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Chadwyck
02-23-2021, 02:02 PM
Hello everyone. I tried coming on regularly over the past couple months just to say hello to everyone until I started getting sick again. I just thought it was a typical day for me and overlooked it. Talk about 5 non-stop days of living hell. I felt like I was at the beginning, only this time I'm not waiting for a diagnosis, but a confirmation of active disease or just minor bumps along the road.

Day 1: General aches and pains during flu/Covid times. I continued my days as usual, no complaints made to any doctors.
Day 2: Same as day one but addon the chest discomfort and hearing wheezing sounds every time I inhaled. I started documenting things from this point onward.
Day 3: Everything the same but now my skin was burning below the knees. It felt like somebody threw gasoline on my legs and set them on fire.
Day 4: All of days 1-3, just add on the first minor nosebleed that ended within 3 minutes.
Day 5: All the pain in my skin was gone, chest discomfort gone but had a massive nose bleed that I couldn't stop. This lasted almost 20-30 minutes!!! It poured like a faucet and made the bathroom look like a major crime scene.

I reported all of this to my Rheumatologist. The office did get back to me the next day. They still warned me about prednisone during Covid-19...if I go on it it will double my chances of being hospitalized for Covid. I decided not to go on it based on that information. I did my regular blood & urine tests that were due later on. I had a gut feeling that the nose bleed wasn't the actual problem, but the warning sign that other bad things were happening internally that you can't see just from looking at me. I got the results the next day and boy oh boy... was I ever right! The kidneys took a massive hit compared to where the numbers were previously. At the beginning close to my Wegener's diagnosis, I did get a separate diagnosis of RPGN, rapidly progressive glomerulonephritis. I was wondering if active disease caused this to come back. So far, Rheumatology and Nephrology to this date, have not suggested anything with the results of my lab work. So I thought, no news IS GOOD NEWS! :flapper: But then today, I had my appointment with the Urologist as my follow-up from 6 months ago. He looked at my most recent blood and urine tests and he was very concerned about the amount of blood and protein leaking into the urine. The only thing that looked normal was my name, date of birth and phone number. LOL We discussed where my creatinine and eGFR levels usually are and they were totally off the charts. He said, "I need to know if it's your bladder or further up in the kidneys." That tells me that he and the kidney doctor need some more blood & urine tests done. I'm ok with that because I'm curious too. I know from my own past experience that kidney involvement often gives off no symptoms until it's too late.

Now that I've spilled the beans.... I know that Wegener's has used up all it's vacation days and it is now back to work trying to destroy me... what do I do from here onwards from a patient's point of view? What is it about my kidneys that this disease loves so much? They were the last to get attacked yet the first that needs to be investigated. Any input from anybody is appreciated. I'm just worn out from all of this but still optimistic. I'm just worried that the road to dialysis is coming up close. If I have to, I have to. But is there a way to get things in check as a preventative measure?

Peter Marsham
02-23-2021, 04:42 PM
Dude, sorry to hear about the flare, itís something we all have to monitor for. Taking notes was a good idea as soon as you felt strange. In answer to your query; Wegs loves kidneys so much because theyíre dense with small blood vessels and capillaries, exactly what the disease loves to target. Thatís why it can involve lungs/airways and digestive tract as well.

but, there is good news. If your urologist has identified kidney involvement, fast treatment can halt the progress of degeneration. That treatment will involve steroids and possibly Rituxin infusions (donít worry about the RTX though, itís boring), combined with diligent monitoring and blood tests for the next few months.

just follow your rheumatologistís advice, rest as much as you can, and let us know how youíre going.

EDIT: one other thing to consider is, as you probably know, with prednisone and Ritux, your immune system will be affected. If youíre in line for the COVID vaccine, it may be best to treat the Wegs first and self-isolate until your numbers come back down.

richard052018
02-24-2021, 01:46 AM
Just my $0.02, but I'd rather deal with COVID than deal with end stage renal disease. I'd be on some prednisone immediately if there was blood in my urine. Use curbside pickup for your groceries, work at home if you can. I've come to the realization quickly that I'll be shopping on my phone instead of a store for the rest of my life.

Best of Luck to you

Chadwyck
02-24-2021, 08:12 PM
This really helps a lot, thank you! Sometimes I believe it's best to get advice from other Wegener's patients; especially if they've had it longer than me. I find that I often forget how bad it can get. When it strikes again years later, that's when I say, "OH YEAH... I forgot about this part, yes, it can do this to me!"

Chadwyck
02-24-2021, 08:16 PM
I totally agree with you on everything. Curbside pickup is harder for me financially because everybody's charging Covid prices. Odd how today is a perfect day compared to yesterday! I can't believe I'm the same person just 24 hours apart. The only thing I know I can do is work from home. I've been doing that for years; even on disability. Shopping at home for life?? LOL That's my plan. Amazon must be tired of me by now.

richard052018
02-25-2021, 01:59 AM
Check with your local grocery chains to see what's possible in terms of curbside. My local grocer, Food Lion, has partnered with InstaCart to use their technology to put its entire store online. If you spend $35 on groceries, they will fill the order for $1.99. Not a bad deal. Target has most items and will do curbside for free (I find the freshness of the food isn't a good as that of a grocery store, even non-perishables the expiration date is much sooner). Wal mart doesn't charge much as I understand, but they are always out of stock of certain items.

Please work with your doctors to get treatment (or find new doctors: the nonchalant attitude of your doctors over something so serious infuriates me). Keep us up to date on how you are doing.

Chadwyck
03-02-2021, 04:16 AM
Well peeps, today is March 1st 2021... it's a new month which requires blood work, no urine this time. It's the Urologist and I that were curious as to why the kidneys are misbehaving. So I've got my appointment within the next hour. Tomorrow when the results come in, I'm just going to skip everything right down to the kidneys to see what's happening. If they return to normal, which has happened in the past, then I can forget about it. If it stays the same, which has also happened in the past, we can still forget about it. But if it gets worse, I'll forget about it until the doctors worry. LOL All I care is that the severe nose bleed exactly 3 weeks ago today has not happened again! Yay! I had a slow weekend with fatigue but that was about it. Wish me luck!

Thank you everybody for all your input. It's so nice to be able to talk to other people who know what I'm talking about without having to explain it like when I'm talking to the general public. It makes the biggest difference in the world.

Chadwyck
03-04-2021, 03:59 PM
Hello everyone. Just out of curiosity, does mild decreased kidney function cause dry itchy skin?? That started yesterday but I thought it was from the cold winter weather, so I ignored it. Just now I decided to have a hot shower to soothe the dry feeling and when I looked at my legs they were very white and flakey looking. But the ankles looked like they were just starting to swell. I know swelling is a sign but if it wasn't for the shower, I would have never taken off my socks and jammy bottoms to even know something new was going on. And from your expertise/experience in this, would you recommend that I say something to the nephrologist and/or rheumatologist tomorrow; considering neither of them have called me about my blood work?

Peter Marsham
03-05-2021, 05:05 AM
Skin irritation (along with joint pain) was one of my first symptoms. I had angry red rashes come up over my torso and upper arms, itchy as hell and no indication of their cause. A dermatologist did some punch biopsies on me and identified a “bacterium,” and gave me several tubes of a topical steroid called Eleuphrat, as well as recommending QV bath oil (I don’t know if it’s available in your area, but in Australia it’s over-the-counter). That actually helped relieve the rash until I got my first diagnosis. As far as kidney involvement, the adrenal glands are right on top of the kidneys, and can do some funky things to your hormones (just google John F. Kennedy and his Addison’s Syndrome.)

another possibility is maybe a skin infection from a depressed immune system. Either way, definitely let your primary specialist know. And report back, every little bit of info helps here.

Chadwyck
03-05-2021, 05:28 AM
Thanks for your input. It never occurred to me that the immunosuppressive drugs could also be part of it. Every day something new is messing with me, but not as bad as the beginning. I just faxed the Nephrologist all my new symptoms with the weekly blood pressure and other vitals he asked for. Maybe my documented information with the new symptoms will alert him with something. I had some friends on Facebook talk about "Tea tree oil". You know anything about that? Actually 2 people said that to me. One of them is a hair dresser and he hears about scalp problems in his job all the time just from doing his job. My mom just dropped off some hair oils as a quick fix... last night I had a hot hot hot shower and believe it or not, it stopped! But I think the heat is only a quick fix just like the joint pain. Hot water always gives me that relief so I don't have to take pain killers. I can't stand NSAIDS... they add to the kidney problems.

I also forgot about the adrenal glands. I was only aware of them when prednisone took over my life for 3 years. LOL Thanks for your input... I'm hoping the kidney clinic gets back to me in time for the weekend.

Peter Marsham
03-05-2021, 06:44 PM
yes, isn’t it strange and wonderful how this disease can appear in soooooo many different ways? Just makes me weep with joy at the variety of life.

Generally, I wouldn’t trust anything I read on Facebook unless I can independently verify it, but from memory, Tea Tree Oil may help the inflammation, and if it does, use it wisely and well. Just keep in mind the pure oil may cause contact dermatitis, in which case stop applying straight away. And don’t ever swallow it. That said, steroid cream or ointment is probably a better alternative, especially if it’s allergy-related (immune disorder, allergens... eh, you get the picture.)

https://www.mayoclinic.org/drugs-supplements-tea-tree-oil/art-20364246

Chadwyck
04-23-2021, 12:53 PM
Hello overyone, sorry I haven't been on here in almost a month since my original post. I finally had a conversation from my March 31st 2021 appointment with my Rheumatologist. She said that my kidney function has declined rapidly from February to March. She's so concerned that she called in the Kidney doctor quickly. My appointment with the kidney clinic isn't until August 6th. They called me last week and told me that my new appointment is April 28th. Wow, that was fast! So because of how fast they're moving to look into this, now I'm starting to panic. Just April 5th from that blood work, it showed that they kidneys improved tremendously...then again, that could be a short term good news thing. The fact that 2 specialists are worried about kidneys that aren't in their own bodies... yes I'm freaking. I'm starting to notice that every day that goes by, I'm doing the count down... the way people are excited to go on a cruise, on a vacation or to a concert. I'm doing it in the freakazoid way, count down to Kidney hell. How do I control my nervousness? The first time this happened in 2009, it was much worse, but because I didn't understand Wegener's/Vasculitis, nor know how to pronounce it, I was ok being sick the way I was. Does Wegener's cause RPGN, rapidly progressive glomerulonephritis? I've heard all sorts of bad things about the kidneys when Wegener's attacks them. I don't understand, I feel fine now. The February flare is long gone over, why is this happening?

GPA4Me
04-23-2021, 10:49 PM
If you are taking any NSAIDS such as Ibuprofen, Aleve, or Aspirin, stop immediately! They will destroy your kidneys also.

Pete
04-24-2021, 12:17 AM
If you are taking any NSAIDS such as Ibuprofen, Aleve, or Aspirin, stop immediately! They will destroy your kidneys also.

I ask out of ignorance and confusion: what analgesics can people with kidney issues take safely? I have stage 3 CKD thanks to GPA.

drz
04-24-2021, 01:28 AM
I ask out of ignorance and confusion: what analgesics can people with kidney issues take safely? I have stage 3 CKD thanks to GPA.

My doctors told me to only take Tylenol for over the counter stuff. Most prescription stuff will be OK since they know your record.They also have me take a low dosage aspirin daily to try reduce my risk of strokes and heart attacks.

GPA4Me
04-24-2021, 05:52 AM
Tylenol is ok OTC. I am taking Hydrocodone for my lower back pain. It is metabolized by the liver.

gilders
05-03-2021, 06:53 PM
I ask out of ignorance and confusion: what analgesics can people with kidney issues take safely? I have stage 3 CKD thanks to GPA.
Opioid based drugs are generally safe for kidneys, but doctors are now very cautious prescribing them due to misuse and addiction. I use them, but they become ineffective quickly with me, unless I increase the dose. I can't repeatedly increase dose so I tend to stop taking them and when I recommence a good while later, they have regained some efficiency.

gilders
05-03-2021, 06:56 PM
Hello overyone, sorry I haven't been on here in almost a month since my original post. I finally had a conversation from my March 31st 2021 appointment with my Rheumatologist. She said that my kidney function has declined rapidly from February to March. She's so concerned that she called in the Kidney doctor quickly. My appointment with the kidney clinic isn't until August 6th. They called me last week and told me that my new appointment is April 28th. Wow, that was fast! So because of how fast they're moving to look into this, now I'm starting to panic. Just April 5th from that blood work, it showed that they kidneys improved tremendously...then again, that could be a short term good news thing. The fact that 2 specialists are worried about kidneys that aren't in their own bodies... yes I'm freaking. I'm starting to notice that every day that goes by, I'm doing the count down... the way people are excited to go on a cruise, on a vacation or to a concert. I'm doing it in the freakazoid way, count down to Kidney hell. How do I control my nervousness? The first time this happened in 2009, it was much worse, but because I didn't understand Wegener's/Vasculitis, nor know how to pronounce it, I was ok being sick the way I was. Does Wegener's cause RPGN, rapidly progressive glomerulonephritis? I've heard all sorts of bad things about the kidneys when Wegener's attacks them. I don't understand, I feel fine now. The February flare is long gone over, why is this happening?
Hi Chadwyck.
I've not visited the forum for a while, so missed your post. How are your kidneys doing now?