Search:

Type: Posts; User: me2

Page 1 of 20 1 2 3 4

Search: Search took 0.12 seconds.

  1. Thread: Donations

    by me2
    Replies
    131
    Views
    48,050

    Re: Donations

    Showing the Boss a little love. Thanks Andrew for all that you do for us.
  2. Re: How was my Health before coming down with GPA Vascular

    I don't know if there is a common thread but I was very healthy when I developed GPA 42 years ago. There are way better treatments available now so I'm thinking life expectancy and quality of life...
  3. Replies
    223
    Views
    27,628

    Re: Coronavirus and GPA

    I think it is saying this: Patients with inflammatory rheumatic diseases (IRD) may be more likely to acquire severe pneumonia due to COVID-19, according to a study published in the Journal of...
  4. Replies
    23
    Views
    2,243

    Re: New Here - Possible GPA with Nasal involvement

    If it is possible it might be good to call the ENT's office and ask to talk to the ENT's nurse and explain your situation and why you need to be seen soon. I found I'm somehow able to get...
  5. Replies
    72
    Views
    14,764

    Re: Covid vaccins and WG

    My doctor has talked to me about possibly doing immunoglobulin therapy with me at some point in the future. I'm not sure what criteria he is looking for beyond the fact that I am extremely immune...
  6. Replies
    23
    Views
    2,243

    Re: New Here - Possible GPA with Nasal involvement

    My heart goes out to you Rae. I know how it feels to be overwhelmed by serious symptoms and a lack of proper response to them. I don't know if it's an option for you but over here there is a 'new to...
  7. Replies
    11
    Views
    1,558

    Re: Possible GPA - nasal deformity

    You are a very perceptive person. Thanks I'm whacked out on high dose steroids right now and I find myself exaggerating everything and I can't help it. But better times are just around the corner...
  8. Replies
    11
    Views
    1,558

    Re: Possible GPA - nasal deformity

    Rae82 - I know I commented on the very smallest aspect of your situation and something probably of no concern -especially right now for you. It was the only part of your situation that I thought I...
  9. Replies
    11
    Views
    1,558

    Re: Possible GPA - nasal deformity

    I'm no doctor and no expert but I have seen a lot of people with saddle nose in person and this doesn't look like it. It looks more like deviated septum - which is what I myself have. It can lead to...
  10. Replies
    23
    Views
    2,243

    Re: New Here - Possible GPA with Nasal involvement

    Thanks Peter. Things are really amazing for me in the reflux department. I literally thank god almost daily that the problem is gone and I am enjoying perfect non/reflux health.
  11. Replies
    23
    Views
    2,243

    Re: New Here - Possible GPA with Nasal involvement

    Great advice Peter. I might have been one of the reflux people you are thinking of here. I had it for many many months and saw a bunch of doctors and did a bunch of tests. I had one doctor look at me...
  12. Replies
    10
    Views
    660

    Re: Ongoing Sinus Issues

    John yours is quite the story. Thanks for telling us about it and congratulations on finding your path to improved health.
  13. Replies
    10
    Views
    660

    Re: Ongoing Sinus Issues

    Even with the very best doc another opinion can be helpful sometimes. I think you are on track to eventually get this figured out and get the right treatment to put you back in good shape. You are...
  14. Replies
    10
    Views
    660

    Re: Ongoing Sinus Issues

    Well, you are in very, very good hands with Dr Villa Forte and at the top facility. I actually talked with her once at the airport after a Wegener's symposium she spoke at. I kinda felt guilty...
  15. Replies
    10
    Views
    660

    Re: Ongoing Sinus Issues

    Boy , Wegener's is tough to figure out even when it's the only thing going on. I can appreciate your complications making it even harder.
    Were you ever able to be seen in Cleveland? Did you get a...
  16. Replies
    19
    Views
    1,167

    Re: Biosimilar for rituximab

    The horse dose of steroids given with the Ruxience is keeping you awake- not fun but normal. Once it wears off you should be able to catch up on sleep. It causes me palpitations too and they should...
  17. Replies
    19
    Views
    1,167

    Re: Biosimilar for rituximab

    Very true. Before Rituxan cam along I was on Cytoxan 40 years ago. After two years I was declared in remission and then was drug free for 20 years. Because there was no internet I had no idea how...
  18. Replies
    23
    Views
    2,243

    Re: New Here - Possible GPA with Nasal involvement

    The journal is a great suggestion. It doesn't need to be elaborate either just brief notes help a lot later when memory starts to fade on how things happened.
  19. Replies
    19
    Views
    1,167

    Re: Biosimilar for rituximab

    Thanks. It helps to know what your experience its. It was hard for me to learn the patience. I had been through Cytoxan so many times I kind of had that expectation it would work soon - which Cytoxan...
  20. Replies
    9
    Views
    338

    Re: My cough, its so bad!

    Hi Anne,

    Hey, I forgot all about PDT- thanks for the reminder. I'm not much in touch with normal life these days so the reminders are good.

    Yeah, the diet and the LPR information is good to...
  21. Replies
    9
    Views
    338

    Re: My cough, its so bad!

    Hey Anne,

    I just took a look and I still have the Fast Tract book. I don't need it - can I drop it off at your house some time when I'm headed to town?

    There is a facebook group that the...
  22. Replies
    19
    Views
    1,167

    Re: Biosimilar for rituximab

    Just Google Rituxan patient assistance. It is their reimbersment program. My clinic uses Rituxan that they already have in supply for me and then Genentech sends them a replacement.
    For me it only...
  23. Replies
    19
    Views
    1,167

    Re: Biosimilar for rituximab

    That's great it went well for you. I don't know what the official idea is for when it starts to work but I can say that my OWN experience is that it takes a full month to have effect. For me , ...
  24. Replies
    19
    Views
    1,167

    Re: Biosimilar for rituximab

    Take some reading material or computer or something to keep you busy as it takes several hours. You maybe know that. Some food is good too if they don't have some there.
    Sometimes I even fall...
  25. Replies
    19
    Views
    1,167

    Re: Biosimilar for rituximab

    My insurance refused Rituxan coverage recently because I was getting it sooner than 6 months. The maker of Rituxan , Genentech, was very fast and very helpful in supplying it for free for me. I just...
Results 1 to 25 of 500
Page 1 of 20 1 2 3 4