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I have been diagnosed with two rare kidney diseases. Any advice?
- Thread starter Downhome
- Start date
OP
OP
Thanks, means a lot.
The thing that really sucks is how I have always been pretty healthy. All my life, no broken bones, no hospital visits, no major illnesses. Heck, I've never had any sort of cavity or anything like that either. Then just totally out of the blue, bam, something this major hits. I know I'm not special, it happens all the times, a lot of people are a hell of a lot worse off than me, but still. Doesn't change how I feel. I'm well aware many are worse off. There was a guy at work last October that went out of work, found out he had cancer, and he was dead by January.
I almost hate to say this, but I sorta hate that there isn't anything more pushing me to change things other than all of the "what may happen in the future" stuff. It would be so much easier to drastically change eating habits and the such if I got really bad sick after eating a lot of salt, or sugar, or carbs or whatever else. A part of me wishes that there was something else just, there, to prove something is wrong other than numbers on paper from blood tests and the sort.
Then to make manners worse, when I complain lately, I don't feel like anyone else gets it. I don't physically look sick in any way. Just like I didn't know anything was wrong until being told (other than my symptoms like being so tired and fatigued), no one else can tell anything is wrong either. I keep feeling like certain people thinks I'm making it up for sympathy. When I've had to be out of work I'm afraid someone from work will see me, assume I'm actually well, and that will come back to me.
Hey Downhome I don't know how I missed this thread before but we have always had good convos on here and the old site and I am really sorry to hear this is happening to you. As someone with chronic physical conditions which are also not visible to a passerby, I totally understand where you're coming from in regards to feeling like people are going to misinterpret your physical condition as not causing you any problems or no big deal. In my experience people will sometimes make comments in that regard that sound somewhere between passive aggressive and just unaware of how they are coming off, like "oh, *really?* You have such and such a condition? You always seem perfectly healthy and normal so I would have never thought so." So that can be annoying. But in my experience best thing to do is just focus on how your family and the people you care about feel, and I'm sure those people will be sympathetic and understanding. You and I are lucky that you have a loving support system, a lot of people aren't so lucky. I understand it's a serious and scary thing you are going through and I am wishing you all the best for a speedy and painless recovery. Sending good thoughts your way. And if you do end up using the South Beach Diet as someone mentioned, if it does end up being appropriate for your condition, there is a really amazing recipe for chicken with like dressing (similar to guacamole) in one of the original cookbooks for the South Beach Diet.
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OP
OP
Thanks Nabbit.
The prednisone is now taking a toll on my blood sugar. I've never had issues with that before, so it is absolutely a side effect of this med. Because of that I now have a blood sugar tester and was prescribed all the needed parts. They also prescribed 2.5mg of Glipizide to take once every morning to see if it helps. I took it for the first time today and it didn't seem to help much. I first tested and it was 190 then a few hours after the pill it was 150. It didn't totally crash me which is what we feared it would do though. I have also had a totally random pain start on the right side of my right foot. Was walking through the house a couple nights ago and it felt like I stepped on a knife. I really, really hope it isn't the start of an issue with gout as well, typical for folks with these problems. It's the last freakin' thing I need now.
On the bright side I've found a few decent snacks to help quench my desire for chocolate chip cookies. Last night I even made a diabetic/low sodium chicken marsala dish that wasn't that bad. Sure wasn't the same though.
The prednisone is now taking a toll on my blood sugar. I've never had issues with that before, so it is absolutely a side effect of this med. Because of that I now have a blood sugar tester and was prescribed all the needed parts. They also prescribed 2.5mg of Glipizide to take once every morning to see if it helps. I took it for the first time today and it didn't seem to help much. I first tested and it was 190 then a few hours after the pill it was 150. It didn't totally crash me which is what we feared it would do though. I have also had a totally random pain start on the right side of my right foot. Was walking through the house a couple nights ago and it felt like I stepped on a knife. I really, really hope it isn't the start of an issue with gout as well, typical for folks with these problems. It's the last freakin' thing I need now.
On the bright side I've found a few decent snacks to help quench my desire for chocolate chip cookies. Last night I even made a diabetic/low sodium chicken marsala dish that wasn't that bad. Sure wasn't the same though.
OP
OP
Yeah really, haha. That is the reaction from everyone I've told that.
Truth be told it likely won't even help. I mean, I want to be positive but doctor says there is only a 50/50 chance it will do anything positive for me. I see studies online talking about sample of 50 people and 0% of them responded.
It's six months of shit side effects for possibly no gain. I'm willing to do it for the chance though.
OP
OP
Thanks man. I'll gonna try to post updates and other random things when I feel certain ways. If folks here or the kids tire of the bumps then they can delete it or close it if they want.
Hi, I have no knowledge or experience with kidney disease, so I never posted before. I've read the thread whenever I've seen it bumped though, and I appreciate your updates. I'm sorry you're going through this. And I'm rooting for your treatment to work and for you to recover.
Kidney disease sucks. Kinda been going through a similar process for the last month. Sounds like you're keeping a good mindset, hope things stay stable in the next months for you.
I've had IBD for 2 years and my kidney function massively drops (and slowly recovers) every now and then for no apparent reason. I had a kidney biopsy a few weeks ago (never doing that procedure again) and it's still not entirely clear what's wrong with me. My nephrologist started a course of high dose steroids in the hope it makes a difference. The first weeks sucked (no sleep, jittery and very talkative) but I'm getting on better now. I kinda regret starting steroids because I'm stuck, but I haven't had metabolic side effects (my appetite's gone down!) and I'll be off them in another month. The only good thing is I have a lot of energy.
I've had IBD for 2 years and my kidney function massively drops (and slowly recovers) every now and then for no apparent reason. I had a kidney biopsy a few weeks ago (never doing that procedure again) and it's still not entirely clear what's wrong with me. My nephrologist started a course of high dose steroids in the hope it makes a difference. The first weeks sucked (no sleep, jittery and very talkative) but I'm getting on better now. I kinda regret starting steroids because I'm stuck, but I haven't had metabolic side effects (my appetite's gone down!) and I'll be off them in another month. The only good thing is I have a lot of energy.
OP
OP
Thank you.
Thanks so much.
Man, I'm sorry to hear that also. My biopsy wasn't terribly painful, but I sure hope to never have to have it done again, ugh.
I've had stomach issues but have never had it officially diagnosed fully. I've had two bouts with H Pylori, I posted a thread on that at GAF when that was going on, and I have a theory that it somehow contributed to my current issues. I've had multiple folks with CKD also say they had it at some point before, including my wife's older uncle.
I haven't been any hungrier because I'd the prednisone. I've been hungry, but that's just because I'm not eating nearly the same things or same amounts that I was wasting a short while back. I've actually lost around five pounds. My main issues have been jittery, anxious and by God emotional. I'm trying all I can to keep that in check, I've heard some really bad things from folks on high doses like I'm taking. My doctor told me if I experience any psychosis or if it just gets too hard to let him know and we would go ahead and move on to the next option.
Are you on prednisone or something else? What is your dose?
I'll always wonder how I ended up with this. My type is rare in general, even more rare to have non-HIV related and even MORE rare to not be an African American. I tell folks I won the shit lottery.
Yeah, rare diseases with no "cause" as such are the worst. Even more when other people think you look "fine". Waiting and seeing must feel frustrating, but hopefully the prednisolone will help you.
With the IBD, it took 3 months of seeing my GP and multiple A+E attendances before doctors believed I was sick and I wound up in hospital for a few weeks because of the delayed diagnosis.
I started on 40mg Prednisolone. I can be anxious sometimes, but I'm generally an extremely easygoing/laid back/placid person. I was oddly emotional for the first week and one of my friends told me I was acting like I'd had 2-3 drinks of alcohol haha. I'm mostly back to my normal self now though (ignoring lack of sleep and energy++). I basically told my doctor I can't manage high dose prednisolone while maintaining my job (I'm a psychiatrist...), so we agreed to cut down by 5mg every 5 days.
OP
OP
Wow yeah. I work as a job coach for the intellectually disabled and the autistic. I already feel it hitting me at work. Also a good thing is it hasn't yet affected my sleep. I take my six pills at night and I'm not having any trouble getting to sleep.
I hear that the symptoms really ramp up once you start tapering down on the dose though. I won't find that out for four months.
I wonder if a mod would be willing to edit my thread title now that it is a confirmed thing for me.
i've got a different kidney disease which has been an absolute barrel of fun to try and manage
(my brother also had it before going on dialysis for a few years and then receiving a transplant about 6 years ago - had a rejection scare earlier this year but he's actually doing better now than he was beforehand
also my original kidneys are probably gonna turn out to have outlasted his by about 10 years 'cause I've been taking medication consistently while he kinda fell off the wagon before his failed)
I'm currently in Stage IV and taking losartan, allopurinol and 650mg sodium bicarbonate tablets in order to manage the symptoms and maybe slow it down a little bit more
(my brother also had it before going on dialysis for a few years and then receiving a transplant about 6 years ago - had a rejection scare earlier this year but he's actually doing better now than he was beforehand
also my original kidneys are probably gonna turn out to have outlasted his by about 10 years 'cause I've been taking medication consistently while he kinda fell off the wagon before his failed)
I'm currently in Stage IV and taking losartan, allopurinol and 650mg sodium bicarbonate tablets in order to manage the symptoms and maybe slow it down a little bit more
Ah, our professions kinda overlap! I've done previous jobs in Intellectual Disabilities and I'm now a child psychiatrist.
Yeah, Prednisolone withdrawal at the smaller doses can be bad but I'm taking the head in sand approach about it :x I reckon I'll cope (still going to work so far). I think people that struggled on starting the medication are more likely to struggle on withdrawing too. I found the first week tough, but I still went to work and did all my usual stuff without incident.
Shit man, didn't know you were battling this. :( So sorry to hear. At least you are taking care of yourself.
OP i know your scared but IGA can take many years to get to end stage. I know i will need a transplant one day and my Neph have already had a brief discussion about that option.
I also have been diagnosed with Iga and have lived mostly a normal life. I was diagnosed at 54% in 2009 and currently at 36-38%. It can be a slow moving disease or for some patients it can be a very fast progressing disease.
Things to consider is diet. Be mindful of what you eat. My potassium is on the high level so no foods for me that are High in Potassium. I have stopped red meat as well and mainly eat white meat.
Always take your meds, listen to your Neph and have a honest discussion with him/her. If your not to sure what you should ask write it down on a pen and paper so when you go into the appointment you don't forget anything.
My appointments with my Neph generally go for 5mins, he looks at my results says everything looks like, we discuss my Potassium levels and if i have any questions/concerns and thats all.
As for Pred, take it every day around the same time and what ever you DO NOT stop Pred. I forgot a dose once and i had night sweats, shakes etc.
Hit me up if you want any more info on IGA. I am also part of a IGA Support group on facebook.
I also have been diagnosed with Iga and have lived mostly a normal life. I was diagnosed at 54% in 2009 and currently at 36-38%. It can be a slow moving disease or for some patients it can be a very fast progressing disease.
Things to consider is diet. Be mindful of what you eat. My potassium is on the high level so no foods for me that are High in Potassium. I have stopped red meat as well and mainly eat white meat.
Always take your meds, listen to your Neph and have a honest discussion with him/her. If your not to sure what you should ask write it down on a pen and paper so when you go into the appointment you don't forget anything.
My appointments with my Neph generally go for 5mins, he looks at my results says everything looks like, we discuss my Potassium levels and if i have any questions/concerns and thats all.
As for Pred, take it every day around the same time and what ever you DO NOT stop Pred. I forgot a dose once and i had night sweats, shakes etc.
Hit me up if you want any more info on IGA. I am also part of a IGA Support group on facebook.
OP
OP
Thanks for the advice. Yeah, I bet I am a member of the support group you mentioned. Maybe not, but I'm for sure in one.
When the doctor first mentioned IGA that did freak me out. The problem however isn't so much that as it is the second disease he diagnosed me with a bit later after consulting with the doctor team at UNC - Collapsing FSGS. Right now he is focusing entirely and planning treatment for that one, since it's a completely different beast. I mean, it also treats the IGA since they are wrapped up together, but still.
Another shit deal on the Collapsing FSGS is that even after transplant, I think the numbers are like in 40%+ of folks the disease remains and overtakes the new kidney in hours up to a few weeks.
I didn't know this either, so sorry. But way to stay positive! I need some of what you are working with there right now.
Stay strong, friend. Hopefully you'll eventually get ahead of this thing and start needing less medicine and shit to combat it successfully.
OP
OP
Thanks. Message like this help more than you know. Especially tonight. Maybe this is partly the prednisone talking, haha.
Not me but my dad wound up having to go on dialysis. It's been about 3 years now. Was doing fine for the most part but recently his mind has been fractured. Now he goes from normal to totally confused and paranoid and it just fucks everything up especially when he needs to do the dialysis.
But all that happening wasn't just because of dialysis.
Good luck to you Downhome, I hope make it through all this
But all that happening wasn't just because of dialysis.
Good luck to you Downhome, I hope make it through all this
I had no idea bubbles in urine were a cause for concern. I've been having that for the past couple weeks. The bubbles fill the entire surface of the water in the toilet.
Thanks to this thread, I've made an appointment with my doctor next week. Hoping it's nothing serious, but thanks OP for making me aware that it's something I should get checked out.
I hope things start going better for you and I'll be following this thread.
Thanks to this thread, I've made an appointment with my doctor next week. Hoping it's nothing serious, but thanks OP for making me aware that it's something I should get checked out.
I hope things start going better for you and I'll be following this thread.
Have they talked to you about lupus? It's more common in women but a positive ana is highly indicative of lupus.
OP
OP
Thanks! Good idea on getting checked out. Ask for blood work and urine test for sure. Other things can cause it like dehydration and diabetes, but there is nothing to lose by getting checked. The entire key is to catch it as early as possible. Let us know how it goes!
They have, but my doctor doesn't think that's it. I have a cousin with lupus and my sister has all sorts of problems and at one point they said she had it but then said she didn't. It's a very weird situation.
I had a follow up last week with my neph. My protein spillage has gone down a bit andbother nunbers remained stable. That's great news because it shows the insanely high amount of Prednisone they have me on is working for now, after two weeks on it. I go back at the end of this month and it will go a long way to really say how I'm progresing.
I've been looking at a number of clinical studies here lately. My condition is so incredibly rare that no one truly knows what to do with me. I've spoken to various doctors and organizations around the country and they are all interested in using me as a guinea pig. I have no problem with it, I'm up for anything that may help.
I did meet with one researcher and they paid me $125 for doing a one hour phone interview with them. It was incredibly therapeutic for me, to talk with someone about everything. I almost felt bad for taking money, it felt like I spoils have been paying them.
I have also lost almost 20 pounds over the last three weeks because of my drastic change in diet. That has helped my blood pressure substantially! One thing that dealing with kidney disease has taught me for sure is the "secret" to weight loss. I guess drastically cutting back on sodium, sugar, potassium, phosphorus, all dark soda (and most soda in general) and the vast majority of fast food and restaurants overall out of your diet will kinda do that for ya. Long story short, deprive yourself of all of the foods and drinks that taste the best and makes you the happiest and the pounds will fly off!
Which mod would I speak to about having them changing the title of this thread?
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OP
OP
OP
OP
Thanks a ton. I'm really anxious about my next bloodwork results and visit to the neurologist on the 27th but I have my fingers cross this remains a trend!
I have been trying to find a decent salt alternative ever since this mess started. This stuff is 100% legit. I had put off buying it because of the price, this 3oz bottle was around $10, but I now wish I had just bought it first thing. I got it in the mail and cracked it open to taste it. The second it hit my tongue I could instantly taste and feel the typical "salt sensation". Let my wife try it and she could tell it too. I got a little bit more and ate a small baby spoon of it and it was just like eating salt. I'm stunned at this, nothing else I have tried has come even remotely close to tasting anything like this, this close to salt. I can't wait to try this on different things now.
You can order a sample of it directly for $1/shipped!
http://www.bensonsgourmetseasonings...=Products^/category|Previous^/category/227115
It's so close that it reminds me of that Seinfeld episode where the yogurt shop opens up claiming to be fat-free and everyone gets hooked on it and gained weight and it ended up being a lie. It is surely sorcery of some sort. What would it be that's in it to get so close?
I had some fries I ordered earlier with no salt and tried this stuff on them and my God, just exactly what I've been needing.
OP
OP
I'm not on any sort of liquid restrictions or anything like that by volume. I drink water throughout the day, then whatever else I drink with meals. I'm just off of dark colas and really cut back on anything else with sugar in it.
Oh ok because I have had kidney issues in the past and pretty much cut out all liquids outside of water and trippled my daily intake of water a day. I occasionally will have a glass of orange juice or tea and my piss is no longer cloudy and my kidneys are ok. I use to drink soda by the liters daily so I think that's what wrecked my kidneys.
OP
OP
Got ya. Yeah, I'm sure soda didn't help me at all. I have been addicted to Diet Dr. Pepper and Diet Wild Cherry Pepsi for a while now. I'm glad I can still have my sweet tea.
I also feel that my mono from when I was younger and my two bouts with H Pylori caused my current situation as well.
Hey man, I can't speak about the specifics of your condition, but a few months ago doctors discovered a cancerous tumour in my chest (a thymoma) that has to come out very soon. It's major surgery that requires a full sternotomy (i.e. cracking open my sternum).
All I can say is that once the initial shock of it all passes, it's amazing how resilient your mind can be and how easily it slides into a positive "okay let's take this one step at a time" mindset that generally allows you to go about your daily life in a pretty normal manner while you go through the treatments you need to go through.
Like you, I have a small child that adds a degree of fear and uncertainty to the equation, but rest assured, you can get through this, and once the initial shock passes, you will be able to get your head around everything to a degree which will actually surprise you.
I always felt like I was a very non-resilient person, but at the same time, this was the first REAL test of serious shit being thrown at me, and I am stunned at how I am handling it. The mind and the survival instinct is an amazing thing.
Switch to unsweetened. for your own good. Sweet tea is poison.
So, weird story, but literally this exact same thing happened to me last year - without the foamy urine. I was totally asymptomatic, but my creatinine was off the charts. This happened when they checked it again, but it was even worse. I saw a neurologist, and he looked at me, super confused, and asked "are you feeling...all right?"
Next test had my levels back to normal. We never got to the bottom of it, but it seemed to have resolved itself. Hope your experience is similar. Sending you positive vibes - stay strong.
Edit: Didn't realise the OP was older and there have been developments since. I'm so sorry things are much more complicated.
OP
OP
I'm in the process of doing so, I'm slowly weening myself off it by reducing the amount of sugar over time. So far so good.
OP
OP
Well, here I am, four years later and I'm not done yet! It's certainly not better though, it has slowly gotten worse, but I'm still not on dialysis and I haven't yet needed a transplant. I'm certainly headed down that road though. When Covid entered the picture my doctors told me that it could very possibly kill me, and if not, damage my kidneys even more so. I went all through 2020 and 2021 and most of this year just fine, then BAM, a month or so ago I got badly ill, thought i was dying and tested positive for it after all that time. It actually went through our house and my wife got it, my mom got it (she helped take care of our two daughters) then my 5 year old got it also.
We ended up making it through covid, but my kidney doctor requested that I have blood work done ASAP to see how it affected me. Sure enough, bad news. My egfr had dropped to 15.6. The magic number to really get serious about dialysis and transplant is 15. I freaked out, he changed my meds and told me to test again after four days. Thankfully it went back up to around 22, which doesn't sound great, but I am much happier at that level at least.
In the years since 2018 I have had multiple friends I met in online support groups pass away from these horrible diseases. One of the first to ever offer me support passed away just a few days ago, and it hit me hard. I am still only 42 years old, I have a wife, a five year old and now an 18 month old and I'm still having a hard time just framing all of this. I know where I'm headed, and I just hate it. When I was first diagnosed I was told I'd be dead, on dialysis or need a transplant within 8 months. I have lasted way longer than my doctors predicted, longer than most with my exact issues last and I'm grateful for that. Even still, I can't help but feel like I'm living on borrowed time at this point...or at least my current standard of living is on borrowed time. A little while back I was moving some stuff to our storage locker and I had my oldest daughter with me, 4 at the time. No one else was around and the lot was empty so I told her to climb up in my lap and I let her help drive our suv. I certainly didn't tell her why, but to me, I did it because I truly do not believe I'll be around to let her do so when she is closer to legal driving age, so I wanted her to have that experience with me, and I wanted to have it with her.
As far as how I physically feel, I get tired very easily. My heart races when I do the least bit of physical activity and I just feel fatigued and tired all the time. Other than that though, I don't feel all that bad. I have been through multiple meds, but I've been on Prednisone pretty much the entire time (20mg a day now). I've been through a round of a chemo pill and I'm not taking two blood pressure meds and an immune suppressant pill that makes me catch almost anything that I'm around. I'm lucky I've only had covid that one time with how weak my immune system is at this point. I go back to the doctor in a few weeks, so we shall see how things are going at that time.
We ended up making it through covid, but my kidney doctor requested that I have blood work done ASAP to see how it affected me. Sure enough, bad news. My egfr had dropped to 15.6. The magic number to really get serious about dialysis and transplant is 15. I freaked out, he changed my meds and told me to test again after four days. Thankfully it went back up to around 22, which doesn't sound great, but I am much happier at that level at least.
In the years since 2018 I have had multiple friends I met in online support groups pass away from these horrible diseases. One of the first to ever offer me support passed away just a few days ago, and it hit me hard. I am still only 42 years old, I have a wife, a five year old and now an 18 month old and I'm still having a hard time just framing all of this. I know where I'm headed, and I just hate it. When I was first diagnosed I was told I'd be dead, on dialysis or need a transplant within 8 months. I have lasted way longer than my doctors predicted, longer than most with my exact issues last and I'm grateful for that. Even still, I can't help but feel like I'm living on borrowed time at this point...or at least my current standard of living is on borrowed time. A little while back I was moving some stuff to our storage locker and I had my oldest daughter with me, 4 at the time. No one else was around and the lot was empty so I told her to climb up in my lap and I let her help drive our suv. I certainly didn't tell her why, but to me, I did it because I truly do not believe I'll be around to let her do so when she is closer to legal driving age, so I wanted her to have that experience with me, and I wanted to have it with her.
As far as how I physically feel, I get tired very easily. My heart races when I do the least bit of physical activity and I just feel fatigued and tired all the time. Other than that though, I don't feel all that bad. I have been through multiple meds, but I've been on Prednisone pretty much the entire time (20mg a day now). I've been through a round of a chemo pill and I'm not taking two blood pressure meds and an immune suppressant pill that makes me catch almost anything that I'm around. I'm lucky I've only had covid that one time with how weak my immune system is at this point. I go back to the doctor in a few weeks, so we shall see how things are going at that time.
Interesting to see an update after so long. Congrats on making it this far and hopefully you can keep pushing ahead awhile longer.
keep your chin up amazing things can beat the odds.
Would a transplant if it gets to that point like reset your kidneys to not have the disease (beyond having immunosuppressant drugs)?
Would a transplant if it gets to that point like reset your kidneys to not have the disease (beyond having immunosuppressant drugs)?
Thanks for the update OP
Its a slow disease, last lab i did my eGFR was 41% and that was from 35-36% two yrs ago. So have hope its slow disease. I also have a bad diet as well but at the same time i am lucky as its slowly progressing for me.
Haven't caught COVID yet but jabbed 4times. Only thing that has changed me for is some meds, off one BP med and on farxiga now. Two BP meds were causing me to have high potassium levels.
Also has your Neph discussed with you about getting Hep B shot? if not already done? in Au you require one to get on the transplant list. Its more effective when you have more kdiney function than less kidney function.
Sadly if they find a cure for Iga tomorrow, the underlying damage that has been done we will still require a transplant.
Its a slow disease, last lab i did my eGFR was 41% and that was from 35-36% two yrs ago. So have hope its slow disease. I also have a bad diet as well but at the same time i am lucky as its slowly progressing for me.
Haven't caught COVID yet but jabbed 4times. Only thing that has changed me for is some meds, off one BP med and on farxiga now. Two BP meds were causing me to have high potassium levels.
Also has your Neph discussed with you about getting Hep B shot? if not already done? in Au you require one to get on the transplant list. Its more effective when you have more kdiney function than less kidney function.
Sadly if they find a cure for Iga tomorrow, the underlying damage that has been done we will still require a transplant.
Hows it going, Downhome? Any progress toward transplant? Hope all is well!
OP
OP
Hey thanks for asking. Here is what I posted elsewhere recently…
For those that have followed along, here is a quick health update on my kidney issues. Quick background, I am stage 4 chronic kidney disease and I have two different diseases - IgAN and FSGS Collapsing variant. Both are rare ailments, collapsing variant is the rarest form of FSGS (and the worse), and even more rare to have both simultaneously. When I was first diagnosed in October of 2018 my doctor told me that I would be dead or on dialysis or require a transplant by April of the following year. I owe my life to that initial doctor, as he had no clue how to truly treat me but decided on a course of action that did wonders for me.
Last week my doctor called telling me he wanted to put me on a new medication called Filspari. It is a new FDA approved medication, new as in just the last month or so, created for the sole purpose of treating IgAN. It is actually the first and only non-immunosuppressive therapy for the reduction of proteinuria (protein in urine) in IgA Nephropathy. Since my journey first started, I have constantly been on immunosuppressive medications, leading to me getting sick all the time. The fact that such a medication exists in the first place is nothing short of a miracle. Even if it didn't do much more than what the meds I've been on has been doing, it would be worth it just to keep it from killing my immune system!
The goal of this medication is not a cure, but a substantial delaying tactic. The purpose is to decrease the amount of protein in urine, to then lessen the damage done to the kidneys in the long run in adults who are at risk of the disease progressing quickly. This could delay or prevent the need of dialysis or transplant.
Travere Therapeutics contacted my nephrologist letting them know about the medication and asked if they had any patients that could benefit from trying it out. I was the only one they agreed to try it out with. For the last week I have been in talks with Travere very closely. This medication is meant exclusively for IgAN patients, not FSGS. I was informed that as of this time I am the only individual they have found in my current situation (having both IgAN, FSGS Collapsing, race, age range) and they are interested in putting me on it for that reason. Their goal is to get this medication approved for FSGS patients as well, and since I have both diseases, I am to be used to see if it helps with both sides of things. This could lead to the approval for the medication for those with only FSGS. Because of this, if my insurance does not end up paying for this medication (it's around $1500-$2000 a month), they are going to give it to me completely for free.
In starting this regiment, it will require monthly blood draws. One to track the progress of the kidneys, but also to track the function of my liver. One of the potential risks are liver problems, and they want to stay very, very closely on top of that. I will be in constant communication with Travere Therapeutics and of course my personal nephrologist.
I have no clue if this will work or even help, but it did some amazing things for folks in the trials. I thank God that he blesses certain folks with the gift to come up with and create the medications that can help people like this. He certainly works his wonders through people.
Then this uodate…
I got my Filspari pills yesterday morning and I started taking it last night. It's the new medication I mentioned a short while back. Insurance covered it and the manufacturer is paying the co-pay to make it completely free for me. This medication was priced at almost $9k a month, the lowered to around $2k to compete with another med. I'm very, very lucky.
Two weeks on 200mg then 400mg after that. I had to stop taking my Losartan and will need to be put on something else if it screws up my blood pressure but I'm ok with that. I have to have liver tests done every month and stay in consistent contact with my doctor and the manufacturer to uodate them on how I'm doing on it. Hoping and praying I see good results with this, and hoping we see good things in terms of it helping my collapsing FSGS as well so it can be approved to treat that for others as well!