Lupus and colds/flu....help!
Hello everyone! I'm new to your site. I've had lupus for over 6 years. Over the past 5 months I've been sick every month with a cold or flu or sinus infection, sometimes with lupus flares, with a break of about two weeks inbetween each onset. My rheumatologist tells me this is not abnormal during flu season but I think we're missing something. This is not normal for ME! Labs came back benign except RBCs were out of range on the high side along with Hematocrit. Does anyone know what this means?Yesterday I flared badly and am still flaring today with a mild runny nose. All of my symptoms are that of a classic lupus flare (which I've had much experience with) except for the upper respiratory stuff. I used to get these 24 hour flares with cold-like symptoms; somewhat similar to this. Has anybody else out there had a similar experience? I read some articles about chronic rhinitis and Chronic Fatigue Sydrome and wondering if lupus would be included in that.
Five months of this now...it's time to reach out. I welcome your comments! I'd like to know I'm not alone![/b][/u]
Like you, I get a sinus infection at least 4-5 times a year. I have had problems with my sinuses and upper respiratory system since I was a teenager. WHen I was finally diagnosed with LUPUS, no one even connected those problems with the disease. After about 10 years with the disease and constant complaining about the sinus problems, my rheumy attributed it to the failure of my immune system (caused by the LUPUS) to fight off viruses, infections etc. Therefore, I am prone to upper respiratory problems.
My husband and I used to go to Las Vegas often. However, in the short walk through the casino to check into the hotel..I would have developed a sinus infection!! I have to travel with anti-biotics (which my rheumy changes every year because he feels my body will stop responding to them if I keep taking the same kind) and all I need to do is to call him and tell him that I have another sinus infection and he will call in a prescription for anti-biotics.
Every time we enter into a flu season...I get very, very ill and it hangs on in my lungs for almost a year- I never really get rid of the cough and/or phlegm in my chest!!
There is a debate about lupus and the flu shot! The general consensus is that, with an already compromised immune system, we SHOULD NOT take the flu shot! So..we are left to the mercy of the flu season, upper respiratory problems, sinus infections etc. etc. which seems to be a life-long predicament for us!!
If you find out anything more about this, or anything that we can do about it...please let us know!!!!
Fellow Upper Respiratory Sufferer
Colds/Sinus plus Photosensitivity
This is very helpful, if nothing more than knowing that I'm not crazy. My doctor hasn't really committed to saying that there is a definite connection. I think we, as patients, know these things. Each case is so different from person to person. As for the flare I'm having now, no new respiratory symptoms have really surfaced and my Dr. said it was from sun exposure this weekend. I know I am photosensitive but I refuse to wear long sleeves when I'm gardening (it's too hot!) and just take my chances (I do wear sunscreen and a hat). So, for you out there who are newly diagnosed and wonder if it really can happen, yes, it can, and it does, and it hits hard and fast and throws me for a loop every time. Getting back to the colds/sinus issue though, I've been sick every month since November and have experienced a couple of related flares. I have yet to have more than two good, healthy weeks in a row. I reach that two week mark and I get slammed again. Thanks Saysusie, for knowing how I feel!
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More info on chronic sinusitis/rhinitis
I did find out more about this, although it may not be specific to Lupus, it is nonetheless interesting to people like ourselves who suffer from this atypical symptom. There was a study some time ago that suggested a link between chronic sinusitis, and rhinitis (a fancy word for a runny nose LOL) with Chronic Fatigue Syndrome. Although CFS is a distinct illness, one wonders if these findings could be applied to Lupus patients as well because of our chronic fatigue....? The study was made up of people with CFS, allergies, and rheum. diseases including RA and SLE. It raised my eyebrow. Just thought you'd like to know. :idea:
Thank you so much, Spoolfool, for that information. Like you said, sometimes it is just good to know that we are not crazy and that we are not alone.
I often think that, if I did not have to deal with the sinuses and upper respiratory problems, I could handle the rest of my illnesses very well. But, the upper respiratory issues can be embarassing and they NEVER,EVER seem to let up :twisted:
Thanks again for that information
I really appreciate everyone's input on this topic - I have worked in social services with low-income kids/families for the last 5 years, where I seemed to always have a "virus" of some sort or another. LAst summer I had bronchitis for 8 weeks! In the summer! Since dx with SLE 4 months ago, I have been on immune suppressants for 3 months and not working, and have never felt healthier (in terms of viruses- not lupus symptoms). I think this is the longest I've ever gone without having a cold or flu.
Thanks again for the info!
Do the immune suppressants supress the immune system because ours is overactive? I haven't had to take them, and I'm curious how they work. I've now been told that a sinus infection that started back in Dec or Jan was never completely eradicated and that's why I've been sick so much and I'm back on A/B. The low lying infection, I believe, sparked little flares over the past few months. It's very interesting hearing from others who are experiencing the same thing. I'm glad I posted that message!
Yes, I had to go on immune summpressants because of Nephritis, so the Rheumy says they signal the body to stop attacking my kidneys. That's what my Rheumy says- that pur immune system is just "misdirected." I've got to wonder if that means that it spends so much time attacking itself, it forgets to deal with the viruses and bacterias we'd prefer it to be dealing with! Anyhow, between the Prednisone and Cellcept, I'm more likely to get viruses/bacterial infections, but haven't had a one since I haven't been working (knock on wood!). Those little snot-nosed kids sure know how to pass around viruses!
I used to have sinusitis 3-4months yearly up until couple of years back (now connect it to lupus).
Also -anyone prone to get laryngitis?..with the onset of this dz everyime i go into a smokey room or see a concert or just "yell a bit more" I loose my voice...i saw an ENT doc and he said Im fine---have overused vocal cords though (im not a singer!) so not sure what that means...anyway seems for lupies all of our parts our "more sensitive"