Danazol anyone??

[Jim]

My doc has just started me on 800mg/day of Danazol in an attempt to raise my Platelet count from it’s present level of 28000. I did a search on “danazol” finding some messages dating back to February 2005 but none since. I was wondering if anyone has been treated with it in the past year??

I’ve been on the pineapple & sesame seed diet for 6 weeks now and have seen no change in my platelet count.

JW

[shirlsgirl]

Hi Jim,

There is a discussion group on the Platelet Disorder website. There are people on that site that have used or are using Danazol…

http://www.pdsa.org

Best of luck,

Jody

[VIOLA]

Hi Jim, my Dad has MDS RA with 5q and he tried Danazol for 3 or 4 month , but it did’t work for Him. Best wishes to You!

[Jim]

I’m happy to report today that I’ve become a “thirtysomething” regarding my Platelets-LOL. The count has been hovering in the 20’s since last fall. I’ve been on Danazol for a month as of today. This morning’s count was 34. The doc feels encouraged and wants me to continue. Prior to the Danazol, I went through a three week round of Prednisone that was great for everything except my sleep and platelet count:)
JW

[CarolineG]

Jim,

I am happy to be able to share in your good news. Keep doing what you are doing. It is working. Keep us posted.

Best Wishes,
Caroline

[Aleksandra Poland]

Hallo, Jim,
could you maybe explain me the thing with pineapple and sesame diet? What are the rules, how should that help?

And yes, since two years my Mom is on Danazol, changing with Encorton / or getting both of them. Danazol seems to keep her red blood cells relatively balanced, and it has less negative symptoms than the other drug. At the same time, it makes Mom gain the weight, she also has problems with sudden “heat waves” – like she would be still at menopause… For the platelets it does not really work for her.

Best wishes, Aleksandra

[Jerry]

Jim …

My Cleveland Clinic docs put me on 400mg of Danazol around the first of Sept. Then, on Sept 9th I had total renal failure, not related to the Danazol and my liver counts became abnormal. They stopped the Danazol to be safe because one possible side effect is liver trouble but my liver counts went back to normal. They put me back on the Danazol at 200mg a day and my liver is fine. They are thinking of raising it to 300mg if today’s blood test stays normal. The only other side effect of Danazol can be quite pleasant. just be sure to check your liver enzymes.

Jerry

[Jim]

I’m sorry to tell you all but the Danazol stopped it’s benefits sometime around the end of August or early September. The beginning of August my platelets peaked around 130. The doc and I thought we found the magic pill to the problem. By the next blood test on 9/15/2006, My platelet count was back down to 21 . A BMB showed the MDS was getting worse. As of now, I have finished round 1 of Dacogen, supossed to start round 2 next Monday. I’ve received several platelet transfusions and am struggling to hold at 10. The count has been as low as 3.

I also have been fighting outbreaks of Hives since August. Doc says take Benedryl and doesn’t seem concerned but I’m going to start “pushing” for better answers.

There are others on the board that know the Pineapple-sesame seed diet better than I do, Aelksandra. I tried it last year but didn’t see any improvements.

Jerry, my liver was checked over the treatment period. Had no problem. What side effect did you have that was “pleasant”??

JW

[patti]

Aleksandra,

Some folks have had success increasing their platelets or just maintaining what they have by eating or juicing 1/2 to 1 whole fresh pineapple a day and taking 1 tablespoon of black sesame seeds. The sesame seeds have to be ground up otherwise they’d just go through the system. No one really understands why this works for some people. The presumption is the bromelain in the pineapple is the reason it works and something in the black sesame acts as a catalyst for the bromelain. This treatment worked for my MIL for a year but then stopped so there is no guarantee that it will work for everyone. Also, if someone has allergies to these foods then taking them wouldn’t be good either.

Hope this helps.

Patti

[chuckk333]

Patti, & Others–
At Wild Oats natural food store they had sesami seed, but none labeled black sesame seeds. Is this important?

BTW I have been juicing pineapple (1/4 to 1/2) per day and my platelet count went from around 70k to 84k at my last CBC.

[TEMBO]

Chuck;

Great News!

God Bless,
Karen

[patti]

Chuck,

I can’t honestly tell you. When I first read about this remedy (and it’s been so long I don’t even remember where I read it from) it said they had to be black sesame seeds. I’ll bet wild oats has them but they are in the Asian food section. That is where mom had to get hers. I think the actual platelet increase is from the bromelain in the pineapple. The sesame seeds are just supposed to be a catalyst so it’s possible the bromelain will give you the benefit w/o the sesame seeds.

Fantastic that your numbers went up! The pineapple and seeds worked well for mom for a good long time. Your other juicing is definately going to help this too.

Happy juicing!

Patti

[Aleksandra Poland]

Patti, Jim, your’re great, thanks a lot, also for your patience!
I continue reading the archives of the forum, but it takes ages – and so for a while more I will probably ask silly questions that somebody had already answered long ago.
I even managed to find organic balck sesame in an online shop in Poland. Another issue: how to get fresh pineapple in our climate, so far from any source…
Anyway, the bad news is, to stop the pain related to the stone in her urinary tracts, Mom is not allowed raw fruits/vegetables anymore. Next week she should visit the hospital in Cracow for the consultations on this stone, hopefully there’ll be a way to get rid of them with the laser. I can not imagine her having a regular operation now, when she’s still fighting the bad reaction to the last transfusion. Why is all the trouble coming at the same time..?

[patti]

Aleksandra,

If you have a natural doctor available to you in Poland, ask them about your mom drinking water with lemon juice in it. It is good for breaking up stones of the kidney and gallbladder and wonder if it would work for the bladder stones. I have several friends who got kidney stones and use the lemon juice and water daily to keep them from coming back. So far, so good. My mom refuses to do it and continues to get stones. So you might ask a naturapath.

Patti

[Aleksandra Poland]

Hi, Patti,
It’s a great hint, I phoned with Mom a while ago and ask her to consult the lemon water with the doctor on Monday in Cracow. Especially since the stone is supposed to be in her gallbladder – what you mentioned – and in our smalltown hospital she got only one diagnosis: remove it all! The whole thing – and this would mean the refined diet forever, no chance for any organic/macrobiotic food…
Mom actually sees a kind of naturopath (?), who prescribes her herbs to support the liver/kidneys etc. and does some weird “energy treatments” to her, but her regular hematologist has no idea about it – Mom is afraid she would have to stop it. Doctors in Poland are pretty traditional in approach. She also tried acupuncture and massages at the beginning, but gave up after few months – she was depressed, meeting all the handicaped children and other sick patients at the doctor’s praxis. You’re so lucky to have a good information source on natural treatments! I bet it was complicated at the beginning to find the MD who accepts the alternative methods?

All the best to You and your Mother in Law, thanks again, Aleksandra

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