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Turmeric and low platelets

  • KineticUncertainty
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11 years 4 months ago - 11 years 4 months ago #45382 by KineticUncertainty
Turmeric and low platelets was created by KineticUncertainty
I cant seem to find a good answer about if turmeric decreases platelet count. I think it may inhibit platelet aggregation though, but thats not the same thing as count. I buy turmeric root, and ginger root and squeeze it into a tea to drink every day. Yes, its very strong! I have been on dexamethasone for 6 treatments now. Finally at the end. now, recovering from it. Each time the count has come up.

Before dex - count @30,000 consistently for several months.
I take the meds for 4 days. Get tested 2 weeks later. I have been doing this for 2-3 months now!

Treatment #1 & #2 blood test to see if responding to steroids.

Treatment #1 -
shot up to normal, but back down 2 weeks later to 30,000
Treatment #2 -
shot up to normal but back down 2 weeks later to 30,000
Treatment #3 -
back down 2 weeks later to 44,000 - but this is increasing.
Treatment #4 -
back down 2 weeks later to 63,000
Treatment #5 -
back down 2 weeks later to 77,000
Treatment #6 -
tested next week.

I am also taking the ginger + turmeric tea every day to help with the steroid side effects. Not sure if the meds are fixing me or not! What do you know about turmeric or ginger and platelet count? Should I stop with the tea? It seems to be helping me with symptoms.
The following user(s) said Thank You: delta809

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 4 months ago #45383 by Sandi
Replied by Sandi on topic Turmeric and low platelets
I think you answered your own question. If it's helping in any way, why stop? If it does inhibit platelet aggregation though, you might want to be careful if counts are down as that can promote bleeding.

I do not have any idea if it would help with a platelet count. I've never seen anyone try it for that before. I have some that I use occasionally because I've read that it helps with inflammation.

Question - do you have symptoms at 30k? I'm asking because most people wouldn't treat at that count. Dex is pretty potent and all of that is hard on the body, both short term and long term!

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  • KineticUncertainty
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11 years 4 months ago - 11 years 4 months ago #45387 by KineticUncertainty
Replied by KineticUncertainty on topic Turmeric and low platelets
I had no symptoms @30,000. No fatigue. One or two spots here and there that were small. After this I am done with treatments. Can I ask you another question? My platelets seem to be rising. How long after you stop taking steroids would they come back down if they would? If you look at my 6 treatments they seem to be rising. I am optimistic this is working. Its been 3 days since i stopped and I am very sick. It usually takes me 7 days to start to feel back to normal.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 4 months ago - 11 years 4 months ago #45389 by Sandi
Replied by Sandi on topic Turmeric and low platelets
Everyone is different, but most people do not see a response like that. They take the Dex, counts soar and then come crashing down within a week after stopping. Most cannot handle Dex more than once or twice. Studies have shown that taking Dex in pulses like that can cause remission. I have never seen that happen in my 15+ years on the Forum. Mostly because no one can stick to it that long. The studies also say that Dex is well-tolerated.

I'm wondering why your doctor is putting you through all of that since you have few symptoms and feel fine. The treatment is definitely worse than the disorder in your case. I hope it does work for you after all that!

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  • KineticUncertainty
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11 years 4 months ago - 11 years 4 months ago #45390 by KineticUncertainty
Replied by KineticUncertainty on topic Turmeric and low platelets
I also started fasting during the treatments that they responded. I think I did 4 fasts. I read a study that you can regenerate a new immune system. My thoughts were that it was a great time to do it with the dex. I fasted for 4 days at a time(mostly just teas and distilled water). I also have a lipoma thats very large on my shoulder. I needed 50,000+ to get the surgery. She said taking the dex for 6 treatments could have a potential 70% cure rate. I also just graduated from college in june and being unemployed. That with needing the surgery I said lets do it. I really think the fasting is what is helping me with the treatments. Obviously, I cannot say for sure. I go back in on the 16th to get a blood test for treatment #6. If the trend continues I might see 90,000+

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11 years 4 months ago - 11 years 4 months ago #45393 by juliannesmom
Replied by juliannesmom on topic Turmeric and low platelets
There is helpful information on turmeric at the University of Maryland Medical Center website. I've pasted it below. In general, I think turmeric is good for health, but the website says it can act as a blood thinner and should be discontinued at least two weeks before any surgery. I think one person posted years ago a dex pulse remission story. (It was probably a teen patient mentioned in the parent's forum.) That's why we decided to let my then thirteen-year-old try dex seven years ago. She didn't like the way she felt on dex, but had a great count at the end of the first pulse. Then, she crashed so quickly to a level she previously tolerated just fine, that she ended up in the ER and admitted overnight for IVIG due to a nonstop nosebleed. (Lost about a pint.) We never tried a second pulse. That said, within a couple months, her counts were increasing gradually to safer levels and eventually went to normal.
She hasn't had a recurrence or needed any additional treatment. (Knocking on wood here.) I can't say the dex helped, or the IVIG, or she just was heading toward remission anyway. Whatever it was, we are thankful.

While typing this, I am also reminded that, during the course of that rise to safer counts, but before she reached normal counts, she also had some strange illness develop after a school trip. It was bacterial, and unrelated to ITP, but her reaction to the illness may have been more severe due to her autoimmunity. She was treated with doxycycline for that. That illness and the doxycycline may or may not have had an effect on her counts. I'll never know.

Norma

umm.edu/health/medical/altmed/herb/turmeric

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 4 months ago - 11 years 4 months ago #45397 by Sandi
Replied by Sandi on topic Turmeric and low platelets
I think fasting can be good for the body, but while you're taking Dex you are putting your body through a few shocks all at the same time. I don't know if that would be beneficial or not.

I hope it works for you. Time will tell. Keep us updated.

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11 years 4 months ago #45400 by Aoi
Replied by Aoi on topic Turmeric and low platelets
I've read a good bit about fasting and typically do extended fasts several times per year, so I have some personal experience here.

First, fasting while taking strong meds like steroids is not recommended. Everything I've read consistently says to wait until after taking the meds. However, these recommendations seem to be based more on the precautionary principle than on clinical studies.

Second, fasting does seem to alter immune function in beneficial ways, at least during the fast and for a short while. I've read anecdotal reports of sustained water/tea/juice fasts putting auto-immune disorders into remission but have yet to see a good clinical study.

Third, there have been a number of recent studies on intermittent fasting that suggest that msot of the benefits of fasting can be had with short-term (less than 24 hrs.) of fasting done on a more regular basis.

Hope this helps. I have a platelet check tomorrow, so I'll get another data point to add to my collection.

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  • KineticUncertainty
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11 years 4 months ago #45481 by KineticUncertainty
Replied by KineticUncertainty on topic Turmeric and low platelets
My last blood test revealed that my platelets are dropping and are down to 54. This is confusing to me since I took the steroids the same time and got tested at the same time for each treatment. I go back in in a month. My hemo said that if I go on other meds it will be for life just to keep the numbers up. So, she said that anything over 25,000 I dont have to do anything. I am scared of the future. I am fed up and I am going to do no splenoctomy or further medications. I may do rituximab in the future if things get bad. However, that doesnt sound promising long term. Sounds like to me all the treatments are worse than the disease itself. I guess it doesnt look like I will live very long. How does one go on from here?

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11 years 4 months ago #45482 by eklein
Replied by eklein on topic Turmeric and low platelets
Well first of all you might want a different hemo, one who doesn't pretend to be a psychic who can see the future. Other meds are not necessarily for life. Even with nplate there is recent research showing it can have a lasting effect after you stop using it. So the course of this disease can vary.

With counts of 54 you should be ok for just about everything except sword swallowing.
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 4 months ago #45484 by Sandi
Replied by Sandi on topic Turmeric and low platelets
OMGoodness Kinetic! ITP does not necessarily shorten a lifespan. You can look forward to many years ahead! Death from ITP is rare, and will almost never occur if a person has counts above single digits or responds to treatments.

I don't know where some of these doctors get their information. Erica is right, N-Plate does not have to be for life. Many people have used it and stopped for two reasons: 1. A remission occurred or 2. They moved on to another treatment. Personally, I feel that N-Plate is a great option if you have a doctor who knows what they are doing. It is not supposed to normalize counts; it should be used to maintain counts around 50k. It does not have to be for life.

Everyone pretty much agrees that the treatments are worse than the disorder. You'll get no argument there. Treatments can cause long term side effects (depending on the treatment), so it's wise to choose carefully and only treat when necessary.

You're actually doing pretty good as far as ITP goes. If you don't have to see the Dr. for another month, that is great! How does one go on? For now, live your life normally and forget about ITP unless you see symptoms. Of course, don't do anything reckless though. See the Dr. in a month and make a decision based on counts and symptoms. You basically take one day at a time. If you don't have symptoms in the mornings, just go on with your day like you normally would.

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