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Thread: Newly Diagnosed and starting Cytoxan/Preds/Bactrum today

  1. #191
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    I was on ctx for 18 months, first for 6 then a month and a half later they put me on another 12 month course.
    now I've been in mtx for 3.5 years
    Jolanta

  2. #192
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    Dear Hope,
    Shingles comes from the chicken pox virus--if you had chicken pox the virus sort of hides in your system & can cause shingles later in life. I don't think it will have anything to do with your fall. You should see a doctor quickly--if you do have shingles it has to be treated early or the drugs won't be as effective. Really I think you should have this checked out--don't wait!!!!

  3. #193
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    My PCP had me go to the ER and get checked out and to make sure it wasn't anything serious. I did have my first shingles outbreak this past summer, so I know the feeling. No breaks, and yes, I started treated for shingles. I'm rare and lucky in that mine haven't been that painful (no rash this time), just an annoying pin prickly feeling on the right side of my face at several different spots. If this treatment doesn't work it may be a damaged nerve from the fall.

    So far, I'm on day 3 and it does seem to be getting better.
    "Never go to a doctor whose office plants have died." - Erma Bombeck

  4. #194
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    Shingles sounds just awful. I guess many of us who are baby boomers had chicken pox. My sisters definitely had it and I may have had a very mild version, not nearly as many pox. Maybe just pimples, not sure. I have had type 1 herpes (cold sores) all my life.

    I hope you or anyone else on here who get shingles ends up with a relatively mild, treatable case!
    Anne, dx'ed April 2011

  5. #195
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    Quote Originally Posted by HopeinTN View Post
    I'll mention it to her again today in an email. My labs from my recent visit are mostly ok aside from my SED rate of 36 and CRP at 20.5 (still not bad), but this can be so many things.

    Should the CTX make the granulomas go away? They are not going away, but not getting any bigger.

    Sangye- Can you give me a few questions that I can ask my dr? I know seeing a specialist would be ideal but my Dr.'s and Vandy say I'm doing great. Also, I'm a single 40 year old that has to work to pay the mortgage...and traveling to XYZ to see Dr. XYZ would be a huge expense. I have no idea where I would find the time to pull all the info a new Dr. would need.

    I haven't been feeling bad but I did fall down some steps on Christmas Eve and aside from bumps, bruises and a crushed ego, oh, and a carpet burn between my eyes), I survived. Until about 5 days ago, when I started having tingling on the right side of my face in a few different spots. It's not a stroke, but maybe nerve damage or what I think...Shingles. Can you have shingles on the face with no spots, from a bump to the head?

    THANKS GUYS!
    Do you mean questions to ask a new doctor or your current ones?

    I suggest you find a chiropractor who does craniosacral work. After that fall you need to get your cranial bones adjusted, as well as your entire spine. A bad fall can cause dormant viruses to activate. We see this all the time in chiropractic.

  6. #196
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    Sangye- yes, my current dr. Thanks for the heads up on the chiropractor.
    "Never go to a doctor whose office plants have died." - Erma Bombeck

  7. #197
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    My mom fell out of my brothers truck back in July of 2011 and she still has issues regarding that. I could never convince her to go see my chiro. She is afraid of the cracking.
    Phil Berggren, dx 2003

  8. #198
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    I'm not keen on the cracking part. I actually feel nausea when I hear someone crack their neck. I'm still not sold on it but worth thinking about and looking into.
    "Never go to a doctor whose office plants have died." - Erma Bombeck

  9. #199
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    I was on the same medicine for at least 2 years, might have been longer than 2 years. Worked full time. Yes I was tired some days but learned either I work or keep a clean house. I am usually in bed by 8:00, maybe not sleeping but resting. Approx. 1-1/2 years ago my doctor put me on Rituxan (still on 5mg pred and bactrim). Has worked wonderful. The reason for changing my meds is I started getting bad blood results. white vs red blood cells. Once I got off of the cytoxan everything came back to normal. It did not stop me from doing anything. I cruise, go to Disney all the time (can't walk like I use to there though, used a wheelchair for 9 days though because I did not want to get tired and we were at the park from 9AM - 12 midnight most days). I even traveled to India for business last March for 2 and 1/2 weeks. I have had wegeners for 8 years now. My number one complaint - the weight gain.

  10. #200
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    I'm glad to hear how well you are doing and that you survived long term Cytoxan use. I had rough days in the beginning but other than being tired and the weight gain, it hasn't been too bad. There were a few bad times in between but it's looking up. My test for Imuran showed I could take it, and that's the next step, hopefully in June.

    Thanks for saying hi!
    "Never go to a doctor whose office plants have died." - Erma Bombeck

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