Symptoms, or just life?

[mm2010]

Hi All,
A little background...  I started taking new medication to try to delay the progression of IgA, about 3 weeks ago. Since I have never been sick a day in my life, this is all very new.  The medication is essentially an attempt to suppress the immune system, with a combination of Prednisone and Myfortic.  When I was first diagnosed, they put me on blood pressure medication, to lower my blood pressure, which really wasn't that high anyway, but I learned this the standard for stage 3 patients.

So I've always been fairly healthy, not overweight, and strong for my size, 165 lbs.  But recently I am noticing I am what I would describe as "easily winded."  Yesterday I needed to do some drywall work to repair a damaged ceiling, and I found myself sitting down to catch my breath a lot.  Not a big obstacle, but annoying none the less.  I worked in construction for years,  and my endurance levels were much better than they are today.  I just turned 47.  Am I just getting older, and need to slow down a bit?  Is my medication causing this? Is this an early warning sign of CKD?   

Another strange observation.  Last night, after working on the ceiling, we sat down to dinner and my hand kept cramping up while trying to hold the fork.  Really painful.  It was like I couldn't control it, my hand wanted to contort into some bizarre position, and I had to force it to relax.  This went on for hours, first one hand, then the other, then I started to feel it in both feet, but not as bad.  I suspect its muscle fatigue, but I have never had muscle cramping last so long.  It was midnight and I was still fighting it, trying to relax my hands from cramping up.

Jan 6, I am back for my followup with the Neph, I will share my observations with her, and see what she says.  I suspect she will say, "your not in your 20's anymore"
Oh yeah....
Happy New Year everyone...   
 

[Henry P Snicklesnorter]

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[mm2010]

Thanks HPS.
Ever since I was diagnosed, its been a real learning curve.  Since I have no experience with illness, every little thing gets chalked up to aging.  I will certainly share my observations with my Neph when she is back on the 6th. I am doing weekly bloodwork for the next 6 months, to see just how well my medication is doing.  I'm not one to panic, but I will heed your warning.  Hearing you can swing a shovel all day is what I remember as a fond memory. I wouldn't try it today, but look forward to it again, once we get my health challenges under control.  Encouraging words to hear.  Thanks again.

[onestronglittlelady]

I knew I was headed toward dialysis. I put it off as long as I could. I was at work and so short of breath I was worried I might pass out. I worked in a cheese factory, too much concrete and stainless equipment for me to risk it. I was admitted to the ER, the cath. was put in and I started dialysis the same day. I would take it easy until you can check in with your doctor.

[jbeany]

Make sure they are checking your hemoglobin and iron levels.  Easily fatigued is a common symptom of being anemic, and that is controlled by the kidneys.  My docs all told me that Stage 3 kidney failure shouldn't yet affect the kidney-produced hormone, erythropoietin (epo) which controls the rate your bone marrow makes those all-important red blood cells. 
My kidneys didn't get the memo.  I ended up on shots of Procrit and Aranesp (brands of artificial epo) for years before my kidneys went to the final stage and required D.  By the time they figured out that I needed the meds, my hemoglobin was 6 instead of a the 12 or 13 it should have been.  It took me half an hour to get up a flight of steps because I had to stop on every other one and catch my breath.
Have them tell you an actual number, too - not just "It's fine."  In the final stages, they consider a hemoglobin of 12 "fine" for men and women.  They keep it that level because of complications with clotting and other issues when you are on D.  It actually runs higher in men, though, so an actual healthy level is closer to 14 or 15 or more.  If yours ran naturally higher, a drop to 12 could still make a huge difference.
If your iron or ferritin levels are low, that will make a difference too.  The bone marrow needs iron to make the red blood cells, so having enough epo in your system isn't enough.  If your stomach can handle it, you can take that orally in a liquid or a vitamin.  If not, there's an IV option that takes all day to drip in slowly, but it's worth it for the extra energy the next month or two.

Have them check to see if your potassium is low as well.  That can cause cramping - think of runners sweating it off and needing bananas.

If your doc ignores you, find a new one who cares about your quality of life.  There's no reason to live with treatable symptoms just because you have a chronic illness.  Hope you get some answers!

[cariad]

Short of breath can be a symptom of many things, but fluid build up and anemia are two of them that are CKD related. Do you know your GFR?

I did not feel any different until my GFR went below 20, and then I went years with good days and bad days.

Have you tried quinine (in the form of drinking tonic water, or getting capsules) for the cramping? I get leg and foot cramps occasionally, but those are the type of thing that can afflict anyone periodically, so in my case I think it's nothing. Quinine works a charm for me every time, although jbeany is right, make sure all of your numbers are in balance. There was another thread here very recently about hand cramps that you might want to check out as there were several ideas on things to check and try to combat them.

Good luck!

[mm2010]

My last gfr was 40, but that was about 2 months ago.  We will see next week what the latest numbers are.  Getting winded from doing basic things, climbing stairs, shoveling snow, or doing regular work around the house is what made me wonder. This is still all of this is very new to me, and I sometimes wonder if I'm noticing stuff that is perfectly normal.  I think my biggest challenge is learning to deal with illness, since I've never been sick, I'm not really sure what to expect.

If things go well for me, it will be a long time before function falls below 15, and with luck, the medication will keep me where I am for many years.  I suppose to be realistic, sometimes these things don't always go like we hope, and if dialysis becomes a part of my life, then I will be spending lots of time here looking for everyones help and support.  I'm so grateful for this site.  Its been a big relief to talk to real people, who have the experience and knowledge to help others learn and adapt to life with CKD.  Thank you all for all the feedback.
Mark

[rsudock]

the "easily winded" could also be fluid build up in your lungs, which in return could mean you are accumulating fluid around your heart which is very bad. this pericarditis (build up of fluid around the heart) is making the heart work harder... do you have a blood pressure cuff at home to check?

I had terrible cramps in my feet and toes before I started dialysis. It was so painful and like my toes had a life of their own twisting the way they wanted...scary stuff.

thinking of you....if you feel worse go to the ER please!

xo,
R

[MooseMom]

When I started taking bp meds, I noticed that my larger muscles became easily fatigued, especially my arms.  I liked to hang my bed linens out to dry, and that became a real chore...all that lifting my arms up got hard!  I mentioned it to my GP, and he said that was a common side effect of the atenolol I was taking, and he reduced the dosage.  Problem solved.  Can't say that this is what is happening to you, but it's something to ask about.

[Deanne]

Are you on prednisone now? It sounds like potential side effects to me. My prednisone side effects included muscle wasting. I could hardly walk after a couple of weeks because of it. It was a big challenge to step on and off a curb, walking up stairs was torture, and I had to carry groceries in from the car one item at at time because that's all I could lift. I also had horrible muscle cramps in my hands and feet.

[mm2010]

This is week 4 of Pred, and I have no experience with this, or any medication, so I'm basically guessing.  I wonder if I am just getting old/lazy, or am I feeling old/lazy because of the medication?  The hand cramps are better, but it was very strange to have this for such a long duration.  I have had muscle cramps in the past, but never like that.  If 4 weeks of Pred is long enough to get symptoms, what will it be like at 6 months?  I suppose as long as any side effects are manageable, then any delay is dialysis is worth it.  So many things to worry about with Pred, bone loss, is the biggest fear.  I would hate to end up crippled and on dialysis, when earlier dialysis would have avoided the bone loss issue.  Scary times when you're take medications with no real certainty what they will do.  More blood work tomorrow, and visit the neph on the 6th... Stay tuned.

[cariad]

Physical side effects should dissipate as your body adjusts, but I seem to remember you are on monstro-sized doses of prednisone. Is 80mg a day correct?

Prednisone is not a nice drug. Some people do fine on it longterm, but even on a prescription of 2mg a day (that was the prescription, it would not have reflected actual usage if that makes sense) I felt much better off it. I would question a dosage that high, though I agree, if it delays dialysis, almost any side effect is worth it. Stress on the 'almost'.

I don't get the highs anymore that I had on prednisone, but I also do not get the lows that would last for weeks or longer. It is a drug that can wreak havoc on your psychological state, and at a month on high doses, you are 'in the zone' as they say for those issues to start cropping up. You might want to warn your wife if you haven't already. Mood swings, sometimes resembling bipolar disorder, are commonplace. Could you investigate other immunosuppressants rather than Prednisone? I liked Imuran, as much as you can like these things. Few if any side effects. Oh, and you're also taking Myfortic?! Wow, aggressive regimen.

Oh, and if your nephrologist says 'you're not in your 20s anymore' switch nephrologists! That would be lazy and dismissive, two qualities that you do not want in a doctor. (Seem to remember yours is a good one, though, so doubt that she will say that.)

[MooseMom]

My neph and I have been battling to keep me off of dialysis for six years now; I was diagnosed with fsgs 19 years ago.  I don't know if IgA is anything like fsgs, but, like you, I had always been healthy and a diagnosis of ckd was a real shock.  I don't know if the treatment of IgA must include the use of steroids, but I have never been on steroids.  I was on cyclosporine.  Through my reading of posts on other sites, I know that other people with fsgs have been on prednisone and have not been happy on that treatment.  I had no adverse effects at all on cyclosporine.  I asked my neph why he put me on cyclosporine instead of prednisone, and he told me it was because of the side effects of pred.

Cyclosporine is renally toxic, so it has to be used with care.  I came off of it late last year because it was no longer effective; I had always known that any med I took would not keep my disease from progressing at some point in the future.  I don't know if it would be appropriate for you to ask your neph if cyclosporine only might be a possibility for you, but it's an idea for you to mull over.

[AguynamedKim]

As I caught up on this thread, I was looking at your hand cramping condition with the medcine you are taking and one of the side effects of Prednisone is potassium loss.  I know that electrolyte imbalance, potassium insufficiency in particular can lead to cramping.  As you were doing ceiling drywall work, I imagine you worked the muscles in your hands a lot which could have depleted their postassium levels while your body didn't have enough at the time to level out this electrolyte leading to some bad cramps.  This is all theory on my part, however, and i look forward to you letting us know what the doctor thinks about the symptoms.  I would say don't be shy about the symptoms but you sound very much like you'll be extremely active in educating yourself and doing everything you can to stay pre-dialysis as long as possible.  I very much like your attitude that knowledge about your condition is power to live with it and work through it the best way possible.

[mm2010]

Potassium is in bananas.  I used to eat them a lot, but lately, past couple of months, I just haven't bothered with bananas.  No particular reason, just haven't had a craving for them.  I also learned that my friends here on dialysis avoid bananas, maybe I was avoiding them to see just how much I would miss them.  Anyway, after my experience with the cramping, first thing I did was have a couple of bananas, and I have been trying to eat one a day, ever since.  No more cramping in my hands, and I have been working in the shop, drilling, cutting with a hand saw, power tools of all kinds, without any more cramping.  Potassium deficiency, maybe.  Pred messing with my numbers,,, maybe.  AguynamedKim, (or do I call you Kim ), thanks for the great insight.  I would not have connected pred to potassium, and cramping and potassium only clicked together after I started searching for causes of hand cramps.  But pred messing with my levels is a good hypothesis.  Neph on Thursday, I'm a bit anxious.  I delivered my 3rd blood sample today, along with a 24 hour urine collection.  Here is my best case scenario.  Blood work will show lowered levels of protein in my urine, indicating the meds are working.  I seem to recall I was spilling 3grams, and I think any reduction in this would be a positive sign.  Worst case, the meds are not doing anything, and I will have to "step up my game" to get ready for stage 4. 

I must say to everyone here, and all who have posted, I cannot tell you how comforting it is to have this community to consult with.  Everyone has shown such compassion and support for me and my situation, it really is overwhelming.  In my short time here, I have gained so much that becoming a premium member was the least I could do to help keep this site alive.  Thank you to all the moderators/admins/responders, I might hate dialysis, but I truly value this site. 

[AguynamedKim]

You are welcome to just call me Kim.     I wanted to add that you should always be very careful of your potassium getting too high.  Most people with CKD don't make it to dialysis because of a cardiac event and one of the main causes of a cardiac event for people with CKD is a potassium level that's too high.  This generally occurs in later stages of CKD as the kidney's lose their ability to excrete excess potassium.  I was hesitant to even mention the possibility of low potassium but I should have just added this caveat to my original reply.  I personally was trying to lower my potassium and start eating a CKD Stage 5 type of diet until MooseMom talked some sense into me into eating a more normal healthy diet since those limits weren't an issue yet.  I found it much easier to adapt to a low-protein, low-sodium vegetarian diet (my personal choice to fight CKD at my suspected Stage 2-3) when I wasn't too concerned about potassium.  As things progress, I'll have to watch potassium and phosphorous very closely as well and adjust the diet accordingly.

I very much hope your labs come back good and the medicine is doing it's job.

All the best,

Kim

[MooseMom]

Oh Lord, I have a neph appt on Thursday, too...the waiting for lab results is just horrible.  I've been doing the whole blood draw/wait for results thing for over six years now, and it doesn't get any easier.  My neph gave me a prescription for Xanax if the anxiety of waiting gets to be too much.  I really feel for ya.

I just have two last things to mention.  When I was taking cyclosporine, I discovered that it leaches magnesium out of your body, and low magnesium levels can lead to cramping.  I spoke to my neph about taking magnesium supplements, and he OKd it, and that seemed to work for me.  So you might ask your neph about not only low potassium but also low magnesium.

Knowing that you have CKD can play real mind tricks on you.  I can't tell you how many times I'd feel generally unwell and convinced myself that this was it, that my kidneys were now officially dead, just shoot me now.  And then I'd get my lab results and see that no, nothing had changed, that some numbers were actually a bit better, but overall there was no catastrophe in sight.  And miraculously, I'd start feeling better.  I don't think muscle cramping is psychosomatic in nature, but I just wanted to give you a word of warning that anxiety over your condition can cause real physical effects.  I will tell you honestly that even at a gfr of 15, I have suffered far more emotionally than I have (at least so far) physically.

Last thing that I found to be helpful...keep copies of all of your labs and make some sort of chart in which you plot the more important and relevant lab values.  Over the course of time, you will begin noticing trends.  I've been doing this for six years, and I take my recent labs and my nifty neato chart with me to every neph appt.  My neph's file on me is just enormous, and I can't expect him to have memorized it, so my chart enables me to have quick access to all of my lab values over the past six years.  When I check in for my appt, there is a copy of my labs awaiting my attention, so I actually see them before my neph does.  This way I can be prepared for when the neph saunters into the room.

[woodsman]

I am  at stage 5 CKD and i have IGA also and was diagnosed back in 1997 fast forward to today and after i do heavy griping or just strenuous work i also get cramping in my hands, fingers area. It is after i am all done and relaxing that it begin to happen but it goes away after a bit of time. I take a potassium binder 3 times a week and maybit's from lower potassium???. I really just think it is from having lousey kidneys and i8 also get winded fairly quickly  on some days and others i seem fine. Get checked out but fear nothing...........

[Bruno]

The only point I could make here is that high potassium levels do not always accompany kidney disease...sometimes too low pot levels are the problem and MM2010's description of his solution to some of his difficulties indicates that this might be something he should look out for.
I eat 2 oranges and 2 bananas plus almonds and black strap molasses daily to keep my K levels up. Any more and I'd be swinging in the trees like a monkey.

[mm2010]

Well my visit with the Nephrologist went really good today.  Numbers show no change in my function, holding my own at around 40 eGFR.  She said she was not ready to say the medication was helping just yet, too early to tell, but the bloodwork and urine analysis did not show things getting worse.  As for all my strange issues, she basically said "that's pred for ya". As long as I can tolerate the medication, she believes we should just continue the course as planned, and watch closely.  She also told me to "get on with my life" and try not to obsess with all the stuff out there on the Internet.  I think because I walked in with a ton of questions, all kinds of partial info, she was wise to me.  She knows I am spending hours and hours trying to learn everything I can, and as a result, she is concerned that I might be going a bit overboard.  The best news I could have heard today was to get on with my life, and live.  Enjoy everything life has to offer.  All in all, I think I was encouraged by the numbers not continuing to decline, and that my side effects are expected and not to worry too much.  Now if I can just do something about the increase in appetite.  I'm going to be putting on the pounds if I'm not careful.  Blood work will continue every other week, and I will be meeting with the my Neph again in February. All in all, a good day at the Neph. 
Thank you all for the feedback, I truly value each and everyone one who replies to my questions, and the genuine concern for my well being.  This really is a unique family, and one I will be part of for a long time.
 

[MooseMom]

Your "obsession" is normal.  "Denial" would be normal, too.  "Get on with your life" is great advice, but I hope that doesn't mean you will stop visiting this website because you will have much to offer to the next newbie who is in a situation just like yours.  You will be able to tell that newbie what you've learned here, which is "educate yourself, make some friends, bask in the support IHD has to offer, and then live your life."

Now that you're a little more encouraged, your obsession can wind down to mere wariness.  Stay alert, stay informed, stay pro-active.  And congratulations on your great news!  Please do keep visiting us!

[AguynamedKim]

Great news, Mark!  I'm very happy to hear the labs came back like that.  I think you realize that educating yourself helps you appreciate even more the value of good labs and appreciate the privilege of getting on with your life.  I think there's a fine line between obsessing about our conditions and educating ourselves and it's up to each of us to find that line and live our lives to our fullest.  I have personally struggled with this balance as well but I am back to educating myself, taking the proactive steps that I can, and realizing that there's nothing else I can do beyond that.  I have peace in knowing that I feel I'll react quickly to whatever obstacles come my way and will do everything in my power to keep myself as healthy as possible.  I'm sure you'll be able to find a good balance for you as well and we hope to keep hearing from you.

[Deanne]

"Get on with your life" was great advice! My neph encourages that, too. She said her patients that have done the best are those who don't throw the towel, but instead keep up their activity levels and interests. She said she saw one of her "healthy" patients parasailing at the beach with a creatinine level of 8. I want to be like him, so I'm jacking up my exercise level and making sure I stay involved in multiple interests.

I hear ya about that prednisone appetite! What worked for me was to buy pounds and pounds of fresh vegetables and munch on them constantly. I exercised as much as I could, but that wasn't much because of the muscle wasting I experienced. If you're able to, get out and walk a lot. The exercise is good for you and it distracts you from being hungry. If you have a Wii, try some of the fitness games. I just got Walk it Out and love it.

Be aware of side effects like drinking / peeing a lot or vision difficulties. I was hit hard with steriod-induced diabetes. I'm not sure how common a side effect it is, but it's a bad one if it happens to you. I ended up in the hospital with a blood sugar level of over 1500. They were surprised I was still lucid / not in a coma. I'm not sure if the nephs check for this at every blood test or not.

[cariad]

So glad the news was good!

40GFR is really high, actually. It's great you are being proactive, but do speak up if the side effects wear you down too much. Perhaps it sounds weird for me to say so since I am not a nephrologist, but that much prednisone just strikes me as such overkill right now. I was overmedicated after transplant, and it did me no favors. It may have helped combat rejection, but if that could have been accomplished at a lower dose, perhaps I would not be the cynical old curmudgeon I am today.

It is amazing what specialists will tolerate when it is not happening to them. As my lovely former GP used to say "if a nephrologist can get an extra 24-hours out of a kidney, they'll want it". He was cautioning me to approach most suggestions and treatments with a generous measure of scepticism. As if he needed to remind me.... 

Very happy for you, Mark.

[mm2010]

Another quick update on my medication and treatment adjustments.  The prednisone dose has been reduced to 35 every other day.   The myfortic dose has been doubled from 180mg to 360mg twice daily.   The treatment plan will still include the pulse treatments every other month, I still have 2 more of these, one in Feb, another in April. 

I plan on keeping up with all the threads on this site. I also plan in sending welcome replies to new members.  Its a real privilege to be part the the IHD family, and what I have learned about dialysis and CKD in my short time here would not have happened if it wasn't for everyone here.