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Thread: Flare up Freak out

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    Default Flare up Freak out

    Hi. I havenít been on here for years. I was originally diagnosed in 2010 and did very well for many years. Iím now experiencing a tough flare up and have been for two months. It started a little over two weeks after my Pfizer Covid jab. Very sudden tightness in chest after hard bike ride. Then X-ray and CT showed new nodules in lungs. CRP was way up and ANCA was positive.
    I started on 80 mg of pred. Then two weeks later did the first rituxan infusion (July 14). Things seemed to improve quickly at first, but then stalled and backtracked as I lowered pred to 50. Ears are now plugged and ringing. Some sinus inflammation. Weakness and tingly feeling in hands and feet. Second dose of rituxan was July 30.
    This past week has been hard. WG symptoms seem to be worsening when I feel like they should start improving. Pred is wreaking havoc on me emotionally. Has a panic attack the other day. Now taking meds to help anxiety and sleep. Probably talking to psychologist soon too.
    Iím just wondering if anyone has some reassuring advice for me. How long till you started to see effects of rituxan after second dose? Do you see setbacks on your road back from a flare? How do you cope? What alternatives exist if rituxan doesnít do the trick and pred isnít holding down the Fort?
    Thanks. Iím losing my mind a little as my body acts up.

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    Default Re: Flare up Freak out

    I also had a flare after my Covid-19 vaccination and am still trying to recover from the treatment, mainly the high dosage of pred meds which started at 60. I am down to 15 but some issues that went away at high pred dosage like nose bleeds are reappearing again. The dry eyes with vision problems and dermatitis are the most bothersome now along with a serious shortness in breath that makes me unable to walk more than a few feet without huffing and puffing. I gained 22 pounds and the pregnant look and moon face from pred meds. Plus my Blood glucose levels went up 50 points and my insulin usuage.

    I have lost half my visual field in one eye since the flare. Increased Blood Glucose levels probably caused an increase in my glaucoma pressure and damaged my eye. I had my last RTX treatment over 6 months ago. Doctors have attributed most of my problems to the high dosage of pred needed to treat the GPA but I have not seen any improvement as the dosage went down from 60 to 15. My snack attacks and low blood glucose episodes have declined a bit so that is good. But it is frustrating as I keep hoping for other things to improve. I used to walk a mile a day with no problem and now just getting dressed wipes me out. I have been to ER several times as my heart has raced up to 150 beats a minute when I am struggling to breath. My pulmonary function tests showed a significant decrease but x rays show no new damage in lungs. Heart evaluations have been OK with no heart attacks yet.

    I don't know if it was the RTX or high pred meds but several issues disappeared after treatment for GPA. I no longer needed surgery for prostrate issues and physical therapy for torn meniscus in my knee. Nose bleeds went away but fatigue became a bigger problem and that has only gotten worse. I didn't need the sinus rinse as often or eye drops for dry eyes. But now at lower pred meds and six months after RTX some issues like dry eyes and prostrate issues are reappearing.

    I was smoldering before the flare and still think getting the vaccination was right choice cause it reduced my fear of death or serious illness from Covid infection but I didn't expect the treatment and hopefully eventual recovery to remission to be so difficult or long.
    Last edited by drz; 08-31-2021 at 08:08 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Flare up Freak out

    Hang in there, Peter and drz. It takes time to recover from a flare especialy if it is the result of the vaccin. I spoke with a rheumatologist in Israel who investigates the correlations between vaccins and autoimmune diseases' flares. He said that in about 3-4 months after getting the vaccin, and while recieving treatment of course, things might be back to normal. I dont know if he is right. You will be able to tell in time.
    My 2 tips: 1. For breathing it helps me to nebulize budesonide. 2. I no longer can get rtx because my Igg and Igm are below the normal. So I am now on Leflunomide 10mg daily. It is a wonderful medicine. No side effects. My joints are pain free after years, because rtx was helpful only for a limited time. My Igg and Igm are recovering, although very slowly.
    Alysia
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    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: Flare up Freak out

    Thanks alysia. Interesting about vaccines and flares. Kinda crazy actually. I have also not heard about leflunomide before. Is it an rituximab replacement option for maintenance or flare treatment?
    I had a really tough couple weeks, mostly because of prednisone induced anxiety I think. Crazy. Iíve never had anxiety before but it floored me. I feel like Iím turning a corner though. My blood work continues to improve. My energy and strength are better. Iím around 6 weeks post second RTX dose so this should be making its presence known now. I also do monthly IVIG, which seemed to make me feel better too. Iíll get there and Iíll far more positive now. Just gotta keep lowering the damn prednisone! Bit by bit.
    Thanks for your words of encouragement.

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    Default Re: Flare up Freak out

    Quote Originally Posted by Pmarsh View Post
    Thanks alysia. Interesting about vaccines and flares. Kinda crazy actually. I have also not heard about leflunomide before. Is it an rituximab replacement option for maintenance or flare treatment?
    I had a really tough couple weeks, mostly because of prednisone induced anxiety I think. Crazy. I’ve never had anxiety before but it floored me. I feel like I’m turning a corner though. My blood work continues to improve. My energy and strength are better. I’m around 6 weeks post second RTX dose so this should be making its presence known now. I also do monthly IVIG, which seemed to make me feel better too. I’ll get there and I’ll far more positive now. Just gotta keep lowering the damn prednisone! Bit by bit.
    Thanks for your words of encouragement.
    Leflunomide is a maintenance med like mtx or imuran. But it also treats the wg not bad at all, at least for me.

    I am glad that you are doing better. Step by step. How are things so far ?
    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: Flare up Freak out

    Quote Originally Posted by Alysia View Post
    Leflunomide is a maintenance med like mtx or imuran. But it also treats the wg not bad at all, at least for me.

    I am glad that you are doing better. Step by step. How are things so far ?
    Thanks Alysia. It was a really tough week. Iíve never experienced anything like the prednisone induced anxiety. Just crazy hard. Iím on the meds to help keep this in check and Iím feeling much better. My docs also decided to rapidly taper the pred. I went from 30 to 15 this week, which kinda scared me. All good so far though. Minor aches and maybe a headache. Weg symptoms seem ok and improving. Mainly just plugged up ears and lung granulomas this time. I hope things keep improving to remission quickly. Jumping from 15 to 7.5 next. Yikes!

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    Default Re: Flare up Freak out

    Hi PMarsh,

    I had a similar experience. After 2 years of Rituximab infusions (every 6 months), went into a drug-free remission. No infusions, no prednisone. Then stayed in this remission for about 3 years without any meds. Last year I got Covid and my flare started. This time it attacked my brain and ears. Got pachymeningitis as a result and ended up in the hospital. Started losing hearing. Got a Rituximab infusion in April and they put me on a high dose of prednisoe. The infusion took forever to kick in but after 8 weeks it finally did. however, it seemed to control the flare except for the ears part. My hearing on the left ear dropped significantly last month. They just put me on Cytomax (the chemo drug). I was supposed to get a second infusion in September but they decided to hold off and do Cytomax bc doctor thought the infusion would take too long too kick in and I might lose hearing on left ear. Cytomax apparently works faster. They also increased the prednisone to 60mg.
    The jury is still out. My hearing is stable, meaning it hasn't gotten worse but it could also be the 60mg of prednisone controlling it. It hasn't even been 2 weeks since I started the Cytomax so I doubt that it's working yet. I think they told me 2-4 weeks for Cytomax to start kicking in and that it would be a 3 month treatment on this drug. They also started me on a low dose of it (25mg). I think the idea is to increase it if I can tolerate it. It's a very dangerous med so they like to start slow.
    Hope this helps!


    Quote Originally Posted by Pmarsh View Post
    Hi. I havenít been on here for years. I was originally diagnosed in 2010 and did very well for many years. Iím now experiencing a tough flare up and have been for two months. It started a little over two weeks after my Pfizer Covid jab. Very sudden tightness in chest after hard bike ride. Then X-ray and CT showed new nodules in lungs. CRP was way up and ANCA was positive.
    I started on 80 mg of pred. Then two weeks later did the first rituxan infusion (July 14). Things seemed to improve quickly at first, but then stalled and backtracked as I lowered pred to 50. Ears are now plugged and ringing. Some sinus inflammation. Weakness and tingly feeling in hands and feet. Second dose of rituxan was July 30.
    This past week has been hard. WG symptoms seem to be worsening when I feel like they should start improving. Pred is wreaking havoc on me emotionally. Has a panic attack the other day. Now taking meds to help anxiety and sleep. Probably talking to psychologist soon too.
    Iím just wondering if anyone has some reassuring advice for me. How long till you started to see effects of rituxan after second dose? Do you see setbacks on your road back from a flare? How do you cope? What alternatives exist if rituxan doesnít do the trick and pred isnít holding down the Fort?
    Thanks. Iím losing my mind a little as my body acts up.

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    Default Re: Flare up Freak out

    Quote Originally Posted by drz View Post
    I also had a flare after my Covid-19 vaccination and am still trying to recover from the treatment, mainly the high dosage of pred meds which started at 60. I am down to 15 but some issues that went away at high pred dosage like nose bleeds are reappearing again. The dry eyes with vision problems and dermatitis are the most bothersome now along with a serious shortness in breath that makes me unable to walk more than a few feet without huffing and puffing. I gained 22 pounds and the pregnant look and moon face from pred meds. Plus my Blood glucose levels went up 50 points and my insulin usuage.

    I have lost half my visual field in one eye since the flare. Increased Blood Glucose levels probably caused an increase in my glaucoma pressure and damaged my eye. I had my last RTX treatment over 6 months ago. Doctors have attributed most of my problems to the high dosage of pred needed to treat the GPA but I have not seen any improvement as the dosage went down from 60 to 15. My snack attacks and low blood glucose episodes have declined a bit so that is good. But it is frustrating as I keep hoping for other things to improve. I used to walk a mile a day with no problem and now just getting dressed wipes me out. I have been to ER several times as my heart has raced up to 150 beats a minute when I am struggling to breath. My pulmonary function tests showed a significant decrease but x rays show no new damage in lungs. Heart evaluations have been OK with no heart attacks yet.

    I don't know if it was the RTX or high pred meds but several issues disappeared after treatment for GPA. I no longer needed surgery for prostrate issues and?? physical therapy for torn meniscus in my knee. Nose bleeds went away but fatigue became a bigger problem and that has only gotten worse. I didn't need the sinus rinse as often or eye drops for dry eyes. But now at lower pred meds and six months after RTX some issues like dry eyes and prostrate issues are reappearing.

    I was smoldering before the flare and still think getting the vaccination was right choice cause it reduced my fear of death or serious illness from Covid infection but I didn't expect the treatment and hopefully eventual recovery to remission to be so difficult or long.

    I agree these flares take awhile to get under control - it's a stupid complicated disease. I just wanted to ask, have you been checked for a pulmonary embolism? It won't show on a x-ray.

    I hope you are both better soon!

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    Default Re: Flare up Freak out

    Quote Originally Posted by JeanMarie View Post
    I agree these flares take awhile to get under control - it's a stupid complicated disease. I just wanted to ask, have you been checked for a pulmonary embolism? It won't show on a x-ray.

    I hope you are both better soon!
    Yes I did the radioactive tracing to detect any blood clot and there was none. My shortness of breath seems worse as I reduce the pred meds but unsure if there is any relationship between the two.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Flare up Freak out

    Thanks everyone. This flare has been quite a rollercoaster! Rituxan has kicked in and seems to be doing its job. Iím also taking 1000mg of cellcept. Itís the prednisone thatís killing me. Iíve had serious anxiety and panic attacks, and I have never felt anxious before. Ive started some psych meds to help with this, but my doc wants me off pred ASAP. I started at 80 mg on July 1 and slowly went down beginning in the third week of July. I was between 30 and 50 for a while. Then I jumped from 30 to 15 almost two weeks ago. Seemed to go ok, but ive just started to feel a little achy (muscles/joints) in the past few days. Wondering if itís delayed pred withdrawal symptoms. Iím supposed to drop to 7.5 this week. Maybe I should do blood work first. Last week CRP was 2.5 and ANCA was neg. Generally really good, but I felt pretty decent too. I need to get off the pred for my sanity, but donít want a flare and then have to increase. Such a tough balance. Iím not sure why pred would be needed at this point if rituxan is working and Iím taking cellcept too.

    FYI- got a tube in the right ear that seems to help but the left was unsuccessful. Just plugged feeling. Not worsening. Back to ENT Friday.

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