NS But just benn told I have to go on Cyclophoshamide-chemo!

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oki
Posts: 16
Joined: Thu Mar 29, 2007 7:54 pm

NS But just benn told I have to go on Cyclophoshamide-chemo!

Post by oki »

Hi All
Hello
In a really tricky situation -
If any one has any advice I would really apprieciate,
Was diagnosed with Nephrotic Syndrome 9 months ago and recently relapsed after reducing pred from 60mg - 5mg.
Went to my appointment with Neph Doctor and he has shocked the life out of me by telling me I need to now go on Cyclophosamide a Chemotherpy Drug. I may lose my hair be very sick and Im scared.
Dont really know what I should do, I have the drugs and was ment to start taking then on tuesday. Im going to visit St Heliers over the weeknd to get some advic from another doctor.
Is it worth going through for only a 50/50 chance! Isnt there anything else they could try first!

What do you think?

Ami
Hal
Posts: 617
Joined: Wed Apr 21, 2004 9:56 am
Location: Liverpool, UK

Post by Hal »

Hi,

Sorry to hear about your news. I've had this drug myself as a bid to start my disease. However, I had it in low doses and by IV.

It did make me feel "not right" for quite a while, I was always hot and cold at the same time, but never lost my hair luckily.

What disease is causing your nephrotic syndrome?

I presume you have had a biopsy to find out? Otherwise, I would be very wary of someone giving you this without them knowing.

I can't really help more - some hospitals go for the "aggressive" approach with these kind of drugs in the hope that they work, some think the side affects of using it are not worth it.

Unfortunately it is very difficult to treat the nephrotic diseases as a huge amount has not been able to be discovered about them.

I think getting a second opinion is definitely a good idea.

Hope all goes well for you,

Hal.
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oki
Posts: 16
Joined: Thu Mar 29, 2007 7:54 pm

Post by oki »

Many Thanks for your reply,

Im going to go back to hospital and discuss with doc a little further before I go ahead with this.

He didnt explain it very well, I have had a biospy when it first started but they couldnt see any damage to kidneys.
Maybe there is now after taking pred. They dont know what is causing NS just said its autoimmune disease.

Just seems so drastic - especailly when you here of other people who have taken perd for 19 years. I only relapse once.

Thanks again Ami
frostybee32
Posts: 85
Joined: Fri Jan 26, 2007 11:46 pm
Location: The West Riding of Yorkshire

Post by frostybee32 »

For m nephrotic syndrome i take mass doses of Furosemide (a water tablet) and ace inhibitor drugs as well as calcium channel blockers (both of which reduce protein loss from the kidney lessening symptoms of nephrotic syndrome) but yours in from an autoimmune disease and mine is from diabetic nephropathy so i would imagine although the symptoms of swelling,breathlessness and weight gain still occour they have to treat the causes first and front line for me is all the tablets i mentions and for you the underlying condition may need more aggressive measures but without knowing exactly what condition you have,its hard to even do a search for you for possible alternatives.
I would get that second opinion as being doubly sure is not bad thing...i got my prescription yesterday and noticed a tablet had been doubled in dose,i phoned the surgery and was told "one of the doctors changed it this morning" and upon asking why and if a letter had arrived from my renal clinic asking for them to do this as i was told last week by the renal team to leave everything alone,they said "i dont see any letters or reasons why they have done it" so looking up this tablet,if i took double this dose (im on the maximum now) as well as all the others i could possible be very sick!!! so always get another opinion as even if it turns out it is right,checking first could either save your life or just make you feel better in yourself and not unwell for no reason!!
"There are two kinds of people; those who are always well and those who are always sick. Most of the evils of the world come from the first sort and most of the achievement from the second"
rosa t
Posts: 365
Joined: Sat May 29, 2004 10:50 am

Post by rosa t »

:D Hi Ami

I was diagnosed with NS back in 2003 - the steroids didn't work so I had cyclosporin - a rather unhappy 6 month experience!

If you have questions then you must ask - my consultant gets worried if I don't ask questions!

Although I knew that they were taking steps to get me ready for dialysis when the next hospital appointment came up I hardly said a word - the comment from the consultant was "you're very quiet and not asking questions - why?"

Even though I;d asked many questions before hand and felt I needed to know what was in store, the growing reality scared me!

Fortunatley my gfr improved and now 2years on I'm stable areound 20% -so machines are a long way off.

Nothing is without risk - steroids aren't nice either. Don;t be afraid to ask and if you can't cope with the side effects tell them - I was also on MMF for a short while - they didnt make any difference and the side effects weren't nice!

There has been on cuase for my NS either - being diagnosed at 42! They just said it's auto immune and a child's illness!
Hope you get one ok.

love#

rosa :D
Yesterday is history, tomorrow is mystery, today is a gift, that's why they call it present
Tommy
Posts: 35
Joined: Tue Feb 28, 2006 4:19 pm
Location: Brocton

Post by Tommy »

When my daughter was diagnosed with Nephrotic syndrome a couple of years ago she was put on 80mg Prednisolone to start with, along with a whole cocktail of other drugs.
When nothing seemed to be happening we asked whether there was an alternative approach to which they said there was but they wanted to persevere with pred due to the side effects of the other chemo type drugs.
Eventually the fluid started to move and the pred was slowly reduced.
We were told at that point that there were three possible scenarios.
First was that after the pred was stopped everything would continue to be OK, second was that after the pred was stopped the NS may kick in again and the pred would be restarted and then slowly withdrawn again and that that could happen two or three times before the NS 'switched off'. The final scenario was that each time pred was removed the NS would start again and she would need a long term 'maintenance, dose of pred to keep NS at bay.
I'd certainly get a second opinion if they are talking about putting you on chemo type drugs after the first pred relapse. Obviously don't know enough about your specific circumstances but hope the above helps you with any questions you might need to ask.
Hope you are as lucky as my daughter, her NS 'switched off' and fingers crossed it will stay off. Good luck
Only you, can decide whether it is going to be a good day or a bad day.

www.justgiving.com/runningwithamy
oki
Posts: 16
Joined: Thu Mar 29, 2007 7:54 pm

Post by oki »

Many thanks for your replies,

Like you have all said - I am seeking a second opion now,

First question will be - why are you putting me on chemo drug after my first relaspe?? Is there something now, you are not telling me??
I still havent taken them and expecting a call Monday from St heliers Hospital.

Really hope eventually my NS will blow out, like some have said.


I think I know what they are trying do do though, the chemo drug will supress my immune system so the pred (still on 35mg)can do its job????
Ifs he tells me its the only alternative other than declining NS then Dialysis I will have to try even if he has told me its only 50/50 sucess.

Its a shame I dont feel very confident with My neph doc - can I change him?? He just doens't seem to tell me much - or he doens't know himself!

Has anyone ever thought or used Homophathy ?? I have seen a few websites about treating NS with zinc etc.

Thanks again for your words and time.

Ami xxxxxxxxx
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