The Never-ending Sinus Infection!

[MSFlea]

Okay... how do you get rid of a sinus infection🤧 when your immunocompromised? I'm on my... I think 3rd round of antibiotics, plus I got an injection of antibiotics in-between the last two. I was also on steroids.. did a pack and then an injection and then 3 more days. I am doing a Flonase type rx nasal spray daily, and saline spray... I just got a nasal rinse thing, did my first one last night. I do NOT like at all 😶 but will continue to use as my ENT suggested it in his notes (I just read the attachments on his notes on the portal, wish I had found those sooner, I'd have been doing this longer.... though I don't like doing it). Plus I'm taking Mucinex and such to help the stuff move and to help with the coughing at night so I can actually get some sleep, as suggested by my doctor....

I just... don't know if there is anything else I can do to get rid of this. Is there? Do I need to just be resting all the time? I was there for a while, especially when it got worse this last weekend. I have only had a fever once with it so far, and that was this last Thursday, and it was just 99.1. I actually have had the opposite problem, and have been running a temp around 96.6 or 97.5. Don't really know what to think about that, other than I'm really cold!!🥶

And ladies, you know what happens when you are on a ton of antibiotics for too long, right😕? Yep. Now I'm fighting two infections. Don't worry, my doc called in pills for that and I got the otc stuff for it as well. Fighting it as hard as I can.

I just really want to be feeling better. I'm so exhausted. Any and all suggestions welcome. I know my immune system is really low from the Kesimpta. I saw the numbers from my lab test just this month. Wow😦. And my Kesimpta is due this upcoming week, but neuro says to delay it till the sinus and other infection are gone. I did get up and go to PT on Thursday.. I actually walked (very slowly) on the treadmill!! - and then came home and was running a fever later that night. Perhaps that was too much. BUT, I didn't want to pay the no-show fee, 😅😂

On top of that my left hand has been tingling. The one that went numb during my initial flare... is that just the infection making things worse?

I welcome any and all suggestions and ideas on how to get feeling better from this. And Thank you for reading my very long post, if you read this far!🧡🧡🧡😊

[CatsandCars]

I'm so sorry you're going through this. It sounds horrible! I'm just curious about what was out of whack on your blood work. On Ocrevus, also a B cell depleter, my bloodwork was pretty normal, except for one or two kinds of white blood cells. B cells can be nonexistent - that's what's supposed to happen, as you know, and for my immunoglobulins, but those took years to go down. Immunoglobulin G being lower than the normal range is a red flag for infection risk. (If that's low we can talk more about it, but I've been getting dizzy from my phone screen.)

I really hope you feel better soon. 🙏🙏. To me, it sounds like you're doing everything you can. Keep doing it, and being off the Kesimpta should help...it just sucks not knowing when that will be. ☹️

[MSFlea in reply to CatsandCars]

Thank you!🧡 I'm running a low grade temp again today - just discovered that. So, I'm taking the day very easy, and probably going to take a nap, even though it is a little late now for a nap, I think I'll risk it!

Sorry to hear you are getting dizzy from the phone screen! I know how that is.

[CatsandCars in reply to MSFlea]

You are wise to nap. If you can't sleep you can always watch Netflix? I hope not, but you know...

I know you've suffered a lot from those mean old screens, so I thought you would understand. 😊

I agree with cwright. The hand thing is from the infection, so I wouldn't worry at all unless it sticks around after the infection is gone, but it probably won't. That's the problem with MS, too many scary symptoms all the darn time! The good thing is that they often go away, given enough time. 👍

[MSFlea in reply to CatsandCars]

Glad it is probably just the infection, and hopefully it won't stick around! 🤞

I ended up watching shows, no nap, but I'm going to bed early🫡

[CatsandCars in reply to MSFlea]

Your posts are a lot shorter than mine...I have to remember that nobody's paying me by the word! 😂

[Cwright170994]

The one where your hand is tingling, I think it's a flare because you're fighting a powerful infection 🫂 I remember last month loosing feeling in the left side of my face (one of the symptoms that got me my definite diagnosis), but when I told my MS nurse about it, and how I was fighting the covid FLiRT variant AND a UTI at the same time, she told me it's likely a flare. Don't worry about your tingling hands, and try not to worry about your infections. As long as you're keeping everything as sanitised as possible, taking your meds as prescribed, and you keeping rested, you'll hopefully be fine 🫂 only saying hopefully because I'm not a doctor 🫣

[MSFlea in reply to Cwright170994]

Thank you 🧡I'll see my new MS neuro in two weeks so I'll ask him about my hand tingling... makes me nervous about having to delay taking my Kesimpta. But I have to get rid of these infections! I've got my Lysol wipes and hand sanitizer at the ready! 😀Now if I could just keep my teens from bringing home any new germs from high school!!🤣😅

[Cwright170994 in reply to MSFlea]

You can only try to get them from bringing stuff home 🤣 like, back in 2022, my husband caught covid! It was only 2 weeks or so after I had ocrevus. He was absolutely terrified of passing it onto me, and would tell me to sleep in our bed by myself whilst he slept on our settee 🤣 I told him that, if I was susceptible to getting the variant, I'd be testing positive. To be fair, I'd caught it right at the beginning before the vax's came out. He gets to/from work by train, so someone might have brought it on with them 😅

[CatsandCars in reply to Cwright170994]

Doctors try to avoid being definite, too. If I ask mine if something will go away, "He'll always say "Probably." Or "It should." I guess it's good that he doesn't overpromise? 😂

[Cwright170994 in reply to CatsandCars]

They do, apart from my 1st general practitioner, Dr Joseph 😒 telling me I was having panic attacks and prescribed me citalopram! I was going to him the mornings after I had a nocturnal simple partial seizure! He ignored me asking him to refer me to a neurologist! That was the case until I'd had a seizure in front of a triage nurse as she was doing a pupil reaction test, and the hospital Drs stepping in to care for me that day. I remember going to Dr Joseph to get more lamotrigine, after I'd been started on it by the neuro, and his face! 😈 that's definitely when he knew he was wrong all along!

[CatsandCars in reply to Cwright170994]

Ah, sweet vindication! 😂

[Cwright170994 in reply to CatsandCars]

Exacta-f*cking-ly 🤣

[Xvettech]

it sounds like you are doing everything I can think of! To me the mucinex is a big help! I hope you feel better soon and get the yuckiness gone!

[MSFlea in reply to Xvettech]

Thank you! 🧡Yeah, I like the Mucinex, I'm glad my doc suggested it! Have to drink a lot of water with it!

[CatsandCars in reply to Xvettech]

One time when my husband was sick, his boss quoted her mantra for getting over it - "Mucinex, Mucinex, Mucinex!"

[agate]

Hi, MSFlea--

I've been fighting sinus infections since the age of 15 though I've been really lucky for the last 15-20 years because I had only one that wasn't severe at all. The others were like yours--they dragged on and on, turned into laryngitis and nonstop coughing spells that convulsed me and wore me out, and I'll spare you the other details. Every time I needed antibiotics to wipe out the infection. Some doctors back then insisted on waiting till a "cold" had gone on for 2 weeks before they would prescribe antibiotics but if a doctor knows you have this recurring sinus problem, rules on that can be bent so that at the first sign of one of those sinus infections (mine usually come on with a scratchy throat), an antibiotic can be called in to your pharmacy. The idea is to knock it out before it settles in.

It concerns me that you're on your 3rd round of antibiotics. Is it always the same antibiotics, or are different ones being tried? Sometimes an antibiotic won't work on a particular type of bug. A throat culture should have been done so that the type of bug could be identified and targeted by the antibiotic that works against that bug.

My standard way of treating these infections has been an appropriate antibiotic plus a decongestant/antihistamine. I used to take Sudafed but now I take Claritin. I've found that a cough syrup helps with the nonstop coughing. I like Robitussin DM. Also, if there is chest tightness and the cough is getting pretty bad, I shut myself in the bathroom and turn on a hot shower and just stay there for as long as I can stand it, because the steam helps.

And I might do that repeatedly through the day. Caution: It can take the paint off the walls. Another caution: If you have problems with heat (I do), you have to watch that MS symptoms don't start up with so much heat exposure.

I put up with the MS symptoms if I'm desperate enough for the benefit of the steam, but it's risky.

[CatsandCars in reply to agate]

Good advice. I'm glad you haven't had that many in recent years!

Mucinex also has a DM formula for coughing, same coughing ingredient, but with the expectorant properties of Mucinex.

It probably sounds obvious, but if anyone buys Robitussin, be careful about which formula you buy. I bought the PM by mistake once, and I was pretty mad because I was coughing during the day, too, and I didn't want to be asleep. I guess that applies to many cold medication formulas.

[MSFlea in reply to agate]

All three antibiotics (plus the injection) have been different kinds. I started out on Claritin, but it started to make it feel like the mucus was in a tight ball in the back of my sinus, which was not a pleasant feeling, and the doctor wanted to get it flowing again to get it out so Mucinex is what the doc wanted me on.

I'm sorry to hear you've had sinus infections for so long! Thank you for all the suggestions!

I just had a CT of my sinus done, so we'll see what that says!

[agate in reply to MSFlea]

I'm glad efforts are being made. The very old advice about drinking plenty of fluids is probably good too even though it's certainly not a cure. If you can try to eat sensibly and get as much rest as you can, as well as drink plenty of fluids, you might be helping the antibiotics to do their job and stifle those bugs. Having MS might make it harder to shake off an infection, and so you have to go at any infection with all of the big guns you can think of.

[PugLuva]

Maybe get a second opinion?

[MSFlea in reply to PugLuva]

I see my ENT next week for a follow up... Hopefully I will not still have it by then! But he is an excellent ENT, imho, so if I do still have it, I'll take a list of what I've been on and ask him what to do. Thank you!

[Biggums]

Palms up for you MSFlea. Just stay vigilant. This disease is a battle. The same thing that protects you from infection betrays you. The important thing is to fight and try not to overdo things. Definitely get rest if you can. Good thing your body is still fighting. As with any battle, attrition is the key. Have you in my prayers 🙏🏾

[Greentime]

This is way out in left field, but I feel I should mention it. In my late twenties I was having one sinus infection after another. I went to a clinic doc who just kept putting me on antibiotics. (for 3 or 4 months) I finally said it wasn't working, she referred me to an ENT (I know you are already seeing one). He told me it was my tonsils. Once I had them out the sinus infections totally stopped. I hope you find your solution.

[MSFlea in reply to Greentime]

Had that happen with strep, once I got my tonsils out, I stopped getting strep all the time

[Angelchef80]

I am so sorry you are having to deal with this. I used to get sinus infections all the time and I started seeing an allergist. I started allergy shots around 10 or so years ago and it changed my life. I agree with pugluva maybe need to get a second opinion. I do know one time I had a sinus infection and my ms symptoms got worse my neuro told me is was a pseudo relapse. I hope you find answers and relief.

[MSFlea in reply to Angelchef80]

Thank you!

[Cielimar]

Hello I have the same problem and now feeling better I use honey,aloe vera and lemon. Two times a day. In the night use Vick massage my front head and my throat. Let me know

[MSFlea in reply to Cielimar]

Thank you🧡

[stepsforNeeC]

We’re family here my friend, write as much as you need. The only one question I might ask is; discuss possible different antibiotic for your infection. Sometimes our bodies become resistant to a regime of one type of antibiotic for a lingering infection.

[MSFlea in reply to stepsforNeeC]

Thank you!! 🧡🧡

[stepsforNeeC in reply to MSFlea]

Praying for your healing and the care team involved in your treatment. ❤️🙏

[MSFlea in reply to stepsforNeeC]

Thank you!🧡

[Linda3579]

I’m so sorry you are going through all this. I understand your worry about being on so many antibiotics. I have the same problem with antibiotics due to constant bladder infections. My primary doctor suggests I take probiotics everyday to help counter the side effects from the antibiotics. My neuro has delayed my Ocrevus infusion . I know that’s another stress to worry about. I hope you are able to get plenty of rest. Being exhausted all the time is so frustrating. Sending you healing thoughts and prayers that you will feel better soon. I know those sinus infections are so painful.

[CatsandCars in reply to Linda3579]

I agree about taking probiotics. Gut biome has been identified by researchers as being important in MS, so probiotics make sense to me.

[MSFlea in reply to Linda3579]

I had not thought about probiotics... I will order some. You and CatsandCars are both right, and I used to take probiotics, I don't remember why I stopped taking them (honestly I think I ran out and forgot to reorder! 😅🤣) Thank you!

[Linda3579 in reply to MSFlea]

So many things to remember when you have MS!

[browniemaker]

have you been allergy tested? There maybe be something in your environment keeping your sinus cavities swollen and not allowing them to drain properly. Hope each day gets better for you....

[MSFlea in reply to browniemaker]

I have, nothing came up, but then they didn't test for specifics, like things I know I'm allergic to, like wisteria. Which is blooming now. Thankfully we got rid of all the wisteria that was in our back yard, that I'm aware of, there was a lot last year, but as far as I know it is gone. But there is a bush in our front yard, that was there when we moved in that makes me sneeze, of course, lol. I don't know what it is, but it smells almost like honeysuckle.

Thank you! 🧡

[Mosmom33]

So sorry you're going through this. For sinus infections, I mix 1 cup water, 1 tablespoon unfiltered apple cider vinegar, and 1 teaspoon honey and drink it in the morning and again in the evening. Be sure to use unfiltered apple cider vinegar with the "mother". I use Braggs brand.