levamisole

• By duker
• Posted March 29, 2008 at 10:04 am

Hi ness,

I have been blogging all morning and your info is so interesting. my daughter has steroid dependent mcns and she is on prednisone, prograf and cellcept . at what point did your doctor go for this new drug?

mine at Johns Hopkins in Baltimore MD are talking about a black box drug called rituximab - but we are scared to death

can you give me any more info. It warmed my heart to hear of your success - made me choke up with joy for you and hope for us. can you pass me the name of your neph on Australia? I could run it by my nephs here and maybe they would contact yours. my docs here are already in contact with docs in Germany and the UK about other possibilties but they have not mentioned this one - who knows? could be a possibility to divert a double nephrectomy on a kid whos creatine has always been a steady .3!!! thanks

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• By ness1
• Posted March 29, 2008 at 8:48 pm

hi there,
Alex was on pred for 4 years when he just kept relapsing and the thing to remember is that steroids were never ment to be used in the long term. If they start relapsing within a few weeks of coming off they just aren't working, that is what happened to alex so we got seen by a renal specialist who's name is Dr Crompton and he works here in perth western australia. He works at Glengarry Hospital in Duncraig.
Hope this info helps and your daughter starts to feels better soon.
Any other questions you have feel free to email me at vdowns@iprimus.com.au
Regards
Ness

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• By tr9736
• Posted March 29, 2008 at 9:42 pm

I just sent you an email with several questions of my own... This is such a fascinating story that I believe will give us all hope! I too would love to hear other stories on this drug. I can recall a post earlier and they had mentioned this drug, but can't recall details (I'm still learning all these drug names!) Looking forward to other's posts.
I'm so happy for you and your family! That is awsome! I'm emailing my neph all your info to see what she has to say about it and see if we can incorporate it to our son's tx.

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• By MariekeV
• Posted March 30, 2008 at 4:16 am

Hi Ness,
I am mother of a child with NS working as a volunteer for a new international Patient Oranization for Nephrotic Syndrome. There is a new Levamisoltrial starting in Holland, France and Italy to see what the medication can do. Is there a Nephrotic Syndrome Patient Oranganization in Australia, or can you found one and be one of our new members.
Marieke

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• By ness1
• Posted March 30, 2008 at 4:28 am

hi there. As far as i know there is no organization here is australia but there should be because infomation is so hard to find. I would do anything to help fight this heartbreaking disease if not to find a cure but to bring more understanding to others.
thanks
ness

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• By MariekeV
• Posted March 30, 2008 at 9:52 am

Hi Vanessa,

Perhaps you can be the founder ...with an Australian Kidney Foundation funding you??
It is never too late to begin!!!! Mail me if you want to get started!

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• By tr9736
• Posted March 31, 2008 at 12:50 pm

...I spoke with my neph, she says that Levamisole is not available in the U.S.! The next line of drugs she will put him on (when the time comes) is Cellcept...

..and I had such high hopes...

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• By mamagemini
• Posted April 1, 2008 at 1:41 am

I wonder if they have tried it on adults yet?

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• By ness1
• Posted April 1, 2008 at 2:25 am

hi there,
The research i did on the net implied that the study was primarily on children.
I went onto the U.S Medical Libary and found a lot of info there.
The drug was designed to treat colon cancer but was not very succsessful. THey then went on to trying it on other illnesses and found a high success rate on the kidney.

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• By GinnyO
• Posted April 2, 2008 at 7:43 pm

I can't believe this discussion. I was going to start a thread today about Levamisole. I ran across it, while researching MCD. Now I too am heartbroken to find out it's not available in the U.S. I just assumed it would work on adults, since it works on children. My next step is cyclosporine, and I'm very hesitant about taking the drug.

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• By tr9736
• Posted April 3, 2008 at 11:23 am

Ginny, why are you starting cyclosporine? Is that just what the neph said is 2nd line or what is a joint decision -- i.e. you had several options and went with that..? I'm wondering how the docs come up with the 2nd line drug. My son's neph will go with CellCept (and didnt really give me a choice..) when the time comes... Just curious who makes the determination, what are pros/cons of each. I have read about several difference '2nd line' drugs... so confusing...

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• By GinnyO
• Posted April 5, 2008 at 11:13 pm

Hi. I'll find out the results of all my lab work in a couple of weeks, but my protein levels have been inching up from their lowest last August of 1 gram to nearly 4 grams last month. So now the neph wants to start me on cyclosporine, to get my protein levels down because he thinks the steroids didn't work. My feeling is that, as of today, I don't have edema and I feel fine, so I don't want a strong drug like that. In fact, I'm going to suggest more steroids, because I do fine on steroids, and I really don't mind them. I have a round, chubby face naturally, and I can usually maintain my weight to a comfortable size. I just feel that the steroids are the lesser of the two evils for me. Yes, I am very involved in my own health, and do have a good relationship with my neph. He knew I was going home to research cyclosporine even before I told him. I've dealt with health issues my whole life. The doctors had me on half a dozen pills and 3 different inhalers, not to mention steroids, for six years with my asthma. I finally just said, "enough" and went looking for a doctor to get me off the meds. I found a miracle worker who eventually got me off everything, and now I rely on only one inhaler when I have trouble breathing. I've been fine for 13 years. I just don't want to get in that same situation with my kidneys. Just my personality to question everything.

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• By Ourlittleman
• Posted June 4, 2008 at 1:00 pm

Hi, my son Ashley who is 8 now suffers from NS and we tried Levamisole and unfortunately Ashley had a terrible allergic reaction from it. He was then put on cyclosporin which doesnt seem to be working as he has relapsed three times since starting on it a few months ago. We tried cyclophosphomide earlier on and that also did not work... Pregnisolone is still working but it's been 3 years and we desperately need to find him another option. Please contact me if you need to talk. We are in Sydney. Juliet x

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• By ChiCubs7
• Posted June 5, 2008 at 6:37 am

Cyclosporine worked very well on me. I took it for 1.5 years after the steroids stopped working. I was in complete remission while on it; the edema went away and I felt normal again. During that time, I stopped taking the diuretics, ACE inhibitors, and ARBs; so all I was taking was cyclosporine and Lipitor. Now, I'm still in complete remission, only now without the cyclosporine. Of course, your mileage may vary, but I was very glad that it worked so well on me.

Here's a study about Levamisole on children with NS:
http://www.ncbi.nlm.nih.gov/pubmed/1675705

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