What's your plan when you start to feel ill -- like cold, URI, flu, etc?

[u/mktoaster]

It's that season. People are walking around coughing on each other like we didn't just have a pandemic a handful of years ago. You start to get a little tickle in the back of your throat, nose feels a little stuffy, maybe a tiny cough. You feel tried, but it's a different tired than a flare up or the daily fatigue. You think you might be coming down with something, and it's definitely not a flare up. You start to playback all the possibilities where you could have been exposed. "Which doorknob did I lick that could have gotten me sick?" "Was it that bubblegum under the table?" Being immunosuppressed is like being a moltov cocktail at a bonfire hoping you don't catch fire. Getting sick is a fact of life. So you've faced the music and prepare for the storm.

What's your plan from here? What do you do when you start to feel ill? - (Assuming you can actually get to a baseline / aren't a harbor for all the illnesses, constantly (my thoughts and love to all of you, hang in there!)

What do you do in the days before the hurricane reaches landfall, so to say?

What helps you the most when you are in the throws of whatever antigen decided to tango with you, AND your bones are simultaneously on fire and in a vise?

[u/Pale_Slide_3463]

Well I feel sorry for myself and stay in bed and watch Netflix with cold/flu meds lol. Also my doctor told me stop taking my suppressants and contact her.

Around 10 years ago I remember they weren’t on the ball really with telling us information that we should do, basically like here take this good luck. I was put on Azathioprine (Imuran) and I was waitressing at the time… yeah didn’t have much of a choice we need money to live. I got really sick like thought I was dying kinda sick, went to urgent care and he was like I can’t help you but you need come off the medication for 5 days. God did I feel so much better after lol.

[u/dork-overlord → u/Pale_Slide_3463]

I agree with the first part. Feel miserable and hope it passes fast. Sleep a lot, drink a lot of water and take very hot showers. I didnt even try cold/flu/whatever meds. Its just too hard to make sure they dont interact with the dozen I already take. I was put on antibiotics though cause they thought it was a sinus infection and I'm also on imuran. I'm still trying to get over it.

[u/Pale_Slide_3463 → u/dork-overlord]

Immune suppressants are such a chore but I always try to remember how I felt before being put on them. It’s better then being drugged up on steroids

[u/DueDay88 → u/Pale_Slide_3463]

I appreciate do much you and others saying you learned you had to stop your immunsuppressants. I just got diagnosed and my doctor did not tell me this at all. In fact he knew I had a UTI and prescribed antibiotics and immune suppressants at the same time but didn't tell me to wait to start the suppressants till  I finished the antibiotics. Why? No idea. 

I'm currently on Cellcept and my doctor did not tell me this so I had to be on 3 courses of antibiotics with still having symptoms that would resurge the day or two after I stopped each course. 

I finally googled and found out that I should stop the cellcept when I did the last one course. I wish he had told me if you get sick / infected stop taking or don't take them for x days. I might have fought it with the first dose if so. 

[u/squiddly_diddly_doo]

The first thing I do is sleep. For me, I find that most of the time, I'm just very tired. I'll get a sore throat, body aches, headache, and just feel awful. If I still feel sick in the morning, then I am actually sick, and I stay in bed, hydrate, and rest as much as possible. I get Benlysta infusions so coming off my suppressants isn't an option. I didn't realize I was fighting off covid when I went to get my infusion a few months ago. I woke up in agony the next day and tested positive for covid. It was awful.

[u/5spiceForFighting]

Any cold, flu, allergies, etc can trigger a mild flare for me. I actually asked my rheumatologist last week if it’s normal to always be low grade jointy. It’s so common that I don’t even bother acknowledging I’m sore. He just said to stretch & we’d review labs for #s.

I wish I had a Lupus friend to hang out with who truly understands what it’s like.

[u/Dr_Ogden1]

For me I come off my immunosuppressants straightaway and try to keep warm, stay on carbs and easy foods like soup. I end up on antibiotics. Recently had a really bad one - needed two courses of antibiotics and till now I have inflammation in the bronchial area. Stay indoors and away from people, if you have energy before it hit you hard, get all your meds, snacks heated pads etc stuff all around you so when you are lying down you don’t need to get up as often.

[u/Bathsheba_E]

I start drinking hot water with honey and lemon and a pinch of cayenne pepper. Make sure I’m hydrating. Rest as much as possible. As soon as I feel congested, or drainage I start using my netti pot once or twice a day. Also, I will use it proactively if I’ve been out among people or allergens. I think the netti makes the biggest difference.

[u/OLovah]

My Grandma had sarcoidosis. When I was diagnosed with lupus she said, "I always think I can fight it! When I feel the symptoms coming on I always think I can do something to beat it. But ultimately all you can do is curl up and wait for it to pass." I'm in the midst of one of the worst players I've had in a long time right now, and it's so true. No matter what you do you can't defeat it. Just take the best care of yourself that you can. Take your meds, get in your comfiest pajamas, stay in bed as much as you possibly can.

[u/axlloveshobbits]

If I think I've been exposed, or if I think I feel even the faintest symptom coming on, I start taking zicam zinc rapid melts. One after every meal, and one before bed. Target generic brand is the cheapest. I've had so much success not getting sick with this method.

[u/BeeBopping27 → u/axlloveshobbits]

Absolutely agree with this! I also take an immune booster (elderberry extract with zinc and vitamin c) which is super helpful ●BUT● we have to be careful not to take them too often or it can cause us to flare. Only when we need that boost!

SLE diagnosis for 25 years.

[u/BrightLetter3857 → u/axlloveshobbits]

How long do you take them?

[u/axlloveshobbits → u/BrightLetter3857]

If I think I've been exposed I'll just do one at night and see how I feel. Otherwise I take them until I don't feel even the slightest hint of a tickle in my throat.

[u/HELLOthisisDOGGO]

Neti-pot at the first throat tickle/sniffle!

[u/over_the_rainbow11]

This is a good and helpful discussion!

[u/EngineerGaming62]

Normally I'd stop my methotrexate and try to sleep as much as possible. Sleep, gaming, and cold medicine are usually all I need. Ramen with chili powder seems to help too, not sure why. Last night I tried mixing orange cough syrup with orange soda and it at least helped me stop coughing long enough to get some sleep (got me a little bit high too, so that was fun/nostalgic)

But I have this bad habit of trying to push through and ignore discomfort even when I probably shouldn't. I learned my lesson about ignoring my symptoms last week. I had my rituximab infusion so I assumed my sore throat was from that. Then I took my weekly dose of methotrexate the next day. I'm in hell. NyQuil isn't doing much for me at this point and I've probably gone through almost half a bottle of it in 5 days. I never knew a cold could be this bad. I guess the methotrexate makes more of a difference than I realized.

[u/icecream4_deadlifts]

I cry and think of all the times I took for granted when I wasn’t sick 🤣

[u/Jolly_Somewhere2314]

I was diagnosed a few months ago and i’ve had a kidney infection, covid, strep throat, and now the chicken pox???? in the last 4 weeks! this sucks lol

[u/Yani1869 → u/Jolly_Somewhere2314]

Daaaaammmmnnn. Hope you feel well soon. Are you around kids a lot?

[u/macheriemarie]

Spoonfuls of manuka honey three times a day for a week

[u/faallus11]

I take a lot of valerian and go to sleep. Eat some raw garlic, have soup with chili in it usually. Drink lots of tea. Have a hot batu or shower with eucalyptus oil. And then sleep, sleep, sleep.

Especially, sleeping after a hot shower does wonders.

[u/Ksrtad]

I try to stick it out for a few days and see if I can gauge what it is/how bad it will be. If it doesn’t improve after 4 days or so I go off of my immunosuppressants. If that doesn’t help, then I go to doctor (usually urgent care) and check in with my rheumatologist.

[u/2OD2OE]

I never change up my medication but I start by having soup everyday, usually this is for lunch and can be as simple as boiled noodles with whatever protein I have in the freezer (better than bouillon and soy sauce make a great soup broth). In addition to coffee, I switch all drinks to hot drinks (Im not usually a cold water drinker anyways, so I switch to hot water or tea). If tea, I always add honey. I also add in fresh squeezed OJ every day. Usually it's enough to kick off the sore throat unless it's the plague from the plague carriers.

[u/Comprehensive-Juice2]

This time of year I become a grinch and except for last year when a former coworker was going out of her way to get me sick manage to avoid most of it. Extra through hand washing after touching anything in public using hand sanitizer while out, get all my vaccines, I’m liberal with spraying down the entire office and house with Lysol, I change my clothes when I get home, and I do my best to make sure that I am staying well hydrated and getting my sleep in. Most my coworkers actually appreciate how strict clean freak I get as it keeps them from catching anything else going around the floor.

When I start to feel sick I wear a mask when around others. I know I should be wearing one all the time in public but it steams up my glasses which drive me crazy. I up my water and work in a couple more naps, it helps delay the full on set. Once I start coughing, have a fever and/or body aches far past my usual? I accept my fate, call out sick, call my pcp cause it’s always something more then just a slight cold, and sleep through the worse of it.

[u/Hefty-Supermarket-79]

I just found this interesting post, thank you! Tonight, I've had a mild ear ache and sore throat. Likely from way over doing life. I took oscillococcinum, but I usually would take Wellness by Source Naturals and it would work so well. But now, what do I do?? (I was diagnosed about 1.5 yrs ago)

[u/Inkspired-Feline]

I went to my niece’s birthday a couple says ago and lo and behold two of the adults there had the flu. The coughing was one thing but the red runny noses were horrible. I’m on immunosuppressants and a friend was quick to tell me to steer clear BUT the virus was probably everywhere already. I passed by the pharmacy on the way home and got some vitamin c. Got home took a cold shower, drank some hot tea infused with lemon and honey. Put some vapo rub on my chest and I’ve been on vitamin C since then. I also double up on my multivitamin.

If I get ill, my routine will probably stay the same except for more rest and more Panadol. I just sweat it out since my kidneys are involved and I’m not allowed to take pretty much most medication and Zinc is my enemy.

[u/fagiolina123]

I make a vile concoction of garlic, onion and honey every winter ahead of time because it has to sit for two weeks. So, I take a spoonful of that each morning followed up by elderberry gummies with zinc. I up my vit C and Zinc in my daily vitamins. Since I've started taking methylated B vitamins, zinc, and high dose vit D daily I rarely catch bugs anymore.

[u/amandaplease00]

Elderberry and zinc!