Bloodwell or Restore Imune II meds?

Right now nothing seems to be working for me. Have been on steriods for the past 5 months and can't seem to get off. As I taper, my plates drop, the side effects are just horrible, muscle weakness, knees hurt, acne, weight gain, headaches...urggh. My count today is 15K on 10mg. My highest count during these 5 months was when I was taking antibiotics for H-pylori at the same time as the steriods...my counts went up to 211 but have since dropped as I tapper.

I have had IVIG, just finished rituxan 3 weeks ago but platelets haven't really budged much, they were at 31K after the last Rituxan dose 3 weeks ago. My Dr wants to try WINHRO and then splenectomy next. I am just in tears, I wish I could just get my life back. The only thing that keeps me sane this days is my faith in God. Should I get a second opinion?


Has anyone tried these herbs by Dr. Ba Hoang, M.D. , PhD? Called Bloodwell and Restore Immune?
ceocfocorporatebriefs.com/WFN-ITP-Testimonials.htm

I am looking for natural treatments now because the last 5 months have been so hard for me, trying to understand what ITP is and basically being an experiement for the Dr's as they try different things

MDgal, I know exactly how you feel. I have been on prednisone for 3 1/2 months. We've tried tapering too quickly twice before and both times my counts fell fast, so my Dr. bumped me back up to the high dose each time. This time I am tapering slowly (5 mg./week) to see if the counts will stick. So far so good. I am on 35 mg. and 200k count. And yes, the side effects for me are really bad too. I haven't tried any other treatments yet, but my Dr. feels like Splenectomy is my best bet. I am seeing another Dr. just to get his opinion in case i have to make a decision if the pred doesn't hold the counts after the taper. I want to see what treatments he would try next. My regular hemo is open to other treatments too, but I think he is kind of settled on the spleen. I was going to do the IVIG to buy some time but my hemo says that it will not likely keep platelets high, just used as a bandaid. Does that sound right?

My primary Dr. says sometimes ITP will burn itself out. I am hoping that happens! I am also trying a macrobiotic diet while on the pred It has made me feel a little better and it has worked for some.

Thanks. What is a macrobiotic diet?

You are right, IVIG is just a band aid. Same as the winhro thing they want to try on me. Winhro tricks your immune system to create antibodies against your red blood cells instead of the platelets. It can cause anaemia because the spleen will destroy red blood cells and hopefully when it's done it will forget it was attacking the platelets.

You have great counts and if I was you I wouldn't take the spleen out yet. The spleen protects us from infection so without a spleen we will be at risk for other things. At this point, I am not giving up. I will try herbal supplements, diet changes but no splenectomy. It is by accident I even found out I had ITP, so somehow my body had been regulating itself all these years through my yearly physicals. All my other counts are great except the platelets

Nobody on the old board reported ever having any success with Bloodwell or Restore Immune although some spent quite a lot of money on them. You might want to ask again though on the Natural Treatments section on the forum.

3 weeks? Calm down doctor!!! It can take Rituxan well over a month to kick in! I think you should hold the horses on the splenectomy. Once, that is gone, it's gone! I've never tried natural remedies, but some people swear they work. I think it is worth a try. What would it hurt? Also...I'm very interested in Jtx's comment of ITP burning itself out. What does that mean...that it would just stop? Wouldn't that just be AMAZING! I hope your hema knows something mine doesn't! I liked reading that! Also, can someone explain the macrobiotic diet? I'm intrigued. But...I love me some food, so.............

Natalie

There is a little bit posted about the Macrobiotic diet here: www.pdsa.org/treatments/complementary/food-as-a-cure.html

It is a pretty restrictive diet, based on grains and vegetables. It is mostly vegan with no processed foods, sugar, etc. It's tough, but I figure I am already suffering through the pred, so why not. And besides, my taste buds are not really functioning these days, so food doesn't taste the same anyway.

And my hemo did not say the thing about ITP burning itself out, it was my general primary doc. I think I read someone mentioning that on here as well though.

I used Colustrum with good effect. There is something in it to stimulate platelets. I would be curious to know if it helps anyone else.

I try to stick to the mediterranian diet. It's hard because I like carbs a lot. I eat a lot of brown rice. But I do good with veggies.

MDgal wrote:

Thanks. What is a macrobiotic diet?

You are right, IVIG is just a band aid. Same as the winhro thing they want to try on me. Winhro tricks your immune system to create antibodies against your red blood cells instead of the platelets. It can cause anaemia because the spleen will destroy red blood cells and hopefully when it's done it will forget it was attacking the platelets.

My friend was on a macrobiotic diet for a few years, nearly killed her.

Since ITP in adults is usually chronic any treatment is a bandaid. There is a wonderful woman here who has to use IVIg, it is the only thing that will put her platelets at a decent level as nothing else will help her count. Prednisone put me in my first "remission". WinRho put me in my 2nd "remission", haven't had to treat since having 1 treatment in 2002, not a normal count but a good count.

Sorenna1 wrote:

I used Colustrum with good effect.There is something in it to stimulate platelets

You used colustrum and it increased your platelet count? Are you using it now - if not why not? It is supposed to stimulate platelets how?

Melinda wrote:

Sorenna1 wrote:

I used Colustrum with good effect.There is something in it to stimulate platelets

You used colustrum and it increased your platelet count? Are you using it now - if not why not? It is supposed to stimulate platelets how?

I realy need to know that

You could phrase it "ITP burns itself out" but what that means is that the body stops making antibodies against platelets. It can happen as easily and as quickly as when the body begins making antibodies against platelets. Antibodies come and go, sometimes there are more, sometimes there are less.