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Thread: Low white count on Rituxin

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    Default Low white count on Rituxin

    I have been taking Rituxin infusions every 4 months for the past 2 years. My white count has steadily dropped, now showing low on blood work. Concerned about risk of infection. Has anyone else experienced this? Iíve had one completely negative ANCA. The last time the PR3 was slightly elevated.

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    Default Re: Low white count on Rituxin

    Hi jackiekc, I have not been on the forum in awhile, but I saw your post and I have the same issue. Of course, its the same but different! LOL.....I have limited Wegeners, diagnosed in 1990. I have never "technically" gone into complete remission. I have to stay on 5-10mg of prednisone all the time or I will flare. Doctors call me a "simmerer". That said, I have had Rituxan in the past, not on a regular basis like some doctors will do, but I will have an infusion, and then see what my labs show. I seem to always have enough inflammation in my labwork, that the doctor is not quite sure what to do. Although it did seem to work for me except I still had to take low dose prednisone. In the last 3 years, my Rheumy has hesitated to give me Rituxan because of my white cell count, it takes so long for me to recover...it makes him nervous because my lungs and sinuses can get infections, and have in the past. Right now, I have been taking a very low dose of oral methotrexate...and I believe I am having a small case of shingles. This tells me that my immune system is down. But I will be seeing my Rheumy Tues, May 22. I'm sure he will do labs, and I will let you know what I find out. Take care Warrior!!
    Life is a Gift~ Lilly

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    Default Re: Low white count on Rituxin

    My Lymphosites (which are part of white blood count) become low during the periods when rtx is in full influence. I get rtx every 6 months, 2000mg, since 2013.

    As far as I understand if you want to know if your body can fight infections, you need to check your Igg.

    Btw, Lilly, "limited wg" is a wrong concept used by some docs. They use it to mean that there is no kidneys involvement. But no wg is ever "limited" and it might be life risking even when the kidneys are not involved. It must be treated seriously. The first rheumatologist I saw when my wg started, called it "limited" and said that there is no need to treat it more then just pred. As we all know, He was very WRONG.
    Alysia
    dx 2008


    Here, I found my sweet love, my beautiful Phil
    https://www.wegeners-granulomatosis....emorial-thread
    During long scary weeks at the hospital, my sweetie used to tell me, what I keep on telling him:"your love is what I live on".
    Rest in Peace, my brave Batman, take care of your weggies from heaven, and get a place ready for me, next to you, until we meet again.

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    Default Re: Low white count on Rituxin

    Thank you Alysia, I always feel like its wrong to say "Limited Wegeners", because my kidneys ARE affected, just not as much as my face, ears, throat and lungs. Usually, having red blood cells in my urine, OR having a UTI is a sign that I am going into a flare. I'm not sure if that's what you mean, but I do know that my kidneys are part of my wegeners. I just looked back at my lab results from my last few visits with my Rheumy. The last Igg I had was 11-19-17, it was 570.0mg/dl The one before was 6-16-17 It was 400. mg/dl I believe my Reumy uses the C-reactive Protein on 4-23-18 it was 0.92mg/dl 2-23-18 it was 1.2 mg/dl ----- I go back to see him Tues the 22nd, but I just found out that I am having an outbreak of shingles!! A small case on my right arm. Now I am on medication for that. I have had a couple other small cases of shingles in the past 2 years, and wondered why they were not large and involved, like I think shingles is. Like my Daddy had it, and I have never seen him show pain!! It was horrible! And my brother in law had it too, my sister said he actually cried! But I'm having these small little cases. Then I looked up and found some information that scared me.....It is CYTOMEGALOVIRUS - a kind of herpesvirus that usually produces very mild symptoms in an infected person but may cause severe neurological damage in people with weakened immune systems and in the newborn. (((YIKES!!!))) I am trying to be strong, but my lungs are horrible even on the methotrexate. The days before the shingles showed up on my arm, I was like a Zombie, tired, achey all over and sleeping very hard, and just doing my best to do the important things in my life and home, and I just had to push myself to do that. Shingles is unbelieveable!! Even a mild case. Goodness, what else can happen?? I'm just praying that my lungs are not infected. They sure sound like they are.....Blessings sweet friend, Thank you for your prayers, and caring about me. I will let you know how my Dr apt goes. I will ask him to run an Igg test. Love you
    Life is a Gift~ Lilly

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    Default Re: Low white count on Rituxin

    Quote Originally Posted by Lilly View Post
    Thank you Alysia, I always feel like its wrong to say "Limited Wegeners", because my kidneys ARE affected, just not as much as my face, ears, throat and lungs. Usually, having red blood cells in my urine, OR having a UTI is a sign that I am going into a flare. I'm not sure if that's what you mean, but I do know that my kidneys are part of my wegeners. I just looked back at my lab results from my last few visits with my Rheumy. The last Igg I had was 11-19-17, it was 570.0mg/dl The one before was 6-16-17 It was 400. mg/dl I believe my Reumy uses the C-reactive Protein on 4-23-18 it was 0.92mg/dl 2-23-18 it was 1.2 mg/dl ----- I go back to see him Tues the 22nd, but I just found out that I am having an outbreak of shingles!! A small case on my right arm. Now I am on medication for that. I have had a couple other small cases of shingles in the past 2 years, and wondered why they were not large and involved, like I think shingles is. Like my Daddy had it, and I have never seen him show pain!! It was horrible! And my brother in law had it too, my sister said he actually cried! But I'm having these small little cases. Then I looked up and found some information that scared me.....It is CYTOMEGALOVIRUS - a kind of herpesvirus that usually produces very mild symptoms in an infected person but may cause severe neurological damage in people with weakened immune systems and in the newborn. (((YIKES!!!))) I am trying to be strong, but my lungs are horrible even on the methotrexate. The days before the shingles showed up on my arm, I was like a Zombie, tired, achey all over and sleeping very hard, and just doing my best to do the important things in my life and home, and I just had to push myself to do that. Shingles is unbelieveable!! Even a mild case. Goodness, what else can happen?? I'm just praying that my lungs are not infected. They sure sound like they are.....Blessings sweet friend, Thank you for your prayers, and caring about me. I will let you know how my Dr apt goes. I will ask him to run an Igg test. Love you
    Oh no Lilly, I am so sorry about those shingles... it's been few days since you wrote that post (sorry for not writing back earlier), do you have any news ? How are you feeling so far ? Will you please update us ?
    Alysia
    dx 2008


    Here, I found my sweet love, my beautiful Phil
    https://www.wegeners-granulomatosis....emorial-thread
    During long scary weeks at the hospital, my sweetie used to tell me, what I keep on telling him:"your love is what I live on".
    Rest in Peace, my brave Batman, take care of your weggies from heaven, and get a place ready for me, next to you, until we meet again.

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    Default Re: Low white count on Rituxin

    Hi, finally back. I went to Rheumy Tues, 22nd. He is a good doctor, but he likes to "think" about things and not make hasty decisions. The shingles thing kinda messed up his thinking. He called in Valtrex and I have been on it for a week. He is now considering having me take the shingles vaccine. I am hesitant, but shingles is hard on your body, even a small outbreak. My Doctor has been so focused on keeping my inflammation down with low dose methotrexate, (instead of Rituxan treatments which cause my white cell count to take so long to recover) while trying to keep my white cell count normal, and in the middle of that treatment I get shingles. I think I am driving him batty!!!! He is keeping me on the methotrexate for 2 more months (until my next appt) and he did draw blood but no urine. I still have not received lab results, which is strange because I usually get them in 1-2 days. I have been flat out exhausted and have slept all day Wednesday and Thursday! My parents have run a couple of errands, picked up my meds from pharmacy, etc. so I don't have to drive. I have so much mucus in my ears and sinuses, that its painful, and you know about the hearing issues. My Mother went to our family Eye Doctor last week and told him what was going on with my ears, and my EENT was not even considering any type of help for me, such as the BAHA. He never even mentioned it. And practically scoffed at the word "choclear" when I asked him about it. So our Eye Doctor gave my Mom a name of another EENT that may be able to help me, and be more open minded. I am also going to do a little research on places close to me, such as University of Alabama at Birmingham (UAB) I went to UAB for 11 years when I lived in middle Alabama, and they are a research hospital as well as having many Specialists and are always trying new ways and treatments. I was part of one such study when I went there. Anyway, I will be in touch. We are having some bad weather here, and my power is going on and off.....Blessings and Love Lisa :-)
    Life is a Gift~ Lilly

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    Default Re: Low white count on Rituxin

    Most big Universities have a medical school and often the staff in those facilities are most likely to keep up with current research and treatment techniques. So they are usually a good resource for unusual problems.
    Knowledge is power! Wisdom is using it to make good decisions!

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