is this a sinus flare op?

[splummer]

Hi, we are new to the site but my Wife has had W. 7 years now and this is the first time she has had problems with the sinus area. We think it is a flare up but xrays and ct scan don't really show much. Her head, mouth, nose, ears and face have been hurting for 2 weeks now and has been treated with antibiotics for a sinus infection but the pain has only gotten worse. [she also is blowing out globs of blood thru her nose. Her specialist isn't convinced it's a flare up yet since her xrays are good. She has her regular blood tests scheduled in 4 days but can barely hold on until then because of the pain. She gets a little relief from 40 mgs of predizone. We really don't know what to do at this point and I wonder if people on here can give us some information on their W. sinus flare ups.

[Pete]

Seems to be a flare to me. What is her specialist's specialty? Infections that don't respond to antibiotics suggests that wegs is flaring. I suggest contacting her doc and pushing for an immediate appointment and labs.

Good luck!

[MaxD]

I agree with Pete. This sounds serious. My wegs started in the sinuses and I vividly recall the intense pain. If it is a flare she needs treatment soon before it affects the nerves in the area. Please see a vasculitis specialist - regular ENTs rarely see Wegs patients in their entire careers and are unlikely to be up to date in their knowledge of the disease and its treatment options.

[splummer]

Thanks Pete, Her specialist is a [excuse my spelling] Rumatologist. Sinus is new to us as her last flare up 2 years ago was kidney. The ENT Doc he sent us to last week thought he saw some W. build up in her nose. I'm not sure why he is waiting so long this time.

[debra]

Just adding some frustration here. Doctors are way to quick to throw antibiotics at things! This is so wrong! Unless they cultured and found the infection, I don't like this, and I see it over and over again... If these are given like candy, which here they are, what happens when we really need them??? I will tell you, they may not work! Also hospital infections are rampant and since many of us with this will be in there at times, the infections from here will get us before the actual sickness of wegeners! Please question antibiotics in every circumstance... Since wegeners effects the nose, this doesn't surprise me, that she's in pain. Just because one area wasn't effected before, doesn't mean it won't be in the future... Man, I hate this sickness! It just bites... Good luck, on getting relief, I hate sinus stuff... Debra...

[splummer]

Max, do you know if the W. sinus treatment you had is the same as the treatment for other area's. In her case for the kidney it was predazone and 4 infusions of Rotexan. We will be calling the Specialist on Monday morning again. My wife also is concerned about it causing more damage if they don't take care of it soon.

[Middlesista]

Why does she have to wait 4 days for labs - seems the doc could order the labs other than scheduled date? They can do them at a local hospital if office closed - doctor would just have to order the tests.

[Pete]

Is your wife rinsing her sinuses? That will help clear some of the crud in there. You can get a sinus rinse squeeze bottle or a neti pot at a drugstore. They come with pre-measured saline packets. You'll also need a jug of distilled water. Hope this helps if she's not doing so already.

[splummer]

That's when the Doctor scheduled the blood tests but we'll call on Monday and try to get things moving sooner. The Doctor seemed more concerned that the 2 liver tests went up last month and had her stop the cell-cept maintenance drug. Her liver function test improved after that but the sinus pain started about 2 weeks ago and are getting worse.

[debra]

Plummer, if the doctor stopped the cellcept, then it would make sense that this would stress her system enough to trigger a flare? Just from studying here it seems any change in meds can create a flare... Going off of cellcept, or rather being taken off, would certainly be a stressor for her. Even changes in everyday stuff can do this, stress for example, so a med change like this could trigger a flare... As far as treatment for different involvement, im not sure since im under treated, but would think from reading here its irelivant were the inflammation presents, the goal is to put it down, however it also depends as you know, the condition of the liver or kidneys, since some meds need to be avoided, like youre wife being taken off... Good luck on getting in sooner... Debra...

[drz]

That might indicate the cellcept was holding the Wegs down and when it stopped things got worse. You should be able to get labs right away at several sources, local clinic, hospital, ER, or a Walk IN clinic. Any doctor can order the right tests if you tell them want to check for Weg activity now. Remember though that one's symptoms are generally a better indicator of active Wegs than any lab work.


That's when the Doctor scheduled the blood tests but we'll call on Monday and try to get things moving sooner. The Doctor seemed more concerned that the 2 liver tests went up last month and had her stop the cell-cept maintenance drug. Her liver function test improved after that but the sinus pain started about 2 weeks ago and are getting worse.

[vdub]

since im under treated
Deb, what do you mean "under treated"? I don't understand that? Aren't you seeing a doctor? What drugs are you currently on? Or in the past for that matter?

[splummer]

I want to thank every one for their help in trying to figure this out. I think people who have lived with wegeners have a better insight than even the best Doctors. After reading all your comments, I think the cel-cept was holding the sinus problem down and going off of it may have triggered a flare up 2 weeks ago. She needed to go off the cel-cept because after 2 years it was suddenly raising her liver numbers. [It's been a hard 2 weeks] but we will know what to tell the doctor Monday Morning. [That we are positive that it is a flare up.] Her last complete tests were only 10 days ago showing C-anca at 6.2, inflamation 1.4 and liver almost back to normal.

[MaxD]

Max, do you know if the W. sinus treatment you had is the same as the treatment for other area's. In her case for the kidney it was predazone and 4 infusions of Rotexan. We will be calling the Specialist on Monday morning again. My wife also is concerned about it causing more damage if they don't take care of it soon.

Yes, I had the same treatment - prednisone and 4 infusions of Rituxan. Btw, relapses are more common with sinus involvement so maintenance therapy following remission is most important.

[splummer]

Update, We got in to see the Doctor right away but had to make a few phone calls with the office explaining how urgent it was. It's 2 days later now and we are waiting for a call with the infusion appointments. [two infusions of rituxan a week apart.] My Wife has read all your comments but not feeling well enough to post. We didn't know sinus flare ups were so painful and tests and xrays don't show much. When she had her kidney flare up there was no pain and we only knew about it because of the tests.

[MikeG-2012]

Update, We got in to see the Doctor right away but had to make a few phone calls with the office explaining how urgent it was. It's 2 days later now and we are waiting for a call with the infusion appointments. [two infusions of rituxan a week apart.] My Wife has read all your comments but not feeling well enough to post. We didn't know sinus flare ups were so painful and tests and xrays don't show much. When she had her kidney flare up there was no pain and we only knew about it because of the tests.

Glad you got it worked out. Sorry I didn't chime in earlier. Sinus flare ups can be debilitating; I know first hand. At one point, I was taking three different Rx pain killers, and that wasn't helping much! Finally, my ENT went on a rampage to the Rheumy's office and low and behold, four months of agony were taken care of with my first round of Rituxan.

I owe my ENT for a multitude of saves over the years. He and I are good friends now! I think he likes me because I helped buy him a sailing trip! (-8 LOL!

I hope that things will start to improve very soon for BOTH of you!

[splummer]

MikeG, is that when you first found out about you Wegener's?

[MikeG-2012]

MikeG, is that when you first found out about you Wegener's?

No, I had a diagnosis in 2012 and most of my symptoms up to that point were Wegener's related. I do know that now!

I was treated with the standard starting protocol of Cytoxin and high-dose pred for 6 months, then went on Mychophenolate for 16 months, and then a BAD sinus flare-up, which was lungs again too. That flare-up was twice as bad as my original 2012 symptoms. This time, I'm still doing RTX treatments, and doing OK now.

Does that answer your question?

[splummer]

I'm glad your doing ok now. It seems like the sinus flare-up at least for her has been the most painful of all. Now we're waiting for Blue Cross to approve the rituxan.

[Mark76]

I'm glad your doing ok now. It seems like the sinus flare-up at least for her has been the most painful of all. Now we're waiting for Blue Cross to approve the rituxan.
Yes I too can agree with the pain. Not even highest dose of Oxycodone would touch it. In the end before wg diagnosis the only thing that helped was sitting in shower for hours on end with water on my face. Its a terrible way to live!! The first dose of 500mg prednisone and cytoxan brought instant pain relief. Its been 4 weeks after treatment with cytoxan and rutiximab and nomore pain however still have fluid in sinuses and ears which is annoying but hopefully eventually it clears. Good luck with your flare up

Sent from my SM-G900I using Tapatalk

[splummer]

we just got back from the ER for the second time in 2 days. Oxycodone also didn't help. the rituxan infusion is scheduled for Monday morning in 2 days. I hope it helps.

[BookNut]

I want to thank every one for their help in trying to figure this out. I think people who have lived with wegeners have a better insight than even the best Doctors. After reading all your comments, I think the cel-cept was holding the sinus problem down and going off of it may have triggered a flare up 2 weeks ago. She needed to go off the cel-cept because after 2 years it was suddenly raising her liver numbers. [It's been a hard 2 weeks] but we will know what to tell the doctor Monday Morning. [That we are positive that it is a flare up.] Her last complete tests were only 10 days ago showing C-anca at 6.2, inflamation 1.4 and liver almost back to normal.

I advise people with any kind of chronic condition to seek out good forum/discussion groups like this one. Wegs was ruled out in my case - but I have stayed on here because I find so much valuable help and moral support with my severe asthma and sinus issues. I can reinforce what Pete said earlier about the importance of sinus rinses. I use a NeilMed and make my own rinsing solution. I mix a cup of picking salt with 1 up of baking soda and keep the mix in a sealed container. Then I mix distilled water in a half gallon jug with about 4 teaspoons of the mixture. Every morning (and also at night when I am really bad) I put two or three drops of baby shampoo in a NeilMed bottle and fill it up with my solution. I then lean over the sink and squirt the solution into my left nostril. As soon as the nostril is full, I put my finger on the opposite nostril so that the solution stays in the left nostril. Then I snort it out...along with lots of the gunk you say your wife gets. Then I repeat with the right nostril. I have also had some success with mixing a medicine in the solution. I used Betamethasone - which comes in a capsule. The capsule can be opened and the powder poured into the solution. It eventually dried things up too much, so I am not using it right now. But - ideas to check out with your wife's doctor. And ENT might be a good doc to go to. Best of luck to you. You have come to the right place!

[MikeG-2012]

I'm glad your doing ok now. It seems like the sinus flare-up at least for her has been the most painful of all. Now we're waiting for Blue Cross to approve the rituxan.

BC will give in, especially after an internal review. They finally talked to my Rheumy, and all was better.--they do NOT want to talk to the prescribing physicians, and when they do, they get an earful!!
Be persistent if you have to! You are your only advocate, so don't give in, ever!!

As far as the sinus pain. I used a wet washcloth and a small hand sized heating pad (put the heating pad in a plastic bag) over my face. Keeps you from running the water heater out of water. Also, rinse, rinse, rinse, rinse. Did I tell you that rinsing helps. I think you should rise often. Maybe even rinse a couple times a day! Aggressive rinsing helps. (-8

[splummer]

We just got back from the Ritexan infussion and so far her pain seems much better if it keeps on. I think because ct scans and xrays didn't show any thing her R Doctor is still not convinced in a wegeners flare and has her scheduled for an MRI tomorrow.

[me2]

Don't be disappointed if the pain creeps back up. This illness and the meds used for it are a roller coaster ride. I usually feel better after an infusion and then feel worse about three days later. I think this is because a horse dose of solumedrol is given with the infusion and it makes me feel better for a little while. I hope the MRI comes up with nothing for you too.
It's funny that with most of the tests we get finding nothing is good news.

[splummer]

me2 I hoped you were wrong but this morning it seems like the pain is starting to come back. Are you getting infusions now and is it for sinus?

[me2]

I am getting infusions every six months for some time now and I have always had sinus involvement. The only thing that really helps with the pain for me is treating the root cause of the problem which it sounds like you are doing with the infusions. For me the infusions were not an immediate relief from pain and from symptoms. The good news is that they did eventually work and I credit them with how well I am doing now. I wish I had a better answer.
The suggestions above for sinus are ideas that work good for me too . Especially the rinsing that Mike mentions. I would add ice packs for really acute pain. I put some ice cubes in a plastic baggie and then run a wash cloth under hot water. Wring out the wash cloth and wrap the warm cloth around the bag of ice. When applied it feels warm at first and then gradually the ice takes over.
It sounds like the doc may diligent in ruling out other causes for the pain. It will be good news to not find something else going on but kinda not good news because it may take some time for the pain to subside with the treatment for wg.

[splummer]

any one have any thoughts on this? after 3 trips to the EM she is now in the hospital for the second day now. 3/21 On Monday she had the ritxuen and the pain in her sinus/head area is still unbearable. An MRI didn't really show anything and her R Doc hopes the predizone and R help her. The hospital Doc after another ct scan is going to have an ENT put a scope up her sinuses to check for other problems and biopsy. This is is really getting serious. Are we don't the right things?? thank you

[Pete]

It usually takes several (4-6) weeks for rituxin to take full effect, so the lack of immediate improvement is not surprising. How much prednisone is she taking, and when did she start? The sinus scope should identify what's going on. Hope she gets to feeling better soon.

[splummer]

thanks all, 60 mg of predizone and maybe for a week. I'm on my way to the Hospital now.

[BookNut]

thanks all, 60 mg of predizone and maybe for a week. I'm on my way to the Hospital now.

Is the 60 mg the total amount, or is it 60 mg several times a day? Is it by IV? Does she have any respiratory problems? I do NOT have Wegs, but I have severe sinus and asthma issues. Hospitalized many times. I was always given at least 60 several times a day, and also had iv antibiotics. CTs always showed blocked sinus and the antibiotic was to help clear up and prevent infections. I would check on that.

[splummer]

60 total per day

[MikeG-2012]

thanks all, 60 mg of predizone and maybe for a week. I'm on my way to the Hospital now.

I hope that it will help, but based upon my prior experiences, I don't think a week on that dose for that short of time will completely take care of it. I really, truly do hope that it does help, and that she won't have to go longer than that on that kind of dose.

When the ENT scopes her nose and sinuses, if it looks "angry" or "like hamburger", there is probably active disease up there. (angry and hamburger were my ENT's words)

When I had my bad sinus flare-up back in 2013, I was on 80mg of pred for three weeks, 60 for three weeks, and down every three weeks. Took about 6 months to get down to a level where I could go off completely again. It is a miserable experience being on that much steroids, but it got my sinuses back under control. All that pred was along side of the Rituxan infusions. So a dual approach; RTX treats the disease, pred helps the inflammation from the disease.

My guess is too that there is probably staph infection in her sinuses. A lot of us here have experienced the staph infections as a result of the active disease in the nose and sinuses. Have the ENT do a culture of the infection area. The lab will send back a report of what it is, and what antibiotics treat that particular strain of staph. Mine shifted twice and had to do a topical rinse antibiotic for both, because the pill form that is recommended for that strain I was sulfa based, and I was allergic to it.

With this disease, the docs have to be creative sometimes. I'm very lucky to have a very creative ENT!!!

[me2]

I think Mike makes a good point about there probably being staph infection. Some docs are not diligent enough in treating infection I think. My ENT has had me use antibiotics orally and also an iodine solution to rinse with to kill the bugs - and then rinse with a steroid called budesonide to deal with the inflammation.
Staph is known to cause Wegener's relapse.

[drz]

Sinus pain often also relates to active infection. Severe infections may require frequent sinus rinses. Often they add an antibiotic to a daily rinse to help get it under control. Those can be expensive but if in a hospital the insurance usually would cover it. Out patient coverage depends upon how good your drug coverage is in your insurance.

[MikeG-2012]

Often they add an antibiotic to a daily rinse to help get it under control. Those can be expensive but if in a hospital the insurance usually would cover it. Out patient coverage depends upon how good your drug coverage is in your insurance.

I'm glad you brought this up DrZ!! I found a work-around for insurance carriers not covering the compounded or mixed rinses. On one occasion I had an RX for Bactroban ointment that needed to go into the rinse. He prescribed enough ointment for x number of 1 liter rinse bottles, and also prescribed the sterile saline. I wind up paying out of pocket for the saline, and insurance, for the most part pays for the meds to go in it. This also gets by the "use within x weeks" clause on the rinse that the pharmacy makes. I mix it myself and get a lot longer shelf life. Also frees up fridge space, because most of the compound rinses need to be refrigerated to store them.

Just a thought/option to run by your physicians.

[splummer]

They may be thinking a fungle infection and have been giving her an IV antibiotic. keeping her in the Hospital at least until Monday when they do the scope. [she may have had a really slight improvement.

[me2]

I found an interesting article on fungal sinus infection in case that is what it is. Fungal Sinusitis (http://www.sinuses.com/fungal.htm)
Ask your doctor about the effectiveness of a betadine iodine diluted solution rinse. This is what my ENT has me use and it is effective for a broad range of infections. I hope she gets some relief soon

[splummer]

Would the Doctor use cefepime IV to treat a staph infection?

[MikeG-2012]

Would the Doctor use cefepime IV to treat a staph infection?

Not sure that is a question for the group. Might want to ask the doctors...

[splummer]

Your right not a question for the group but the 3 doctors only started talking to me today after the biopsy. Now they are saying its the worst wegeners sinus flare up they have ever seen. The antibiotics are only a precausin and the ritexaun and 60 mgs of predizone haven't been effective. Started another 500 mg of a steroid IV for 3 days .this is the 7th day in the Hospital.

[drz]

Your right not a question for the group but the 3 doctors only started talking to me today after the biopsy. Now they are saying its the worst wegeners sinus flare up they have ever seen. The antibiotics are only a precausin and the ritexaun and 60 mgs of predizone haven't been effective. Started another 500 mg of a steroid IV for 3 days .this is the 7th day in the Hospital.

Sorry to hear the Weg dog is giving you trouble now. Hope you and your docs find a way to get it back under control. Best wishes for better health. No one wants an award for having the worst case so tell the docs it's their job to help you get better soon.

[MikeG-2012]

Your right not a question for the group but the 3 doctors only started talking to me today after the biopsy. Now they are saying its the worst wegeners sinus flare up they have ever seen. The antibiotics are only a precausin and the ritexaun and 60 mgs of predizone haven't been effective. Started another 500 mg of a steroid IV for 3 days .this is the 7th day in the Hospital.

Mine was that bad too I would imagine. At one point, I was seeing him weekly for a cleaning and check-up. My ENT was surprised at the progress mine have made in the past few years. I contribute that success to he and I coming up with a regimen of meds and rinsing, and ME doing everything in my power to get the crusting under control. There were some days when I would rinse more than 10 liters of saline through my nose and sinuses!!!

Please make sure that they are culturing the bacteria in the sinuses and treating it with the proper antibiotic.

Sinus irrigating will be, and should be, a topic of conversation in your home for a while now, I think. Search the forum for WaterPik, nasal rinse, etc., and you will get a plethora of information

[splummer]

After 3 trips to the EM, 9 days in the Hospital, 2 CT scans, a MRI, several Xrays and finally a biopsy the Doctors now say its the WEGENERS and no other infections. This site and all your comments sure helped us to know what to expect. She is feeling some/a lot better now and is having the second Ritexan treatment tomorrow.

[drz]

After 3 trips to the EM, 9 days in the Hospital, 2 CT scans, a MRI, several Xrays and finally a biopsy the Doctors now say its the WEGENERS and no other infections. This site and all your comments sure helped us to know what to expect. She is feeling some/a lot better now and is having the second Ritexan treatment tomorrow.

Treatment generally helps once you have the correct diagnosis. Best wishes for quick improvement.

[splummer]

It has been about 2 weeks since the Hospital and final Ritixun treatment. I think her Wegeners is under control but says her nose is still swelled and hurts giving her head pain but at least tylonal helps now. Is it normal for the nose pain to continue this long or do we have another problem? The ENT Doc cleaned a lot of stuff out of the nose a week ago but she stopped doing the steroid rinse a few days back because she thought it made it hurt more?

[Pete]

In the immortal words of our late friend Jack; just because you have wegs doesn't mean you can't have something else. Might want to have the ENT check her sinuses again just in case she's got another infection.