Wegeners and Kidneys

[tomary76]

I was diagnosed in Feb of this year. Went through 4 rounds of Rituxan, now 4 months later 1 round of Rituxan. I am always so tired and its very hard to continue with working. All I want to do is stay home and do nothing. Does anyone know if this will get better. My labs are better which they weren't before. I have no desire to do much of anything. Takes everything out of me just to get up and go to work. Is this common for people when Wegeners affects the kidneys?

[Pete]

Hi,

I was dxed in January 2011 (about 9 months after I retired). I didn't have kidney involvement at the time, but I was pretty wiped out. Once I regained my appetite and the 25 lbs I lost at disease onset (about two months after hospitalization) I knew I needed to get some exercise so I could fight the disease better. I was so weak that I could barely navigate the 100 yards to the street corner and back. So, I just kept trying to add a little more distance every day. After another month, I could walk a mile at a comfortable pace.

Once I got into a medication induced remission, I felt more normal. My exercise regimen (seasonal) is to either walk 3-4 miles 4-5 times a week or to swim 1000 yards twice a week and walk and/or do light resistance training the other days.

I believe exercise and diet are keys to having enough energy to lead a more normal lifestyle. Many of us here have started eating healthier (less sugar, less salt, more fruits and veggies, less processed foods, and less gluten and grain) and I found that helped me have more energy.

Good luck. Hope you get some more pep in your step soon!

[drz]

I was diagnosed in Feb of this year. Went through 4 rounds of Rituxan, now 4 months later 1 round of Rituxan. I am always so tired and its very hard to continue with working. All I want to do is stay home and do nothing. Does anyone know if this will get better. My labs are better which they weren't before. I have no desire to do much of anything. Takes everything out of me just to get up and go to work. Is this common for people when Wegeners affects the kidneys?

It did for me but my case was very severe with kidney and lung damage and loss of hearing. I spent several months in hospitals and nursing home just to recover enough to walk up 7 stairs at one time before needing to sit down and rest before trying the next seven. There was no way I could return to a work situation even on a part time basis but I retired a few months before my initial treatment for Wegs and did not have to deal with trying to work. I couldn't do the chores at home for daily living and had to hire help to do so. But many people who were younger and in better shape and less medical problems have done amazing things that real healthy people can't ever do, like bike hundreds of miles or climb Mt Everest. For me a few years afterward i could again walk a mile slowly and climb two flights of stairs and I feel real good about about how much I improved but also accept that my "new normal" is very impaired from before I got Wegs.

[andrew]

Oh yes indeedy!

Not sure it's exactly to do with kidney involvement though - more to do with the Wegs as a whole and your body getting slammed and trying to heal at the same time. It's entirely possible that your treatment isn't helping your energy levels either. I was totally wiped out for ages after diagnosis but over time (probably a couple years) it got steadily better. It does help to do the bare minimum for a while though even though you may feel guilty for not being 100%. Make getting through your work day your one and only goal. Rest as much as possible at all other times. If you try and push yourself you'll just crash - take my word for it ;) I didn't learn that lesson for years. Eat well as much as possible - a balanced diet with no processed food (but maybe with the occasional cheat :) )

It's awesome your lab results are looking better. That's great improvement!

One other thing you could investigate: depression may be a possibility. It affects a lot of us particularly after a severe bout of illness. It can drain you physically as well as mentally. Just a thought.

In short despite everything - you're normal! :)

[Alysia]

Hi,
Please check the spoon theory....

https://en.m.wikipedia.org/wiki/Spoon_theory

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Hang in there. The beginning is usually the most tough phase. It should get better. Sending prayers. Please update us.

[tomary76]

Thank you all for your comments. I sure hope time helps! At least I'm not alone.

[andrew]

At least I'm not alone.

You are definitely not alone :thumbup:

[hellojulie]

Thank you ALL for taking the time to write. (I did a search for "depression.")
I feel very depressed with this fatigue! I am nearly always encouraged by the grandkids, who live next door, coming over, just hearing them having fun. Now even they can't seem to cheer me. I want to sleep all the time.
For over a month I was stimulated by an almost daily doctor visit or a physical therapy session. (It is seven weeks since my fourth rituximab infusion.) But the past three weeks I wonder if I'm having a flare. I've called the rheum doc, esp to ask about a windpipe-located cough that won't go away. Will keep you posted.

[MikeG-2012]

Be certain to tell all your healthcare team how you are feeling. They all take depression very seriously.

PLEASE, PLEASE ASK FOR HELP!! There is nothing wrong with asking for help, nor is there anything to be ashamed of. It took three different attempts at medications before I finally slipped out of my light depression and started to feel better about myself again.

When we have this awful disease, we all need hope, and when hope is overwhelmed by depression, we all need to know when to ask someone for assistance!

Be well my friend!!

[little jerry]

The beginning of Wegeners is the toughest time of all. When it is stable you can carry on in your new normal. Then you will be able to start exercise and you will have to set new goals to reach. Be patent with other people. I make a 3x5 card or a scrap of paper all the questions I want to ask, and all the new complaints I have, or I will forget them all.

[hellojulie]

The beginning of Wegeners is the toughest time of all. When it is stable you can carry on in your new normal. Then you will be able to start exercise and you will have to set new goals to reach. Be patent with other people. I make a 3x5 card or a scrap of paper all the questions I want to ask, and all the new complaints I have, or I will forget them all.

Yes, I will do that. Thank you for the advice about being patient. I have been walking with my husband, but we just started this week. And I'm so tired when we get back (half a mile each time, twice a day) I sleep for two hours. I am coughing, can't breathe at night the sinuses are so swollen. I have five different docs and the appointments are far apart! But I will start working on letters to mail on Monday! Thank you again.

[gmyi]

Hi

I havekidney involvement since 2006 lately my lab albumin/creatinine ratio becomehigher and also the protein

Havesomeone get something like that my nephrologist said that my kidney are tired

[Alysia]

Hi

I havekidney involvement since 2006 lately my lab albumin/creatinine ratio becomehigher and also the protein

Havesomeone get something like that my nephrologist said that my kidney are tired



Hi Moshe,
how much is your creatinine now ? Do you have protein in your urine ? Do you have other WG symptoms ? How are your labs ?
As we both know too well, docs in Israel are ignorant about wg. So you have to be your own best dr. Its a stupid thing to say by your nephrologist (pardon me, shame on him). Do you have a decent dr. ?
I think that @jvilner (https://www.wegeners-granulomatosis.com/forum/member.php?u=8211) is treated at Sheba. Check with her if her docs are decent.

[gmyi]

Hi Moshe,
how much is your creatinine now ? Do you have protein in your urine ? Do you have other WG symptoms ? How are your labs ?
As we both know too well, docs in Israel are ignorant about wg. So you have to be your own best dr. Its a stupid thing to say by your nephrologist (pardon me, shame on him). Do you have a decent dr. ?
I think that @jvilner (https://www.wegeners-granulomatosis.com/forum/member.php?u=8211) is treated at Sheba. Check with her if her docs are decent.


hi
my creatinine is 2.1 and the proteine is 50 i dont agree that dc.in Israel are ignorant about WG and my nephro. treats me since I was diagnosed

[Lilly]

Please don't ignore these signs of depression!! It is really part of realizing that your life is changed and you are still dealing with that. There is NO SHAME!! Taking care of your depression will help you with all that wegeners comes with. I hope you are doing well. Blessings. Lilly

[Alysia]

hi
my creatinine is 2.1 and the proteine is 50 i dont agree that dc.in Israel are ignorant about WG and my nephro. treats me since I was diagnosed

I am glad for you that your experience with docs is better then mine. 2.1 creatinine is above the normal. Was it allways like that ? Is it new ? Are you on wg meds ? What treatment is your nephrologist suggesting ?

[gmyi]

hi
i am in same level in creatinine since 2007 and i am i very little medication for blood pressure and cholesterol i am not in wg medication since 2007

[Alysia]

hi
i am in same level in creatinine since 2007 and i am i very little medication for blood pressure and cholesterol i am not in wg medication since 2007

Since your creatinine is the same all those years (although higher then the normal) I guess it is not too bad. Sounds like you are in remmision. Are you ? What does your nephrologist say about your wg ?
It is wonderful that you are already 10 years without wg meds. Praise the Lord.

[PattyL]

Hi there,
Hope you are feeling better. Yes , this is very common. I have lung and kidney involvement. diagnosed about 25 yrs ago. Just trying to recover now from a flare. I was hospitalized for about a week. I had rituxan about 18mos ago. but had to stop because I had the JVC virus antibody which could have been fatal if the virus was to come alive. Very scary. Rituxan is a good drug just wish I could of stayed on it. Now I'm going to start cytoxin infusions. Hope we all get into remission. Feel better soon.

[gmyi]

Hi
yes i am in remission since 2007 i wish you all to be in remission pronto