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Thread: New diagnosis in Dec 2022

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    Default New diagnosis in Dec 2022

    Hello all, so glad to find this forum. I am writing on behalf of my 85 year old mother-in-law who was diagnosed with Granulomatosis GPA in December 2022. This after months of debilitating sinus problems - bloody clots, difficulties breathing and sleeping.. finally an ENT specialist did a biopsy and blood results showed Wegeners. The rheumatologist prescribed Methotrexate but Hilary was unable to handle the side effects (including severe vertigo) and stopped after 2 weeks. At the moment she is taking only piroxicam (daily) which is helping with some of the inflammation (swollen ankles, sore gums, etc). However, she is becoming increasingly frail and fatigued. We just read about Rituximab (yes waiting for specialist appointments there is plenty of time to read the internet). We are wondering if this a possible alternative to Methotrexate..? maybe in a different family so side-effects may not be as severe..? Not trying to bypass the specialists by any means, but I guess we are all a bit confused about whether these drugs treat the original condition (Wegeners) or simply the symptoms..? Very happy that this forum is available to be able to connect with people with first-hand experience. We just don't know what to expect with this disease. Best wishes and Happy New Year to you all. Marg.

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    Default Re: New diagnosis in Dec 2022

    Hi @Adelie

    Sorry to hear about your mother-in-law. Rituximab is a great drug. I get two doses a year. It allows me to lead a normal life. However, rituximab takes several weeks to become fully effective. There are other drugs used to treat GPA. They treat the disease, but in different ways.

    piroxicam is an NSAID. It will treat the inflammation, but not the disease. Many people are prescribed prednisone or other glucocorticoids (steroids) to treat inflammation. Prednisone has the side effects of increasing appetite and increasing energy. However, long-term use can cause osteoporosis or osteopenia.

    At your next appointment, ask questions about other meds, the side effects, and what to do if certain side effects appear. If the ENT doesn’t have much experience treating GPA, ask them if they will consult with a specialist or refer you to one. You may want to go to the Vasculitis Foundation website to see if there’s a specialist within reasonable distance. (I drive about 120 miles from Columbus to Cleveland to see my rheumatologist.)

    As you do on-line research, Mayo Clinic and Cleveland Clinic are the best sources in the US. Addenbrookes in the UK is also top notch.

    Good luck!!
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Default Re: New diagnosis in Dec 2022

    Many thanks for your kind words and helpful explanations Pete. Very glad to hear Rituximab is helping you to lead a normal life. That is so encouraging and hopeful. Cheers.

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    Default Re: New diagnosis in Dec 2022

    Quote Originally Posted by Adelie View Post
    Hello all, so glad to find this forum. I am writing on behalf of my 85 year old mother-in-law who was diagnosed with Granulomatosis GPA in December 2022. This after months of debilitating sinus problems - bloody clots, difficulties breathing and sleeping.. finally an ENT specialist did a biopsy and blood results showed Wegeners. The rheumatologist prescribed Methotrexate but Hilary was unable to handle the side effects (including severe vertigo) and stopped after 2 weeks. At the moment she is taking only piroxicam (daily) which is helping with some of the inflammation (swollen ankles, sore gums, etc). However, she is becoming increasingly frail and fatigued. We just read about Rituximab (yes waiting for specialist appointments there is plenty of time to read the internet). We are wondering if this a possible alternative to Methotrexate..? maybe in a different family so side-effects may not be as severe..? Not trying to bypass the specialists by any means, but I guess we are all a bit confused about whether these drugs treat the original condition (Wegeners) or simply the symptoms..? Very happy that this forum is available to be able to connect with people with first-hand experience. We just don't know what to expect with this disease. Best wishes and Happy New Year to you all. Marg.

    Hello Adelie and welcome to the forum. Just reading your post, you said the exact same things I was asking when I got here in 2011 for myself. I'm not sure what to suggest with your mother-in-law being 85 on methotrexate, however, I know the Rheumatologists have a laundry list of newer drugs that might help her. When I first started, prednisone and cyclophosphamide was all that was available to me because my disease was so far advanced to take methotrexate. I'm still in a learning phase myself even with 13 years of this under my belt but yet, still lots for me to learn. I'm wishing you all the best finding answers.

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    Default Re: New diagnosis in Dec 2022

    Hello Chadwyck, thank you very much for your response, and good wishes. We are very fortunate to have a kind, empathetic GP and a capable rheumatologist, so fingers crossed. So happy for you that you 'have 13 years of this under your belt'. Best wishes, Adelie.

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    Default Re: New diagnosis in Dec 2022

    I copied and pasted this info about how Rituximab works:
    "Normally, the immune systemcreates inflammation to protect the body from infections. But, in someconditions, a group of cells in the immune system, called B-cells, causeunnecessary inflammation which damages the body’s healthy tissue. Rituximab works by lowering the number of these B-cells, to reduce inflammation, pain, swelling and joint damage. If rituximab works for you, you’ll probably notice an improvement in your symptoms 8-16 weeks after you start treatment."

    I was diagnosed with GPA affecting my upper respiratory system in April 2015. I was treated with high dose prednisone initially and then had a 4-week course of Rituximab (once a week for 4 weeks). I was then on a low dose Methotrexate for maintenance. I stayed in remission for 7 years which I've been told is longer than average. I relapsed this past April, unfortunately this time my kidneys were involved. Because I had kidney failure, this time I was on Cytoxan and Prednisone. These did get me into remission. I began Rituximab infusions in September and will get them every 6 months. This allowed me to get off Cytoxan. For me, Rituximab has been wonderful. No side affects except low immunity. And the immunologist thinks my low immunity is largely cause by plasmapheresis treatments I received in hospital.
    So, I guess what I'm saying is that Rituximab is effective because it is a targeted treatment.
    It worked really well for me!

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    Default Re: New diagnosis in Dec 2022

    Hello Little Sister, thank you very much for that valuable feedback. While I realise everyone can have different experiences, your news is very encouraging. I'm very happy for you that Rituximab is working so well for you! Best wishes, Adelaide.

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