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Thread: GPA with right sided pseudo tumour ,leptomeningeal thickening,peripheral neuropathy.

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    Default GPA with right sided pseudo tumour ,leptomeningeal thickening,peripheral neuropathy.

    Hello to all from 57 years young GPA victim.
    story started 2 1/2 years ago on vacation to Spain for intended 2 months.Fter 5 days hospitalised with severe ear/headache and right eye closed and swollen.Intravenous steroids brought vision back and following morning ears punctured to lease poison with grommets fitted.10 days later after mri and ct scans admitted to Granada neurology hospital ,further medication 100 mg a day prednisone and lumber test to get me fit to fly home.
    6 months later diagnosed with GPA,,tried 7 infusions of cyclophosphemide with no success and transferred to Rhitixumab.
    I have now slowly lost my vision due to high steroid damage and the pseudo tumour along with lung function deterioration and what appears to be the normal side effects of both the disease and meds.
    I was wondering if anybody else has the same side condition of the pseudo tumour and vision problems.
    would like to hear from anybody that can give any input.
    cheers Gary

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    Default Re: GPA with right sided pseudo tumour ,leptomeningeal thickening,peripheral neuropat

    @Gary L

    I don’t have the symptoms you describe. Hope yours subside soon.

    Where are you being treated? Several people on here goto Addenbrooke’s and see Dr Jayne there. They all seem to be doing pretty well.
    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: GPA with right sided pseudo tumour ,leptomeningeal thickening,peripheral neuropat

    Hi Pete,
    Thanks for input.
    I am lucky enough to be under the Rheumatology Hospital at Royal United Bath.
    A purpose built new wing to the main hospital with a team very familiar with GPA and other
    autoimmune diseases.
    It seems my condition is quiet rare even amongst our already rare group,hence the reason to try and find
    people with like for like symptoms.
    cheers Gary

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    Default Re: GPA with right sided pseudo tumour ,leptomeningeal thickening,peripheral neuropat

    Gary: what was the basis for your GPA diagnosis (ANCA-C, PR3, Biopsy)? Did any of the medications help your lungs? Do you have kidney involvement? What are your inflammation numbers like now? Any chance the tumor can be removed?

    I hate to hit you with a ton of questions but in these unique cases, knowing as much as possible really helps.

    With regards to your vision, how is your optic nerve looking? Have you had Spine/Brain MRI to rule out other Auto-Immune issues. I did see I'm guessing they checked your lumbar fluid for MS.

    Best of luck to you sir. I know you are happy with your doctors but from the outside you are not getting the results needed from your treatment. If I was in your shoes I'd pursue alternatives (if possible, I don't know UK health). Very rare that CTX and RTX can't battle this disease. So sorry for you.

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    Default Re: GPA with right sided pseudo tumour ,leptomeningeal thickening,peripheral neuropat

    Morning Richard
    They diagnosed from both anca and pr3 .No kidney involvement yet and the lungs have only started to be an issue these last 4 months.
    I am waiting for an echocardiogram to determine any link with the breathing Issues.
    My an a levels have come right down ,the pseudo tumour is not like an ordinary tumour in the sense it is inflammation of the tissues and fluid but not actually a growth.It mimics all the symptoms of a tumour which is good in one way but not in the other as it’s hard to treat.
    ive had both mri,lumbar and at present my ophthalmologist opinion is the extended high level of prednisone 80mg a day for 18 months along with the pressure from the pseudo tumour has damaged the lenses.The optic nerve is holding up.
    Unfortunately ,all the different symptoms at diagnosis caused confusion and I’ve learnt there’s no real common Ground between patients, plus the fact it’s not widely common.
    Thanks for your input ,I hope I’ve provided enough details ,but still new to discussing this in the open.
    cheers Gary

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    Default Re: GPA with right sided pseudo tumour ,leptomeningeal thickening,peripheral neuropat

    Make sure to ask your doctor to treat the side effects (such as bone loss) caused by long-term, high dose usage of prednisone.
    I'm not sure that 80mg/day for 18 months is within treatment protocol. You may want to get a second opinion.

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    Default Re: GPA with right sided pseudo tumour ,leptomeningeal thickening,peripheral neuropat

    I'm with seied on your prednisone usage. It seems a bit excessive. I would think with the trouble you are having you'd be a good candidate for the plasma exchange therapy, bring that up with your doctor.

    I too was diagnosed with ANCA-C, PR3, and classic symptoms, and lungs were my most noticeable presentation. I responded VERY WELL to the Prednisone. I started at 80MG: myself. I've never heard of anyone starting at 100MG a day.

    I truly feel for you Gary. I hope you find the magical treatment that works. So many of us have lost so much to this disease. You have had a rough go.
    Last edited by richard052018; 08-18-2020 at 01:06 AM.

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    Default Re: GPA with right sided pseudo tumour ,leptomeningeal thickening,peripheral neuropat

    Hi, Gary, I just wanted to say welcome to the forum, haven't been on here much lately and just noticed your posts and the replies. I started out in 2008 with a severe ear infection in both ears, and my dx was unfortunately delayed until 2011, as I was treated for allergies and recurring sinus infections until it went into my lungs. So my similarities to your case ended pretty much with the initial big ear infection. Cyclophosphamide helped quickly with the lung involvement that got me into the hospital and dxed. I have never been on Rituxin, am currently on methotrexate and a small amount of prednisone. I was initially on 50mg. of pred and quickly tapered down over a couple months to around 20-30mg., where I stayed for awhile. I agree with others that you are on a very high dose of pred for a long time. I have heard of maybe one or two others who took that much over some months. it would be very hard on me with my small bones and hereditary osteoporosis. But every case is different and I don't know enough about yours to argue against what your docs are doing. Just wanted to say you have come to the right place, as there are many knowledgeable people on here, and with unusual symptoms as you have, it is always an interesting challenge to help solve the puzzle of your particular case. Of course it would be better if you didn't have a reason to be here, and I'm hoping for some answers to some of your questions. Keep us posted!
    Anne, dx'ed April 2011

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    Default Re: GPA with right sided pseudo tumour ,leptomeningeal thickening,peripheral neuropat

    Welcome to the forum, Gary. I think you must get second opinion from the best experts possible.

    I live in Israel but my WG dr. Consults with prof. Jayne in Addenbrook. I tag @Geoff and @freakyschizogirl who are his patients. I tag also @gilders who might be able to help.

    When my wg flared in my eyes I was lucky to find an eye dr. In the near city who just came back from UK after working for years in London in an eye hospital at it's vasculitis unit. So you might try this one too.

    Sending you prayers. Please update us.
    Last edited by Alysia; 08-19-2020 at 10:30 PM.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Default Re: GPA with right sided pseudo tumour ,leptomeningeal thickening,peripheral neuropat

    Hi Gary

    Being tagged by Alysia I feel duty bound to reply .
    I am under Addenbrookes and would say easily that Dr Jayne is the top bloke to see or have your doctor's consult with, especially with your rarer complications.
    I do not share your symptoms but I will agree with a few others that 100mg a day of pred seems very excessive and you don't want to risk further damage unnecessarily.
    I first went to Addenbrookes as my local rheumatologists didn't have a clue how to treat auto immune disease like this but they like to take a punt at it and I wasnt confident they were prescribing the right medications for me.

    Give Stella a call at Addenbrookes on 01223 217259 - she is the best nurse you will ever speak too.

    If you need to know anything re Addenbrookes please don't hesitate to send me a private message.

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