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Update from Smokey 2014

Just released from the hospital for the second admission since August..My potassium shot up to 6.5,my creatinine elevated to 3.5,my GFR went down from 22 to 13.. My protein in my urine went from 300 to 2895..I do have a severe bladder infection and had been having large amounts of blood in my urine..

I became so anemic I needed a blood transfusion..

I've been being treated with mass doses of prednisone and Cyclophosimide which is a chemotherapy drug. I'm trying to watch my diet and eat healthier..

Why am I getting worse instead of improving?

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Just off the top of my head regarding prednisone, it is given and one of its purposes is to reduce the effectiveness of your immune system. I know its given to recent kidney transplant patients to help their body accept the new organ instead of attacking it. I assume that lowering your ability to fight off other illnesses may be hampered for a period while you are taking that medication. It may take a bit longer to recover from it. I'm curious about your high potassium. Were you given something like kayexalate (spelling?) to reduce the number? I had a similar issue almost three years ago and at the ER I was given two little bottles of that nasty, but effective stuff to get my potassium down. They told me it was due to my taking lisinopril for hypertension. I was switched to amlodipine and have been on that ever since with only positive results. When is your followup with your PCP? Was anything said by the hospitalist at discharge about possibly needing dialysis or did they leave that to your own doctor to discuss?

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My nephrologist treated me while I was hospitalized..

He said I'm not ready for dialysis yet..

I finish the monthly treatment of Cyclophosimide on Monday and start mass doses of Prednisone for a month..Monday I start 3 days of 1000mg a day I.V Prednisone then for the rest of the month I take 50mg Prednisone by mouth. I do this treatment for 1 month then I go back to a month of chemotherapy for a month. While I'm on chemotherapy I'm not on Prednisone. We alternate the Prednisone and Cytoxin( Cyclophosimide) every other month for the next 6 months.

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I follow up with my family doctor on Wednesday and my nephrologist next month.

They were going to give me something to lower the potassium in the hospital but found I was severely dehydrated and the potassium came down to 5.3 after 7 days of I.V fluids.I was on Lisinopril but they had to take me off of it because it lowered my blood pressure to low. They were giving it to me to decrease the protein in my urine.

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Dear Smokey,

Hang in there- please! The important thing is that they treated this.

I had the same issue with the Lisinopril lowering my already low blood pressure and dehydration. I take Lisinopril to address the protein in the urine and protect the kidneys.

Although not the medication for everyone, it is one if the most widely prescribed drugs for first line protein spilling reduction and commonly given to diabetics.

The saline and transfusion will boost your system and get you moving forward.

As I mentioned, after Prednisone, Rituximab, and Cyclosporine,

Cyclophosimide was the drug used with a light dose of Rampril

( sister to Lisinopril) that worked for my dear friend..we are grateful that she is so much better. It lowered her protein to more than partial remission- It was a process. We are all different.

My thoughts, make a list of questions and ask your nephrologist as well as your GP..have them work together.

Hopefully, your GP will put you on a potassium blocker and refer you to a renal dietician who will give you great food suggestions to keep your potassium, phosphorus, sodium etc. in check- eating kidney- friendly will be such a big help.

Cyclosporine, Prograf

( Tacrolimus) are widely used with Transplant patients and also to lower proteinuria to my knowledge.

I was given Tacrolimus for 3 months and it lowered my protein spilling by 70%, then froze..so they are looking for a better medication for me.

The prednisone is common to suppress the immune system in many disorders as are the others. We are not all candidates for prednisone, I am not...ask!

Most importantly, you are moving forward.

Please let us know how you are doing and what your doctors say.

You are cared about deeply!

Keep your eye on that prize!

Hugs..

Bet

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Yes, immunosuppresents make you more susceptible to colds, flu, and infections. Use handsanitizer, avoid close places with people sneezing, if you cut yourself, get the neosporin and a bandaid. Common sense..

Been there..

Xx

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Hi Smokey; thanks for the update. It sounds like you've been through a lot the last couple of months; hang in there. You mentioned above that you'er taking Cyclophosphamide. I found an article which says that a too high of dose can lower kidney function (GFR). You might want to mention it to your doctor; perhaps your dosage is too high. Avoid grapefruit and grapefruit juice. Anyways, this is what the article says:

nephcure.org/livingwithkidn...

"f blood levels of cyclophosphamide are too high kidney function may decrease, This is why blood work is done frequently so that the dose of cyclophosphamide can be adjusted.

"The doctor will want the bladder emptied every two hours and may also want the bladder emptied during the night. This helps prevent problems with the bladder and kidneys.

"Avoid grapefruit and grapefruit juice when taking cyclophosphamide. These increase the amount of cyclophosphamide in the blood, which may cause more side effects.

"Cyclophosphamide may cause birth defects. If there is a possibility that you may become pregnant, or you are pregnant tell the doctor right away.

"Check with the doctor before taking any other medicines (prescription, non-prescription, herbal, or natural products)."

The article also mentions that this drug can cause bleeding (you mentioned that you had a lot of blood in the urine):

"Cyclophosphamide can lower the number of platelets in the blood, which means bleeding may occur more easily."

One of the known side effects of cyclophosphamide is blood in the urine, according to the article above.

II would suggest asking your doctor about these things and whether this drug is causing these side effects. I hope things get better for you.

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Myself as well..

Any of the immunosupressent drugs such as Cyclosporine, Tacrolimus and Cyclophosphamide all have the nasty side effects.

The prescriber should be running a toxicity test every two weeks at least to check the levels in the blood and keep an eye on the CBC panel and glucose levels.

Grapefruit is forbidden, and sunblock is recommended as well as noticing any change in moles, skin etc. as skin cancers are also possible side effects.

I know as as prior mentioned, a dear friend was on Cyclosporine then Cyclophosphamide and was very carefully monitored.

Both my nephrologist and pharmacist went through this with me when I was on the Tacrolimus from February to June when I switched nephrologists.

Great research, Steve!

Smokey, it will all be good.

Grab on to your strength and know the prize is coming..the walk is a process.

EY..you are amazing! Thank you from all of us.

Bet....

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Thank you so much...

I took your advice and signed up on the site you recommended...

I take Cyclophosimide every other month..

The dosage is 50mg twice a day for 30 days..

I believed that is a high dosage of Cyclophosimide..100mg a day..

I was only getting bloodwork every 4 weeks..

I honestly believe if I was monitored a little more often my often things would not have gotten out of control with my bloodwork...

While I was in the hospital last week I had blood drawn every 2 hours for 5 days..

My bloodwork was changing for the worse every time it was drawn..

My potassium was 6.5 on admission, my bun was 54,my creatinine was 3.5,my protein in my urine went from 300 to 2850 and my GFR dropped from 28 to 13..

Now between my family doctor and my nephrologist it's being monitored every week..

My hemoglobin dropped in the hospital from Friday afternoon from 9.1 to 6 in 24 hours..They thought my bladder was bleeding from the Cyclophosimide but testing was negative, I did have very large amounts of blood in my urine for a few months even before I was on Cyclophosimide because of a severe bladder infection, they thought I had vasculitis in my lungs but my ches X-Ray was negative, ultrasound of the kidneys negative.

I do have Acute renal failure secondary to segmental Crescentic Glomerulonephritis on Membranous Nephropathy..

That was found in August after a renal biopsy..

I honestly do believe a lot of my feeling very sick is because of the Cyclophosimide..

I finished my 30 days of my Cyclophosimide on Sunday and started mass doses of Prednisone I.V yesterday and after 3 days of 1000mg of prednisone I.V I start 50mg of prednisone by mouth for another 28 days..

Then back to 100 mg of Cyclophosimide for 30 days..

I alternate between Cyclophosimide and Prednisone every other month for the next 6 months..

Hopefully this treatment will put me in remission..

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Hi there Smokey2014! Its great to see you! I am so sorry you are enduring all you are. I know each step is such a shock. I love the comments below. I am unfamiliar with chemo and I am so greatful for those who created this site and come to us. I learn something new every time with NKF. This is a great support system. I am familiar with UTI's and I had a blood transfusion after my transplant. I am not on prednisone. So with this part I am not familiar with and so glad the others below can guide you. However, I am here with you now. I picture you on this path aside of mountain walking your marathon. I am here with the others on one of your first pits stops. We extend you a water bottle while we all cheer you on as you pace yourself through out. Unfortunately sometimes the path suddenly gets extremely steep for awhile until you climb back up again. To get the strength to get back up this hill we are here giving you the boost you need to regain energy. You are an Olympian and its a treterous marathon. Every pit stop we will be here. I completely agree with NKF Ambassador the Renal Nutritionist is imperative. I completely agree with Bet117 Handsanitizer, avoid those who are sick, and ask your docs questions. Be careful with the bladder infection make sure its treated make sure you tell your docs about the bleeding! Do not wait for anyone in future UTIs or bladder infections get to ER immediately when they occur. Just a tidbit. I had a bad UTI I was in the height of the pain I had not such a great set of office girls who left me hanging. I had a dialysis nurse for a neighbor who flew up the stairs and told me to get to ER because if not treated it can climb up and turn into sepsis. This was right before dialysis too. With everythign happening to you suddenly I know its hard to adjust to all the changes. I do hope you have a support system I hope you share this info below with them to help guide you. With so many lifestyle changes happening at once, and in that fog, that pain that hell, I know I almost went into a denial. But its why you reach out and keep in contact as I was told to get to the ER. I meantion this as an example you can parallel to anything in your own life. Because we are so used to having a life of unconscious habits, its enough when you feel great to suddenly adjust to such a change. But being this ill, we can't function right, or be expected to. There was no prep time for each separate entity you are dealing with. Diet, no immune system. Well right now the most important is to make sure you follow your instincts, your doctors advice and talk to whoever is there. Have them assist and remind you, use handsanitizer that is now part of the lifestyle changes you will be experiencing along this trek and beyond the Finish Line. But once past that Finish Line you will be fresh as new with this all unconscious actions. You have so many transitions happening. But one sense of control is learning universal precautions, hand sanitizer, constantly wash hands. Paper Towels are my best friend the past decade. I go through tons. I had put a rack in my bathroom aside from the kitchen. Keep handsanitizer in your pocketbook. When I went to the ER for my UTI I knew my numbers. I am so impressed and thrilled to know you know yours! Because I did as they said they coudn't give me anything for the UTI, because i knew my numbers the doc was impressed. It helps them. He then said he will check the PDR and come back. As a result I was able to get Cephlex at a lower dosage. So you are already doing phenomenal being so proactive. That is the key .. and part of those unwrapped gifts at the end of the Finish Line I told you about. You should be so proud of yourself. I am so impressed I am thrilled to meet another patient like me who knew my numbers and was so proactive. Kiss you hand. You will remember that moment 6 mos and 6 yrs from now. You are doing such a great job. I know how scary this is. I know how much hell this is. I am here. We are here! I have 3 people in me now. My kidney and my blood transfusion. When I woke up from my transplant I felt something you won't know until you experience it. I don't know my donor I know the age, I simply named him or her Scott. I woke up thinking it. I didn't name my blood transfusion but I never forget that person either. Elton John suddenly popped in my head just now "Someone Saved My Life Tonight." That is what you blood transfusion did for you. You are amazing Champ! I am glad your time frame mentioned above is in monthly terms. Keep it close to the vest the sense of time and only look at the number 6 as the Finish Line. Pace Pace Pace I see you doing above. One month chemo one month prednisone. As you go through these frightening moments, focus on what you are enduring at the moment. That is what you need to get through. Slowly think ahead. Right now your first goal is 30 days. I do like that saying "Things have to get worse before they get better" because that is part of this process. Everything I imagine must feel at times like slow motion. But when you get to where you can't take it anymore always give yourself what I call the 24 hr rule. When you feel you at the bottom, wait 24 hrs as the beauty of the sense of Time is it constantly changes, constantly moves you forward. These luls are what the body needs to do to adjust and fight. I always felt my experience was like and EKG. Every second was worth it for what is here at the Finish Line. You will get through this. You will get here. Our hugs await! Just not matter what time of day or night you have a question you ask it. You have a wonder don't wait. Listen to your body. I was thrilled to see you tonight! You got passed those hospitalizations. You are home. That time has passed. That Month has passed. That moment passed. You are now closer than where you were when we met to that Eye on the Prize - Feeling Better. Take it one miliesecond at a time now. You will get here! Hugs! Rest!

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Amazingly put and an inspiration to all, regardless of their battle!!

God Bless!

Bet:)

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Thank you so much Bet! This was my actual experience my vision that I had since dialysis began in 2012 thru to after transplant and now. But as I write this, I literally visioned this throughout my typing. Finding and joining HealthUnlocked 2 months ago is when I realized the true meaning of the other side of the Finish Line. Every word I speak to Smokey is natural as is this new experiencing meeting you and others on here. Its instinct. I am literally in my vision when I speak to her. I see the dirt path I see the mountains behind it I looked at myself on that path I looked at it 3rd Person looking at her horizontally trodding by pace-pace-pace. I see You and I on the sidelines at the bottom of this U-Shaped miles long drop in the path and there in the bottom of the U is this table with a white cloth and seeing at this pit stop for water. I think others have their own visions that come. I am so glad to have seen Smokeys first post 20 min after she posted it, because I am still a patient. I see and learn from her and all of you because who knows what will come along in my future and I will look back and recall the meds you discuss and the chemo process. I genuinely care for Smokey2014. (2014 is when I had my transplant by the way and I just got here this year for the first time where I am ok.) But this is now a natural instinct of mine. I am so glad how she worded her title I was instantly drawn to it. I am so happy it was only 20 min since she posted. The whole time I didn't realize myself just what a transition like this really is. We are a special community. All patients. As is a whole new plane. We are all left in the Ocean as our ship sank, and now, once we each make it to land, we must reach out our hands and pull as many as we can safe to shore. That is what happened naturally unconsciously when I saw Smokey's post. That is the transformation HealthUnlocked brings. Smokey actually made me suddenly aware of a transition in my health I never realized and still process. Where I am at now. I know whats ahead in a few yrs and i Just block it out. I savor time. But I still pace pace pace. I am thrilled Smokey gave us an Update. Now I prep for the next pit stop. Every comment from all of us, adds an additional bottle of water and energy we can hand out to her as she gets up this hill through to the next slope in this EKG type path of this olympic marathon she and all of us ride. I never realized how much this helps me as it seroiusly does in a way I cannot explain. I am by myself however I for the first time am among others who get this new plane we are all in. I know my next Olympic Marathon is ahead in my distance I just am just on hiatus until I have to train again. This is among one of the many gifts that Finish Line brings. The experience itself which something that can't be described. Its unique to each individual. It belongs to each individual. You don't know until you get here. That is true for every milisecond of time through this pure hell. You don't know until you get here because you don't know what comes next you never experienced it before. That's way too much stress in itself. Ground zero is stopping and noticing how your brain thinks and processes a life threatening illness of pain fear and stress. From there you find out what strategy you use to that works for you. It will pop up naturally on its own once you realize. Your reply was a wonderful surprize and helps immensely. We all care and worry for and with you Smokey2014! You are not alone! Thank you Bet as your reply to this newbie to this wonderful cite is having such an impact as it shows how many of us are here for Smokey.... and for each other in our futures as well. Wishing you all the best!

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The newbie I referred to was me but its also Smokey. :) Its all ofus.

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Hi EY,

You are one amazing and loving person!

Wow, are we fortunate to have you as part of our community!

We all may have different disorders from CKD, IGA Nephropathy, FGS, and Membraneous Nephropathy as I do; bit it is all a journey; a process with the same ultimate goal is to give ourselves the finest life that we can and the best health possible.

I look for the good rather wallow in the challenging; labs up and down, physicians not following up/ treating or not treating the numbers- most importantly the whole patient.

Your journey has been an incredible marathon! Your special gifts are not only your coping visions for Smokey and other members who remain silent and anonymous, but the courage that you emulate to all! I have always believed that with every challenge their is strength, and learning.

If you view your lessons/ learning as a means to supporting others when they are in pain and help them over the rough patches, than all that you have experienced might have been rough but with that courage and strength that you have gained, a new role is born.

Smokey will get there, you will remain as healthy as possible and continue to help others with your compassion.

A pillar of this community. I look forward to further communications.

Thank you!

May God Bless.

Bet..

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I so appreciate all your words!! I must say I am very well aware of your paragraph "I look for the good rather wallow in the challenging; labs up and down, physicians not following up/ treating or not treating the numbers- most importantly the whole patient." But in order for me to be where I am now, I definitely wallowed in the challenging of such, you have to. You must. This is the not the right post or place for my senario, as the main concern is for Smokey. But when I do post in its rightful place and time I will definitely let you know. Its too much for where those reading this post are right now. But I will say you have to wallow because its how you survive through it. I was in the best shape possible and what happened to me was from the healthcare system on dialysis. I never expected it but I damn well fought through it. I kept on top of it all since day one and to some in the healthcare system they can see an educated patient as a hassle or a difficult one as they are overloaded . You know what I don't care. I was proactive and tracked my labs and got my copies of every lab from my docs office, I fought the bad employees, I did whatever it took and in my worst ever condition. I am here making time freeze as I know whats ahead. But my situation may not be everyone elses. I can step-out-of-the-box now because it took until 4 yrs after my transplant to get to here - having independence back, breathing normal again. I know its for a short time. I would say definitely wallow. Allow yourself to feel whatever you want to. I still wallow on my siuation but this yr I am finally where i can get a way from worrying about it. I talked to my doctor not once but several times. Wallowing helps process the anxiety and unconsciously helps awareness and develops a strategy as you continue. You wait until you get to that brake you can from it, because it is very traumatizing and mistreatment is beyond a shock as its so unexpected, yet is the norm. You don't learn it until you go through it. Each personality adapts to their own experience but we shouldn't have to adapt. So what ever you got to do you do. Emotions exist for a reason and whatever mechanism including defense mechanism you need you use. So though I am finally here, I do not dismiss these incredible emotions as they are the ones that got me here, the wallowing, the fear, the whatever that gives me the fight. We are allowed to fight to live and not let others interfere with or prevent our way to the finish line. I had at first tomatoes, to stones to boulders thrown at me by abusive ones in the healthcare field 24/7 364 out of 365 days. I simply saw those black thick lettered words waving high above with the wind blowing slight the white banner saying, FINISH LINE. So with every tomato, stone and boulder thrown at me or in front of me. I never freyed from my path. I continued on I would simply bend down pick the boulder up and move it out of my way and pace - pace - pace. They did not get my attention. They tried to be the focus but I never let them be. I was Neo in the Matrix fighting off bad employees but that is for another time and place in a different post. The point is no matter what - the only concern of yours or mine is getting to that big huge two beige wooden poles with the blue sky and huge Mountain standing behind that banner Finish Line. "The path leads to Alice and Alice leads you home" the quote from the film Proof of Life is all I saw and heard in my mind too. Whatever you need is always ok. Whatever you feel is never a weakness. Emotions is the greatest gift as its the most facinating part of a human brain. Trauma takes away all those precious emotions. For myself, emotions I stood by my entire life. Still do. But its important to recognize no matter what disease we are Patients. We are Human Beings. We know pain. We know the fear and feeling of being close to death and we have entered a plane we never knew before, can't explain to anyone, as we understand that those healthy cannot know this plane. We were once healthy too. We were them and that forces us to be stronger, because we know they cannot be in our plane but we need them to accept that we are free to be as we are. Filtering the mind is needed in order for our bodies to survive. I have had some great experiences and horrific ones, but by your paragraph I knew you and I are on a similar wavelength. So wallow, learn, fight. NKF used to have these Lab Logs from Amgen. They no longer do. I highly recommend they ask Amgen to make them again. Though I was told not to many people do what I did, which was use them to this day and track very lab. It helped me so much. It helped when all my records were gone after 7 yrs from the office and the center needed to know if i had a pneumonia shot already. I went home and sure enough as I tracked my Amgen Lab Logs for 16 yrs I looked through and found 5 yrs earlier I did. So every one has their own way. Ha ha I kept telling my friend I should be a commercial I swear by them. But its hard to realize when you go through this its only you that can develop your own way through this maze. How you cope what you learn, specifically how you learn. How does the brain process? You rely on yourself in ways you never expected. Its not easy. But coming here has made a huge impact I feel something I haven't and that is a place where we all on our own level have some way to identify with each other. Its unspoken understanding even if we don't know about each others own illness. We understand this new plane. Its an unspoken bond in a way. Thank you for this wonderful community NKF Created. Thank you for welcoming me so wonderfully into it. You both brought to me so much insight which instantlly brought all the thoughts expressed on here to the fore-front. Your compliments and sincerity mean a lot Bet. And I cannot explain how You Smokey confiding in me and being on here means to me. I will try help you through as best I can. The true inspiration is all who came to reply and help as Rascal01 and WYOAnne did below. There really is strength in numbers as when we think we are alone there is actually somebody out there! Oh and yes I agree with WYOAnne I try to state that in all my replies. We are writing in a public forum and our writing has responsibility and legal consequences. I would not hurt anyone but I do clarify I only speak from my own experience as I am not a doctor. Always go by your doctors only. You can always take from here and ask your healthcare providers which is true for YOU. You are The Patient. We all have our own ethos that can only be monitored by those doing so literally - your own physicians and specialist. I recommend taking whatever from this community parralleing it to your own situation and create more questions for your docs. It can bring you closer. I just came on here to edit this. It was such a great discusion and way better written too. My chat on the edit was several hours than switched to another tab and came back and lost it all! I now forget it all lol. Ugh.

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EY,

Your words are appreciated and heard, by the silent and not so silent.

The guidelines for appropriate do not touch the feelings which you are conveying, they would suggest naming folks, cussing and bickering.

There is a set of community guidelines in the menu.

You are describing your experience, your vision and all of the feelings which you have and are experiencing, which is encouraged.

Every member has experienced anxiety, fear and frustration at the words "kidney disorder" and still di- it is the courageous like yourself who admit those feelings and make them okay as they are very normal.

My heart goes out to parents who see their child diagnosed with a kidney problem; be the child an adult or young. It is hard enough for one to experience this themselves, but must be worse to see your child go through it, to feel helpless, but muster that courage to learn, advocate and fight for best care.

Like you, many of us have had the mis-fortune of less than stellar medical professionals to deal with but the lesson learned that we universally share is that the key is to drop the fears and advocate for ourselves, keep good records and don't accept neglect or the actions of professionals who don't listen or take the time for patients. Informed people..

When you have walked the walk that you have, there is alot to share and many differences to be made.

You have openly touched one life and silently touched many.

Thank you.

Looking forward to more posts ..feel free to message me as well.

Bet

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Thank you so much for caring..

I also named my blood transfusion donor...

His name is Hero..

I dedicated the song "Wing beneath my Wings " by Bett Midler..

Only because of the line "Did you ever know that you're my hero"

Today I'm feeling much better physically..

I stopped the Cyclophosimide on Sunday, last dose until next month, I did start my mass doses of Prednisone yesterday I.V for 3 days for a total of 3000mg in 3 days after that I'll take 50mg of prednisone by mouth for another 28 days..

When I'm on the Prednisone treatment I feel really strong...

After the Prednisone treatment I do have to go back on the Cyclophosimide for 30 daysfor a month then back to mass doses of Prednisone the following month..

I alternative between these 2 drugs every other month for 6 months..

Hopefully this treatment will put me in remission..

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I am so glad to hear you are feeling a little better! These moments of feeling better and stronger are the most prescious! You have endured so so much! I love the name "Hero" because your blood transfusion enterred into someone who is just that! You go so well together as best friends should! :) Yes immense stress and worry ... you just keep on this pace as you are doing great! You made another step toward your goal! You are feeling better physically!! That is huge! And every time you do I grab my pom poms and jump up and down for you. You keep focusing and telling your body the treament WILL put you in remission. The difficulty of that is well understood and never dismisssed or ignored. I am so thrilled to hear from you. There is so much stress to this but I am so proud of your incredible fight! Look at you go! Pace. Pace. Pace. I am walking with you. Have a better feeling night!

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I kinda know how you feel. Been on dialysis 4mths. hospitalized 3 times for a number of things. Very anemic also. The road to recovery is slow. It does get better! Pace yourself. Use the help of family and friends. We all battle together. Prayers to you.

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Just remember that none of us here are doctors and can only speak from our own experience. We are all different and react differently to meds, etc. Take from what everyone told you here and make a list of questions to ask your primary doctor and for your nephrologist. They may have a better understanding of what happened with this hospitalization.

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WYOAnne,

Well put and the best direction...We are all different and have different body chemistries. Generalized treatment may be the same to start, but what works for and is best for one, may not be for another.

Having a great medical team to communicate and work with as well as positive thinkers is key. Taking questions to both your nephrologist and PCP, having them work together and noting answers to questions and jotting down what they have to say takes the stress off and can be re-visited before the next appointment.

Here, sometimes a kind word or response as you give; reaching out makes all of the difference in the world!

Your input is great. My thoughts as well, Smokey's physicians are the people to explain what happened and the plan forward.

Please keep in touch..you are wonderful!

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Hi, why are they treating you with chemio and prednisone? Do you have a form of vasculitis?

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Hi Wizzi,

Cyclophosphamide has many uses...it is a chemo drug which is used to treat Lymphoma as well as kidney disorders.

Cyclosporine, and Prograf

( Tacrolimus) are immunosuppresants which are also used to assist transplant patients with organ rejection but also reduce Protienuria.

I was on Tacrolimus for a brief period and I am a Membraneous Nephropathy patient.

Ritxumab is used to treat Lymphoma but has been very successful in treating specific kidney disorders; mine specifically.

The 2nd nephrologist who saw me at a metro hospital felt this would be a better medication for me to get me to remission when and if my protein spilling rose high enough to treat me.

All of the above and prednisone suppress the immune system to slow down or hopefully stop proteinuria.

Perhaps a member who has been taking prednisone would be good enough to share their knowledge.

Great question..good discussion topic..

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They think I have vasculitis..

I've been coughing up a lot of blood clots..

All the tests done were negative for vasculitis..

The reason I'm on Prednisone and chemotherapy is because I have Acute renal failure secondary to segmental Crescentic Glomerulonephritis on Membranous Nephropathy..

The nephrologist feels he can get me in remission for a long time..

He is also trying to bring my GFR up to 60%

He said the combination of these two drugs usually workson this type of disease..

I'm hoping it does..

This is a very brutal treatment..

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No..

Because I have the cresentic attachment to the membranous neuropathy..

That is the only way to put that part in remission by lowering my immune system to almost nothing...

Only 5 percent of the membranous neuropathy patients have the cresentic attachment..

All that disease with that attachment does is see my kidneys as something foreign in my body that it needs to attack and destroy..

The chemotherapy lowers my immune system to stop the disease from attacking them..

That's the only way to try and get it in remission..

It's a 6 month alternating treatment between the chemotherapy and on alternate months mass doses of Prednisone I.V and pill form..

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Hi

, sometimes you can have vasculitis and you can have negative tests for vasculitis. I write because in march 2017 my son that now is only 13 years old had an acute renal failure. Doctors told us that he had an aggressive form of Vasculitis Anca Associata with severe renal involvement. (he was positive for Anca test, but there were vasculitis patients which were negative). At first they saw a Rapidly progressive glomerulonephritis that, after cyclophosphamide, Prednisone and three cicles of intravenous injection of cortisone (in total 9000 mg of cortisone in three mounths - incredible!!!), has became GN. Now he is good: he's taking MMF and they are reducing the prednisone (only 2.5 a day).

I perfectly known how brutal could be this type of treatment. My son had also complication. But if you see him now you never tell he is ill. His renal function is stable (55 GFR and 1 of ceatinine) and the illness in remission. Don't know for the future, but I live day by day.

I don't know what you have but I can suggest to you to be strong and positive, because the first year is really bad but after everything will be better.

a big kiss

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I was diagnosed with Acute renal failure secondary to segmental Crescentic Glomerulonephritis on Membranous Nephropathy.This was found during a kidney biopsy..

Every month they do repeat the ANCA test because the nephrologist said it can still test positive in the future even though it's negative now..

I'm so glad your son is doing so much better..

Your son is giving me inspiration to go on..

Thank you and may God Bless you and your family always..

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