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Alternative Treatments Complementary and alternative medicine; natural and holistic approaches

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  #1  
Old Wed Aug 1, 2012, 07:51 PM
Hayitsmenadine Hayitsmenadine is offline
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Location: Long beach, ca
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Platelet increase remedies?

Hello everyone,

I have recently stopped taking cyclosporine and my platelets have dropped from 115 to 50. My Dr told me he would like me to start back on cyclosporine but after being on it for 14 months I would rather not. However, I also do not want bruises all over my body again. Surprisingly my hemoglobin is at 9.6, which is the highest it has been, but I also have PNH so am doing Soliris every 12 days.

I was researching alternative methods like shark liver oil and papaya leaf tea and was wondering if anyone has tried it and what your experience was with it? Or if there any other methods I can do to improve my platelets?

Thanks, Nadine
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  #2  
Old Fri Apr 19, 2013, 07:38 AM
glitterandlace glitterandlace is offline
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People live with platelets levels of 50 for years and live normal lives. 50 is not that low at all..... Please do not get transfusions with your platelets that high. Try to supplement with vit D3 to stabilize your platelets and maybe they won't drop any more,, vit D3 made my platelets rise after about 4 months of taking 4,000 mg a day. I also do raw food diet, juicing, and occasional organic meat. If I were you I would just clean up my diet and detox through coffee enemas & juicing. I am going to try my first coffee enema soon just ordered the stuff online. Avoid caffeine, alcohol, aspirin, carbonated drinks, vinegar, fermented foods, and any other blood thinners.

One more thing,, the people with AA who have juiced and ate a clean diet have noticed that no matter how low their platelets get they have little to no bruising,,, even the few times my platelets reached 8K last year I had no bruises on my entire body. NONE. no mouth sores or gum bleeding either. sometimes the red spots on my chest or arms,, but they clear up fast.
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  #3  
Old Sat Apr 20, 2013, 08:02 PM
gramous gramous is offline
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hello,

we've tested some alternative therapy for increased the red blood cells but we've seen that increased also platelets (unfortunatly my boyfriend's platelets are very high (1700000))..That can perhops help you... curcuma + blackpeper (1g curcuma+0,5g black peper/day), fresh royal jelly (not lyophilised)(0,5 g /day), spiruline/chlorella (10 caps per day but not used if you're taking chemotherapy).
I hope that can help you.
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boyfriend with RARS-T dx 11/02//dx : hb 11,5; plt 870000, wh : 6500//Before fasting cure (13/04): hb: 8,9; plt 2200000; white:6000//After fasting cure (14/09): hb 12,5; platelets 400000, wh 3000.//Now (15/08) : hb : 11,plt : 650000, wh 3000// hydrea 1c/day and cardioaspirin, 1c/day,age: 56 y.
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  #4  
Old Sun Apr 21, 2013, 04:59 PM
4bcsboys 4bcsboys is offline
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long-term cyclosporing

Nadine,
It's not really the direction of your question, but I was on cyclosporine for five years. The doses were minimal (modified cyclosporine 200 mg a day) so it really wasn't enough to cause any side effects, except accellerate some facial hair growth. OK, so cosmetic, dealt with it. I'm not saying this is your answer for YOU, but what your doctor is recommending is not unrealistic or untried. You two need to evaluate your side effects to see if a balance exists.

Best wishes!
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Wife and mother of three young boys, diagnosed at age 39 with AA 2007; treated with ATG and cyclosporine; progressed to MDS end of 2012; MUD on June 26, 2013.
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  #5  
Old Mon Jun 3, 2013, 06:23 AM
Ved Ved is offline
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Platelets increase with Papaya leaf

Hi,
My Fatherin law is aged 77 years and an MDS patient. Recently his platelet counts dropped from 1,50,000 to 35,000. He was given RDP- 5 no's but platelets did not increase. After giving SDP (Single Donor Platelets), platelets increased to 85,000. But one week back again it dropped to 33000 in a matter of 10 days from 85000. On some doctors advice we started giving Papaya leaf juice (after washing the papaya leaf thoroughly and grinding the leaf, extracting juice from the same) 2 spoons in the morning and 2 spoons in the evening. We tested the platelets count after a week and found that the platelets have increased to 100000. We are quite happy about this and wanted to share with you all as it avoids unnecessary transfusion and saves money.
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  #6  
Old Mon Jun 3, 2013, 07:51 AM
Marlene Marlene is offline
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Thanks for sharing the information on the papaya leaf. Glad you found something to help.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #7  
Old Tue Jun 4, 2013, 06:17 AM
Ved Ved is offline
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Hi Marlene,
I am curious to see whether it is working for you also. Request you to share the platelets count after 1week of taking papaya leaf juice.
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  #8  
Old Tue Jun 4, 2013, 08:00 AM
Marlene Marlene is offline
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Hi Ved,

John only gets his blood checked once or twice a year now so we don't have a good way to assess the effectiveness of anything on his platelets. He's been in a partial-stable remission for the past 5 years and is 11 years out from treatment. His platelets are stable in the 95-100K range.

In the past, we never found anything specific that would raise any of his counts. We never tried papaya leaf extract though.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #9  
Old Fri Jun 7, 2013, 09:19 AM
Ved Ved is offline
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Hi Marlene,
It is good that he has stable platelet counts. But I feel there is nothing wrong in giving the papaya leaf juice regularly, which will definitely boost the platelet count to the required range.

Regards
Ved
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  #10  
Old Fri Aug 23, 2013, 12:36 AM
TonyBegg TonyBegg is offline
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Papaya Leaf Extract

Karin who has had PNH for 23 years urgently required her first blood transfusion (apart from one after a pregnancy 20 years ago which elevated complement levels and decimated her blood) on July 5th this year. She also needed platelet transfusions (down to 13000) and the platelets just plummeted within days so it was as if she was not producing any of her own (neutrophils 0.75 x 10^9 per Liter so probably also moderate AA). On August 9th she started taking Papaya Leaf Extract. Since she has had two CBCs 1 week apart at the hematologist and the platelets were stable at 17000. The hematologist was surprised and asked whether she was taking the Papaya Leaf extract Karin had mentioned to her on a previous visit before the extract arrived. So she has saved herself one platelet transfusion so far. Will keep you posted. She is also taking Rosmarinic Acid capsules, but at a sub-therapeutic dose. This is a complement inhibitor, binding at C3b so should reduce hemolysis. Do not know how to make it bioavailable enough to significantly affect hemolysis. LDH went from 623 to 630 in same period suggesting perhaps RBC production up too, activating the PNH.
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  #11  
Old Sat Jan 14, 2017, 08:21 PM
medicalenigma medicalenigma is offline
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Promacta

HI Nadine, check with your doctor about the drug Promacta approved just a few years ago. Solved my platelet issues.

Quote:
Originally Posted by Hayitsmenadine View Post
Hello everyone,

I have recently stopped taking cyclosporine and my platelets have dropped from 115 to 50. My Dr told me he would like me to start back on cyclosporine but after being on it for 14 months I would rather not. However, I also do not want bruises all over my body again. Surprisingly my hemoglobin is at 9.6, which is the highest it has been, but I also have PNH so am doing Soliris every 12 days.

I was researching alternative methods like shark liver oil and papaya leaf tea and was wondering if anyone has tried it and what your experience was with it? Or if there any other methods I can do to improve my platelets?

Thanks, Nadine
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  #12  
Old Wed Jun 6, 2018, 08:48 PM
Casper Casper is offline
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Location: Juneau, Alaska
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Increacing Platelets

Promacta - eltombopag has helped me raise my platelets
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  #13  
Old Thu Jun 7, 2018, 11:58 AM
JoMac53 JoMac53 is offline
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I know this is an old thread but the website www.drugs.com says, "This medicine (eltrombopag; generic for Promacta) is not approved for use in people with a certain bone marrow problem called myelodysplastic syndrome (MDS). If you have MDS and you take this medicine (eltrombopag tablets), MDS may get worse and turn into a type of blood cancer called acute myelogenous leukemia (AML). If MDS turns into AML, you could die sooner from AML. If you have MDS, talk with your doctor." https://www.drugs.com/cdi/eltrombopag-tablets.html

This page on the website was medically reviewed on May 2, 2018, so maybe this is new-ish information. Just thought I'd post it since the topic came up.
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Joanne, 64F; Dx Pancytopenia May '17; Primary MDS RAEB-1 Aug '17. Currenly weekly CBC, Granix shot if ANC below 1.0
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  #14  
Old Mon Jun 11, 2018, 06:26 AM
Cheryl C Cheryl C is offline
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My platelets stay closer to normal and even above normal when I take Vitamin D3.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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  #15  
Old Tue Jun 12, 2018, 05:52 PM
JoMac53 JoMac53 is offline
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Cheryl, how much D3 do you take, and were you deficient before you began supplementation?
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Joanne, 64F; Dx Pancytopenia May '17; Primary MDS RAEB-1 Aug '17. Currenly weekly CBC, Granix shot if ANC below 1.0
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  #16  
Old Wed Jun 13, 2018, 07:41 PM
Cheryl C Cheryl C is offline
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I was very deficient about 8 years ago so took D3 regularly for some time until my count came up to normal (can't remember the dose my GP prescribed at that time).

Since my MDS diagnosis, whenever my platelets drop below normal I get back onto it for a while and it definitely makes a difference. I take 1000iu. It's important to take it in the morning as it temporarily reduces melatonin which is needed for sleeping!

Apparently as we age (I'm 70) we don't absorb D3 from the sun as well as when younger. There are case studies published on line which support D3 for thrombocytopenia.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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  #17  
Old Mon Jul 2, 2018, 10:38 PM
Diana H Diana H is offline
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Location: Basking ridge NJ
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Smile D3

I had fractures in 1978, 1999 and 2008, and osteoporosis. And I have been interested in vitamin D for a long time.

My D was 25.5 when I was taken 2000 iu D3 per day. Year 2006
Itís been 49 to 85 since, reference range 30 - 100 ng/ml

When increased to 10,000 iu per day. My bone pain and tooth aches went away.
Now I take 5000 iu D3 every other day.
I like my blood level in the mid reference range.
everyone is different, some metabolizes faster than others. But most people are vit D deficient, especially old people. It is best to have your blood level checked.
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Female, age 66, dx MDS RAEB with 15-20% blasts 9/2017. Blood counts have normalized after 3 rounds of Vidaza. Finished six cycles of Vidaza. No treatment since March 10, 2018. Currently monthly CBC, will resume Vidaza when blood counts are low.
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  #18  
Old Tue Jul 3, 2018, 08:48 AM
Sally C Sally C is offline
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Hi Diane H,
In addition to the D3 which I take as well, you may want to consider drinking almond milk. My endocrinologist said that food sources of calcium are better than supplements and that almond milk is a better source of calcium than regular milk. He suggested 2-3 glasses a day. They come in vanilla and chocolate as well as regular "milk". I buy the unsweetened chocolate and add a packet of Stevia and it tastes just like chocolate milk.
All the best,
Sally
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  #19  
Old Wed Jul 4, 2018, 08:38 AM
Diana H Diana H is offline
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Smile almond for calcium

Thanks Sally,
Great information.
You always help other people.

Hope you and Don are doing well.
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Female, age 66, dx MDS RAEB with 15-20% blasts 9/2017. Blood counts have normalized after 3 rounds of Vidaza. Finished six cycles of Vidaza. No treatment since March 10, 2018. Currently monthly CBC, will resume Vidaza when blood counts are low.
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  #20  
Old Wed Jul 4, 2018, 07:07 PM
Sally C Sally C is offline
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Hi Diana,
You are very kind to say that. We are doing well. Don is starting his 7th year in remission. Truly a miracle!
Take good care,
Sally
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