Sinusitis

[miracleshappen08]

Who out there has chronic sinusitis? Today is turning out to be a very bad day! I have been doing fine and then I was outside yesterday in the cold. And now today I feel like my cheek bones are be eaten or crashed. It has been almost 6 months since I have had this pain. I thought I was making head way. But we have noticed every time I start to come down on my prednisone it gets worst.

Can anyone relate? I have already had my nose eaten through... So I have the saddle back nose. Hello, WG, there really is not a lot more to eat in there. Lol


Miracles do happen!!

[NikkiNicole]

This has been my constant complaint. I'd never ever ever had sinus issues and then suddenly, it wouldn't go away. The pain was excruciating! I couldn't touch my cheeks, and any sinus spray that was supposed to help would make me cry out in pain. It was awful. I am constantly having running noses, or dry noses and then extreme, nasty, awful pain.
It's starting up again and I am unhappy. I am currently on a 3 week taper but I am on MTX for the next two years. We'll see what happens. I've been having more trouble with my lungs too.
And don't even get my started on the neuropathy!

[MikeG-2012]

Who out there has chronic sinusitis? Today is turning out to be a very bad day! I have been doing fine and then I was outside yesterday in the cold. And now today I feel like my cheek bones are be eaten or crashed. It has been almost 6 months since I have had this pain. I thought I was making head way. But we have noticed every time I start to come down on my prednisone it gets worst.

Can anyone relate? I have already had my nose eaten through... So I have the saddle back nose. Hello, WG, there really is not a lot more to eat in there. Lol


Miracles do happen!!

Absolutely. If I didn't rinse the crud out of my nose twice a day, I would be a miserable, clogged up, sinus thumping mess! The waterpik has saved my life!

Cold weather usually opens up the sinuses and that is when stuff either runs out, or the air just plain hurts when it hits areas that haven't had that kind of air in a while.

[miracleshappen08]

Yeah I have always had sinus problems, but they are so damaged now that I can't rise them. I get hard cresting that blocks everything. I hoping to have surgery done to get stuff opened up. It hurts so bad!! I had to be put on a very strong pain med to help last time. I'm taking MTX injections right now, but I have been on MTX and Ritixumab. But like I said it always gets worse in the winter.


Miracles do happen!!

[freakyschizogirl]

Hi there

I had to reply. I've had sinusitis since June. This seems to have kick started a flare for me. I've had4/5 rounds of anti biotics and it just hasn't shifted the sinusitis. Today I am in a lot of pain.

I'll be back on the RTX soon so hoping that will help.

[miracleshappen08]

Yeah pretty much any more I only get iv antibiotics. My sinus problems are out this world says some of my doctors. I don't fellow the "normal" for this disease.
I hope you can get comfort! The only that has helped me is oxy.

[vdub]

I had it for about 2 yrs, pre dx, so all I got was a lot of antibiotics. Actually, I shouldn't say that was all I got, because I did get two reconstructive nose/sinus surgeries and a cpap. The surgeries and the cpap were big pluses.

[miracleshappen08]

I'm about to get a CPAP. The doctor said that should help a lot with my throat, chest, and nose. We will see

[freakyschizogirl]

Whats a CPAP??

[vdub]

A cpap is a breathing machine. Most people get one because they have sleep apnea, which is when your throat tries to relax and collapses when you are sleeping. For us, we get it for sinus damage and lung damage or just plain breathing problems.

I really like mine. It has really made a big difference when sleeping. Some people can't handle them for various reasons, but I had no problem taking to mine. You have a mask and a hose that fit over your nose. When you first see it, you'd think it would be difficult to sleep with, but its not. After a couple minutes of breathing on the cpap, its gets in sync with your breathing rate and then it puts positive pressure on every breath you take. Very nice.

[miracleshappen08]

I have had a bipap before being on life support and I don't like it!! It helps but it is hard to get use to at first. I hope the CPAP is easier!

[freakyschizogirl]

miracleshappen08 have you still got sinusitis?? My docs are just giving me round after round of anti biotics and it doesn't seem to be helping. Will be going on RTX again soon so wondering if that will help in any way?

[MikeG-2012]

miracleshappen08 have you still got sinusitis?? My docs are just giving me round after round of anti biotics and it doesn't seem to be helping. Will be going on RTX again soon so wondering if that will help in any way?

Has your ENT taken a culture of the infection? My hunch is that it is a form of staphylococcus aureus. If you are taking the wrong antibiotics, then it will never go away. You need to learn which exact infection it is. Blatant exposure to antibiotics that don't work, just potentially compromises their effectiveness for later use.

I've had several rinses prescribed to attack the infection where it is, in the sinus. One trick I found with the antibiotic rinses is to let the squirted solution sit in there a minute before you blow it out. Block the nostril opposite the squeeze bottle and gently fill the sinuses withe the antibiotic rinse. It worked miracles for me.

[me2]

Freaky ,
A good ENT should be able to look at your sinuses and tell
A- Do you have active WG
B- Do you have infection
C- Rule out allergies
D- As Mike said, culture any possible infection to properly match the antibiotic to the infection
E- Determine if there are structural changes, probably from WG, that mean that parts of your sinus cannot properly drain no matter what. If this is true, (like it was for me), then when you do not have active WG you would be a candidate for surgery (like me) and could find tremendous relief (like me). The structure of my sinus was so bad that no amount of antibiotics would bring me relief. Now, after surgery, my sinuses feel better than they have for many , many years. The surgery itself was not as bad as I expected either. I went home the same day and recovered quickly.

I hope whatever the case you feel better soon. I know what it is like to suffer from sinus pain.

[MikeG-2012]

The surgery itself was not as bad as I expected either. I went home the same day and recovered quickly.

I was talking to my ENT the other day and he said that with most of his patients that just have sinus work, he's not packing them up anymore after surgery. He's using a dissolvable steroid infused stent to hold the sinus passage open. Patients can start rinsing the area sooner to get all the post-surgery crud out. With patients who have septum work, he's still still packing up the nose. I thought that sounded a LOT better than the old school mentality of packing things up solid post surgery!

[me2]

Yes Mike, that was my experience. I had surgery many years ago to fix the drainage in one eye and they had to put packing in my nose. This was very miserable- although it worked.
This time I had the NEW and improved version of that eye surgery (on the other eye) and sinus surgery - all at the same time by two different surgeons. An eye guy and a sinus guy.

They did not use packing but used some kind of 'stuff' that just dissolves away I think - the thing you are reffering to? I wore a 'mustache' of bandage under my nose the first night as my nose was draining from the surgeries. After that night I didn't have to wear anything.
It really was so much more comfortable than the old way, and I'm thinking it works better to let the body do its thing to keep things clean.
I was told to rinse 10 times a day to really keep things clean. Since I am an old pro at rinsing (as I know this is one your specialties too) it was no big deal to do this.

I was miserable for years fighting sinus infections, poor drainage of WG gook, and not breathing well. This surgery has really been a joy. No more infections, I can breath well, and it is a breeze to rinse my sinuses.

[Dirty Don]

They did not use packing but used some kind of 'stuff' that just dissolves away I think

I don't think they are stents...for example: ENT did sinus surgery on me and did no packing; rather, she wrapped/covered the surgical areas with membrane from inside the sinuses. Weird? No bleeding, no packing, a little bandage below my nose for dripping, no pain, and up and at'em the next day, no problem!

[annekat]

As an aside, I remember hearing a few times that WG can "mimic" a sinus infection, including the greenish discharge, the pain and congestion, excess mucus, etc. So this could explain some of the hard to treat "infections", as they could be WG as much as anything else. My PA, who knows nothing about WG, was sure I had a sinus infection because of the purulent green stuff in my nose, but I had become familiar enough with my WG to know that it was just typical WG green stuff, which at that stage, would come out alternately with the more crusty stuff. However, I'm not minimizing the likelihood of real sinus infections with WG, given all the blockage and damage caused in the area, and having heard that many of us may be actual carriers of s. aureus, or other bugs which could sort of hang out in there and flare up from time to time. The point of all this being it may be hard to tell where WG leaves off and a sinus infection begins. A good ENT would be the best person to determine these things, for sure.