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New to NephSpace

Mrs_C
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Hi!

I am new to this website (obviously lol), I was diagnosed as having kidney problems in late May early June and was eventually diagnosed as having FSGS towards the end of June.

I've been on Prednisone for a majority of that time but haven't been responding as well as well as the Dr would like so this week he put me on CellCept.

I must say the side effects (as I am sure all of you know) have been less then fun, not only for me but the people around me as well...

I'm never sure what to write when I first post on a discussion board so I apologise in advance if I sound whiny. I look forward to getting to know people here and providing as much support as I can.

Cheers!

Explore topics in this discussion:

Autoimmune diseases CellCept Cyclosporine Dialysis Lasix Hypertension Edema Prednisone Mental health

12 replies

MooseMom

Hiya!

No, you don't sound whiney, but even if you did, no one hear would judge you. We all have our whiney days! This is a safe, secure place in which to whine!

You will find plenty of support on this site because we are all in this together.

I have one piece of advice right off the bat. Be patient with your doc and yourself; it takes time to find just the right meds and dosages for your unique needs, and those meds and dosages can change back and forth. I started treatment for FSGS and its effects five years ago, and my doc tweaks things as needed. I keep a copy of all of my labs and I chart the most important numbers; I take this info with me to each appt because it is quicker that watching my doc flip through all the paper in my file. Be your own best advocate. Be educated but not to the point that you scare yourself. And always come here whenever you need some support from those of us who have been there!

Boussaar

Mrs. C, just read your post and I was on prednisone and Cellcept. After 9 months, I was weaned off Cellcept and dosages of pred were reduced over same period of time. I am on a maintenance dose of pred of 5 mg every other day. The side effects are unpleasant but my kidneys had shut down and I was scheduled for dialysis. The meds with all their side effects did the job for me and after two years, I am still not on dialysis. Hang in there and I think your situation will improve. The first few months of treatment are hard but it is something we just have to go through. Hope you are better soon.

Fredia

I am on Cellcept for Chronic Idiopathic Angio Edema. Have tried all the antihistamines, been to Internal Med, Allergist, Dermatology, Cleveland Clinic and Ohio State University. No answers from any of them. I have been on Cellcept for about a month and half, not I have pitting edema in legs and feet, and today started with tremors. I plan to come off this med. as soon as I can consult with my doctor. Have been on prednisone and no results from that. I do have Autoimmune diseases so this follows a pattern. Anyone with suggestions?

Mrs_C

First of all I would like to say a big thankyou for the welcome and advice from everyone!

While I have a huge amount of support (for which I am extremely grateful) of my husband, family and friends, having contact with people who are experiencing the same thing helps too.

I'm lucky to have a great specialist who also has a sense of humour which helps too.

oh btw i'm in Australia.

Thanks again everyone!!

khug

Hang in there. I was diagnosed with FSGS, primary, 3 years ago. I did 6 months of Prednisone and my numbers did not come down for the first 5 months. Then in the 6th month they dropped to almost normal levels. The side effects of the prednisone were not pleasant, but I would do it all over again. I have now been in partial remission for almost 2 years. Keeping my fingers crossed.

MooseMom

Oh, cool!! Australia! That's one place I've always wanted to visit.

Everyone has a different story; different docs have different strategies, I suppose. My nephrologist put me on cyclosporine along with other meds to combat high blood lipids and hypertension, along with meds against gout and cardiac inflammation (preventatives). The first several months, I'd feel this wave of nausea around midday, but as time went on, that dissipated. I've never been on steroids, and I am grateful for that after reading stories about the side effects. I haven't experienced any side effects from the cyclosporine, and I've been taking it for 5 years.

I live a normal life besides having to take a lot of pills and watching my intake of fruits and veggies. I'm at stage 4, which is pretty tragic, but I'm actually doing well. This disease has taken more of a psychological toll than a physical toll, I admit. I have to remind myself that despite everything, I am very lucky.

I hope CellCept works for you. Be sure to report back to us to let us know how you are doing. I know that cyclosporine takes a while to show results; CellCept may be the same, so work with your doctor to craft a treatment plan that is most effective for you.

Mrs_C

Well, I saw the doc last thursday and its too early to say whether or not the cellcept is working as of yet so I need to be patient (not one of my strong points).

The good thing was that he reduced the prednisone and the fruisemide (please scuse the spelling) so I'm looking at that as a positive.

MooseMom, I know what you mean about the phsychological toll...I've had to be very concious about creating a mental health self care plan if that even makes sense lol.

Oh one last thing...has anyone here had any problems with hands and feet cramping? if so any suggestions on how to handle it...

cherigit

Hi Mrs C,

Welcome. I know I am a bit late with this but have not been able to be on for a bit.

I do hope you continue to do well. Remember, this is a place where what you feel is what it is and we all have our whiny days or down days so dont worry about it. You deserve to feel whatever you feel.

Like some of the others have said, it does take a psychological toll and we all have to find the best way to deal with this major life change. I try to find the positive as well but somedays it can be a challenge. I found this silly quote with a picture that says "Smile and laugh more often. It keeps the energy vampires away." Strangely enough, this helps me refocus and is in my office where I can look at it whenever I need the boost. That is my mental health plan. It is very good that you are aware of needing one.

No cramping issues here, but then maybe it is because my steroids are high dose but only every other day.

Hope things continue to go well for you. Perhaps someday we will get to meet, if I get lucky enough to get to Austrailia, one of the things on my list.

Cheri

MooseMom

I have sporadic problems with my feet cramping. I did a bit of research and discovered that cyclosporine leaches magnesium out of your system, and lack of magnesium can cause cramping. I asked my doc about this, and he OKed me taking magnesium supplements as needed. It seems to really help. Perhaps you could ask your doc about this?

storaloppan

I also have sporadic problems with foot cramps. It happens when I'm driving and when I'm wearing flat shoes like flip-flops for long periods of time. I'm only on prednisone, so can only attribute it to this. I experienced the same thing the last time too, but haven't found anything to combat it (except heels :)

AmosB

Welcome..you will enjoy the support you receive from this site!
A

klocka

Mrs. C
welcome and glad you found this place to talk with others like yourself. I have been on 80mg of Prednisone everyday for 6 months at first then dropped to 20mg / every other day. When i was on the high doses they started to work and i was taking lasix which zapped more fluid out of me then it needed to be. I cramped so bad it was in my jaws. It was terrible but got through ok. I am taking 400mg of Magnessium a day and that helps the cramps in feet/legs.
keep chin up and you will walk through all this a little less frightened.
Andrea

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