User Tag List

Likes Likes:  0
Page 1 of 2 12 LastLast
Results 1 to 10 of 19

Thread: Hello - Another one from South Africa

  1. #1
    Join Date
    Nov 2013
    Location
    South Africa
    Posts
    14
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Hello - Another one from South Africa

    Hi all, My name is Marius and I'm from a smallish city called Witbank in South Africa. My story started about 16 months ago when I started having all kind of muscle ache's and pains. At first I thought it was just lack of exercise as I just started to do vigorous gardening, but soon realized it must be something else as the pains were coming and going - unrelated to when I was gardening.

    Went to the doc, and was given regular ant-informatory meds, but to no avail. Pains kept coming and going. Then about the same time I started having sinus issues which was strange to me as I never suffered from sinus issues really, that being strange as our town is known for the filthy air. I was confused as I thought I now am suffering from 2 different angles and at first told my doc. that we can leave the sinus issue for now and just concentrate on the muscle pains as these were having a more profound impact on my daily life then.

    In any case, to make a long story short, after many visits and blood tests etc to the doc. I landed up at a Rheumatologist with a diagnoses of Rheumatoid Arthritis. Soon after that my sinuses were acting up so badly (heavy headaches and bloody discharge from nose) that I went to a ENT doc and he said right away that something's wrong up there as my sinuses looked like a "war-zone". He took biopsies and confirmed the diagnoses of WG.

    That was the beginning of October 2013. I am now seeing this same ENT specialist, still the same Rheumatologist and an Internist Specialist. They say that other than my nose, no other organs seems to be affected currently and therefore did not give me the Cyclo- or Retoxi- (sorry, do not know the correct names) medication. I am currently on Methotrexate 25mg /week, Prednisone 30mg/day (tappered from 40mg a week ago) and Azapress 100mg/day. Also Folic acid, Vimovo and Calciferol.

    I am currently feeling great except for my nose as I feel there is still something going on there but at least I am without any pain and can do most of my work without much difficulty. My eyes are still a bit light sensitive, but much better than before diagnoses. I am seeing the ENT doc again next week and hope he can do something for my nose.

    Sorry for the long letter, but as I see in most cases the road to correct diagnoses can be long and troublesome. I am just glad that I am at this stage still doing fairly good and hope it does not go down from hereon.

    Regards
    Marius

  2. #2
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,176
    Post Thanks / Like
    Mentioned
    12 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hello Marius,

    Welcome to the forum. Hope you get some relief soon. You're actually on two immunosuppressants with methotrexate and azapress (aka immuran). Keep tracking your symptoms and talking with your docs. I hope that either your rheumy or ENT has good experience treating this disease. You may also want to check the Vasculitis Foundation's website for a list of experts your doc could consult with.

    Feel free to ask questions, share experiences, or just vent your frustrations here. Somebody will reply to you with an appropriate response fairly quickly.

    Good luck and better health.
    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

  3. #3
    Join Date
    Oct 2011
    Location
    near Phx, AZ
    Posts
    1,770
    Post Thanks / Like
    Mentioned
    3 Post(s)
    Tagged
    0 Thread(s)

    Default

    Welcome Marius, and congrats on getting it under control right away. I have a similar case except my lungs went wonky for a while. I've never been on anything but pred and mtx for just over 2 years. The mtx has done its job well. Best to you, and ask any and all questions you may have as this progresses.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  4. #4
    Join Date
    Dec 2010
    Location
    Melbourne, Australia
    Posts
    2,709
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Marius and welcome.

    You symptoms sound very similar to mine, and many others of us on here.

    I'm glad that your ENT was on the ball. Mine was also quick to pick it up - it just took me more than twelve months to find him.

    Are you using any sinus rinses for your nose? These do help with the infections, the congestion and also the crusting.

    Take care and I hope things settle down for you
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

  5. #5
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,932
    Post Thanks / Like
    Mentioned
    12 Post(s)
    Tagged
    0 Thread(s)

    Default

    Welcome, Marius, and I am glad that you are getting things under control with some basic meds and not having to use the big stuff like CTX or RTX at this point. I hope things continue to improve. Your story does sound familiar. I hope you will continue to log onto the forum and ask questions, share experiences, vent, and join in discussions. It is an indispensable daily resource and support system for many of us, as well as a place to make friends.
    Anne, dx'ed April 2011

  6. #6
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,060
    Post Thanks / Like
    Mentioned
    26 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Marius,
    welcome to the forum
    It seems that you have relatively good docs, who knew what to look for.
    I wonder about taking both MTX and Imuran. anyone here knows about it ? is it possible ?
    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.

  7. #7
    Join Date
    Feb 2013
    Location
    Columbus, Ohio
    Posts
    308
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    Welcome to the form. I, too, am glad you don't need the big guns (Cytoxan or Rituxan) and should be able to get things under control with MTX and prednisone. There is so much information on here and you can always ask questions and get a response and support. I hope things continue to improve for you.

    Having an experienced doctor makes all the difference. Here is the list of doctors with experience treating WG that Pete mentioned: VF Medical Consultants
    Nothing can break you; you are much stronger than you think... look at what you've already survived.

  8. #8
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,932
    Post Thanks / Like
    Mentioned
    12 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by rebekah View Post
    Welcome to the form. I, too, am glad you don't need the big guns (Cytoxan or Rituxan) and should be able to get things under control with MTX and prednisone. There is so much information on here and you can always ask questions and get a response and support. I hope things continue to improve for you.

    Having an experienced doctor makes all the difference. Here is the list of doctors with experience treating WG that Pete mentioned: VF Medical Consultants
    Thanks for posting that link, Rebekah, and here is another one that I found on the site, a list of New Specialists, who are considered to be "up and coming" vasculitis experts in various places in the US and around the world. New Specialists This page goes into a lot of detail about these docs and has statements from them which are interesting to read. These links can be hard to find on the VF site for people unfamiliar with it, and there is also a Find a Doctor button which might mislead people because it goes to the College of Rheumatology site and lists a few docs who may be good rheumies but not necessarily vasculitis specialists. At least that's what I found when searching for local docs. So it is nice to have the first two links saved somewhere for easy access.
    Last edited by annekat; 11-12-2013 at 04:27 AM.
    Anne, dx'ed April 2011

  9. #9
    Join Date
    Nov 2013
    Posts
    14
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi, I am new to this site, having trouble figuring out how to post! Help please!

  10. #10
    Join Date
    Feb 2013
    Location
    Columbus, Ohio
    Posts
    308
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    sectech1, welcome to to forum. If you click on one of the topics such as "New Member Introductions" you should see a blue button on the left side of the page (under the yellow notes) that says "Post New Thread." If you click that you can create your post.
    Nothing can break you; you are much stronger than you think... look at what you've already survived.

Page 1 of 2 12 LastLast

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •