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Thread: Rituxan and infections

  1. #21
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    Default Re: Rituxan and infections

    I prefer to avoid infections. I asked the Doctor that prescribes RTX about antibiotics.

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    Default Re: Rituxan and infections

    Drz,
    Thank you for your wise words. It is one of our greatest frustrations to not get immediate answers for our unpredictable infections and medical issues that pop up out of no where. We have lost too many of our dear friends on this forum, because I opportunistic infections. It is so important to get the proper help asap. This forum has been a life saver for me at times and I don't know what I would have done at times without all of you here, so thank you all!
    I finally have gotten an appointment setup with an Infectionous Disease doctor, but not until 12/12. I now have a wound vac on my leg and it is healing very slowly. I would have never dreamed that it would take so long to heal. They took me off of antibiotics, because of risk of getting C-diff. I guess it is a roll of the dice to as if I need more antibiotics.
    Thanks to everyone for their feedback and concern!
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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  4. #23
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    Default Re: Rituxan and infections

    I'm so with you Jana on how this forum has saved our lives, and sadly our knowledge sometimes comes from witnessing the loss of a dear friend on here. I know I wouldn't be where I am today physically and mentally if it wasn't for this forum. I am and forever will be grateful to everyone on here for the support, wisdom, patience, peace, challenge (yes even though I hated it at the time, it pushed me to find my current doctor who not only saved my life but who I wouldn't trade for all the tea in China) and empowerment they have shared with me.

    Now to just putting a couple of flies in your brain. I am just putting a couple of ideas forth for consideration.
    I'm not telling you to do anything even though that is how it comes across in the wording.

    1. Call his office and tell them that time is kind of crucial, so if they have any cancellations you can be there within x amount of time. Maybe you'll get in sooner and then 12/12 becomes worst case scenario instead of best case scenario (where it is now)

    2. C-diff. So I know they are scared to death of it because cure rate is low and the antibiotic used is one of those lock and key types... BUT, there is an alternative treatment, it's kind of gross, but it has 100% cure rate. I know. Totally crazy. It is based on a probiotic model of treatment and is called a, ready for this... 'fecal transplant' - it actually has a 97% cure rate on first treatment, and 100% on second (for those 3% that missed it on the first round.)

    3. Too many antibiotics.... the problem with them is that they kill too much of our good gut micro biome. The solution is probiotics. Aside from maybe making you feel gross, the only significant negative side effect is that it kills the good bacteria too. Now we have a solution to that. I personally am addicted to Kefir. I love it. It tastes exactly like a drink I use to drink in Bulgaria when I was a kid. So I have at least a glass a day. But there are many other ways to pump up your gut biome, and if you don't like the foods, there are pills too. The gut is the birthplace of the immune system, so keeping that bad boy happy is integral to our journey to normality.

    So if antibiotics are keeping the infection in your leg from moving in systemically, I'd probably go with the antibiotics. I think the risk/benefit ratio leans more towards antibiotics to prevent an untreatable infection. I mean we take them all the time. I'm on Dapsone, daily for life. That's a heavy antibiotic to treat Leprosy, so I think keeping yourself safe from the clear and present danger of a bacterial infection, outweighs the risk of the antibiotics. And if C-dif becomes an issue, then you have something to suggest for treatment.

    So the question becomes risk of sepsis (very scary, potentially deadly for us) vs risk of C-dif (100% treatable with fecal transplant). And now you have some extra data to make that decision on. I hope I didn't complicate the situation.

    Big hugs, and lots of love Jana.

    This too shall pass
    Last edited by marta; 12-02-2017 at 05:42 AM.

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    Default Re: Rituxan and infections

    Quote Originally Posted by Jaha View Post
    Drz,
    Thank you for your wise words. It is one of our greatest frustrations to not get immediate answers for our unpredictable infections and medical issues that pop up out of no where. We have lost too many of our dear friends on this forum, because I opportunistic infections. It is so important to get the proper help asap. This forum has been a life saver for me at times and I don't know what I would have done at times without all of you here, so thank you all!
    I finally have gotten an appointment setup with an Infectionous Disease doctor, but not until 12/12. I now have a wound vac on my leg and it is healing very slowly. I would have never dreamed that it would take so long to heal. They took me off of antibiotics, because of risk of getting C-diff. I guess it is a roll of the dice to as if I need more antibiotics.
    Thanks to everyone for their feedback and concern!
    Some times I have had a local doc who seems concerned about my situation call such a specialist and get a consult over the phone on what to do in the mean time and this has often been a great help and relief for both of us. I have also had some luck in getting ER doctors makes referrals to a specialist which seemed to speed up the process too. (More so than my regular outpatient doctors). Not sure if that would help you or not in your situation but I have empathy for your anxiety and concern about your situation. I hope you get some good help soon and that things improve soon for you.

    I think learning how to cope with and manage effectively the health care system to get the help we need for our various symptoms and issues is the greatest challenge we face. Our survival and health and happiness largely depend upon our skill and success in doing so.
    Last edited by drz; 12-02-2017 at 08:23 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Rituxan and infections

    My first RTX in 2011 I developed a gaping hole on my low spine that they had to pack, clean,try this, and that and I had a nurse that came for about two weeks, and antibiotics and it went away, Kind of like a "parting gift". The ten times I have had the RTX and no problem. I just got home now from the latest infusion at the cancer center in Carson City.

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    Default Re: Rituxan and infections

    Thank you once again, Marta. Your suggestions are well taken and very spot on. I would not be a live without the help from dear friends like you on this forum. I will call and try to get in asap.
    Hugs and love back at you, Marta
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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  12. #27
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    Default Re: Rituxan and infections

    Drz,
    Thank you for your suggestions, I am going to try to get in sooner. I know that the management of our unpredictable disease is very challenging. We have lost to many of our friends from this ugly disease. I am so grateful to be able to come here and get good advice to help me manage health issues. I think it is getting harder to get cooperation from the healthcare professionals. I agree knowing how to effectively navigate through this optical course is very important.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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  14. #28
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    Default Re: Rituxan and infections

    Little Jerry,
    I am glad that you are doing well now with your infusions. Having a hole packed is not to fun. I have a RN coming to the house twice a week and also have to go to the wound clinic, once a week. It is healing, but slowly. I have had 21 RTX infusions and end up with so kind of infection everytime afterwards, usually it is a UTI. This time I got a big one.
    Please take care of yourself!
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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  16. #29
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    Default Re: Rituxan and infections

    Back at ya Jana.

    I was thinking about you all week because I had the c-diff thing on my brain, and was at the doctor's for my daughter (who they think might have gotten PANDAS from a strep infection, I insisted they check her for antibodies and a step swab, and I saw the doctor at the ski hill this Saturday and sure as heck, she's got asymptomatic strep, so we're going in tomorrow to get antibiotics, and a swab for me, and maybe even a round of antibiotics for me.... as usual, I digress)
    We started talking with this doc about probiotics (his wife is a nutritionist) and we got onto using probiotics to treat infections, and the c-diff thing came up. We were talking, and I brought it up and we both lit up when that topic popped up (or is it pooped up, ha ha ha). So apparently this is now a known element in the actual medical world. This is super cool. Then I was telling Brian about our conversation, and he said he had heard on CBC about a new Fecal Transplant pill. Yup a pill. There is research out of the University of Alberta using them. They're not approved by Health Canada yet, but the doctors can apply to treat a patient with them (thereby avoiding some complications of the other methods like sedation complications, colonoscopy complications like tears, and if done with a feeding tube, there is always the possibility of tears and aspiration.) Here are some links:

    https://www.theverge.com/2017/11/28/...cile-infection
    https://www.openbiome.org/press-rele...l-dosing-study
    http://www.cbc.ca/news/canada/edmont...cile-1.4424444

    In one of the articles it notes that even with all the bacteria in the fecal transplant are killed, it still does better than the antibiotics used, so they're not sure if it's the bacteria or something else. Super interesting. But the point is there is an over 90% cure rate on the first treatment, and the article I read on this many years ago, stated 100% cure rate after the second treatment.

    Another interesting thought around this, the immune system's birthplace, and training grounds is the stomach. So gut health, in my opinion, is directly related not just to autoimmune disease, but also the other diseases that I keep linking with ours. Quite fascinating actually. Only time will tell.

    Best best best of luck Jana.

    I hope that they call you this week, and tell you to come in right away because someone cancelled.

    Much love.

    P.S. I can't believe you've have 21 RTX treatments. That seems like a lot. I try and avoid them as they're the only thing I have left to take care of a flare, and I like to keep it in my back pocket like a cheating card player. RTX is my only Ace up my sleeve. Last two times, I had the beginnings of an allergic reaction, and I felt myself panic a little because if I can't use RTX, then I'm kinda hooped on my next flare. Just out of curiosity, are you using it as maintenance, or have you had that many flares? I remember the discussions a few years back when we all started using RTX around the same time. (Incidentally, my super doc was the first one to use RTX for WG in Canada way back in the early 1990's, cool, hey.)
    Last edited by marta; 12-05-2017 at 05:08 AM.

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  18. #30
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    Default Re: Rituxan and infections

    I have decided to go up to Cleveland clinic tomorrow and forget this doctor down here. I didn't even have enough energy to go to the wound clinic today and had the home health Nurse come in to change the Wound Vac. I tried to call to get in sooner to the Infectious Disease Doc and they wouldn't return my call. I am not feeling so great and need to get rid of this infection Asap.
    I had to start using RTX, because nothing else was holding me from the ugly dog raising it's head and being active. I don't really ever think I have had a remission.
    I hope you don't have strep, if you do, stamp it out asap. I hope your daughter feels well soon. Please take care of yourself! Love and Hugs!
    Last edited by Jaha; 12-05-2017 at 03:09 PM.

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