]

As for pseudo exaserbations, how likely are these to occur in absence of a fever? I

A pseudo-exacerbation can occur without a fever. Not every illness causes a fever, but even a small increase in your core body temperature can trigger a pseudo-exacerbation.

I would like to encourage you to get a flu vaccine as it is far better to be safe than sorry. If there is ever a shortage of the flu vaccines MS is one of several categories of people that the CDC recommends the flu vaccine before those that are not in need due to health issues. A mix of MS and the flu can be a horrible.

It's also important to note: a pseudo-exacerbation can become a true exacerbation due to infections, viruses, the flu, or even repeated overheating.

pennstater
Years ago, I once read an article that said bronchitis rates went down for MS patients. I found it fascinating, as I always had bronchitis and then it stopped a few years before diagnosis. Then came Tysabri, get them again, but that is a different story. It made me think - was it really the MS keeping it away or the fact that I ate better, walked, slept more, and reduced stress - all supporting a healthier immune system!

I have never, in my entire life, had bronchitis or pneumonia (great, I have probably jinxed myself ). Some years I get just about everything going around and then I can go, literally years at a time without "getting" anything. Go figure

[Jules A]

Everyone is different for sure but I had acute Lyme years back which presented as 102-103 fever that would come down minimally with rotating ACTM and IBU but shoot back up as soon as they wore off. I felt horrid and was quite sick, my liver values skyrocketed. Thankfully after a week and a change in providers leading to an accurate diagnosis and doxycycline made me feel amazing within 12 hours.

This was after I was diagnosed with MS and I had no MS symptoms at all. I have also been through major psychosocial stressors since being diagnosed with no flair in symptoms, so far knock wood.

[IntoDust]

You guys are so great. Thank you for taking the time to talk me through this. I can read as many studies as I want but nothing compares to talking to all of you who have been through this.

Pennstater - I find that very interesting because I have had bronchitis three times and pneumonia once since 2013 which is when my MS first presented itself. Now when I get bronchitis, I get really sick and my symptoms linger for much longer than they ever have. I also turned 30 that year, and they do say that everything goes downhill after 30
I haven't started a DMD yet but I am supposed to start Copaxone next week, so I should be fine. I will not risk a DMD at this point that suppresses the immune system. My goal is to get back to work and since I work in healthcare, I don't want to increase my risk of contracting the things the patient's bring into the office.

Mamabug - The concerns about non-ambulatory MS patients was where I assumed the concern about pneumonia came in.

Snoopy - I don't have a lot of faith in the effectiveness of the flu shot and many years it is an abysmal failure. When my symptoms first showed up in March 2013, I actually thought I had the flu at first. I always referred to it to the strange time in my life where "I had the flu that wasn't a flu". In speaking to my neurologist, she assured me that it is very common for first relapses to come on the heels of an infection. Subsequent relapses as well. I realized that whenever I get sick, I relapse. And sometimes a relapse wasn't even an illness. At least I know what is going on now and why so many of my symptoms don't make sense for whatever illness I've had.
The relapse that changed everything came at the same time I had shingles and I've never been the same.

KoKo - How small of an increase in body temperature does it take to set off your symptoms? Half of a degree, one degree? I'm using a stupid mercury thermometer that is almost impossible to read.

[KoKo]

How small of an increase in body temperature does it take to set off your symptoms? Half of a degree, one degree? I'm using a stupid mercury thermometer that is almost impossible to read.

IntoDust ~

Let me just say that it doesn't take much!

Warming up from exercise or other continuous physical activity, outdoor heat and humidity, a hot shower, eating a meal with chile peppers, or even cooking something on the stove, etc. can all cause my symptoms to worsen.

Increases in core body temps, as well as ambient temperatures, both affect my impaired nerve signals.

(Very cold temps have a negative effect as well, in a slightly different way - but that's a topic for another time!).

Take Care

[SNOOPY]

Hi IntoDust.

In speaking to my neurologist, she assured me that it is very common for first relapses to come on the heels of an infection. Subsequent relapses as well. I realized that whenever I get sick, I relapse. And sometimes a relapse wasn't even an illness.

When we get sick (virus, infection, flu) MS symptoms can increase and sometimes to quite a bothersome level ~ this is referred to a pseudo-exacerbation which is not due to disease progression does no damage, and steroids are not needed.

Pseudo-exacerbations are self-limiting, when the virus, infection, flu resolves your MS symptoms go back to what is normal for you. In some cases, the pseudo-exacerbation resolves but MS symptoms do not ~ in this case a true exacerbation should be considered and discussed with your Neurologist.

It is really very common for anyone with this disease to see their MS symptoms flare-up when sick but that does not indicate a true exacerbation.

I don't have a lot of faith in the effectiveness of the flu shot and many years it is an abysmal failure.

Getting the flu vaccine is a personal choice. I have been getting it for many, many years and have been fortunate that I did not have the flu for those many, many years. Unfortunately, even with the flu vaccine I did get the flu in April of 2017 and although it was probably not as bad as if I had not had the vaccine; I had my hair come out in handfuls, it triggered my Asthma as well as my MS symptoms. Through the years I have stayed healthier since doing the flu vaccine.

[KoKo]

KoKo [/B]- How small of an increase in body temperature does it take to set off your symptoms? Half of a degree, one degree? I'm using a stupid mercury thermometer that is almost impossible to read.

IntoDust ~

I would like to add that the experiences of the members with RRMS might be more insightful and useful for you, regarding illness and relapse, as I have never dealt with true relapse events.

Anyways, hope you are feeling much better today!

Take Care

[KoKo]

When we get sick (virus, infection, flu) MS symptoms can increase and sometimes to quite a bothersome level ~ this is referred to a pseudo-exacerbation which is not due to disease progression does no damage, and steroids are not needed.

Pseudo-exacerbations are self-limiting, when the virus, infection, flu resolves your MS symptoms go back to what is normal for you. In some cases, the pseudo-exacerbation resolves but MS symptoms do not ~ in this case a true exacerbation should be considered and discussed with your Neurologist.

It is really very common for anyone with this disease to see their MS symptoms flare-up when sick but that does not indicate a true exacerbation.

SNOOPY ~ Thanks for explaining this so well!

Take Care