Confused about FSGS!!

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Vicki
Posts: 27
Joined: Mon Aug 16, 2004 1:40 pm
Location: Cambridgeshire

Confused about FSGS!!

Post by Vicki »



Hi. I'm new to this, and I guess you all can tell me alot more than doctors can about how this whole thing feels. Although, as I have read, alot of you have kidney problems worse than mine, I'm worried about how I'm feeling.

I was diagnosed after feeling tired all the time and having lots of protein in my urine. I had a biopsy at Addenbrookes last October (trust me to have one done by a registrar who didn't like to use too much anaesthetic!! :( ) and was diagnosed with FSGS.

I was started on a high dosage of prednisolone, which made me put on loads of weight (just in time for my wedding this May! :D ). The steroids didn't work, and I was then started on cyclosporine. I also take statin to lower my cholesterol and lisinopril to lower my BP.

In the past year, I have been feeling really rough. I'm always extremely tired, achey, and have no motivation. My consultant says it's because of the cyclosporin that lowers my immune system. However, I'm missing lots of work, and was basically interested if anyone else who has FSGS has the same symptoms as me? Although this sounds bad, it would make me feel better if someone did, because I'm beginning to think it's just me!! :(

Thanks for reading!!

Vicki
Mike
Posts: 1594
Joined: Fri Apr 23, 2004 2:47 pm
Location: Mansfield :o)

Post by Mike »

Hi,

welcome and sorry that you're not feeling too good. I know eaxctly how you feel, I've got FSGS but from the sounds of things I may be a bit further advanced.

Do you know what you your creatinine or creatinine clearance (kidney function) is? generally you wouldn't be considered for transplant or dialysis until your function is 15% or less.

I was put on steroid and cyclosporin a few years back and they did nothing for me and like you I put on a lot of weight, I had a constant cold due to my immune system being suppressed, and I think I suffered from all of the side effects :(

once I was taken off them I felt much better but my function has reduced now to 15% and I feel tired, achey, sick but that is due to my low function.

hope you feel better soon and you're not the only one :D

mike
amanda in CA
Posts: 1806
Joined: Fri Apr 23, 2004 5:14 pm
Location: Georgia, USA

FSGS

Post by amanda in CA »

My initial diagnosis was FSGS but my docs later admitted that by the time the damage is advanced it is less easy to categorise renal failure accurately. My early symptoms were low haemoglobin, many years before I got other symptoms and my renal failure was diagnosed. Is this an issue with you since this can make you feel very low in energy? Is your creatinine at a stable level or has it increased recently, indicating a decline in renal function. In my experience the percentage of renal function is only a rough guage for starting dialysis and it is more to do with how you feel (at least in the UK, Medicare in the US can be a bit more tough on sticking to a percentage, however, a doctor can over-rule this as mine did with me to get me started earlier). I wish you all the best, Amanda
JMan
Posts: 3470
Joined: Fri Apr 23, 2004 10:21 am
Location: Lives in a slightly weird bit of Shropshire called Telford!

Post by JMan »

I don't have FSGS but your symtoms are fairly typical of kidney problems..

However http://www.kidney.org.uk/LocalGroups/addenbrookes.html

might be of use to you if you want to make contact with people in your local area.

Welcome to the board in any case.
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
Read my blog:)
Live to Fly
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Vicki
Posts: 27
Joined: Mon Aug 16, 2004 1:40 pm
Location: Cambridgeshire

Post by Vicki »

Hi,

Thanks for posting your replies. My creatinine is usually at about 64, and my consultant says my kidney function doesn't appear to be getting worse, but I just seem to feel so low, tired and achey.

Since I last posted my consultant has advised me to stop taking the cyclosporine and she'll check my kidney function again when I go back in 3 weeks.

I'm not sure what percentage of my kidneys are working properly. I know that my disease can't be too advanced because my doctor never seems too concerned about my blood tests. I just feel so rotten all the time! I've been signed off work for four weeks now, and I find everything exhausting.

Looking forward to your advice!

Take care,

Vicki
Mike
Posts: 1594
Joined: Fri Apr 23, 2004 2:47 pm
Location: Mansfield :o)

Post by Mike »

Hi,.

I not sure that I can give you any information myself but maybe someone else may have a better idea. You creatinine is pretty low in the normal range which is good (mine is 584 but my function is 15%). I've really no idea why you would feel so tired, there must be something else, maybe a viral infection or something like that? and I can't remember whether I felt tired when I was taking cyclosporin.

hope you feel better soon

mike
JMan
Posts: 3470
Joined: Fri Apr 23, 2004 10:21 am
Location: Lives in a slightly weird bit of Shropshire called Telford!

Post by JMan »

Heres a Question..

Have you had you Hb (red blood count) and ferritin (iron) levels checked.. Low levels of these could point towards anemia.. And that DOES make you feel very tired, lethargic and unmotivated..

Other physical symtoms include looking pale (esp lips and ears/extremities) and feeling heavy limbed &/or getting breathless when climbing stairs. Possible dizziness is also one..

If your anemic your doc should be treating this. Get it checked out.

Good luck.
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
Read my blog:)
Live to Fly
Image
http://www.flickr.com/cybercast
Vicki
Posts: 27
Joined: Mon Aug 16, 2004 1:40 pm
Location: Cambridgeshire

Post by Vicki »

Hiya,

I've had my Hb tested and everything's fine! Back at work now, thank goodness!

I've been taken of the cyclosporine, and am going back to Addenbrookes on 14th September to discuss what to do next.

Thanks for your replies,

Take care,

Vicki
Doolally
Posts: 379
Joined: Fri Oct 01, 2004 5:20 pm
Location: UK

similar symptoms to Vicki

Post by Doolally »

Hi Vicki, I have just joined the forum and was reading over some of the messages. I was interested in yours because you seem to suffer in a similar way. You're also in about the same place as me on the kidney front in terms of creatinine & function etc. I have MCGN which is very similar to FSGS. It was first picked up because of fatigue & protein leak. I was put on Cellcept (immunos) & Prednisolone along with other stuff for BP etc.

How are you feeling these days now you've returned to work? I had to give up work completely in the end because I was so tired, weak and sore all the time. I probably could have coped just doing a few hours a week but my job meant commuting (on six trains a day) into London. Its a shame because I loved my job - I wish they'd been ten minutes walk up the road!! Since then I've done odd bits of voluntary work on and off.

My doctors tell me I shouldn't feel so bad and so they just ignore those symptoms. So I was releived to hear I'm not the only one! Although I do hope you're coping better with work after your break.

I've moved to Eastbourne and have a new GP and a new Neph in Brighton who are both a lot more interested in the whole me (I'm not just a pair of kidneys walking into the consultation room!!). So maybe I'll get a bit of support on this at last. It gets quite depressing being stuck at home when I'm made to believe I'm putting it on or something.

Would love to hear more about your experiences.
Robin in Hungary
Posts: 8
Joined: Fri Apr 23, 2004 6:29 pm

FSGS - comparing notes

Post by Robin in Hungary »

Hi. Always good to touch base with other FSGSers.

I was diagnosed about a year and a half ago at age 40 (massive aedema, proteinurea), began prednisolone treatment in August 2003, kept things under control for 8 months or so, dosage down to 4 mg every other day. Went through what seemed like most of the side effects, they were just all going away, even the joint pain from 'withdrawal'...

...and then relapse (number one - I don't doubt that there are others to follow) in August 2004. No explanation for what triggered it. :cry:

So now I'm on back on a yet higher dosage of 90 mg of pred a day, some reduction seen in proteinurea but still way off target, possibility of combined treatment ahead (cyclosporine mentioned, sounds like another nasty one). Creatine at 65 right now, not sure of kidney function figures. Still early days...

In the first round I also went through tiredness and achy-ness and lack of energy or interest in much (except cooking and eating - yes, I gained weight too). Anemia was part of the problem for a while. My doctor, who is on the cautious side, wanted me to stay away from work for the first semester (I teach) because of the reduced immunity. So I stayed home for 3 months, more or less...I did actually pick up a few miscellaneous classes to keep my mind and social connections alive, and fortunately never did pick up any infections. I also drifted through days. The second semester the pred dose was down, and I went back to work - but I ended up taking the whole year off the graduate program I'm studying on.

So now, the second round. I'm still working, and still energetic (a bit manic at times, even). I seem to remember crashing in November last time, so I'm trying to get bigger projects out of the way while I can. I'm back in grad school, and hoping I'm not over-committed - but life and other concerns go on, I refuse to be ruled by this (temporarily dominated, possibly!). Currently most troubled by bouts of insomnia (usually after one of my frequent night-time trips to the WC). Trying hard to keep my weight from going up again this time.

My husband is supportive, people are generally understanding of my limitations, I'm pleased with the level of medical care that I get. My doctor listens to me, thank goodness. :)

I have the added complication of going through this in a foreign country -- I'm an American living in Hungary -- and language (though many of nephrologists can manage in basic English) -- not to forget culture! For instance, who my primary-care doctor is is partly determined by envelopes passed under the table...of course I'd be entitled to care without it, but bounced from doctor to doctor. There's a national health system here that covers everything except a portion of out-patient medication, which is a huge help - as long as I can keep my job!

The input from this bulletin board is really important for me in this situation - a big thanks to everyone who posts!

So that's my case at this point. Of course I was disappointed about the relapse, but feel I'm doing well to have gotten a year out of the first attempt. And we shall see how it goes.
Hal
Posts: 617
Joined: Wed Apr 21, 2004 9:56 am
Location: Liverpool, UK

Post by Hal »

Hi Vicki,

Sorry to hear of your troubles. I have a similar disease MPGN (which I believe is the same as MCGN - Ali in Eastbourne you will be hearing from me! LOL), which causes me to leak protein like yourself.

In addition to the comments you have already received, do you know your albumin and total protein figures ? These are probably low due to the protein leak and this can make you feel tired and rotten (especially as the body is struggling to make more protein to keep up with the amount you have lost).

For a more accurate rating of kidney function, it would be good to find out your creatinine clearence / GFR figures. Have you had a 24 hour urine test done ? This should provide these figures and also how much protein you are losing. Unfortunately the creatinine alone is not the most accurate of measures for determining kidney function since it varies person to person, by sex, weight, muscle mass etc.

A great tip I would give is always insist on getting a copy of your blood and urine results for yourself. Even if you do not understand them you can always gain an explanation from people here or elsewhere on the Internet - its always good to keep a record.

Also when you go to an appointment, take a list of questions written down and make sure the doctor answers them all !!! (sorry if that sounds patronising).

Also - please do not be alarmed by this - but there are plenty of situations when doctors do not monitor things as closely as they should and let things slip too much before taking action. I'm not saying your doctor is a bad doctor or isn't monitoring you closely enough, just advising you to make sure they are looking after your properly :) Doctors unfortunately are not as concerned about our health as we are, especially if they see plenty of similar kinds of cases.

Feel free to Private Message me.

Best Wishes,

Hal
Vicki
Posts: 27
Joined: Mon Aug 16, 2004 1:40 pm
Location: Cambridgeshire

Post by Vicki »

Wow! Three people who know exactly what I'm talking about!!

The doctors seem to think I should be feeling fine because my blood tests are great at the moment. I get very tired, achey and emotional sometimes. I know it's not because of my homelife, and it's difficult to explain to my husband how I feel, and I'm not down because of him. It also feels sometimes like I don't want to tell people how I feel, in case they get bored with hearing about my kidneys!!

Ali - hopefully you'll get a bit more support now you've moved doctors. I'm sure they just see us as patients and not people! The last neph i saw (not my usual one) said my kidneys would fail in 2-10 years, which is pretty crap at 21 years of age, and he said it as if he was talking about the weather!!

I work 20 hours a week. I used to be a phlebotomist (taker of blood! I'm sure you've all met a few of us!! lol) every morning from 9-1, but couldnt cope with getting up so early. How do you all feel first thing? I seem to get better as the day goes on. My boss was great and offered to change my hours from 2-6 doing reception work. Its not as much fun, but i've coped much better. Still thinking about giving up though. I sometimes find it hard to go to work as my body's so sore.

Hal - I've done 3 24hr urine samples, and my total protein loss last time they checked was 6 grams in 24hrs.

Its strange because i've never been told what I should and shouldnt eat. It's almost as if they're waiting for my kidneys to fail before they'll act on it.

Robin - I was put on 120mg prednisolone when I was first diagnosed. They made me so unhappy and I put on two stone in two months. I still have the huge purple stretchmarks to prove it!! They were reduced to 60mg, then stopped completely because they weren't working. Then I started cyclosporine, which didnt make me feel ill, but it didnt work either. Now I take lisinopril, atorvastatin and frusemide to get rid of my fat ankles!! heehee!

It's great to hear from other people who know what its really like.

Feel free to send me a personal message every now and again.

Make sure you all take care.

Vicki xxx
virginia
Posts: 16
Joined: Sat Jul 17, 2004 2:44 pm

feeling like poo

Post by virginia »

Hi. I have been reading through this topic and what you have been saying about feeling awful, even though your lab results don't reflect this.

I have been having the same problems (I have FSGS, the dr.'s think. 50% function). I am not on a kidney diet but I am sure food has something to do with the way I feel sometimes....tired, depressed, headachy, body achy, nauseous etc.

I don't feel like this all the time so I started to keep a log of what I was eating. Gradually I managed to figure out that if I ate certain foods, the next day I'd feel like I'd been drinking for a week. I don't think it's an allergy because I never had this problem before my kidney started leaking protein and my blood pressure went up. It seems to be nuts, bread, certain cereals, anything overly salty and bananas. I'm sure I'll need to add to this list at times. Sadly, some of my favourite foods.

I don't know if this is any help at all, but it seems to be working for me at the moment. Hope you start to feel better!

Also, I know what you mean about the time frame thing. My neph said 10-20 years until kidney failure and 10 until I start to feel really yucky. Quite a time scale. Sometimes I think I'd rather have it over and done with now....but I'm sure if that happened I'd be pretty unhappy about it too! I have started looking at it as a matter of how much excitement and accomplishment I can squeeze in now while I'm relatively healthy. I'm sure a positive outlook goes a long way in stalling things for a bit ....or this is what I tell myself anyway! :D :wink:
nycpetit
Posts: 262
Joined: Fri Apr 23, 2004 11:00 pm
Location: Miami Beach

FSGS

Post by nycpetit »

Well, I don't want to get blasted here, but there seems a large number of FSGSers that say that's what caused the renal decline, only to later find out, "well that was a sketchy" diagnosis. At least my doctors, like Amanda's don't really know if FSGS was the cause, I mean for a while I had NSAIDS or non-steroidal anti-inflammatory drug syndrome, then minimal change disease (this WILL be controllable for life with interventions of steroids said my then doctor), and then I had interstital nephritis and FSGS. And yes, I had two biopsies, in the end, the result was what had to be dealt with. Failed kidneys and need for transplant.

I was a professional ballet dancer, and when the massive edema started, ugh, buckets of ice cold water to get my pointe shoes on. The edema would come and go in spurts, and last for anywhere from three days to two weeks before subsiding. During those times I would take furosemide to control it, and always and ACE inhibitor. I also bruised easily. I'd get itchy (puritis) on my legs which actually started years ago, I remember getting swollen in my teens too, but it got worse in my twenties. I too had times of feeling so tired, that as I put it, "I could lie down on the NYC streets and just not get up. Where every bone in my body killed me with exhaustion." Wow, I had almost forgotten about that. It was an exhaustion like no other, and no matter how much I slept, it didn't subside.

I also had a low hemoglobin, it was about 11. Which is not low, low, but when it's never higher than that, and you are hugely physically active, then you do tend to notice that not enough oxygen is getting to your blood.

I also tried the steroids, didn't do anything really. I mean for awhile it lowered the protein loss from about say 18 grams a day to 4 grams a day, but still not enough to say it was a success.

I do understand your exhaustion. I easily had it too at fifty percent. I think the protein loss is part of what does it. Plus the albumin drops (that was an early sign for me, along with the hg) further exhausting me.

Just keep talking to your doctor, and time lines, well, they don't mean much really. I think many of us here could assest to that. I had about a year from the time I hit 25%. From that point things seem to move a bit faster.

good luck
Natalie
Robin in Hungary
Posts: 8
Joined: Fri Apr 23, 2004 6:29 pm

(lack of) energy & food

Post by Robin in Hungary »

Hello again. Vicki, you asked about feeling tired in the mornings...for me, it's the opposite. Mornings are about the only time when I can get things done effectively. I tend to wake around 5:00 or 6:00, even if I've had a bout of insomnia in the night.

And I never know quite when I'm just going to run out of energy. It's not fading out - more often a huge and sudden drop in energy - sometimes I'm just going about normal activities around the house and think "I NEED to lie down on the sofa NOW". One round of EuroNews (30 minutes) usually is enough - or I might fall asleep there for a couple of hours.

Oddly, though, I almost always have full energy when teaching a class - but it can be a struggle getting through the post-class routine of erasing the board, closing the windows, turning off the lights and dragging myself back to my office.

About weight gain - I've heard the term "wolf hunger" used to describe the fierce hunger that can attack people on prednisolone. It's starting to hit me again, and I know that when I succumb, everything else gets worse. I've heard (sorry, no backup on this - I can take a look through my files) that under the influence of this steroid the body processes some substances differently, and as Virginia says, breads and pasta ought to be avoided.

Virginia, although general advice is availabe on the web, you should also be able to get access to a renal dietician. Ask!! You need to know what numbers to be shooting for, in your particular situation. For instance, I'm limited to 75 gram of protein a day (animal & vegetable), and on a low-salt, low-spice, low-cholesterol diet. I don't have potassium restrictions (bananas are very high in that!), so vegetables are not a problem for me, luckily. My basic diet is, however, not low-calorie - over 2000, I think it was. I should probably go over my target numbers again with the dietician now that I'm back on high doses of pred. Balancing all of these things takes practice, and I've become lazy with time. And the past couple of days I've been eating out (which almost always means too much salt) and vastly overrunning my fluid intake restriction of 1200 ml (including of course soup, intake from fruit and vegetables, etc.), and as a consquence not feeling too good (and dreading stepping on the scales).

-- Robin
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