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Thread: To everyone **PLEASE READ**

  1. #41
    Doug Guest

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    p.s. I was intrigued by the Radio 4 description: "Intelligent speech"! I switched to that instead. Note that UK television is available to citizens of UK only, though this same link will bring that in. Regardless, the radio link now is on my Favorite tab. Radio 3 will get a try later.

  2. #42
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    I understand what you are saying about being normal again. As far as preds I have been on them since the middle of Jan/09 and can't seem to get below 10 preds (50mg) per day. The minute I go down my symtoms go up. My hearing is also affected by WG's.

    I also get a sore throat and persistant cough. Another thing that has been happening is my throat sometimes feels like it goes into a quick spasm where I get a sharp pain that just catches you off guard. Does this make sense to anyone or sound familar????

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    So sorry that you have joined our group. Pred. did not affect my emotions, but it did bring back one deaf ear. Recovery is not quick, it is a slow process. You will find a new normal, not your former one. Celebrate each little victory and treat yourself kindly. Get a bone density test immediately. Pred. sucks the bone marrow out of you. It can also thicken your eyeball lense. That can be fixed with surgery. Both happened with me. But it kept me alive and hearing. Keep asking questions. No one person has all the answers. Take care, Hybrid

  4. #44
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    Hello Everyone my name is Mario and I my mother has been diagnosed with WG I have been taking care of here for the last few months and have some concern she is 68 diabetic, with high blood pressure and on dialises. I am at the hospital now with her we will be going home tommorow. She had a very wiered episode where her swolen blood cells where not getting to her brain she was unabel to talk and was completly wacked out. I am not sure what the Doc is going to give her as far as medication just yet but i am looking foward to talking to everyone and learning more about WG thanks o We are from the central valley in California the Freesno Area.

  5. #45
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    Hi Mario...
    Which hospital is your mother in? Not sure about the swollen blood cells, sounds stange. Never heard of that before. I hope the docs get her on a solid drug regime soon. The usual 'starter' drugs are Cyclophosphamide (Cytoxan) which is a fairly hard-hitting chemotherapy drug. It helps 'keep a lid' on the overactive immune system that is part and parcel of Wegener's. The second drug is usually Prednisone. This is a steroid that assists with reduction of inflammation that is also part and parcel of Wegener's. Other drugs for blood pressure etc will probably be prescribed as well. These can vary from person to person. Hope that helps a bit.
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

  6. #46
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    Hi Mario,
    I'm sorry your mom now has Wegs on top of her other conditions. What areas are affected by the Wegs and when was it diagnosed?

    I'm concerned that you're still uncertain about what drugs your mom is going to be on. Once it's diagnosed, that's usually the first discussion. Wegs treatment isn't simple or straightforward.

    Most of us will ask if you have a Wegs specialist involved. Not just a rheumatologist or a nephrologist, and not just someone who's treated Wegs before. A Wegs specialist means they've treated A LOT of Weggies-- maybe that's all they do all day. Given her age and such difficult complications, I suggest you find one immediately and get her there or get her docs to consult with them regularly.

    Please don't wait until she's discharged. You've got to hit the ground running on this one. We recently lost an elderly woman in this group-- newly diagnosed, but had been in excellent health pre-diagnosis. She was not treated by Wegs specialists and her doctors' poor choices were evident.

    Do you know about the consultant docs through the VF? We can help you get your mom to excellent care. Just ask if you need help with it, or anything else.

  7. #47
    Doug Guest

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    Mario- Welcome to the forum. I'm sorrry to hear about your mother. Both Andrew and Sangye beat me to the punch on advice. Believe me, they both know what they are talking about, and I can only emphsize what Sangye said about lining up a Wegener's granulomatosis specialist immediately. Continue to keep us informed and to ask any new questions you might have.

    Please, please be the toughest advocate you can be for your mother. Go to the internet and try to get answers to questions or questions, for that matter, to bring up with your mother's doctors. I don't know how you feel about doctors: unapproachable gods on earth, people you are comfortable talking with about your mother's health issues? I hope it's the latter.

    WG oftentimes affects the kidneys, which are already at issue because of the diabetes. On top of that, the small and medium sized blood vessels are seriously affected by WG, again a huge concern since your mother already has a disease that affects blood vessels and circulation. It's a double whammy, I'm afraid, one that I can't recall anyone mentioning yet on this forum. Then there's the triple whammy, high blood pressure, which Prednisone will make worse. This triple threat to her life means you have to keep pressure on the doctors for complete information on how she's doing (don't leave nurses out- they can be good sources of information), what they intend to do for her in terms of treatments or drugs, and to answer questions that come up.

    While this is not a forum to give medical advice, it is one with Weggies (Wegener's granulomatosis-afflicted people with both active and inactive WG) who, as you perceived, can tell you how we were treated or can suggest questions to ask doctors about given treatments (Prednisone can weaken bones; your mother, at 68, may already be at risk for osteoporosis, so a logical question of her doctors is "Are you monitoring her bone density, and how has it changed from the last time to now?" or "What are you doing to assure my mother doesn't have excessive bone demineralization?")

    We've put a lot on your already burdened back, but we are here to help you deal with that burden.

  8. #48
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    I hope your doing better Im down to 10mg from 75mg and im doing better for the most part. unfortunatly I am also flaring back up. I feel for you as I have a hard time playing with my 14mo old daughter. God bless and Happy New Year

  9. #49
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    hi to everyone,my name is michelle and its my uncle who has being dianosed, he was just dianosed yesterday but has being living with the symtoms since august. we stay in renfrewshire in scotland, my uncle is very upbeat at the moment, just glad in a way to have a name to what was wrong with him,hes just starting his treatment so my family and i will take each day as it comes. the problem no one seems to answer is will he get his hearing back as a result of wg he has went deaf almost,i would love to hear from prople that have experiences of getting there hearing back or maybe they have'nt, i would be very grateful thanks.

  10. #50
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    Hi poochy29, welcome to the group. Thank you for joining and looking for info on behalf of your uncle. I don't think anyone can say ahead of time if your uncle will get any of his hearing back or even all of it. The results range from no hearing restored all the way to full restoration.

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