User Tag List

Likes Likes:  23
Page 2 of 2 FirstFirst 12
Results 11 to 17 of 17

Thread: Low white count on Rituxin

  1. #11
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,024
    Post Thanks / Like
    Mentioned
    6 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Low white count on Rituxin

    The shingrix vaccine is a dead virus vaccine. Both my PCP and Dr Villa Forte recommended I get it. After the first dose, I had a sore shoulder at the injection site (as with a tetanus shot) for about two days. I had the second dose two months later. After this dose, I had flu-like symptoms (body aches and low grade fever) the day after the injection. I also had a sore shoulder for five days. I was back to normal five days after shot #2.
    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

  2. #12
    Join Date
    Feb 2018
    Location
    Carolinas
    Posts
    71
    Post Thanks / Like
    Mentioned
    4 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Low white count on Rituxin

    Pete, This is great information. I have an appointment with one of my doctors this week and will discuss it. I have no doubt he will encourage me to get it. Since I was told to stay away from live vaccines like Zostavax, I just assumed the new shingles vaccine was also live. Just goes to show you my old college law professor was right. “When you ASSUME, you make an ASS out of U and ME!”
    Masha

  3. #13
    Join Date
    Jul 2014
    Location
    Anchorage, Alaska
    Posts
    278
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Low white count on Rituxin

    Gosh I think there is a lot of misunderstanding and some disagreement about this. Possibly it depends on timing and what other medications are being taken. I was told to get all the vaccines (shingles, flu, pneumovax, etc.) early on after my diagnosis. I think the idea was to get those things out of the way before potential treatment with a biologic agent. I certainly agree with Masha... proceed with caution after consultation with docs who know what they are talking about.

    I've said before and still think that the terms "limited" and the alternative "non-severe" are misleading, because every case is different, and just because you don't have kidney or lung involvement does not mean you cannot become very ill. However, I think if you have kidney involvement, you fall out of the "limited" category under the current definition.

    There is a new shingles vaccine, called Shingrex, that is stronger and has a two stage administration; it is supposed to be more effective than the other one.

    I saw a new, young rheumatologist up here recently, who ordered every lab test known to man, as far as I can tell. I've never had so much blood drawn at once before! My pcp was concerned because of some elevated labs months ago, but I'm told I'm in a pretty solid drug free remission and need no maintenance meds for now. Still struggling with nasal/sinus symptoms and very annoying hearing loss and tinnitus, but all of that is caused by damage from my acute phase of illness several years ago. I just had a sinus CT that shows vast improvement over a study from a couple years ago.

    I definitely feel your pain regarding fluid in the ears, hearing loss and eustachian tube dysfunction. It can vary so much from day to day and really mess with your ability to navigate the world!

  4. Likes me2, Masha, linda1226 liked this post
  5. #14
    Join Date
    Nov 2016
    Posts
    5
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Low white count on Rituxin

    Out of everything I went through at diagnosis, DVT, on the vent twice, IVC filter, nerve damage to my foot, hospitalized for 31 days and having to relearn how to walk...interestingly enough, Tinnitus is my most bothersome issue at this point. Hearing aids ordered yesterday. Hoping they help!

  6. #15
    Join Date
    Oct 2017
    Location
    Miami Beach
    Posts
    53
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Low white count on Rituxin

    Quote Originally Posted by Alaskatom View Post
    I've said before and still think that the terms "limited" and the alternative "non-severe" are misleading, because every case is different, and just because you don't have kidney or lung involvement does not mean you cannot become very ill. However, I think if you have kidney involvement, you fall out of the "limited" category under the current definition.
    Completely agree. I would even venture to say that if Wegs is allowed to run its course, without treatment it will get to the lungs and kidneys and destroy them.

  7. Likes Masha liked this post
  8. #16
    Join Date
    Jul 2014
    Location
    Anchorage, Alaska
    Posts
    278
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Low white count on Rituxin

    I've read that even without renal involvement, the mortality rate for untreated disease is 40% or more, and of course much higher with vital organ involvement. At least these days there is some understanding of the illness and some effective treatments, assuming one is diagnosed before too much damage is done.

  9. #17
    Join Date
    Feb 2018
    Location
    Carolinas
    Posts
    71
    Post Thanks / Like
    Mentioned
    4 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Low white count on Rituxin

    Boy, do I agree with all of the above. I have heard that it is no longer limited when it hits your trachea. My question is, however, how can it be limited if it hits your eyes, ears, brain? Yes, Alasktom, you are so right, it can never go untreated. I have paid close attention to Pete’s information. Even though he is feeling well, he and his doctors stay on top of it. When I was first diagnosed I asked my Rheumatologist how long I would have this disease and need treatment. He gingerly told me for the rest of my life, but quickly added that as I improve treatment would change. My doctors talk in the direction of improving because I am such a Nervous Nelly, but they have also made me aware things can slide downwards. After reading some of these posts where patients are begging for tests and treatment, I thank my lucky stars that is not my story. So many tests, blood work, biopsies I get worn out. I can feel an improvement after my second course of Rituxan. The next series will be five months from the last, instead of six. I ask the RN’s at infusion what the letters on my blood work mean, then I do my homework via google before meeting with my doctor, so that I have a better grasp of the questions I want answered. I have learned there is a fine line to walk, living a normal life and not becoming paranoid. My biggest challenge has been learning to say no, and not exhausting myself as I did before Wegeners. I think about all of you and your stories and pray for you.
    Masha

  10. Likes drz, seied, me2, whatthewhat liked this post
Page 2 of 2 FirstFirst 12

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
  •