Dr. Appt Today

[pberggren1]

What exactly does secondary infection mean. Does it mean an infection due to my immune system being supressed by Cellcept?

[elephant]

Phil that is correct. How long have you been on antibiotics? I would do a daily log starting today on how you are feeling when taking these antibiotics and see if there is improvement. This could also be Wegeners in disguise. So glad you got your email.

[pberggren1]

Hi Elephant:

Thanks for the reply. I have been taking regular strength Bactrim every day since January and before that I was taking it every other day since about January of 2009 and before that I was taking it every day since November 2007.

I think it may be Wegs in disguise as well.

I can't link taking the Bactrim to how I am feeling.

I was on Avelox (Moxifloxacin) for 2 weeks in May and before that I was on Cefuroxime for 2 weeks. I took Avelox for 2 weeks in January and Cefuroxime for 2 weeks in October of last year.

[Sangye]

A secondary infection means an infection in addition to another. It can happen because of the treatment or because your immune system is compromised. For example, if they're treating you with antibiotics for a bacterial infection, you could also get a fungal infection on top of it.

Dr Hoffman's note seems to be saying he thinks it isn't Wegs and before they use something like rtx, they'd have to do a biopsy to prove that it is indeed Wegs and not just infection.

They have to rule out infection since it would be very dangerous to use rtx if you had an infection. Looking at your symptoms declining for the past 7 months, it sure looks like Wegs to me, but I don't think it's possible for anyone to know without a biopsy. I'm glad your doc got a hold of Dr Hoffman and I'm really glad she gave you his exact answer.

[Col 23]

Thinking of you Phil and hope they can sort this one out quickly.
cheers Col 23

[DEE]

take care PHIL Hope its sotred soon DEEx

[pberggren1]

I saw my Pulmo first on Wednesday.

I told him about Dr. Hoffman and my symptoms.

He got a copy of the CT scan for me and showed me on his computer as well. The CT showed larger and more nodules in my lungs from the CT a year earlier.

He agreed that a sinus biopsy should be done as well as a culture of the sinuses.

I then went to see my Rheumy. One of the first things she said is that I look too good to be having a flare.

She got a hold of an ENT, not my regular one, that was willing to do a biopsy of my sinuses after he got out of the OR for the day.

I then saw that ENT, Dr. Peter Spafford. He seemed a little abrupt and rushed. He said it was a hectic day in the OR.

He looked in my nose and said he didn't see any granulomas but would do the biopsy anyway. He also said that a culture was useless and would just show what would normally be growing in my sinuses anyway. He did the biopsy. I thought I would hurt or bleed a lot afterwards. Very little bleeding and just a little pain now and then. He also asked me what antibiotics I have been on lately. I told him 2 weeks of Cefuroxime followed by 2 weeks of Avelox. He asked me if I showed any improvement while on these 2. I said a little bit. He said it is most likely infection then and to make sure I irrigate my sinuses regularly and then sent me on my way.

So now we are waiting for the biopsy. My Rheumy said we wouldn't know the results until Monday at he earliest and that she would send samples away to clinics that specialise in WG.

I have a feeling that the samples will come back negative of WG.

Then I guess it will be to try some other antibiotic or a biopsy of my lungs.

I will post a copy of my CT report a little later.

Thanks again everyone.

[jola57]

I don't know if that is good or bad news if they don't find granulomas in your sinuses. At least you would know what it is. i am seeing my ENT on 10th for my yearly checkup. I wander if my sinuses are better or worse. I will have my audio test so I can compare with last year's. It feels like its a bit better. Phil, when I was small I remember having these quartz lamps about my nose, I asked my Mom about it and she said that in Poland in the 60's it was popular to send kids and adults that had sinusitis for quartz treatments. I don't remember how many I've had but they worked and I have not had a problem since. Maybe you need a trip to Poland?

[pberggren1]

That's very interesting Jolanta. Could you tell me more details about it?

Here is my CT report:

REASON: wegners? sinusitis
　
　
RESULT:
CT CHEST, CT SINUSES
HISTORY: Wegener's Granulomatosis.
TECHNIQUE: Contrast-enhanced axial imaging of the chest as well as imaging of the sinuses was performed.
20 minutes upon completion of the examination, the patient returned to the x-ray department with itchiness and hives around the face. No bleeding complications were present. The patient was sent to the ER for observation. The patient has had previous contrast without allergy however certainly these were classic hives and this was suggestive of an acquired contrast allergy. If contrast is considered in the future, the patient will need steroid prophylaxis.
FINDINGS:
CT CHEST
Comparison made to previous study of June 10, 2009.
No appreciable mediastinal or hilar lymphadenopathy is seen, and no pleural or pericadial effusion is identified.
On evaluation of the lung parenchyma, there are findings of pulmonary nodules with cavitation within both lungs. Many of these lesions do show central cavitation. The largest lesion is seen in the left lower lobe which is a cavitation lesion and measures 2.7 x 2.9 cm in size. This is markedly progessed from the previous study where it measured 1.5 x 1.8 cm in size. There are also new lesions, with a lesion in the lingula which was not present on the previous study measuring 1.7 x 1.3 cm in size. A new cavitation lesion is seen in the right middle lobe measuring 3.0 x 1.7 cm in size. There is a new cavitating lesion in the upper left lobe in the lingula measuring 1.6 cm in size. Multiple other nodules which were present on the previous study have enlarged slightly. There are also right-sided pulmonary nodules which are relatively stable. These findings are consistent with WG with new lesions with increased areas of cavitation.
On evaluation of the superior aspect of the abdomen, no pulmonary mass lesions are seen. There is lobulation of the spleen which is unchanged from the previous study. The adrenal glands are unremarkable.
CT PARANASAL SINUSES
As seen on the previous study, there is complete opacification of the left maxillary sinus with bony sclerosis and destruction. Mucosal thickening is also seen in the superior aspect of the right maxillary sinus as well as the ethmoidal air cells. The spenoid sinus is relatively clear with mild opacification at the left side. There is destruction of the nasal bone on the left which is unchanged from the previous study. As well, the anterior aspect of the nasal septum is destroyed and these findings are consistent with WG. Opacification of the left side of the frontal sinus is relatively clear. There has been mild progression in the right maxillary sinus when compared to the previous study of June 10, 2009 however apart from this the findings in the sinuses are relatively stable.
I do not see the middle on inferior turbinate on the left and these have been either destroyed or surgically resected.
IMPRESSION:
Progression of the cavitating nodules in the lungs. There is also diffuse sinus disease with bony destruction. These findings are consistent with WG.


This is mostly Greek to me so any input is greatly appreciated.

I see my regular ENT on June 10 so I will get his opinion as well and maybe get him to scope me as well.

My Pulmo also said that a boncoscopy wouldn't be a bad idea either. I think he is going to arrange this.

I have also asked my Rheumy in an e-mail if she thinks I should quit the Alendronate and get my Cellcept blood plasma levels checked to see how much is being aborbed.

I will also get my local GP to give me a requisition for a 24 hour urine and glucose levels.

Thanks again all.

[jola57]

Ok Phil here it goes in laymens terms as much as I know. mediastinal and hilar lymphadenopathy enlarged lymph nodes are in cavity in between the lungs where blood vessels and nerves are. Granulomatosis can cause the enlargement. Effects like in TB. So good news you don't have it.
Lung parenchyma - stuff that lungs are made of. You have cavitating nodules/lesions. From what I understand the lesions cave in on themselves producing cavities - empty spaces in the lungs. It seems your cavities have grown. Wegs can do that but also infection. Sinuses have not worsened since last time.
Bronchoscopy is good to rule out infection or other reasons for the bigger cavitation in lungs.
Hope this helps a bit.