Managing symptoms and treatment for a flare

[drz]

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.

[Pete]

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 doesn’t 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. That’s about it.

[Peter Marsham]

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?

[Masha]

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.

[drz]

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.

[drz]

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.

[me2]

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.

[drz]

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.

[me2]

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."

[GPA4Me]

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.

[drz]

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.

I have been taking 80 mg of propranolol (generic Protonix) for years for my GERD which is double the usual recommended dosage. I have to get an exemption from insurance each year to get it covered.

[drz]

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.

Fatigue can shortness of breath from any exertion has become a very significant issue for me. I can no longer walk more than a few feet without feeling short of breath. My pulse rate and respiration rate increase 50% from any exertion. I have been to the ER room three times and they don't have a clue as to what this causing my symptoms. The only lab that looks at all different is my white blood count which is about double its normal level for me. My CRP has dropped back into the normal range.

I have done three chest x-rays and Doctors say they look fine and claim my lungs sound clear. One doctor prescribed an antibiotic thinking maybe I could have an infection that they can't locate but it does not seem to have resulted in any improvement in my condition but I still have four days left on it. What puzzles me is before my flare I could easily walk a mile without any difficulty and now I can NOTeven do one flight of stairs or walked more than 50 feet without being totally exhausted himand short of breath.

My last rituximab treatment was three weeks ago and I'm currently on 35 mg of prednisone. I tried going down to 30 but then got a lot of bloody mucous in my sinus rinses. I am also taking medicine currently for thrush. I also had to go back on my pentamadine treatment and had my last 2 weeks ago.

[NatriceRomeo]

Dr Z,
Several weeks ago I felt that I was getting pneumonia. I went to my Dr & she said I sounded clear (I had been using inhalers) & she felt that I had a PE. My chest X-ray was normal and she sent me to the ER. They did a CT scan that showed I had pneumonia. I’m not sure why it didn’t turn up in X-ray maybe it was just beginning. I strongly feel that if you feel there is something wrong there is something wrong. Perhaps you need either a CT scan? Also, how is your heart? Is there a chance you have congestive heart failure?
Good luck
Natty


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[drz]

Dr Z,
Several weeks ago I felt that I was getting pneumonia. I went to my Dr & she said I sounded clear (I had been using inhalers) & she felt that I had a PE. My chest X-ray was normal and she sent me to the ER. They did a CT scan that showed I had pneumonia. I’m not sure why it didn’t turn up in X-ray maybe it was just beginning. I strongly feel that if you feel there is something wrong there is something wrong. Perhaps you need either a CT scan? Also, how is your heart? Is there a chance you have congestive heart failure?
Good luck
Natty


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It took several weeks and several trips to the ER before my rheumatologist who treats my GPA was able to sort out my issues. The local doctors kept telling me they didn't find anything to explain my extreme fatigue and shortness of breath. It turned out that the prednisone was increasing my heart rate to the point it was not filling up with oxygen leading blood but kept trying to pump it out faster. When my heart rate was fluctuating from 50 to 150 they evaluated me more extensively for a heart attack and uncovered information that allowed my rheumatologist to correctly diagnose my issues. This included a CAT scan and ultrasound of my heart. They doubled my blood pressure medicine which cut my heart rate back down to a normal range of being under 90 and usually in the 70s or 80s. It did puzzle me as to why it took them a month to figure out how to reduce my elevated heart rate.

It had been 2 1/2 weeks since my last rituximab treatment so they are cutting back on my Azathioprine maintenance meds and working on slowly tapering my prednisone down. I am currently at 30 mg a day and 100 Azathioprine for maintenance. They believe that once I get back to lower dosages of prednisone my heart dysfunction will disappear since there is no physical problem present.

The biggest concern right now is my extremely high risk of any infection since my leukocytes are extremely low. Most people with AIDS have about twice as many as I do so I have to continue to self quarantine.

[Alysia]

Has anyone heard from drz in the last 10 days or so ? I am worried about him... drz please let us know how are you doing. I pray for you.

[Alysia]

I just found a post from yesterday. So I hope it means that you are well, drz.

[Pete]

The Vasculitis Foundation and the American College of Rheumatology just published their guidelines and recommendations for treating ANCA Associated Vasculitides.

https://www.vasculitisfoundation.org/wp-content/uploads/2021/07/2021-ACR-VF-Guideline-for-Management-of-ANCA-Associated-Vasculitis.pdf

[drz]

I just found a post from yesterday. So I hope it means that you are well, drz.

I had a biopsy removed today that tested positive for skin cancer. Sort of interesting to watch the surgical procedure but know it will take a long time to heal and I expect the itching will be a issue as it heals. I am still on 25 mg of pred and having shortage of breath from any activity. It will take awhile to get back down to lower dosage where my heart rate will go back to normal and fix this issue for me. At least that is what my doctors tell me. A GPA flare is a great way to work on increasing ones patience.

[drz]

My health has been mostly the same. The only big issue I have had while trying to recover from the flare induced by Covid vaccination was developing a sharp pain in right shoulder that made it very painful to use that arm. The doctors that evaluated it said it was not a frozen shoulder which I had before years ago. When the pain moved down to my arm that night I knew it was a GPA related pain. It turned out that the bicep muscle had detached or popped off the top connection which relieved the acute pain in shoulder but then the pain in the arm was from swelling from detachment. Later evaluation by ortho department said I was lucky it detached on top since then nothing further is required. If it happens on the bottom they need to do surgery to cut the top one to reduce the pain. The remaining bicep muscle takes over the function and gradually becomes stronger and the detached muscle atrophy and the pain decreases as the swelling goes away.

This was a strange new problem for me but I remember being warned that high dosage of pred meds weakens our tissue so we need to be careful not to tear anything. There was no strain or heavy load on shoulder or arm that I can remember and it seemed to develop over night.

It has been 5 months since last RTX treatment and I am still on 20 mg pred and 75 of AZA and waiting for next labs to see if I can lower the pred meds more. I have serious shortage of breath from the higher dosage as it messes up my heart rate which races up to 130 from any activity. The good news is evaluation indicates no physical problem or deterioration in my lung damage or heart's physical condition and things should get better if I can just get lower on the pred meds without having the GPA flare back up again. I have a secondary autoimmune issue too with eczema on my scalp that causes inflammation of eyelids, sores on scalp, and dry eyes that require extra eye drops to treat. My main GPA symptoms are better and mostly mild at this time.

I am considered at risk of getting reinfected even though fully vaccinated given my health issues so I continue to be careful and limited in my social interactions. I also lack the energy to do much other that the basics of daily routine.

Our area has also had several bad air warnings from forest fires near us which encourage us with lung damage to stay inside.

[drz]

My pred dosage is being reduced to 15 per day and hope it helps with heart racing and shortage of breath without any increase in GPA symptoms.

[J@$0N]

My pred dosage is being reduced to 15 per day and hope it helps with heart racing and shortage of breath without any increase in GPA symptoms.

I hope that you are beginning to feel better. Prednisone made my heart race as well. Did they give you anything to counter act it?

[drz]

They doubled my blood pressure It meds. helps but i still race up to 133 at times just from a short walk or any activity like tying my shoes, but often get too low (42) if sitting a long time.

[J@$0N]

Sorry to hear.. we first realized my reaction to the prednisone before diagnosis when we were treating joint pain. I'd only taken the first round of the prednisone pack and woke around 3am with heart rate at 170. It is great for what it does, but can also destroy the body.. have they tried any type of anxiety meds to treat the heart rate?

[drz]

Sorry to hear.. we first realized my reaction to the prednisone before diagnosis when we were treating joint pain. I'd only taken the first round of the prednisone pack and woke around 3am with heart rate at 170. It is great for what it does, but can also destroy the body.. have they tried any type of anxiety meds to treat the heart rate?

If I am still my pulse is usually in the 80's but races upward from any activity.

[chrisTIn@]

Hi drz. Haven't seen you writing here for a while.
I hope your symptoms are 'manageble', and that your heartrate is within the normal range again.