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Thread: Fatigue post RTX

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    Default Fatigue post RTX

    I've just completed my first 6 month RTX maintenance (1 gram) infusion on 12/11. About a week post infusion, I've been hit with awful fatigue. It hasn't gotten better. I was concerned I was having a flare as early as late NOV (chest congestion, my Wegs started in lungs) but my early December labs were all normal including negative C-ANCA and negative PR3.

    Current Pred: 15mg/day, no other maintenance drugs beyond RTX/Pred/Bactrim.

    Anyhow, I went to primary care to get more labs drawn this week and I had normal ESR (4), normal CRP (2.1), Hemoglobin dropped from 13.6 to 12.5, and creatinine jumped from 1.17 to 1.28. No blood in urine, and all other blood CBC/CMP stuff was normal. My sinuses are clear but I'm the one oddball that seems to have no sinus activity with Wegs: Dr. Villa Forte herself described my sinuses as pristine.

    Primary Care thinks the drop in hemoglobin is what is making me tired.

    I'd hate to think I'm having a flare AFTER receiving RTX. At diagnosis in May, I had a negative kidney biopsy and normal creatinine (.94), but once starting RTX the creatinine has bounced between 1.07 and 1.26, with this being the first lab (1.28) that was in the abnormal range (>1.27). With this disease I'm always fearing kidney activity.

    Is it possible the RTX is making me tired, or lowering my hemoglobin? Am I over-analyzing my labs: all things considered the numbers are pretty good.

    Just concerned because I'm completely run down and I've gotta go back to work on the 2nd. Not a fun way to spend the time off wanting to nap all day.

    I know my problems are miniscule compared to others seen on this board, but thanks for letting me vent.
    Last edited by richard052018; 12-29-2018 at 05:04 AM.

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    Default Re: Fatigue post RTX

    Hi Richard,

    Sorry to read about the fatigue. Since I’m also one of Dr Villa Forte’s patients, I guess we get the same treatment protocol — 125 mg od solumedrol, some benadryl, and 500 mg of tylenol. I don’t sleep well the night of the infusion (steroid plus inactivity) and am a little tired the next day (benadryl and poor sleep. My post-rtx fatigue is mild and doesn’t keep me from doing normal stuff. I’m usually back to normal within 36-48 hours.

    Since your fatigue is more pronounced and your labs are ok, I’d touch base with Dr Villa Forte and see what she says.

    Good luck!!
    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

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    Default Re: Fatigue post RTX

    It takes a few weeks for Rituximab to kick in. Relax and as the Hitchhikers Guide to the Galaxy says "Don't Panic"

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    Default Re: Fatigue post RTX

    Thanks for the words of encouragement, but just got labs back from local Rheumy and Creatinine has jumped to 1.44 from 1.28 last week. Local Rheumy is out of the office today but will get with me on Monday. What's crazy is inflammation, other blood labs, and unrinalysis (no blood/protein/casts) are all normal. Don't really know what to think at this point: the reports of this disease wiping out the kidneys in days/weeks are terrifying though.


    I am going to reach out to Dr. Villa Forte via mychart for some guidance.
    Last edited by richard052018; 01-05-2019 at 10:26 AM.

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    Default Re: Fatigue post RTX

    Hi Richard,
    Sorry you have to deal with these right now... I see that you got 1 gram rtx - 1000mg, right ?
    For me 1000mg is not enough to kick the wg. Since 2013 I get 2000mg every 6 months. Plus daily pred. Once my dr. Tried to give me only 1000mg rtx and my wg became more active. So 2 months after the first 1000mg I went for another 1000mg which worked eventually. Maybe thats what you need. Please consult with your dr. Asap.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Default Re: Fatigue post RTX

    Alysia,

    Thanks for getting back with me. Yes, I got 1G RTX back on Dec 11th.

    This is such a weird disease. Urine labs are fine, inflammation labs are fine, but creatinine is steadily getting higher. My doctor has always preached that before the kidney blood labs go bad, your urine labs (re: protein/blood, red cell casts, etc.) will go bad first. I haven't had a bad urine lab since some blood in the urine around the time of diagnosis.

    If we can get this under control, is there any chance of the Creatinine/GFR going down? The literature on the web is mixed (Acute disease typically heals, but Chronic disease does not). Not sure if I'll qualify as acute or chronic.

    I ordered a renal panel and ESR today from LabCorp to take to my doctor on Monday. They hate it when I order my own labs though.

    Thanks Again,
    Richard

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    Default Re: Fatigue post RTX

    Quote Originally Posted by richard052018 View Post
    Alysia,

    Thanks for getting back with me. Yes, I got 1G RTX back on Dec 11th.

    This is such a weird disease. Urine labs are fine, inflammation labs are fine, but creatinine is steadily getting higher. My doctor has always preached that before the kidney blood labs go bad, your urine labs (re: protein/blood, red cell casts, etc.) will go bad first. I haven't had a bad urine lab since some blood in the urine around the time of diagnosis.

    If we can get this under control, is there any chance of the Creatinine/GFR going down? The literature on the web is mixed (Acute disease typically heals, but Chronic disease does not). Not sure if I'll qualify as acute or chronic.

    I ordered a renal panel and ESR today from LabCorp to take to my doctor on Monday. They hate it when I order my own labs though.

    Thanks Again,
    Richard
    I believe the creatinine will get better with treatment. I thought you got rtx on Nov. If it was on Dec then it might not yet be working. Please call your dr.
    Also tagging @gilders who is our expert considering kidneys.
    Sending you prayers.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Default Re: Fatigue post RTX

    Hi Richard,
    There are reasons why creatinine levels in your blood may increase other than progressive kidney disease. These are mainly due to 3 reasons;
    1. Increased Creatinine Production. This can be caused from muscle breakdown, usually during intense excercise, or from ingesting more creatine either from supplements or meat.
    2. Interference from Assay (I.e. "things" effecting the blood test). The Jaffe assay, for example, acetone and acetoacetate (such as in diabetic ketoacidosis), fasting, lipemia, and hemolysis, resulting in an overestimate of the serum creatinine. Drugs that can interfere with the assay include antibiotics such as cephalosporins, specifically cefoxitin and cefazolin; barbiturates; N-acetylcyteine; and chemotherapeutic agents such as flucytosine. Another material known to interfere with the Jaffe reaction is nitromethane, a common component of radio-controlled-vehicle fuels.
    There are other assays other than Jaffe that also can be influenced/interefered with. If your blood results are from different labs, they will often vary, especially if different methods are used.
    3. Decreased Secretion. Approximately 15% of creatinine is secreted in the tubules. It is secreted by the organic cation secretory pump that can be inhibited by other organic cations. Trimethoprim, cimetidine, and other H2-blockers medications can inhibit this process and cause an increase in the measured serum creatinine.



    Having said all that, it IS still a marker for kidney disease, so do keep a close eye on it, especially if you don't think any of the reasons above apply to you!

    A lot of the above information is taken from the following journal https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3383162/ you may want to read the full article.
    Diagnosed April 1995

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    Default Re: Fatigue post RTX

    Gilders,


    Thank You for all of the info!! Best of luck to you with your upcoming transplant!! We are all pulling for you!!

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