Daughter here trying not to drop her basket

[MikeG-2012]

Hi Mike, I use the NeilMed bottle too, have for years, but I was wondering how much damage your sinuses have? Like, do you still have a septum? Do u have lots of crusting and have to really clean your nose a lot? You may have posted this info before, but I haven't seen it, and was wondering. My sinuses are the main target of this dz.

The lining of my right sinus is completely destroyed. My most recent flare was all sinus, nothing else. My migraine headaches were from my sinuses, which my ENT described as "looking like a kids scraped knee when he fell off his bike." I do have a perforation in my septum, small, but there. My left side isn't as bad as the right but the lining is still damaged. Both are slowly starting to recover, but still take a good cleaning by the ENT every two weeks to keep the crusts under control.

I've moved form the bottles to a Waterpik and run 3 liters of saline through my sinuses twice a day with it. That is the single best thing I've done in the past two years is running the oodles of saline through. ENT can't believe that I have kept that rinsing regiment.

[LindseyRN]

Ugh...so my Dad's rheumatologist appointment yesterday didn't go as well as we had hoped. She was not happy that the ENT did not do a sinus biopsy. She said she had talked to the ENT prior to my Dad's appointment, told him that the sinus CT showed sinus wall thinning and inflammation, and she wanted a biopsy to possibly confirm Wegener's. She read aloud the ENT's office note that basically said: patient's oral lesions have cleared, there is still some inflammation in left nasal passage, overall patient presents a good deal better than last visit, recommend continuation with pulmonary nodule evaluation, do not see a need for sinus biopsy at this time. I could hear the anger in her voice as she read this and she said he would certainly be receiving a call from her.


The rheumatologist went on to talk about how neither of my Dad's CTs mentioned having granulomas present in the reports and she would like to have a more solid foundation for Dad's Wegener's diagnosis before she blasts him with Rituxan. She said he could have a chronic allergy sinusitis that she does not want to treat with potentially harmful medications and needs a sinus biopsy. She also said since my Dad is feeling a lot better (his words, by the way) she does not feel the need to rush and if she did, she would be admitting him to the hospital to watch him closely. Without vital organ involvement, she thinks this would be unnecessary.


His rheumatologist also talked about Dad's lung nodule that is a priority right now. She said (as the pulmonologist also told us) that it does not look like Wegener's, because it is a solitary pulmonary nodule and with Wegener's lung nodules are present as multiple and bilateral. She does not want to start Dad on Rituxan that could interfere with his lung treatment if the nodule is a malignancy.


So what little progress we did make...


She is keeping Dad on prednisone 20mg daily and started him on Methotrexate 2.5mg and he is to take four tablets once a week. She said it takes about 6-8 weeks to build up levels and begin taking effect, but she feels this is the safest path to take right now until we get more information regarding Dad's sinuses and, more importantly, his lung nodule. She also (per our request) prescribed an SSRI to hopefully help with how emotional he has been. Although she is NOT warm and fuzzy, I could tell in her eyes she was frustrated FOR my Dad (and maybe even apologetic? I don't know...). She even made an attempt to get his PET scan results during the visit, so she could at least go on something for him, but the office had closed at noon.


Big sigh...


So that is where we are. We will all be going with Dad to his pulmonologist appointment on Monday to get his PET scan results and plan the next steps for him regarding his lung nodule. I am so dreading this appointment. I feel like this far it has been nothing but uncertainty and bad news. I prayed yesterday for us to hear something good—anything positive at all—but it didn't happen. At least we were able to go and have big barbecue lunch after. Barbecue always makes him smile.


Thank you all again for continuing to "listen."

[annekat]

The ENT sounds arrogant and difficult. It would not be that hard to just do a sinus biopsy. Mine was done on the spot and didn't take long. We know they are not always conclusive, but you need to get a dx. Mine WAS conclusive. It is easier than a lung biopsy. The lessening of inflammation in the nose could be because of the pred your dad has been taking. I don't think it means he doesn't have Wegs. I hope your rheumy can get him to do it or find another ENT who will. Just my two cents worth.

[LindseyRN]

The ENT sounds arrogant and difficult. It would not be that hard to just do a sinus biopsy. Mine was done on the spot and didn't take long. We know they are not always conclusive, but you need to get a dx. Mine WAS conclusive. It is easier than a lung biopsy. The lessening of inflammation in the nose could be because of the pred your dad has been taking. I don't think it means he doesn't have Wegs. I hope your rheumy can get him to do it or find another ENT who will. Just my two cents worth.

We agree and this is the plan. I have a good feeling his rheumatologist will make it happen.

[Alysia]

[A solitary lung lesion in Wegener's granulomatosis... [Ryumachi. 2003] - PubMed - NCBI

[LindseyRN]

[A solitary lung lesion in Wegener's granulomatosis... [Ryumachi. 2003] - PubMed - NCBI

Thank you you for this! I will take (and hold on tightly to) all the hope I can get my eyes on right now.

[pberggren1]

Seeing as the Rhuemy put your dad on MTX it sounds like she is fairly certain he has Wegs.

[LindseyRN]

Seeing as the Rhuemy put your dad on MTX it sounds like she is fairly certain he has Wegs.

In all honesty, I think she is still floundering a little. I think she looks into my eyes and sees sort of a desperation to get him feeling better. Yesterday she even said the reason she prescribed the prednisone and antibiotic during his last visit is because she saw how upsetting my Dad's condition was to my sister and me and wanted to start at least minimal treatment even if we don't have a positive biopsy of the sinuses or lung. I have a feeling her prescribing the MTX is for the same reason: it's generally safe and will pacify us until she can confidently make a WG diagnosis.

That may read harsher than I intend. We really do have confidence in her ability to treat him.

[windchime]

In all honesty, I think she is still floundering a little. I think she looks into my eyes and sees sort of a desperation to get him feeling better. Yesterday she even said the reason she prescribed the prednisone and antibiotic during his last visit is because she saw how upsetting my Dad's condition was to my sister and me and wanted to start at least minimal treatment even if we don't have a positive biopsy of the sinuses or lung. I have a feeling her prescribing the MTX is for the same reason: it's generally safe and will pacify us until she can confidently make a WG diagnosis.

That may read harsher than I intend. We really do have confidence in her ability to treat him.

As my rheumy recently told me, "the issue is the tissue." They want a positive biopsy, but unfortunately that doesn't always happen. My lung nodules have always presented one a time. Current is single nodule in the upper right lung. So I don't get why they are hanging onto the bilateral nodules thing. Sorry things didn't turn out the way you wanted them to. Hopefully you will have more answers on Monday and they will be positive. Try and have a restful weekend.

[annekat]

I have heard of people going ahead with treatment even without a positive biopsy. It sounds like your rheumy is doing OK with the info she has and still intent on getting the full picture. True, if your dad turns out not to have WG, the MTX won't have hurt him. If he does have it, you should see some improvement in a few weeks, I would think.