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Type: Posts; User: darl-p

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  1. Replies
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    Re: Blood Tests - what to check

    I have found that the statement made by your P/C about Rheumatologists is way off. I did not have a Rheumatologist in the team for about six years and after being in remission for for several years I...
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    Re: Gastro. Issues - Others?

    During my journey to find all the areas that the Wegeners might have affected, I was sent to a gastroenterologist. The young lady said she had never heard of Wegeners but did some research prior to...
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    We go to Mexico each year for 3+ weeks and I just...

    We go to Mexico each year for 3+ weeks and I just take my daily pill minders with a few extra days worth. Never been a problem for 9 yrs. I used to carry a typed list, I gave up on it since nobody...
  4. Thread: Imuran

    by darl-p
    Replies
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    1,424

    I have been on Imuran for more that 6 years. It...

    I have been on Imuran for more that 6 years. It was so good for me that they backed off from 75 mg to 50. All my labs were stable for several years. I was assigned to a new rheumatologist who decided...
  5. I was on 80 mg when first diagnosed for a short...

    I was on 80 mg when first diagnosed for a short time. Now I sometimes go up to 60 mg when needed for pain. I taper after 2 days of no pain. It is a miracle drug for me but I really hate what it can...
  6. Thread: Flu Vaccine

    by darl-p
    Replies
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    7,472

    During a recent hospital stay for DVT I was given...

    During a recent hospital stay for DVT I was given the high dose flu vaccine and was offered the shingles vaccine, but I had already had it. I am on 5 mg Prednisone
    and 50 mg Imuran. Neither seemed...
  7. Lilly, I was looking through some of these...

    Lilly, I was looking through some of these threads for others who might have had a problem with DVT and come across yours. I had a situation last week where my feet did not look like identical twins...
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    See my prior post (8/17/16) for background. When...

    See my prior post (8/17/16) for background. When I went to my new rheumatologist, she did a complete reevaluation of my situation and ordered multiple x-rays, bone scan and lots of blood tests. Pain...
  9. You ask “how much of a pain in the butt does one...

    You ask “how much of a pain in the butt does one have to be?”.

    I can tell you where my well being is concerned I can be a major pain in the butt. I have been dealing with this for 9 years and...
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    It is good that your Doc can appreciate the value...

    It is good that your Doc can appreciate the value of "how you feel". This seems to be the most important aspect of monitoring the disease, but the blood tests are an important factor for other...
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    They are always short handed at the 911 Center....

    They are always short handed at the 911 Center. Just saying.
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    Recently I have been having foot pain both on the...

    Recently I have been having foot pain both on the top of the foot as well as sharp tingling on the sole. Several weeks ago it got so bad that I self-medicated with a large dose of prednisone until...
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    To Nikki: I think in your prior post you...

    To Nikki:
    I think in your prior post you mentioned that you are a Kaiser patient. Yes .. OHSU has a new Vasculitis Center , BUT when I asked Kaiser to refer me there, I was told that they (Kaiser)...
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    I had a discussion with my kidney doc today and...

    I had a discussion with my kidney doc today and mentioned a few things that I take as the beginning of a flare. I had blood tests done last week but since everything has been so good for so long,...
  15. Thread: Good news

    by darl-p
    Replies
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    1,529

    Great news. It feels really good when small gains...

    Great news. It feels really good when small gains are made in the right direction.
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    My main involvement was my kidneys and I took...

    My main involvement was my kidneys and I took cyclophosphamide (cytoxin) and prednisone. The cytoxin made me feel a bit loopy at first, so this was taken in the am so I could sleep at night. My body...
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    I think that Pete's response was right on. "As...

    I think that Pete's response was right on. "As always, how you feel is probably your best indicator of wegs activity."

    Over the years I have had many tests and keep a spreadsheet of info. I have...
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    RTX versus Imuran

    Max,
    I have covered this extensively with my rheumatologist. He is definitely in favor of staying with the imuran and has lowered my dose. He is a young guy but goes with the data for imuran that...
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    Prednisone … My friend or enemy? I had been on...

    Prednisone … My friend or enemy? I had been on pred for 8 years and constantly dreamed of getting off it. My rheumy tapered me off in the spring and by June I was having some uncomfortable problems....
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    I have been on Imuran for about six years. I...

    I have been on Imuran for about six years. I currently take 75 mg daily in the am. All my docs think this is the proper drug as there is much more data supporting it. I may have to get off it since I...
  21. Thread: Questions

    by darl-p
    Replies
    8
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    2,271

    Victoria, sorry to hear that you are not finding...

    Victoria, sorry to hear that you are not finding satisfactory medical help. I have been dealing with this problem for seven years and currently have a medical team that responds positively to any...
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    Nikki, I have accepted the tiredness as going...

    Nikki,
    I have accepted the tiredness as going along with the disease. From what you say you are doing I definitely would be tired even without Wegeners but I would definitely contact my doc if I...
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    I will jump in with info passed along by my docs....

    I will jump in with info passed along by my docs. In the beginning I had my ANCA levels monitored. Now they no longer checked for it and I asked why not. It seems that it is not reliable as a great...
  24. Thread: new to gpa

    by darl-p
    Replies
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    2,496

    Welcome Keegan, I have only been on this site...

    Welcome Keegan,
    I have only been on this site for a short time and find it encouraging following the stories. Lots of discussions here with being one’s own advocate. I have had Wegeners for 7...
  25. Thread: Imuran

    by darl-p
    Replies
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    4,149

    I have been on Imuran for more than 5 years. I...

    I have been on Imuran for more than 5 years. I have exceeded the life time does with no known side effects. I was on Cytoxin first and had minor side effects that I would not like to experience...
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