Wegeners with Rituxan

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Hi Guys,

I was diagnosed with Wegeners but never confirmed due to Nasal only issues in 2015. I went through some challenges and had some hearing loss and started Rituxan 2016. After Rituxan, i was on methotrexate and Prednisone and Prednisone was tapered off till April 2017. In June of 2017, i started my have nasal bleeds and my CRP and ESR went up.

July i also had a lot of ear pressure during flying and went to ENT and he relieved the pressure through Tubes. ENT also ordered a Mastoid CT to check and found nothing. Lots of drainage at this time from ear. 

I saw my RHMU and he said flare is happening. My ESR kept going up. CRP was in the 12 range.

Started another Rituxan treament September 11th and on September 15th went to ER for Pleurisy and ER doctor did a CT scan of lungs. He found lesions, but doesn't know if there is infection or is this wegeners.

Has anyone had this before where Lesions are there? Has anyone gone through Rituxan treatment with Lesions in Chest. 

I am seeing a Pulmanologist this week and he will check if i have an infection.

Thoughts and prayers for everyone to get better.

Thanks

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  • Posted

    Hi Gucci, 

    My experience is very similar to yours, I was diagnosed after a series of RTIs eventually got lung biopsy to get the diagnosis is March 2017. I had 4 doses of Rituxan in 2 doses, Prednisone is currently being tapered down while my Methotrexate dose is at 20mg weekly.

    Recently started back flying with work and using a Portable Oxygen concentrator since my lung function is at 60% and to prevent alveolar hemorrhage - so my world has changed a lot over the last year.

    I have had lesions in the lung (feb 2017) and it cleared with Rituximab treatment while still on 60mg Prednisone.

    If this is the treatment your Rheumatologist recommends it should work. I also did get an infection at some point and was placed on azithromycin 500mg for 5 days and Sulphatrim 1000mg (I think?) twice a day - really high dose. Infection cleared and I really have to learn to be more vigilant in taking the right precautions.

    All the best to you my friend and things will get better.

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  • Posted

    Hi,

    In February 2013 I had a Company Annual Medical Assessment and was found to have two (2) coin lesions they did a CT scan and eventually a biopsy and was found to be benign and a lot of scarring tissue. The DR said it looks like I had something which the body has fought back. In the June 2013 I started having paining in my feet and hands and then lesion son my elbows, I suspected PAN which is what I had 30 years ago. I went for more test and in November I was diagnosed with GPA. I had rituximab, prednisolone and Imuran.......I have since relapsed once in 2016 and currently under remission. I have also had rituximab four (4) times and find it effect in reducing your dosage of prednisone.

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  • Posted

    I had what was thought to be a mass in one of my lungs ,when it was biopsied it was found to be dead capillaries from the disease . It is how they first diagnosed me. Thoughts and prayers 
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