My father is diagnosed with wegner Granulomatosis_with_polyangiitis 2 months ago. Please update me

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He is given not only steroids for the treatment but also chemo

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    Hi. Was diagnosed in January this year and have just come to the end of my chemo and onto tablets. For me the chemo started to control the illness but the tablets are taking a while to work. I've still got my hair but a lot has fallen out. I know we all react differently and have varying responses. I wish your dad the very best of luck.

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  • Posted

    That is normal for WG. They start you out on high dose of steroids at the beginning. And then if your blood work shows you are doing good they taper you off of the steroids little by little. The chemo that you're talking about. The doctor has me taking 5 pills every week on Saturday. Is that pretty much what you're talking about with your dad.

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    Hello Neha,how is ur father?hope he is responding well to the treatment.I m also a patient of wegners granulomatosis since 6 years.but last year my condition became serious so I was given the treatment of rituximab n it was very much helpful now I m leading a normal life on steroids.u don't worry everything ll be better.

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  • Posted

    Hi Neha,

    I hope to offer you insight which seems to be what you seek. Please note that the information will seem bleak, but I need to be as accurate about what to expect. Thank you.

    Unfortunately, your father is going through hell right now. Please note that without oxygen, you have nothing. You're not just weak, your body is not operating and some parts have deteriorated after lack of oxygen. Yes, bits of you dies off and just won't work the optimal way they should. The joint pain being alleviated is relative to how bad they were attacked prior to diagnosis/medications. Only one bonus here - joint pain increasing is a sign of having a cold which is hard to detect while on high levels of steroids (e.g. prednisone) due to the medication suppressing the immune system's humoral response (i.e. mucous production, sneezing)

    As for the medications, at first, Prednisone (ie the steroid med given) will seem like it gives him memory issues called cognitive fatigue which might be treated as minor in whole picture. So, one can look past this memory issue until one notices that even the low doses keep you from being able to readily recall at times. This is when your father might "panic" for lack of a better word (Note: I have no other word to explain how this feels because this happened to me and I don't know how to figure past this memory deficit; I cannot stop the medication; and I do not know if stopping the meds will help my memory now). Please note that cognitive fatigue is like trying to cram and studying for an exam all night and you don't sleep well enough to take an exam that requires creativity. So, your word choices are mundane, easily recalled words and you feel like you can get by on few words (high dosage 80mg/day and 40mg/day) then you'll regain some ability to talk more but retaining was said is still an effort filled process (lower dosage 20mg/day). Since I'm a visual person, cognitive fatigue impacts me a lot so for me it feels like I cannot recall better words but can recall mundane ones (e.g. I will think of breakfast and say either bread or bun but I can't recall the word I want like baguette or croissant until much later if on lower doses). I gave up school after taking Prednisone and becoming this plain stupid. Prior to the medications, I was in Pre-Pharmacy and could study half a textbook in a 2-3 days etc. I rather take the medications to live. 

    Do not force recovery and take your time healing: Your father might feel that he is the the provider and wants to get back into the work force, but do inform him how stress kills. Note: I had a landlord who wouldn't believe that I was sick and even had the audacity to claim that I must have a better version of this disorder. Yet, the doctor stated that I had less than a year left to live at that time. Nonetheless, this cruel landlord made me wake up all hours of the night to be her live-in care aid. This stress (via lack of sleep and moving about when I should rest as I could barely breathe) caused shingles for a second time.

    Regarding weight gain:  it'll slow down with lower dosages. I have to minimize my meals but I also have a low budget. So, I'm maintaining my weight now. 

    Regarding Hair Loss: It's just gone if you don't take folic acid. With Folic acid, it slowed down, but gaps are now quite visible whereas before I had hair for 3 people's heads which is probably why I got by this long with enough hair after not taking folic acid for almost 2 yrs. Fortunately, as a male, your father has other hairstyle options but females cannot go bald sad

    Colds/Other Stressors: You will feel like you can't breathe even more so and quickly realize that you're not okay all over again after getting used to symptoms limiting you. Other stressors can be hidden like when i had a wisdom tooth extracted, my mouth wouldn't open so I lacked food (lost 14 lbs in 3 weeks). Then, got weird symptoms like hearing loss advancing from before; pink eyes (conjuctivitis) and soreness of the roof of the mouth. Looked these up and sure enough - Wegener's flare up. So, I took a high dose myself and within 20 min, my mouth opened (ie. inability to open mouth was partially due to jaw pain from extraction spot and due to the soreness of the roof of the mouth created by Wegener's).

    Hearing: Yes hearing loss is real and now I have masses inside the both ears Still, I can hear well now but was informed by specialist that any further progression will land me in a hospital. Specialist suggested (from my condition level) to plug my nose/close my mouth and try to blow air out through my nose in order to open the ears. 

    I hope this insight helps and there's a cure. 


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