Hi,
I switched from mtx oral to injection due to the fact that I was experiencing extreme nausea and vomitting. I was elated the first week as I experienced no side effects after the first...
Type: Posts; User: purr6
Hi,
I switched from mtx oral to injection due to the fact that I was experiencing extreme nausea and vomitting. I was elated the first week as I experienced no side effects after the first...
Hi Mitch,
I too have issues with neuropathy in my right foot. I am quite certain that it was not caused by the predisone and/or cytoxan as the numbness began just prior to diagnosis. I have had...
Thank you so very much for all of the advice. I have a call in to my doctor and am going to insist on a referral to an opthamologist. The opthamologist that I saw about a year ago said that he felt...
Thanks Jack! I also often get slight redness around the white of my eye(s) with a streak of two of redness like a small blood vessel burst, but this time it is the full white of the eye. I am not...
I don't get eye pain --it is more of a strain. I also have times, (like right now) where the entire white of my one eye turns red like a broken blood vessel. I don't know what that is all about. ...
Thanks, Jan. Sounds like and interesting read!
No, I can't say that the pain was better on the higher dose of mtx. I can, however say that the fatigue was worse. I think perhaps that was due to the very low white blood cell count. My doctor...
Thank you so much, Tim! I appreciate your response. I will try the antacid and ask about the folic acid increase as well as the injection idea. Is it a self-injection or one that must be...
Thank you. I will ask about the folic acid being taken daily at my next appointment. I was on 20 mg of methotrexate initially, but it had to be decreased because my white blood cell count was...
Yes, I am taking Folic acid, but only a dosage of 5mg once per week. My folic acid is by prescription. If I increase the dosage of the Folic acid, should that dosage be over the counter and if so,...
I will post any other information about this broadcast that I happen to get. It is exciting to see that finally there will be some attention drawn to this disease. I sometimes get frustrated when...
Hello Everyone,
Good news! Good Morning America (aired from New York) on ABC is supposed to be doing a story on various forms of vasculitis including Wegener's on September 16th. I am thrilled...
I know this may sound like a cosmetic thing, but I was wondering if anyone has severe hair loss from the Cytoxan..I am losing 3 sinkfulls of hair per day...I am lucky enough to have had very thick...
Thanks so much for the info. I am sorry to hear that you have had such a terrible time with things. I agree that it is soooo difficult to be treated properly when no one really knows much about...
Thank you Jolanta,
I will check into contacting her!
Thank you Sangye. I appreciate you sharing your knowledge on this. I will check out the VF for the doctor at Mt. Sinai. It was good to know about the alveolar hemorrhage as well as the urgency of...
Hi Doug,
I know the feeling of walking on bruises--or I guess I have sometimes thought of it as walking on pins and needles. Were you taking anything to help with the pain associated with it? I...
Hi Jolanta,
Thank you for your response! Do you happen to know the name of the doctor doing WG research in Ontario?
Sorry to hear about your foot pain and numbness. I know how difficult it is. ...
Hi Jan,
My Wegeners was diagnosed after a trip to ER coughing up blood. I also had the numb foot at that time, skin lesions, sinus issues for 9 weeks prior to that, fever, weight loss, dehydration,...
Hello Sangye,
Thank you for your response and sorry about the delay in getting back to you. I am now at 20mg daily for the rest of this week and will be at 15mg daily for two weeks beginning next...
Thanks so much, Elephant for sharing your weaning process. It wasn't confusing at all--as a matter of fact, it was the process I was expecting. Sorry about the delay in getting back to you. My...
Hi Elephant,
Thanks so much for your response! I am feeling extremely "up and down" consistent with the prednisone weaning it seems. It seems as if I don't know which end is up with the extreme...
Hello Everyone,
First of all, let me say that I am extremely appreciative of the existence of this website. I was diagnosed with Wegener's in December 2009 and have found it difficult to find...