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information please

Postby Shelly » Sat May 15, 2004 11:01 pm

My son Cody who just turned 13 has been having some kidney problems. He first had signs of being sick a week before Thanksgiving. They did a kidney biopsy the day after Christmas, with findings of post infectious GN.
They told us to be patient it will heal itself. Well in January with no improvement and he started to have extremely high BP. They started him on Prednsone and Procardia. (please excuse the spelling). To this day he has had no improvement. He is now on Cellcept 1500mg a day, Cozaar 25mg twice a day, Atenolol 25 mg twice a day, Lasix 25mg, twice a day, Prednsone 50mg every other day. He hasn't been going to school since Feb. He is just to tired and with the high dose of Cellcept he catches other viruses that keep him down on the couch.

They keep telling me his complement levels keep getting lower. When I ask what that means I never understand what they are talking about and I haven't been able to find much information on the internet. I guess it is his C3 and C4 levels?

He is having his second biposy on June 4. The Drs. feel this one will show a different diagnosis. They are talking about MPGN Type III. All I can find on that is it is rare. Not much info on what we may be dealing with.

Any information would be greatly appreciated. It took me 6 months to find this site. I am hopeful I may finally get some answeres from people who live with this as we do.

THANK YOU
Shelly
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Get a second opinion.. fast

Postby Art from Ontario » Sun May 16, 2004 2:11 am

Dear Shelly

The drugs Cody is taking are very toxic and should not be given

without knowing what specific kidney desease or condition he has.

CellCept & prednisone are both imune-supressing drugs normally

used for post transplant situations. Extended use of these are

not recommended, especially at those doses, as they will create

symptoms of their own. This will only further impare a correct

diagosis. Also, those 2 drugs can themselves CAUSE kidney

damage.

See a good nephrologist for a 2nd opinion ...now.



See the following website for complete information on the drugs..


http://www.nlm.nih.gov/medlineplus/druginformation.html

....art
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DO NOT BE SCARED OFF

Postby Hal » Sun May 16, 2004 11:15 am

ART - I found your post very scare mongering indeed.

Shelly - PLEASE DO NOT BE ALARMED by Art's post. Obviously your son has been given a diagnosis since they did a biopsy on him. It is USUAL for types of glomurelonephritis to be treated with such immuno suppressive drugs, they are not just used for transplantation (and even not just for kidney problems).

I am sure they have only put him on these strong immuno suppressive drugs since the disease did not go away by itself. The drugs have their side effects (which yes can include kidney damage), but they are used to try and "cure" a disease which ultimately will lead to worse things if it cannot be controlled in the long term. Therefore, the side effects

Unfortunately, there is very little evidence to show which drugs are best at treating this condition - some doctors argue different drugs, some argue none work at all - and so its a case of different drugs to be tried at different hospitals by different doctors for different patients.

Hopefully, the 2nd biopsy gives an indication of type of glomurelonephritis - I myself have type 1. As you say type 3 is very rare, I did not know it existing until another patient from this board told me they had it.

I hope it all goes well for you and your son, any questions please give me a shout.

Best wishes,

Hal.
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Postby Shelly » Sun May 16, 2004 2:24 pm

Thank you Art & Hal for your quick response.

We did take Cody for a second opinion last week. That Dr. is the one that suggested MPGN. He agreed with all the med. It is so hard when you have no control on any of this.
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Postby Sueleic » Sun May 16, 2004 3:20 pm

Hi Shelly
I am so sorry to hear about your son’s illness and by what sounds a very worrying time for you
I myself don’t have kidney disease but I was career to my husband for many years
I thought I’d reply to your post just to tell you that you have come across a wonderful group of people who will share there experience, and offer you advice at this very scary time for your family
Over the period of about 3 years I have met some wonderful people who are going through the same thing
Please keep us posted
Take care
Sue
In the UK
Xx
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Postby Anne in Va » Sun May 16, 2004 9:55 pm

Hi Shelly,

Hal is exactly right. These drugs are used in some kidney diseases and in the doses you mention. I was treated twice with prednisone for my situation. It worked for me and stopped my disease from progressing the first time for eighteen years and the second for seven years. I have had two biopsies and both were inconclusive. They both seemed to be suggestive of MPGN either as the primary disease or secondary to Lupus. My doctor told me when I was treated the first time, that he did not know if it would work for me but it did work for some and was worth the risk. I think that is where they still stand today. Some drugs work for some people and not for others. Cellcept has been shown to have some success in both Lupus and some forms of MPGN. There have been some advances since I was first treated with additional drugs, such as cellcept, to use along with Prednisone but there is still so much unknown.

I took 60mg prednisone for three months and then was tapered off it slowly. I seem to remember it took an additional six months to taper. Yes, I did have side effects but fortunately they disappeared when, the dose was tapered and I came off the drug.

I know this is a very distressing and frustrating time for you. Unfortunately it takes time to find out if one drug or a combination of drugs will work. I am thinking about you and will keep both you and your son in my prayers.

Best Wishes, Anne
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To Shelly

Postby tina » Wed Jun 09, 2004 1:54 am

I just found your post. My son also has MPGN. Two separate universities looked at the biopsy and both said MPGN -- one said type 1, the other said type 3. My nephrologist told us the treatment would be the same -- and he studied at the Univ of Cincinnatti, where the most research seems to have been done (what little there is) He's beenn on prednisone, cell cept and lisinopril for the past 18 months (as well as a calcium supplement and mulit vitamin to replace vitamins lost due to the medication)

We had been seeing a gradual improvement over the first year or so, but have seen increases in protein recently. We are waiting for results from the latest urinalysis. We may be looking at monthly IV pulses of higher levels of steriods.

You should find out how much scarring there was on biopsy -- that is apparently a good indicator of long term prognosis -- although nothing is for sure. I'm preparing myself for a kidney transplant sometime in his late teens to late twenties. My husband and I sold our house and we're building a less expensive house so we'll have more money to save for long term investing since he may not be able to get life insurance as an adult. We want to help him provide for his own family someday.

It's a difficult disease for us because our son does not feel any symptoms himself since we caught it so early -- but we know how important the treatment is anyway.

Finding info over the internet is about impossible. Let me know if you hear if any new research being done. All I know is Cincinnatti and Univ or Iowa.

Good luck.

You can reach me at tinaboyle1024@yahoo.com anytime...

Tina
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MPGN III

Postby kim » Sat Jun 12, 2004 2:26 pm

Hi Shelly,
I am sorry to hear of your new with your son. I have MPGN III. I have had it for about 8 years now and am currently being treated with Prednisone, Enalapril and Sodium Bicarbonate(for low co2 levels). I have been on Prednisone since August of last year and it seems to be keeping my Creatnine level stable. In May of last year my creatnine went up for the first time since diagnosed. I started at 70 mg. Prednisone and have been tapered down to 10 mg. currently. I feel very grateful that I have had soo many years to lead a pretty normal life while having this. I hope the same holds true for your son. Please let me know if you have any specific questions and I would be very happy to help you in any way I know possible. I am at the beginning stages of the kidney failure, so I have traveled the road many people here have, but I am here if you ever have any questions, if I can't answer them, there are plenty of people here that have sooo much knowledge, and this is a wonderful place to be understood and talk openly about anything!!!! They have been wonderful support to me through many obsticles of life in the past year. Take care of yourself and your precious son.
Kim
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Sounds like we are in the same boat.

Postby Leetta Beachum » Tue Jun 22, 2004 6:24 pm

I too have a son (only he is 15) who has just recently been diagnosed with MPGN type I. We found out two months ago. Our doctor started him on 60 mg. prednisone every day for 6 weeks with very little change. She just recently added the Cellcept (2000 mg. per day). She is tapering him off the prednisone to 30 mg. every other day. He takes three differendt types of blood pressure medicines and is taking 1500 mg. calcium per day along with a multi-vitamin. He also takes a diaretic. His blood pressure was getting out of control and he was showing signs of depression. He gained 35 pounds in 6 weeks and the acne was horrible. She made a decision to taper the prednisone. He is not showing any sign of remission, I guess I need to be more patient. I would love to chat with you and share our experiences. We sent our biopsies to Cincinatti for a second opinion and it came back the same - MPGN I.

Does your son have any muscle spasms? I am very curious about this because our son has very bad spasms in his toes, fingers, back and calves. If anyone else has anything to add on this subject, please feel free, this is something that is really bothering him. His fingers and toes will draw up like he is crippled and it is very painful. It lasts about one minute and goes away.

Please keep in touch and let me know how your son is progressing.

Leetta
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