Protein in kidneys

[Vero84]

Hi guys, hoping everyone is good. I’ve been a little nervous. As I said on my last post, my doctor monitores my blood every 2 weeks and from 60mg of prednisone he has been tapping it down little by little and now I am up to 15mg. Feeling much better In A certain way but every time I go see him he sais “everything looks much much better, but your protein in the kidneys is not going down” I’m a lil concern in what to do to help my kidneys feel better. Do you guys know of anything? I mean I asked my doctor if I should go see a Kidney spec. And he said no, that Rtx is the biggest and best treatment for the kidneys, and prednisone. That we can worry abt that later, for now is suppressing the flares which I haven’t had any since September and after my first Rtx treatment my levels of protein in the Kidneys did went down a bit. But it looks like they’re not getting better after that change. Since Nov. no change. That’s my crazy for now, other than that on Christmas Day, i decided to cook pork and a whole feast, coquito with vodka shots (I only had one) I was hosting for my family at my place and everything was so great, i did stop eating red meat since the Kidney Biopsy. We were having such a great time and as soon as I sat to rest after dinner, one of my hands fingers cramped up. But it was so sudden, my middle finger was just straight couldn’t closed my hand and my whole right shoulder felt in pain. I though it was a heart attack but I was like that’s the left arm. So I ran to the bathroom and my husband saw my face while running and I cried and cried telling him a flare was coming again. And he’s like “maybe it was the alcohol? Or the meat? You can’t eat or drink those stuffs” he massage my hand and put it in warm water and it got better. So I don’t know what was that, that’s the only scared I had since my last post. I’ve been okay after. I’m just paranoid guys. I think it has a lot to do with what we eat. I have to eat healthier. Hope all of you had an amazing Christmas and a Happy New Year. 🎈

Veronica

[Pete]

If the protein level is stable and you feel well, it’s probably nothing to get terribly worried about — echoing your doctor’s thinking. My creatinine has been stable just above the top of the normal range for several years. My doctor said that as long as the trend is stable and I feel good, I shouldn’t be concerned.

As for the cramps in your hand, prednisone leaches potassium from your system. My doctor recommended eating at least one banana a day to keep my potassium level up. This should reduce the cramping. She also suggested drinking tonic water to relieve the inflammation. (Note: The tonic water you buy in the grocery store has a lot of high fructose corn syrup or other artificial sweeteners, so use it sparingly.)

[Alysia]

Hi Veronica,
How much is your creatinine ?
I dont think that consulting with a nephrologist (kidneys' dr) is a bad idea. Getting a second opinion won't hurt.
Rtx should help but it might take time. How long ago did you get it ?

[Vero84]

If the protein level is stable and you feel well, it’s probably nothing to get terribly worried about — echoing your doctor’s thinking. My creatinine has been stable just above the top of the normal range for several years. My doctor said that as long as the trend is stable and I feel good, I shouldn’t be concerned.

As for the cramps in your hand, prednisone leaches potassium from your system. My doctor recommended eating at least one banana a day to keep my potassium level up. This should reduce the cramping. She also suggested drinking tonic water to relieve the inflammation. (Note: The tonic water you buy in the grocery store has a lot of high fructose corn syrup or other artificial sweeteners, so use it sparingly.)

Hi Pete,

Thank you for all that info, it’s good to know about the potassium. I love bananas I do eat them often. I’ll make sure I have one a day from now on. I’ll try to get the tonic water as well. Thanks for the info. Hoping you are doing good.

[Vero84]

Hi Veronica,
How much is your creatinine ?
I dont think that consulting with a nephrologist (kidneys' dr) is a bad idea. Getting a second opinion won't hurt.
Rtx should help but it might take time. How long ago did you get it ?

Hello Alysia,

Creatinine is at 1.45, last Rtx was on Nov 3rd. And about the Nephrologist I also though the same thing, but doctor said that the only treatment really is Rtx and I should give it time. This is how all this started, back on May 2018 I had my first flare and none of my kidneys or lungs where at risk. But waiting from May to Sept kidneys got bad. Now they working at 50% only. And I was seeing an Infections Disease specialist, an ENT, Rheumatologist and Nephrologist for 4 months and none of them could tell me what I had. I’m just scared that they get worst and I will loose them completely bc I just waited. I’m not sure what to do.

[gilders]

There's really only 2 ways to stop kidney failure progressing.
Firstly, keep your blood pressure within a healthy range (keep salt intake low, healthy weight, etc)
Secondly, keep whatever caused the kidney damage under control - In your case try to stay in remission from Wegener's.
Seeing a kidney dr won't harm you, but at this this stage, there's only the above 2 options that will help. Just make sure that you get your routine blood tests to include any that are kidney related. If creatinine caries on creeping upwards, then go see a renal specialist.

Just be careful about reading advice online about "kidney diets". You will read things like "become vegetarian and your kidney function improves". This is based on you achieving a lower creatinine count. True, if you cut out meat, you'll have less creatinine in your blood, but it doesn't mean your kidneys are working better (you've just ingested much less creatinine).
Banana's were mentioned earlier which are high in Potassium. You'll read that Potassium doesn't get filtered out of your body when you have failing kidneys. This will lead to high blood potassium levels which will effect your heart and possibly cause heart attack. Again there is some truth to this, but you kidney function has to be severely depleted before this occurs (I have been on the high end of normal for Potassium since kidney function dropped below 18%, now I'm at 9% and it's eventually raised above normal, so will now have to reduce my potassium intake).

[Masha]

Veronica,
My inclination on the kidneys is to listen to Gilders. He has been down a long, hard road on this and speaks from experience.
My first thought and still is, that I am wondering why your doctor said no you should not see a specialist. One of the first questions that I asked my Rheumatologist was ‘What if we see some activity in the lungs or kidneys?’ He gave me the answer I expected to hear. “We will get you into a specialist for that area.” Since I noticed in one of your threads that you already have a kidney specialist, then by all means, request his input.
Glad to hear you had a good Christmas Day. It may not have been the little pork or alcohol that caused your problem. It may have been the stress of hosting. Even though it was fun stress, it was stress non the less. Sometimes this disease gives us boundaries, and when we go beyond those boundaries we may be creating stress we don’t even realize. We have read on this site of people returning from a great vacation only to have a flare. Don’t get me wrong, we don’t want to eliminate all the things we enjoy, we just learn to do them at a different pace.
Glad to hear you are able to come down from the Prednisone. I will write about my latest experience in another post.
Be Well.
Masha

[Vero84]

There's really only 2 ways to stop kidney failure progressing.
Firstly, keep your blood pressure within a healthy range (keep salt intake low, healthy weight, etc)
Secondly, keep whatever caused the kidney damage under control - In your case try to stay in remission from Wegener's.
Seeing a kidney dr won't harm you, but at this this stage, there's only the above 2 options that will help. Just make sure that you get your routine blood tests to include any that are kidney related. If creatinine caries on creeping upwards, then go see a renal specialist.

Just be careful about reading advice online about "kidney diets". You will read things like "become vegetarian and your kidney function improves". This is based on you achieving a lower creatinine count. True, if you cut out meat, you'll have less creatinine in your blood, but it doesn't mean your kidneys are working better (you've just ingested much less creatinine).
Banana's were mentioned earlier which are high in Potassium. You'll read that Potassium doesn't get filtered out of your body when you have failing kidneys. This will lead to high blood potassium levels which will effect your heart and possibly cause heart attack. Again there is some truth to this, but you kidney function has to be severely depleted before this occurs (I have been on the high end of normal for Potassium since kidney function dropped below 18%, now I'm at 9% and it's eventually raised above normal, so will now have to reduce my potassium intake).

Hi Gilders,

If you only knew my face reaction after I read your post. Thank you. I actually went to research yesterday night abt kidney healthy meals and I read just what you said (enrolled in Davita Kidney Health meal plans). And itÂ’s crazy I read that even too much water can damage your kidneys at one point. All of this is so scary, it looks like so much work that IÂ’m already exhausted. IÂ’m sorry about your kidneys God IÂ’m so sad for you. I really hope this changes for you and you get better IÂ’ll be praying.

IÂ’m eating bad, i donÂ’t take care of my salt or sugar or regular milk. I have to get myself together soon. I took out red meat but thatÂ’s about it. Thank you so much for your advise and sharing your experience. It really helps me.

[Vero84]

Veronica,
My inclination on the kidneys is to listen to Gilders. He has been down a long, hard road on this and speaks from experience.
My first thought and still is, that I am wondering why your doctor said no you should not see a specialist. One of the first questions that I asked my Rheumatologist was ‘What if we see some activity in the lungs or kidneys?’ He gave me the answer I expected to hear. “We will get you into a specialist for that area.” Since I noticed in one of your threads that you already have a kidney specialist, then by all means, request his input.
Glad to hear you had a good Christmas Day. It may not have been the little pork or alcohol that caused your problem. It may have been the stress of hosting. Even though it was fun stress, it was stress non the less. Sometimes this disease gives us boundaries, and when we go beyond those boundaries we may be creating stress we don’t even realize. We have read on this site of people returning from a great vacation only to have a flare. Don’t get me wrong, we don’t want to eliminate all the things we enjoy, we just learn to do them at a different pace.
Glad to hear you are able to come down from the Prednisone. I will write about my latest experience in another post.
Be Well.
Masha


Hi Masha,

Yes I see that Gilders has a lot of knowledge. It makes a lot of sence Bc it’s not only reading and following your doctors order but truly how you feel inside with every act you do. And you feel it, your body tells you when you doing wrong or something is wrong. So I’m going to change my diet to a healthier one. That’s going to be hard Bc with kidney problems and checking all the potassium and everything else you need to eat it’s a lot to look forward too. But I have to do it.

Yes Masha! You know I also though of stress, Bc why would I get that reaction for eating so little meat or having one little shot of coquito. That really threw me down to cry Bc I really though that I would never be able to enjoy with family and be normal. It was depressing. But I had a lot To cook and clean and decorate so I have to learn how to tone it down a nudge when I host. Thank you so much for replying! I’ll be waiting for your update post. Hugs and kisses

[gilders]

Veronica,
I'm glad you mentioned about "water". I should have wrote "3 ways to stop kidney failure progressing", rather than "2", because dehydration will caused harm to your kidneys. The confusion about limiting water is due to the fact that when your kidneys have almost completely failed, you no longer produce urine (or produce less urine then the amount of fluids you intake). Dialysis will remove excess water, but you do have to seriously limit your intake (dependant on which type of dialysis you choose). Like I mentioned earlier, I'm at 9%, and still drink plenty. Admittedly, I have a little oedema around my ankles, my hands swell a little when it's hot and I'm exercising, and I do take a diuretic, but I can drink as much as I like.

Hopefully this will help put your mind at ease a little - I was first diagnosed with Wegener's aged 17 (almost 24 years ago) and at the time my kidneys were damaged to the extent that I needed dialysis. Fortunately they recovered well (I don't remember the exact % function) and I only needed dialysis for a few weeks. Since then my kidney function as only dropped during flares, i.e. while I've been in periods of remission my function has been stable. This changed after my last flare which brought my kidney function below 18%. Once your function gets below 20% you kidneys will deteriorate even without having a flare (this deterioration may be very slow, over many years).
So, as you are at 50%, your kidney function is unlikely to drop so long as you remain in remission. Even if you do flare, prompt treatment will help prevent further damage to kidneys. Research and improved treatments over the years since I was diagnosed, has put you in a good position for keeping that function above 20%.

Just eat a generally healthy diet, don't worry about the odd alcoholic drink, I was a HEAVY drinker from aged 17 to 30. However bad your diet previously was/is, the only way it may have had a bad effect on your kidneys is if it has caused you to have high blood pressure for MANY years, so don't blame your lifestyle for lack of kidney function.
Masha is correct about stress and I have flared during periods of stress, so wherever possible, try to be stress free (much easier said than done).

[Vero84]

Veronica,
I'm glad you mentioned about "water". I should have wrote "3 ways to stop kidney failure progressing", rather than "2", because dehydration will caused harm to your kidneys. The confusion about limiting water is due to the fact that when your kidneys have almost completely failed, you no longer produce urine (or produce less urine then the amount of fluids you intake). Dialysis will remove excess water, but you do have to seriously limit your intake (dependant on which type of dialysis you choose). Like I mentioned earlier, I'm at 9%, and still drink plenty. Admittedly, I have a little oedema around my ankles, my hands swell a little when it's hot and I'm exercising, and I do take a diuretic, but I can drink as much as I like.

Hopefully this will help put your mind at ease a little - I was first diagnosed with Wegener's aged 17 (almost 24 years ago) and at the time my kidneys were damaged to the extent that I needed dialysis. Fortunately they recovered well (I don't remember the exact % function) and I only needed dialysis for a few weeks. Since then my kidney function as only dropped during flares, i.e. while I've been in periods of remission my function has been stable. This changed after my last flare which brought my kidney function below 18%. Once your function gets below 20% you kidneys will deteriorate even without having a flare (this deterioration may be very slow, over many years).
So, as you are at 50%, your kidney function is unlikely to drop so long as you remain in remission. Even if you do flare, prompt treatment will help prevent further damage to kidneys. Research and improved treatments over the years since I was diagnosed, has put you in a good position for keeping that function above 20%.

Just eat a generally healthy diet, don't worry about the odd alcoholic drink, I was a HEAVY drinker from aged 17 to 30. However bad your diet previously was/is, the only way it may have had a bad effect on your kidneys is if it has caused you to have high blood pressure for MANY years, so don't blame your lifestyle for lack of kidney function.
Masha is correct about stress and I have flared during periods of stress, so wherever possible, try to be stress free (much easier said than done).

Hey Gilders,

I went to bed talking about you to my husband yesterday. Trying to vent how I was scared to get to the stage you are with your kidneys with the life style I bring myself in bad eating maybe, but now I understand more of you. Thank you so much for opening this to me/us. I won’t beat myself anymore. I am going to drink more water, I get very thirsty around evening time every day I always think it’s the prednisone. I couldn’t sleep thinking what you told me about how your kidney went down to 8% and I said to myself, Gilders sounds so smart in all the research it has been done, now what hope do I have to get better if I eat the way I do. Meaning regular white rice, salts and again dairy. Now I don’t eat in exesive (only when I was at 60mg with prednisone for the first time in my life and I didn’t had any control over my body)

At the hospital, after the kidney biopsy, specialist Rheumatologist told me the same thing, at 50% he sees me having a lifetime of 40 years plus or maybe 60. (I was told before treatment I had 6 months of living time) and my question was “would I be needing a transplant soon?” And he said “no, I’m sure you will have a normal life time with your kidneys just like this. And this was another Rheumatologist in the hospital not my doctor. So I believe all your research. Now that you mentioned it i feel much better. Thanks!

Also I feel better after you explained that kidneys don’t crash fast. Now im not so scared for you, im happy we have hope and time. That’s all we need.

I do try to be stress free, It’s just a bit hard sometimes. But I had changed a lot these months after this diagnosis. I try to keep it calm.

[Masha]

Hi Veronica,
This is the talk I give myself.
Take a deep breath. Don’t try to tackle everything at once. Changes in lifestyle won’t come overnight. First, just accept Wegeners for what it is today. Try not to put the cart before the horse. With the medicine that is now available I can live a productive life. I will not read or follow everything on the internet. If I try to immediately change my diet/lifestyle, I will turn into a babbling idiot. I know what is good and bad and my changes will come gradually. I will set time goals, a week, a month. If I take one bite of a no no food, I will savor it, I will not stress out on a guilt trip. When I feel good, I will not ponder over the bad. I will play with my dogs, read a book, watch a movie, do crafts and pray. When I ache I will remember the good, past and present and pray. I will allow myself an occasional cry and complaint. But I know that if I do it too much, it will not only make me feel worse, but it will wear down those around me. If I feel the need to really let it all out, I will come to this site and do it, because here everyone understands.
Now, Veronica, my talk works for me. Maybe it will help you too.
Masha

[drz]

For the past several years my creatinine level have been rather stable and flucuates from around 1.2 to 1.5 which is good for some one with kidney dmage from decades of type 1 diabetes and more serious damage from Wegs in 2010. I presently have around 40+ % of normal kidney function. Creatinine readings will fluctuate from your diet, level of activity, and other factors besides your kidney function so worry about long term trends and not overreact to a sudden change. My internist did recently so my nephrologist order some more extensive tests and concluded my kidney function was still stable. That is what your doctors should do for you since they should know when it is serious and requires a quick response.

My nephrologist wants me to try control the GPA from any serious flare and keep my blood pressure under 130/80 but not to worry about any special diets apart from trying to keep my blood glucose levels down as best I can. Last A1C was 8.3 but that might not be accurate reading for me as another measure suggested a reading of 5.8.Too low of Blood glucose levels are more dangerous than too high episodes although neither are good for you. I think the ideal range for me would be from 100 to 200 and to avoid the extremes which is hard to do.

Like my endo told me years ago, severe diets are generally bad because because if you try to avoid foods you really like, the most likely response is that sooner or later you will binge on them which is far worse than having them from time to time in moderation. And that is much easier to do.