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anyone with constant sinus problems???

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Posted 6/2/2008 3:13 PM (GMT 0)
I am on Imuran and MTX and here lately I have been having a lot of sinus problems. The last time my nose was bleeding and I was spitting up bloody mucous, I went on a round of antibiotics and everything cleared up until about a week after I finished them. There is no blood this time but it's dark yellow, sorry TMI

My PCP said since I am on 2 immune suppressant drugs to be careful of infections. Is this why I can't seem to shake this sinus stuff? I am so sick of spitting up this stuff for the first couple of hours that I am awake. I go to my rheumy in a week and will ask her but I didn't know if anyone else experience the same thing.

Take care all!
Posted 6/2/2008 8:20 PM (GMT 0)
Stacie, I"m sitting here thinking that the stuff you're spitting up is not something you want to let go by for too long.... Especially if there was blood.  Do you think the blood was running down the back of your throat from your sinuses?  Or was it coming UP out of your throat? 

 

I have tendancies towards sinusitis.  It's the Imuran, prednisone and sjogrens that are the culprits for me.  It doesn't bother me too much, but I do know what it's like to have this.  Please reassure me that the blood is coming from your nose and not your stomach or something!!!

 

Ginny

Posted 6/2/2008 11:26 PM (GMT 0)
Ginny, yep it was sinusitis. It's not bloody now, but when it was it was coming from my nose. The antibiotics cleared it up for a while, I just wish it would stay cleared up.

I never thought of it being from sjogrens. Would it be because it's dry? I wonder if a humidifier would help?
Posted 6/3/2008 12:52 AM (GMT 0)

Hi Stacie, I'm sorry you are dealing with this. I don't have sinus problems but I know a lot of people out here that are really suffering because of the allergies and everything bloming. Mine is always my lungs. I take anti _b's 3 days a week but last week she put me on some heavy duty ones because I couldn't breath. They didn't hlp at all. I asked her for more and she said no. She said I'd just have t deal with it until the humidity lets up. eyes .Easy for her to say!

I hope your rheumy can help ya

love ya

carol

Posted 6/3/2008 3:15 AM (GMT 0)
Dryness is part of it for me...a humidifier does help, but doesn't always make sense -- here in the south we have lots of humidity, but run our A/C units on purpose to take out some of the moisture -- hard to justify turning on a humidifier in the summer -- i just use in winter. There are sinus sprays that will add moisture just like the eye drops work for eyes, but I haven't tried them myself...maybe someone else has
Posted 6/3/2008 2:32 PM (GMT 0)
They say also those neti pots work great for flushing your sinuses..A cheaper way  Is buy non-idized salt .1/4 tspto 8 oz of warm water and a bulb syringe....diane
Posted 6/3/2008 3:03 PM (GMT 0)
Thanks Carol, Lynn and Diane ~ my pcp gave me some nose spray but I haven't used it, never been one to use those things. My nose doesn't get "stopped up" and I breath ok at night... I just have a lot of drainage. It usually only bothers me for the first couple of hours that I am awake.

Thanks again ladies!!!! ((((( hugs ))))
Posted 6/3/2008 6:37 PM (GMT 0)
I have an odd contribution, as long as I am on Evoxac for my dry mouth I have no sinus problems but when I am not on it I have one sinus issue after another include severe infections that take months to clear up even with several rounds of antibiotics. I know my nose is not as dry with the Evoxac though that is not one of the side effects listed (I consider it a hidden benefit). It may be time to add something more than mouth wash for the dry mouth since it may help the sinuses.
Posted 6/3/2008 11:04 PM (GMT 0)
My rheumy gave me Evoxac to try and I could tell a difference in my dry mouth but at that time the dryness wasn't bad enough for me to go on one more med so I stopped it. It may be time to give it another try and see if it helps.

It's starting to make sense, I've had a lot of burning sensations in my nose, so bad that I wanted to stick a wet washcloth up there but I was at work and suffered through it. It's definitely on my list to talk to my rheumy about, thank you Redrose!!!! That's why I love this place, you can most always count on someone experiencing the same thing and able to help others. :-)
Posted 6/5/2008 12:31 AM (GMT 0)
Stacie,
The Evoxac got rid of my chronic sinusitis. I was so dry I didn't bleed out like you do, but I was always plugged up and it was terrible. The evoxac did fix that, though I still show increased uptake of gallium in the area in my gallium scan, so I probably should use some kind of saline spray at night before bed or something. Someone else told me to reduce dust, that helps alot.

Hope you feel better. Flonase helps me too. I notice restasis eye drops makes me more plugged up, so I have to go on and off it every few days to prevent the problem.
Posted 6/5/2008 1:11 AM (GMT 0)
Thanks Marji, I guess I should probably try the nasal spray too and I definately plan on talking to my rheumy about going back on Evoxac, maybe this time I won't experience night sweats (yuck)!!! Thanks again
Posted 6/7/2008 7:00 AM (GMT 0)
Stacie,
I was having problems with it, squirting saliva all over and drooling at night. I went down to one capsule at night and still notice improvement. I think it might be a little hard to metabolize, so maybe not everyone needs to be on it three times a day, or even two. Taking it at night helped the most. Also, the sweats for me went away after a week or two, but the drooling and all started after the sweats wore off.

My mom said there is a really good nasal spray now that is totally natural. It is about 12 bucks a bottle and I can find out the name. She was put on it from her doctor. She said it is the only nasal spray that helped with her chronic sinusitis (she was in a car wreck long ago and her face totally rebuilt with silicone and she has bad sinus problems and bleeds). Anyway, this over the counter spray fixed her right up. I wish I could remember the name, but a good pharmacist might know, or someone in a health food store. I think it is a homeopathic medicine, but one of them that really really actually works really well. It is very expensive though.

Flonase works for me, but Idon't have it as bad as you and my mom do. I know my ENT said to avoid any allergy pills that would dry out the membranes and also avoid the 12 hour cheap nasal sprays with strong decongestant ingredients, but you probably already know that. They dry you out. Flonase is good. and Rhinocort.

I hope you can manage with the Evoxac. Even if you can manage to take it at night once a day, at least you won't wake up plugged up and dry eyed, and during the day you can use your topicals as you need them. I'm sure the doc will have a solution to it.

Will be sending hopeful thoughts your way.
Posted 6/7/2008 10:18 PM (GMT 0)
Thank you Marji, Oh yeah I remember the drooling at night too. I think I was only taking it at night but I don't think it was as bad as it is now. Maybe I'll start every other day and see if that helps without all the sweating, etc. I will check on the nasal spray you mentioned, thank you.

My PCP gave me Allegra with the antibiotic and it dried me out really bad, I only took it a couple of times. I don't think I even told her that I had sjogrens too, maybe she would have put two and two together. I see my rheumy on Monday so I am hoping she will fix me right up.

Thanks again!
Posted 6/8/2008 1:23 AM (GMT 0)
I can't take things like allegra because they dry me out so bad I have horrible nose bleeds. It makes it really hard to treat my allergies. I messed around with when I take my evoxac, for me the dry mouth is so bad that if I do not drink fluids at least once every hour my mouth is not all that gets dry, the top of my throat gets dry and the tissues begin to swell. The longer I go the worse it gets and I will even begin to have problems breathing (not from swelling but dryness). So my problem may be worse than yours. I had been taking 1 every night but I am beginning to have trouble during the day and I likely need to go up to twice a day.
Posted 6/8/2008 5:57 AM (GMT 0)
Actually the one thing I have been able to take that didn't dry me out alot for allergies/colds is that Tylenol cool blue liquid. There is one for day and night. I think it's because it has quaneficin in it and that guaneficin thins your mucus and makes your nose run but clear out well. It also soothes my sore throat. Guaneficin over the counter might be an option or the tylenol cool blue. Family dollar has their own brand which is cheaper. I'm not sure it will remove all your allergy symptoms, but it shouldn't dry you out so bad.

Also, I think some of the nausea meds are also allergy meds and they may not dry you out so much, I don't know but the pharmacist would. guaneficin might really help, especially along with te evoxac.

Yeah, that drooling is really sexy. My boyfriend got totally grossed out, after he found out I wasn't drooling over him (in fact wasn't even awake).

Marji
Posted 8/9/2008 5:09 PM (GMT 0)
After I orginally posted this message I saw my rheumy, she didn't think it was from Sjogrens because the mucus wasn't clear so she gave me a Z-pack and it cleared up.

Well it's happened again, I started spitting up bloody mucus. This is the 3rd time since May. I called my PCP right away and she wanted to run some labs to check my platelets which were fine so she called me in another antibiotic. She is still blaming it on the immune suppressant meds. Not sure if that's it or not.

I really don't think it's sinusitis as I have no facial pain. I don't cough, my nose doesn't really run, it just constantly drains to the back of my throat. I've been reading on the internet and spitting up blood (Hemoptysis) can be caused by lupus so I plan on talking to my rheumy again about this.

Any thoughts?????
Posted 8/9/2008 11:01 PM (GMT 0)
MTX an Plaq here and constant unending sinus infections. I definetly have more sinus infections now then I did before the mtx but I have always had them from allergies.
Posted 8/10/2008 2:16 AM (GMT 0)
Greetings!

I certainly have constant sinus infections and it is very annoying to say the least. I spoke with my rheumy about Evovac and she is worried about the side effects because it can cause your heart to race. She says if I have more problems she will prescribe me a half dose to see if I can avoid the racing heart issue. (I seem to have all of the worst side effects of all my meds so far.)

I have my next appointment is on Wednesday and I think I will try the reduced dose and see if it helps.

Also, my rheumy has me go off of my Arava if I am on an antibiotic for any infection, except sinus, so that the antibiotic can work better. I needed three rounds of antibiotics for my last bladder/kidney infection so I have not been my Arava much this past month. This worries me, too, because I don't want to go into a flare. No wonder I cannot get off of the prednisone!
Posted 8/10/2008 3:50 AM (GMT 0)

Marji and Stacie - I'm pretty sure the nasal spray you are describing but can't remember the name of is called Xclear.  It's an all natural nasal wash with a xylitol (sugar, I think) base, as opposed to a saline (salt) base.  It seems to work so much better than Ocean Spray.  I used to have lots of sinus infection- and dryness was a big part of that until I tried the Xclear.  I am religious about using it now before I go to bed and whenever else my sinuses start hurting or feeling dry.  Keeping those membranes hydrated is really important.  The neti pot is also very helpful, especially in the middle of an infection with a lot of congestion.  But for maintenance and prevention I'm really sold on the Xclear - and though it's pricey - is worth every penny when you compare it to dr. visits and avoiding yet another Rx drug! 

Lucy

Posted 8/13/2008 1:30 AM (GMT 0)
Thanks Lucy so much, that's exactly the name!  :-) I remember now about the xylitol, telling my mom it was a sweetener and thinking it was odd. Can you give me any ideas where to get it?

Posted 8/13/2008 3:54 AM (GMT 0)
Hi Marji,
I get mine at the local health food store. Not sure where you live, but chains like Earth Fair, Wild Oats, Whole Foods etc. might carry it also. I have never seen it at the regular grocery/drugstore.
I just looked at the bottle - they have a website also. Don't know if I'm allowed to type that in here....but I noticed the name is xlear - (no "c").
Hope it works for you as well as it does for me!
Blessings!
Lucy
Posted 8/13/2008 5:02 AM (GMT 0)
Thanks Lucy! I will plan to get some tomorrow!
Posted 10/9/2011 8:26 PM (GMT 0)
8 months ago,I had sinus surgry to try to clear up my sinus infections. It was the worst thing I have EVER done. After surgery,I aspirated blood into my lungs and ended up on life support for 12 days. THen I got ICU synrome,a condition I still don't completely undrstand but it is a form of psychosis. I punched,screamed,yelled,bit,cursed (and I don't curse) until they had to tie me down and sedate me. I lost all bodily function control. (Sorry if TMI). When I woke up,I was convinced,there was a hospital conspiracy against me and my husband was involved. Ater about a week,I became myself again. I don't remember being on Life Support but I do remember some of the ICU syndrome. I am very embarrased about it but it was out of my control. I had nurses and drs. giving me the dirtiest looks as they walked by because I must have been a real Tasmanian Devil. I apologized to anyone that walked by yet no one would speak to me except about my medical things. Finally,I heard an angry charge nurse told them they were all professionsals and she was REQUIRING them to read up on ICU syndrome. In my opinion,they should have known about it anyway. Attitudes sure changed toward me after that. Some had no idea I couldn't control myself.
But I am still not well. I suffer from major headaches. I have pain all around my right sinus,my right temporal hurts really bad and it feels like my eye is going to pop out. My right sinus also hurts very badly. My right ear really hurts. My ENT can find nothing wrong and I am getting a second opinion I decided because something IS wrong.
I have been to two neurologists. The first one was a total jerk. My new one is nice but I have only seen her 2 times and she has yet to look at my MRI'S or get my hospital records. She has just decided I have migraines. I see her again next week and if she hasn't seen my records or MRI's yet,I'm looking for a new one. That's the FIRST thing she should have done because I was told in the hospital that I suffered a very mild stroke and very mild brain damage, "not enough to worry about". HUH? I told her about it too but she still didn't get my records so this is her last chance.
I am majorly depressed about all this but do not have a very understanding husband. I have never been blessed with good health and he says he's tired of me being sick all the time and the money it's cost us. I half expect him to walk out the door after 42 years of marriage. So,I try to put on an act that I'm feeling well when I really feel awful. I also had to have a root canal and the tooth cracked and I had to have IT extracted. I have been in major pain from this all week. I was hoping this was causing the headaches and sinus pain because the tooth was under my right sinus but I have seen no change yet. Yet another reason for my husband to not speak to me.
I know no one can help me but it sure helps to get this out. Thanks for listening.
Posted 10/11/2011 4:20 PM (GMT 0)
wow Janie!I sure feel for you.poor thing.I have sinus problems too,and major headaches.My right eye feels like its guun pop and the vein above it on the corner of my head sticks out like a worm.Only does it when I have the headeaches,maybe high blood pressure?I dunno.I have a netti pot,but the last time I used it it burnt my nasal cavities soooo bad I wanted to cry.I have flonase but I know so many people who really cant get off it,as the infection just reurns shortly after youre done it.I dunno the answer but sinus hurts are the worst!
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