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Thread: Managing symptoms and treatment for a flare

  1. #1
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    Default Managing symptoms and treatment for a flare

    I got a 1000 milligrams rituximab a week ago and am scheduled to get the second 1000 next week. I also increased my prednisone meds to 60 mg a day but am also continuing on my AZA maintenance meds during my treatment.

    The last two nights I have experience areas on my legs that become very red and inflamed with extreme itching. Scratching doesn't help. They look as if they have been burned. Regular lotion for dry skin doesn't help much. Some cream for itching helps a little. The other treatment that seems to help some is to put very hot packs on the inflamed area being careful not to burn oneself. The first time it was on the right leg and the second time on the left leg and the inflammation went all the way down to the foot. By morning the inflammation seems to have dissipated and the skin does not look any different.

    I have experienced periodic skin sores in the past as part of the residual symptoms for GPA along with the others that are more frequent than typical like mouth sores, inflammation of the eyelids, fatigue, joint pain, etc. and the treatment so far seems to have relieved most of the inflammation and pain but I have also developed thrush.


    The other problem I'm having is the increased belching from my long-standing Gerd which is probably due to the increase prednisone meds. The acid irritates my esophagus and in the past I have been admitted to the hospital thinking I was developing stenosis of the esophagus. In each case it turned out to be irritation and inflammation caused by the acid from the GERD.I also take the maximum dose each of generic Mucinex to avoid the irritation of my throat from the post nasal drip that results from the sinus damage.


    Since I haven't had to deal with treating a flare for many years I'm uncertain if any of the symptoms are being caused by the rituximab? Or if there are any coping mechanisms that others have found effective in managing such symptoms that I could try.

    I also have type I diabetes for several decades and the increase prednisone is making managing my blood glucose levels very challenging and I frequently have problems either going too high or too low. Usually my Dexcom CGM and do-it-yourself looping system on my iPhone are able to keep me informed enough for me to keep tweaking my insulin levels to keep me safe enough to remain on an outpatient basis though I've had some close calls.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Managing symptoms and treatment for a flare

    @drz

    Wow!! You and your docs have their hands full to get you stabilized. Hope they do so quickly!!

    As for rtx. The drug itself doesnít seem to give me any side effects. I get a slight reaction from the drug cocktail that goes with it. Wakefulness the evening of the infusion and mild fatigue the next day. Thatís about it.
    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: Managing symptoms and treatment for a flare

    I have no idea if this may be related, but I was wondering if the itching occurs in the same spot each time? I’ve been experiencing recurring itchy spots on my neck for several months, sometimes I’ll wake up with blood on the pillow form where I’ve been scratching in my sleep. QV intensive dry skin ointment generally works, but it always seems to come back when I’m trying to go to sleep. More annoying than anything.

    also been getting slight inflammation in my left eye ever since dx. Sorry I couldn’t offer any suggestions, just wanted to share. Anybody else got similar?
    Life lessons for all of us;

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    Default Re: Managing symptoms and treatment for a flare

    DRZ, you have probably tried this for the itching. I keep a bottle of pure magnesium oil spray on my night stand. I get that terrible itch on the same spot on my right foot when I am due for an infusion, and have found the magnesium is the only thing that gives me relief.

    Pete said it right, WOW, you are really having a time of it. Sounds like your docs are going full on with the meds. They know you and they know what you need.

    Sending prayers and warm thoughts to you in MN from the Carolinas.

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    Default Re: Managing symptoms and treatment for a flare

    What has worked best for the inflammations that feel like I am being attacked by a hot iron is to use hot packs or run hot water over inflamed area. The areas even look very red like they have been burned. I was told that this probably breaks down the histamine that is causing the itching and presumably the related pain too. The areas have moved around and vary in intensity. Right leg, left leg, left foot and right arm so far. Lots of different lotions don't seem to help much but I never tried the oil of magnesium before and will look into that one.

    One interesting side of the increased pred dosage is that the previous inflammation of eyelids that required drops several times a day has greatly improved. The other mystery is that I appeared in need of prostrate surgery again due to trouble emptying my bladder and was schedule for Uro-Lift but now I am having no problems at all emptying my bladder. Makes me wonder how much of it was due to inflammation from the GPA smoldering.
    Last edited by drz; 05-15-2021 at 12:18 PM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Managing symptoms and treatment for a flare

    I am wondering now if the hot inflamed areas on my legs could have been an allergic reaction to the meds I was taking for Thrush. I quit those meds and have not had that reaction since.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Managing symptoms and treatment for a flare

    Having suffered GERD and inflammation I found something that helps deal with the throat and eosophagus irritation. I use the Neil med salt/soda packets with a cup of water to rinse my sinus. I found that after a night of reflux and irritation I got a lot of relief from mixing up a warm glass of the salt/soda and gargling as deep and long as possible to wash out the area with saline and alkaline. I even 'inhaled' just a bit at the end to wash out the eosphagus during gargling and found that to be tremendously helpful for when my eosphagus was irritated. I just inhale a bit and then cough it out. I always get some crusting and gook washed out with it and it feels a lot better instantly.
    PS- I have had prostate symptoms improve too after GPA treatment.

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    Default Re: Managing symptoms and treatment for a flare

    Quote Originally Posted by me2 View Post
    Having suffered GERD and inflammation I found something that helps deal with the throat and eosophagus irritation. I use the Neil med salt/soda packets with a cup of water to rinse my sinus. I found that after a night of reflux and irritation I got a lot of relief from mixing up a warm glass of the salt/soda and gargling as deep and long as possible to wash out the area with saline and alkaline. I even 'inhaled' just a bit at the end to wash out the eosphagus during gargling and found that to be tremendously helpful for when my eosphagus was irritated. I just inhale a bit and then cough it out. I always get some crusting and gook washed out with it and it feels a lot better instantly.
    PS- I have had prostate symptoms improve too after GPA treatment.

    My prednisone meds it's been reduced to 40 mg a day but it is still creating problems with my insulin levels. My sinus rinses have been amazingly clear as well as my nasal passages so I don't feel the need to rinse as often. The improvement in my prostrate is very puzzling but apparently the GPA must contribute to inflammation in that area too. I wonder if the improvement will last when my prednisone dosage gets down real low.

    The GERD issues seem to come and go but I've noticed that if I take my prednisone meds with meals I generally have less problems. I haven't had any more of the red inflammation on my legs but I have had several episodes of intense scratching, even to the point I woke up bleeding from scratching too much on my ankle.

    Fatigue and shortage of breath continue to be ongoing issues for me but I hope they will generally improved too.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Managing symptoms and treatment for a flare

    The rise and fall of symptoms can be so mysterious with this illness. I hope yours mysteriously get better soon- I know I've had it happen myself.
    I did read about a guy years ago whose GPA presented as a prostate problem. "I thought, man, it's usually hard to figure out this disease in most cases. It must have been super difficult to connect the dots on that poor guy."

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    Default Re: Managing symptoms and treatment for a flare

    I've been taking 20 mg of Omeprazole for years to control my GERD and it works very well. I asked my Nephrologist about the claims that it may hurt your kidneys and he said it is very rare and not to worry about it. I was buying OTC Prilosec but later found out my PCP could prescribe it and my insurance pay for it.

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