sinusitis and autoimmune disease

** Originally posted by docmks **

Hi everyone,

I recently went to a new ENT (ear, nose and throat) doc because I have constant inflammation in my sinuses and I very often get infections. I've been on antibiotics almost constantly since just before the Christmas holidays. The new ENT is very good, takes a lot of time, and is interested in the underlying causes for these problems. To make a long story short, he told me that he often sees chronic sinusitis in people with an autoimmune disease with chronic inflammation like RA and PA. Many of those folks have asthma (I don't but it runs in my family). Anyhow, I am now facing my 4th sinus surgery, but it is good to know that this problem is related to the chronic inflammation that I suffer from with my PA. I am just wondering if there are others out there with a history of chronic sinusitis. I thought that this information might be of some help,

MK

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29 replies. Join the discussion

** Originally posted by californiahiker **

I have had more sinusitis in recent years, but I had always thought that its because we have the second worst air (right behind LA) in the country (this is the San Joaquin Valley I'm talking about). My son has asthma and had to move away from here. He had constant sinusitis, which in turn triggered his asthma. He had 2 or 3 sinus surgeries before he moved away from here. The true relief came only after he moved.

Have you seen an allergist?

I'm not saying your sinus problems are due to allergies, but that is always my first thoiught. It would not surprise me to hear that immunosuppressed individuals get more sinus infections, but I've not read or heard about it yet.

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** Originally posted by bratsareus **

My sister has RA, Asthma, chronic sinusitis, and many other allergies. Most people with allergies have chronic sinusitis which in turn brings on the asthma. Most people with all of the above have autoimmune diseases too. It seems to all tie in together.
Patty

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** Originally posted by Kimbercat **

Hi MK,

You can add me to the list of chronic sinusitis sufferers. I've also had sinus surgery, but only one so far. Prior to that, I spent a lot of time on Augmentin, and worrying that I was developing one of those super strains that don't respond well to antibiotics. Since the surgery, which was about 11 years ago, I haven't had nearly as many sinus infections. I can almost feel them starting to come on, and I've learned to be proactive in treating them. I immediately start taking a course of echinacea ** (which I believe helps either fight off or at least minimize my symptoms), and I faithfully use my sinus rinse kit. This regimen will usually help me beat it without antibiotics if I catch it early enough. I hope you find some sort of connection, and also that you get through your current bout very soon. Take care.

**WARNING!! I was just informed by another reader here that echinacea is a big no-no for anyone with a compromised immune system....d'oh!! :eek: ....so disregard that part of my advice!**

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** Originally posted by grannyfranny **

Echinacea should not cause a problem unless one is on a drug that is meant to LOWER the immune system.
There have been studies done. My DH swears by it for his sinus problems but it does nothing for me. We are not on any drugs that lower the immune system. So, like other things,,,it helps some but not others.

http://nccam.nih.gov/health/echinacea/

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** Originally posted by docmks **

Hi all,

From what I can tell, I don't have a significant allergy component. I don't get the tell-tale signs of hay fever, sneezing, runny eyes and such. There is not a lot of variation in my symptoms. They are pretty much constant all the time unless I get an infection. We are moving into one of the big pollen seasons right now so I'll keep my eyes on this. My ENT did a blood test that was done for the purpose of evaluating the allergic component, and he said in ordering it that he didn't think that allergies were a main factor in my case.

Thanks for your comments and good wishes all.

mk

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** Originally posted by JesseLou **

Hi, MK - I started having sinus problems about 10 years ago. A month before my PA diagnosis, I had a terrible cold that ended up as sinusitis, and the only person who caught it from me was a 10 year old - the adults around me didn't even get a sniffle. These "colds" last 3 weeks, minimum, even when I am on Biaxin, which is a strong antibiotic, and I have at least one and sometimes as many as 3 a year. The symptoms are croup-like with sinusitis piggy-backing on the virus. And again, the only people who catch it are children.

When I was 29 and pregnant, I discovered that even though I remember having German measles (they called it 3 day measles in the 50's) I had no antibodies to it. Then I was hospitalized in the final stages of epiglottitis, and the docs at Mass General told me it was caused by a bacteria, probably one I should have had when I was a child. Ten years ago, I had self-limiting thyroiditis during a prolonged bout with a cold. I am beginning to wonder - perhaps immune system does not have the ability to "imprint" certain viruses and bacteria, and therefore I do not acquire immunity like I should? I have been thinking about seeing an infectious disease doc to see what light they might shed on treating this.

Just to make it more interesting - my mother is immune to everything: never had childhood diseases, 13 smallpox vaccinations didn't take, and she never gets sick - my sister has had her come over to help out when the whole family was down with stomach virus, and she didn't get it. She's 79 and has never gotten a flu shot. And my Dad had one single bout with PA.

That was more than you asked for, MK, but the bottom line is my immune system is whacked! I'd love to hear more about what you learn.

P.S. How have you been doing overall? I've been wondering about you.

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** Originally posted by docmks **

Hi all,

I started this thread a while back to report on my visit with an new Ear Nose and Throat doctor. He is an outstanding doc who seems to be quite knowledgeable about the inflammatory process. He told me that individuals who have this persistent, chronic inflammation in the sinuses, which often becomes infected because of insufficient drainage, are often affected by other chronic health problems, like autoimmune diseases. He sees the condition in people with RA and PA. And it is not uncommon to have a percentage of those with asthma.

Beginning last year, I started getting frequent sinus infections and ultimately was spending a good deal of time on antibiotics. The frequency of infections increased until I was spending more time on antibiotics than off. My doctor attempted an endoscopic exam of my sinuses, but the swelling was so significant that he couldn't see much other than surgery in my future.

All this to say that I am going in Monday for sinus surgery. My frontal sinuses need to be opened up, because they are completely occluded and he will also be working on my sphenoid and ethmoid sinuses and the maxillaries...all of them in other words. This is outpatient surgery but under general anthesthesia. This is my 4th sinus surgery. In advance of the operation I am on a course of prednisone for the next five days. I'll be back on Humira the week after surgery if all goes well.

I'd be interested in hearing from folks who have had recurrent sinus inflammation or infections. And I'll report back after Monday.

Take care all,
MK

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** Originally posted by SandraJean **

MK,

Good luck on Monday. I'll be thinking of you and wishing you good thoughts and quick recoverey. I'll be going in on the 18th for my nose surgery, if all goes well.

Take care,

Sandy

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** Originally posted by luvwinnie **

I've had 2 sinus surgeries and have asthma too. Hope this surgery helps you!

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** Originally posted by SandraJean **

Hi Again,

Just got back from the ENT and my surgery that was to be on the 18th had to be canceled due to other tests and medicene right now. Will be at a later day.

Again, good luck MK,

Sandy

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** Originally posted by patti2957 **

Hiya Doc, Jesse Lou and everyone else:
I've recently learned/experienced a few 'related' quirks and wonder if anyone else has similar experience.
Like Doc, I have had lots of sinus problems since PA; since late teens have had many bouts with strep as well. The doc I saw in '02, before PA, regularly prescribed antibiotics and prednisone, which didn't do my immune system any favors.
The way Doc MK describes her sinus problems and inflammation, it made sense to me that it doesn't 'stay put' in the PA locations, which might be why I battle intestinal difficulties (inflamed?). Also, Jesse Lou, I caught fifth's disease (slapped cheek), a benign childhood virus in 2002. Then, a year later I tested positive for Lyme's disease...
I have problems with blurred vision, like reading underwater, after only 20 - 30 minutes of reading/writing. I had blood sugar and eyes checked and the ophth said, casually, perhaps dry eyes and gave me fake tears, which I never used (I can cry by mysef:). I went to order new glasses, though, and the gal, who has arthritis, said said auto-immune disorders can cause dry corneas. (inflam-related of course)
One more thing... I've noticed my hands shaking visibly in the past couple of years, very embarrassing, and since I'm down to 5 mg of pred (from 25 mg) I thought it would help but it's much worse. My PA buddy from New Zealand, who is a nurse, said her hands shake when she gets depleted, something about the central nervous system.
So, to make a long story (sorry:) short, there seem to be many other side effects of PA than the standard fare offered by the rheums.
Anybody else?!?

patti

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** Originally posted by mb2 **

I, too, have sinus problems. I have asthma and allergies (tested by allergist) to "almost everything". I have (had?) a sphenoid sinus infection, started in mid-August. Have taken 1 wk of Ketek, Medrolx2for inflammation, finished up 5 wks of Levaquin last wk. A few days later my coughing was bad enough that I went back into the Dr who said I now have bronchitis. That was on Monday. I'm on Levaquin again for that. I was off it only for about 5 days. I am still coughing and I feel wiped out and have a low grade fever of about 100 every afternoon this wk.
Have never had sinus surgery, but am thinking of getting a second opinion from an ENT. My allergist/internist said that the CT scan of my sinuses showed "chronic" inflammation of the sphenoid. So I have all of the things that DocMK is talking about and have had them for a long time.
I am really sick of being sick. Our fourth grandchild was born on Wednesday and I went to the hospital to see her, but haven't seen her again. We did have her "big sister" stay overnight last night. I want to get better!! I want to hold the baby!
I've had so many sinus infections, bronchitis, allergies, etc, etc, I feel like I live on antibiotics.
I just found out that I should be stopping Enbrel and MTX when I get an infection. Is that why the sinusitis is chronic? I am not supposed to take them until I am well, but I don't think I've been well since August!!
Am feeling pretty desperate about the whole thing bec I know my joints and entheses are going to get even more inflamed with no Enbrel. I am also now getting patches on my elbows when I don't take Enbrel twice/wk. And I need it to help keep my PA under some sort of control.
Sorry to go on so long, but that feels much better.
MK, I hope your surgery goes well on Monday. I'll be interested in hearing more about what your ENT says.

Mary

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** Originally posted by mamaooch **

MK,
My thoughts and prayers will be with you on Monday! I hope ou find relief soon.


Have a great weekend!
Cindy

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** Originally posted by Kimbercat **

One more thing... I've noticed my hands shaking visibly in the past couple of years, very embarrassing, and since I'm down to 5 mg of pred (from 25 mg) I thought it would help but it's much worse. My PA buddy from New Zealand, who is a nurse, said her hands shake when she gets depleted, something about the central nervous system.
So, to make a long story (sorry:) short, there seem to be many other side effects of PA than the standard fare offered by the rheums.
Anybody else?!?

patti

Interesting, Patti. Yours is the first mention I've ever seen of having a tremor (shaking hands). I've developed one over the past 10-15 years (I'm 48 now), and never even thought about the possibility it could be related to some of the auto immune disorders. I had self-diagnosed, and was pretty sure I had what is known as "essential tremor", which definitely runs in my family. I can trace it back at least 4 or 5 generations. Now I'm curious if anyone else has this issue too. :confused: It seems to be getting worse and worse in the past few years, and I go back and forth taking propanolol to treat it, since I'm not sure if it really helps or not.

As I already noted several months ago, I've also suffered from chronic sinusitis for years (before my p ever really made itself known), and had sinus surgery to open up occlusions in my ethmoid and sphenoid sinuses about 12 years ago. It's helped alot, and now I can generally fight off the occasional attempt of a sinus infection takeover by hitting it early with echinechea, or if it's gotten beyond that with augmentin. I also use a sinus rinse during some seasons that seems to help keep my sinuses clear. I'll most likely end up having to have surgery again at some point, but for now, I'm doing well.

I'll be interested to hear of anyone else who deals with tremors.

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** Originally posted by docmks **

Hi folks,

Thanks for all the sinus stories and well wishes! I'm busy this weekend getting ready...doing last minute chores and house cleaning.

About tremors...my dad has one. My dad from whom I think I inherited PA. He has it but it was never officially diagnosed. I think I remember seeing a genetic locus involved in the inheritance of tremor...when I get a chance I will look it up again. It would be most interesting if it is on the same chromosome or near a locus for PA or P susceptibility.

More later,

MK

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** Originally posted by patti2957 **

Hi folks,

Thanks for all the sinus stories and well wishes! I'm busy this weekend getting ready...doing last minute chores and house cleaning.

About tremors...my dad has one. My dad from whom I think I inherited PA. He has it but it was never officially diagnosed. I think I remember seeing a genetic locus involved in the inheritance of tremor...when I get a chance I will look it up again. It would be most interesting if it is on the same chromosome or near a locus for PA or P susceptibility.

More later,

MK

DocMK, I hope your surgery is as pain-free and comfortable as possible.

What is the difference between tremor and shake? My hands shake like I'm in detox, but I'm not sure if that is the same.
Also, anybody else with blurred vision??
best,
patti

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** Originally posted by GitOverIt **

I don't know if any of you have read this article or not...I found it interesting since I have a niece that has had 4 operations for sinusitis who also has had severe allergies from the time she was a baby! and is now 45.... living in the Seattle area known for it's damp climate!

See: Mayo Clinic Study Implicates Fungus As Cause Of Chronic Sinusitis --Science Daily
"-Mayo Clinic researchers say they have found the cause of most chronic sinus infections -- an immune system response to fungus. They say this discovery opens the door to the first effective treatment for this problem, the most common chronic disease in the United States.
-An estimated 37 million people in the United States suffer from chronic sinusitis, an inflammation of the membranes of the nose and sinus cavity. Its incidence has been increasing steadily over the last decade. Common symptoms are runny nose, nasal congestion, loss of smell and headaches. Frequently the chronic inflammation leads to polyps, small growths in the nasal passages which hinder breathing.
-"Up to now, the cause of chronic sinusitis has not been known," say the Mayo researchers: Drs. David Sherris, Eugene Kern and Jens Ponikau , Mayo Clinic ear, nose and throat specialists. Their report appears in the September issue of the journal Mayo Clinic Proceedings.
-"Fungus allergy was thought to be involved in less than ten percent of cases," says Dr. Sherris. "Our studies indicate that, in fact, fungus is likely the cause of nearly all of these problems. And it is not an allergic reaction, but an immune reaction.""

http://www.sciencedaily.com/releases/1999/09/990910080344.htm

http://www.h2o2-4u.com/

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** Originally posted by RichJ **

hi mk,
i hope your surgery goes great and helps you monday. i wish you the best my friend

have a good night all

richard

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** Originally posted by baldwin123 **

Good luck with the surgery Monday!
Mb2, hope you are feeling better and get to hold your grandaughter soon!
Sandy, good luck with your surgery on the 18th too!

MK- I have chronic sinus issues- no allergies- but I do have asthma!
Jen

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** Originally posted by MikeK **

I'll be thinking of you tomorrow, MK. I hope and pray that everything goes well.

Mike

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