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Sjogrens Topics => Living With Sjogren's => Topic started by: vrystaat on August 12, 2017, 02:58:38 PM

Title: Acute Sinusitis
Post by: vrystaat on August 12, 2017, 02:58:38 PM
I have Sjögrens syndrome, and my current problem is acute sinusitis. It recurs every month and sometimes every 2 weeks. Typical symptoms with sinus pain, headaches, and generally feeling ill.
For all of these I try a Mupirocin inhaler or nasal flushing. This cures it often. I have also been treated in the past with Tobramycin flushing. Despite this I still get intermittent sinusitis. I think it has to do with the dry nasal cavity and a poor immune respose. I have a proven Gamma 3 deficiency. Has anyone experienced this? It really alters my overall health.
Title: Re: Acute Sinusitis
Post by: SunshineDaydream on August 15, 2017, 10:12:00 PM
Sinusitis is awful. Sorry to hear you have been experiencing it.  me feel like the elephant man when I've had bad sinus problems. My head just feels so big and my face is in pain.

I have been able to avoid sinus problems by keeping moist with xlear nasal spray when I feel pain coming on, and using Vicks personal steam inhaler before bedtime and as otherwise needed, a vaporizer while sleeping, and Arm & Hammer saline spray upon waking throughout the night and morning. I've also stopped using antihistamines for allergies as well as any other medication with drying side effect.

I hope you find some preventive treatment and remedies that work for you.
Title: Re: Acute Sinusitis
Post by: Nomad on August 16, 2017, 05:06:00 PM
I'm so sorry. They are AWFUL!  Are you in the states?
One year I got like seven sinus infections.
I changed my routine (s) and knock on wood, was able to stop them.
Now, I get perhaps one a year at MOST!

Everyone is different and what works for one person, might not work for another. But, honestly, it has made a HUGE difference for me and several people I know.
1. I wash my hands very often throughout the day.
2. I wash my hands prior to eating always.
3. I wash my hands after being in a public place/using something public like a shopping cart.
4. I wash my hands after being near a sick person.
5. I take oil of oregano capsules often. Let me explain.  If any of the following things occur, I take an Oil of Oregano Capsule:
 a.  I wake up with any type of cold symptom...even if it is subtle.
 b. I'm going to be around children.
 c. I'm going to fly in an airplane.
 d. I'm around a sick person.
6. I started taking several vitamins daily, including extra vitamin C daily. I think the extra vitamin C daily might help prevent colds/sinus/upper respitory issues.
This one I'm not sure if it helps, but I think it might >7. If I have a stuffy nose, I use a nasal spray called "Zicam."

I am absolutely positive that for me, washing my hands very often and using Oil of Oregano capsules GREATLY reduced how often I get sinus infections. For me, it is a wonderful preventative.
I think extra vitamin C and the Zicam nasal spray helps a little too.

Google "sinus infections and oil of oregano"  Some people even use it to treat minor infections. I just use it as a preventative. If I do get sick, I use an antibiotic and hot compresses.

HOpe you feel better soon!

Title: Re: Acute Sinusitis
Post by: Kathy57 on August 16, 2017, 07:14:39 PM

I seem to have chronic sinusitis and it has been made so much worse with Sjogrens!  Also, I had a horrible sinus surgery which was an absolute disaster!  I'll never be right again.😡

I am helped by doing saline nasal rinses twice per day and if really dry - I will sometimes do it a third time.  I take NAC twice per day and use a vaporizer wherever I can.  I take Evoxac three times daily.  I also use oil of oregano drops if I feel something coming on.

I have a really great ENT at the U of Iowa but I wish I had gone to him to begin with!  He would have never ruined my sinuses!  Unfortunately, what was done to me cannot be undone.

I have sinus pressure and headaches daily.  I feel for you, but there are things you can do to improve the situation.  Ibuprophen is my go to drug for inflammation and sinus headaches.

I also take a 12 hour mucous thinner - guaffenisin.  Might have the spelling wrong.  Also I will sometimes coat the inside of my nose using a clean Q-tip and Aquaphor ointment.  I swear my sinuses get so dry that they feel like cardboard!

Hang in there.


Title: Re: Acute Sinusitis
Post by: LucyD on August 23, 2017, 10:26:53 AM
I have had five sinus surgeries in my life. (Ugh!) I used to get sinus infections about 8 times a year or more -- sort of lived with a chronic infection that flared badly at times (the "about 8 times a year"). After the last surgery, the ENT doctor had me start using the NeilMed Sinus Rinse bottle at least once a day (I use it at night to flush out everything before I go to sleep, but when I feel congested, I use it in the morning too) with distilled water and salt (8 ounces of water with 1/2 teaspoon of salt). He has me add one respule of Budesonide (steroid). You can get the bottle (and individual salt packets to make it easier if you like) at just about any drugstore or online. It has a tube like a straw that fits in the nozzle and then down into the bottle. You fill it, shake up the water, salt (and steroid if you have one), lean over the sink slightly and just squeeze gently, putting the nozzle in one nostril and then the other. Because of the tube that fits up into the nozzle and goes down to the bottom of the bottle, the salt water solution flows fully but gently into your nostril, up into your sinuses and out the other nostril. Then you tilt your head forward side to side slowly to ensure everything runs out. Then blow your nose. It has helped a lot.

I hope you get relief and improvement. It is painful and just makes you feel horrible to have sinus infections.
Title: Re: Acute Sinusitis
Post by: irish on August 23, 2017, 09:51:46 PM
I want to encourage you to do daily nasal irrigations. There is a product called Alkalol that can be bought at Walgreens OTC. This was given to me by my ENT many years ago. It is not antibiotic but does't have things in it that help to clean and debride the nasal area. This helps to prevent the sinus infection in many people. Also, if you have not had blood work to check for immune deficiency I would arise you to seek out an immunologist and have him check you for white cell counts that are too low to fight off infections. I ended up with 4 autoimmune diseases and was then diagnosed with severely low t-cells plus low IgG levels. I had so many really bad infections and then I knew the reason why.

Good luck with your search. Irish
Title: Re: Acute Sinusitis
Post by: vrystaat on August 25, 2017, 06:23:24 PM
It's me again. I have a few things to add. Most ENT Physicians are not used to treating recurrent sinusitis, let alone Sjogrens. You have to help yourself.
My hard-earned lessons are:

- Guaifenesin is a very good idea. It's very cheap.
- You can make saline nasal spray yourself: half a teaspoon of salt in 1 cup of sterilized water (boiled). The retail versions are ridiculously expensive. (Ayre)
- Neilmed Nasal Gel seems to me, to actually cause flareups
- Hold off on nasal surgery. I have had four, and I'm not better.
- I am now using daily saline sprays. I will switch to Tobramycin when I get infected.
- If your doctor puts you on antibiotics, it should be for 3 weeks. An infectious disease MD takes care of me now, and always gets a nasal bacterial culture.
Title: Re: Acute Sinusitis
Post by: hayley3 on August 26, 2017, 05:14:24 AM
I'm new here and just signed in for the first time and saw this topic which really applies to me.  My sinuses have ruined my life.  I just found out that I have mold allergies.  I am having a CT scan done on August 30th.

Every morning I wake up with puffiness under my eyes and facial pain and congestion but my nose is not clogged, I just feel the congestion in my sinuses.
I notice that if I eat sugar or yeast products, it makes me worse in the mornings.  If I don't start doing sinus rinses, I will get the worst sinus infection that will last me two weeks or more.  I lost my job/career mainly because of my sinus issues.  I was so sick.   And antihistamines made me glad I figured that out.

Title: Re: Acute Sinusitis
Post by: gurs on August 26, 2017, 05:53:54 AM
I have sinusitis that lasts everyday from may-october. Its starts when the allergens kick in. Its a nightmare. The constant pain and pressure in my head/face/eyes and no moisture. Its mostly inflammatory related, but warn those who take antibiotics without an actual infection might even have fungus. I would have your ENT always do cultures first, or if your blowing greenish out of your nose etc, would indicate an infection.

Funny how one day I took antibiotic Erythromycin for my gastroparesis, and felt immediate relief in my sinuses? it was amazing! I couldnt continue it because of my systemic yeast issues, but would have if this was not the case. I did some googling and found they use it in some sinusitus cases.

Looking forward to winter!
Title: Re: Acute Sinusitis
Post by: irish on August 26, 2017, 11:41:12 PM
I just wanted to add that the ENT is usually the best doc to see with chronic sinus or any sinus issue for that matter. They specialize in ears, nose and throat and are very well versed in the anatomy and workings of the sinuses. Generally, if someone has chronic sinus infections the family doc will refer someone to an ENT doc.

The one thing that most docs don't understand and an ENT will understand is that the mucus is the very important component of a sinus infection. With Sjogrens and other autoimmune diseases the mucus is affected and becomes thick and abnormal. Normally the mucus contains around 700 bacteria that help protect us from infections of sinuses and mouth plus the cavities in the teeth. With Sjogrens this defense is shot to heck and our mucus doesn't help us like it should. This is why the best advice an ENT gives is to irrigate your nasal cavity every day. Most of the time twice a day irrigations are advised and I have been told over and over that the more water used the better.

I have been irrigating my nose for close to 20 years and it does get old but it saves me from a lot of grief. When I first started I was irrigating up to 8 times a day a lot of the time.I use salt and Alkalol which is a product that is sold over the counter at Walgreens. It has cinnamon and cloves and other natural ingredients and helps to clean up the sinuses and remove the mucus and slightly disinfect them. It also helps with the terrible taste in the mouth. It doesn't take as much in each irrigation as the bottle says. I use less than a tsp to 1 cup of water.

The water for nasal irrigation should be distilled water and it should be boiled a few minutes to kill off the bacteria that might be in it. Regular tap water or unboiled tap water can cause infections at times. There have even been cases of the infection that people get from swimming in warm water where those weird bacteria grow that cause the brain infections. I boiled my water up and then place in an extra gallon water container. I rinse the bottle out with some of the cooled boiled water, pour the boiled water in and refrigerate. I boil enough for about 5-7 days. I don't like to let it sit too long. Another thing to do that takes time, I know, but it cuts down on the sinus infections.

Also, if you haven't had blood work to check for immune deficiency it would probably be a good thing to do. Often one has to see immunologist as they are the ones who usually diagnose these conditions. People with autoimmune diseases often have immune deficiencies and this can result in many sinus infections, pneumonias, etc. The most common are the low IgG levels. Many people on here have immune deficiencies. When I was diagnosed with myasthenia gravis and Hashimotos my immunologist did more testing and low and behold I had severe ly low t-cells and low IgG levels. I had no clue but that is why I practically lived on antibiotics for years----and no doctor ever questioned why!!!

Just some info for people from my experience. Good luck all. Irish
Title: Re: Acute Sinusitis
Post by: helloz on August 28, 2017, 11:33:11 AM
Sinusitis and infections have been my number one problem as well.  I also read somewhere that frequent sinus infections was sometimes a prelude to a later Sjogren's diagnosis.

Sadly, I was treated for many years like my problem was environmental allergies.  I did have that problem, but now I don't think it was ever severe.  What I had was a dryness problem, so when my body would respond to an environmental allergen, dryness made it difficult to flush it away like most people's bodies do.

3 Sinus Surgeries - the last one helped because it finally allowed me to use a nasal rinse.  Previously, I would do a nasal rinse and some of the water would just get stuck and seem to make things worse.  After this last surgery, I was able to flush my sinuses and this seemed to be enough of an improvement to prevent sinus infections for almost a year or so.

I had told my ENTs and Allergists that my nose was always dry - none of them mentioned to me that dryness might be a cause of the problem.

Then I started doing allergy shots, thinking that was the underlying problem and I think it made things worse.  I took antihistamines which would make me even more dry but I didn't realize that was the issue.  Budesonide in the nasal rinse did seem to be somewhat helpful.

I tried just about everything over the counter and every prescription allergy med, - and then tried Sinus Buster capsaicin nasal spray.  This seemed to help in the moment, and prevented a sinus infection or two - but did not completely solve my issue.  My experience with that spray is when the light finally came on - and I wondered if my underlying problem of sinus infections might be dryness, since what Sinus Buster did was make my eyes/sinus "water" because of the capsaicin.

Reading up a bit, I learned about Evoxac.  After a few different doctors said they would not prescribe it for me, I finally convinced a doc to let me try it.  Now 9 months on Evoxac and no sinus infections.  I do one nasal rinse per day and take Evoxac.  I also run a humidifier near my head at night, and now look to keep more humidity in the air instead of trying to get rid of it to keep dust mites away.

No idea how long this panacea will last but right now I'm just enjoying the moment.

Best Wishes
Title: Re: Acute Sinusitis
Post by: irish on August 28, 2017, 03:45:44 PM
Has any doctor tested you for autoimmne diseases? I would think that an autoimmune disease would be present in order to cause the dryness. There are other causes of dryness, but some of them can also be other autoimmune diseases.

I only had one nasal surgery and it was for the deviated septum and turbinates and that allowed me to have better luck irrigating my nose. However, I had a horrible infection that time I did not know I had autoimmune disease or immune deficiencies. I had had allergies since asround 4 years old and had really terrible ones in teen years.

People with autoimmune disease, immune deficiencies also frequently suffer from a lot of allergies. These problems are all inter related and are what an immunologist treats. good luck. Irish

Title: Re: Acute Sinusitis
Post by: gurs on August 29, 2017, 06:22:34 AM
Allergies play such a huge part. Mold especially. A few years ago when I moved to a new condo, we found black mold under the kitchen tile and in the walls. The builder kicked me out for about a month and did the whole remediation thing. It was hard to tell if I was sick from all my autoimmune issues, or the mold. Anyways, after that I noticed I did feel better.

Fast forward 2 years..moved to another newer condo and my sinuses started up right away. We even installed 2 special air cleaners on our HVAC system, as well as other portable air cleaners...not sure if they are even helping. Ive had nothing but sinus issues since I moved in 2 years ago. Not sure if the air cleaners are working, or its just my autoimmune flaring etc.

I did have a few issues with the bathroom faucet leaking underneath and fixed problem, but wonder where mold might be? It can get in between your walls etc and you wont even know it. I dont want to get professional air testing because I dont want to even know.
Plus, its super expensive and my immune system is whacked, so even if it came back normal doesnt mean Im not senstivie to the mold.
Ive been so bad the whole summer with all the allergens, looking forward to winter. May have to move in with my mom for 2 weeks to see if I feel better, then I will know for sure if its my condo.

wish I had some advice..
Title: Re: Acute Sinusitis
Post by: irish on August 29, 2017, 08:13:42 PM
It may not be mold. You mentioned that you moved into a newer condo. I would wonder if you are having a reaction to a chemical in the carpet, drapes, cabinets, woodwork,etc. I cam highly sensitive to all of the above. I have to hang up new curtains and drapes overnight so they disperse their chemicals in the air. If I have problems I will know within 24 hours.

Cabinets and woodwork will have additives in the glue or other componets that are highly irritating to everyone, not just people with allergies. Hope you can figure this out. Irish
Title: Re: Acute Sinusitis
Post by: gurs on August 30, 2017, 04:21:34 AM
Oh yes, could be anything. Im very careful though. Its all wood flooring no curtains etc, but everything has something in it. 1 in million shot to figure it out. My immune system is so out of whack, it could be the smallest little thing I wouldnt even think of.

Im ready to move out soon for 1 or 2 week trial to see if this helps. If it does, Im in trouble..ha ha. Not sure what I would do then.
Title: Re: Acute Sinusitis
Post by: irish on August 30, 2017, 10:52:22 PM
A tent could be an option in an emergency, (haha) but if you are like me you would almost die cause no matter how well tents are taken care of they always smell of mold. Good luck. Irish
Title: Re: Acute Sinusitis
Post by: gurs on August 31, 2017, 04:08:49 AM
Ha Ha thoughts exactly. My family always teases me I should live in a bubble...if I felt better, I would do it!!

I think because of our Low T-cells, all the other disorders, we cant win. Cant even take an antihistamine either.

Title: Re: Acute Sinusitis
Post by: Nomad on September 04, 2017, 12:11:06 PM
My worst period of time was when we were in a condo. We got a top notch air purifier and went overboard on the cleaning and dusting and it helped. We also aired it out periodically by opening the windows (now and then). I think it helped a little.

But for me, my biggest help is the Oil of Oregano.