I been to see the haematologist yesterday my first face to face appointment, I had another blow to the brain, when she explained I have another rare condition as well as high platelets, jak2 and something else which was only discovered by the medical researchers 3yrs ago and sorry I have forgot the name , just could not take it all in
My daughter is a natural health follower and my husband believes in the medical science
both are blowing my head with their theories
To eliminate one or the other, can anyone tell me …. Is there a natural way to control my condition or should I start the chemo tablets and aspirin
I know there must be a lot of good people out there that have been faced with this same Delmer
Thank you everyone for reading this
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Tyray123
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My approach is to take advantage of both traditional Western Medicine and complementary health approaches. The key for any treatment option is whether there is solid evidence to support the intervention.
Given that you have noted platelets specifically, it sounds like you are diagnosed with ET. Use that as a starting point. Western medicine interventions would include hydroxyurea/hydroxycarbamide (chemotherapy) or PEGylated Interferon/Pegasys (immunomodulator) as the two first-line treatment options. There are also second-line treatment options of anagrelide and Jakafi/ruxolitinib.
Note that if you have Polycythemia Vera (PV) the treatment options are similar. Besremi/ropeginterferon is the approved interferon for PV. Note that you can have thrombocytosis with PV in addition to the erythrocytosis. It is important to be sure to know which MPN you are diagnosed with as it does affect your treatment goals and options.
It is also important to know which co-occurring conditions you have. When you have a MPN and another disorder, the conditions can impact each other. A co-occuring disorder can also be a contraindication for some forms of treatment.
At the core, MPNs are inflammatory disorders. The JAK2 mutation upregulates the JAK-STAT pathway. This does more than cause too many platelets. it also causes the body to make too many inflammatory cytokines. This is thought to be responsible for many of the secondary/constitutional symptoms experienced with MPNs. Controlling these symptoms is just as important in managing a MPN as reducing the risk of thrombosis.
Regarding complementary health approaches, there are some things that can help. You will not necessarily reduce platelet number by a lot, but you can reduce inflammation. There is evidence to support the use of a Mediterranean diet to reduce inflammation. There is also evidence to support several dietary supplements. Curcumin (active ingredient in Turmeric) has good evidence as does N-Acetylcysteine.
I use Curcumin to great effect in controlling osteoarthritis. it works better than any NSAID I ever took. I amusing L-Glutathione as an alternative to N-Acetylcysteine. I also am using Besremi and aspirin as part of my MPN care plan. Both are very effective and easy to tolerate. I consult with an Integrative/Functional Medicine doc about the supplements and a MPN Specialist about the MPN-specific meds. I always keep my entire care team apprised of everything I am doing.
The thing with the supplements is that anything that is biologically active enough to help can also hurt and interact with things. I never make assumptions and always check everything I take with the appropriate providers.
Given what your questions are, the best thing to do is to ensure you have a MPN Specialist (not just a regular hematologist) and in Integrative or Functional medicine doctor on your care team. Here are a few links to these docs.
Hi, I just wanted to ask hunter5582, about Curcumin supplement and Aspirin and how those two work and interact? I am ET JAK2+ on Aspirin 75mg and Peg Interferon 45mc every four weeks and suffer with lots of osteoarthritis pain. Wishing you well.
Most supplements that are anti-inflammatory have a tendency to potentiate the blood thinning effect of aspirin. Curcumin can have a mild effect in this area but not noticable for me. The potential for interactions is precisely why I consult with an Integrative medicine doc on these issues. We always have to weigh the benefits and risks of any intervention we try. for me, the anti-inflammatory benfits of curcumn far outweigh the very minor risks.
Curcumin makes the difference between being functional or not with the osteoarthritis. My docs had me on high-dose ibuprofen and then Meloxicam. We even tried Lyrica. Curcumin works better for me than any of those medications. Also, the NSAIDs used for arthritis are far riskier to combine with aspirin.
Avoid/Use Alternative
ibuprofen + aspirin
avoid aspirin >325 mg/day; otherwise, monitor bleeding s/sx, renal fxn; give ibuprofen dose >400 mg 8h before or at least 2-4h after low-dose aspirin ER: combo may incr. risk of GI ulceration, perforation, bleeding (incl. life-threatening), renal impairment, other adverse effects; ibuprofen may inhibit cardioprotective effect of low-dose aspirin (additive effects; possible competition for platelet binding sites)
Avoid/Use Alternative
meloxicam + aspirin
avoid aspirin >325 mg/day; otherwise, monitor bleeding s/sx, renal fxn: combo may incr. risk of GI ulceration, perforation, bleeding (incl. life-threatening), renal impairment, other adverse effects (additive effects)
I did combine the curcumn with PEG and aspirin. It was not a problem for me. It is important to let your care team know if you want to try curcumijn. Also a good ides to check supplements out with an Integrative or Functional medicine doc. They are more knowledgeable about complementary health approaches than other docs.
Curcumin does not pass readily into the bloodstream. It needs help (bioavailability). There are several ways to do this. Some use black pepper extract (piperine). Others use alternative methods to make the curcumin bioavailable. My Integrative medicine doc recommends a formulation called CurcuWIN, which is available in several brands. I use the Spring Valley brand that I can get at my local Walmart. There are other brands that use CurcuWIN as well as brands that make the curcumin bioavailable. A local naturopath, pharmacist, or Integrative/Functional medicine provider can best advise you as to what is available locally.
Read as much as you can - this is a superb website started by Prof Claire Harrison - there is so much support available there. I have a feeling you re in the US? Learn all the terms, become familiar with the names. ie break them down poly -cy- themia / essential throm-bo- cy-themia.
My-elo-pro-liferative-neo-plasm.
Learn what your haematocrit is.
Question your consultant. You are paying him to do a job and he isn’t God.
If you don’t understand what he’s saying , stop him, and tell him to go slowly.
Is he a specialist in MPNs ( MPNS are myeloproliferative neoplasms and comprise 3 conditions - PV, ET AND MF.
( please look this up and learn!!)
If your haematologist doesn’t specialise in MPNs you might like to find one who does.
Get lots of rest ( I go to bed at 11 and don’t get up till 9. I don’t sleep all that time but my body is resting)
Drink at least 2 litres water every 24 hours
Walk at least an hour a day.
Don’t eat processed food - I can’t imagine you do anyway.
Most of all avoid stress and worry.
Wishing you all the very best - remember the posts on here are from folk who may be worried like you, or may not be feeling that great BUT for every post there are thousands of us all over the world, feeling fine, and getting on with our lives - just like you will.
It’s early days, give yourself time and ALL WILL BE WELL. ( a good mantra to keep repeating )
Wow Louise, thank you so much for your post. You must be a teacher. What you wrote serves as a primer for we us who are beginning to understand our MPN. My friend, who is a teacher has said I am in a transitional phase (diagnosed 4/22) learning what works for me. Wish you could write a handout to help newbies. I will save your post and read it over and over. I am 76 and FINE, also.
For any substances you might take to help with MPN, you should also consider the other rare condition you have. You should seek advice on how any supplements etc could affect that when taken for the MPN. Some might aggravate that other condition.
I'm on Besremi and take Curcumin + NAC as Hunter discusses here. But I have only the MPN as a main trouble source. My Dr is ok with the safety but skeptical whether the supps are useful. I think it probably helps reduce side effects of the Besremi.
I have had ET for over twenty years and now MF been on all the drugs available I think and am now on ruxolitinib and daily aspirin. I also use herbal remedies but I know they cannot replace the targeted medicine from the hospital.I use natural herbs to control nausea ,sickness and pain in my bones ,it stops me having to take painkillers and antisickness tablets etc .I think if you find a good balance between the two it can help reduce the amount of pills each day which is not a bad thing imo.
I use ginger and sorrel tea , soursop and medical cannabis oil and flower which is a legal prescription. The later helps so much I completely stopped all painkillers and it helps with my appetite I have gone from a skinny 10st to a healthy 11 and half st. I hope I have helped you , take it easy
I had a double seizure, fractured my skull, I have epilepsy, in 2018, affects my equilibrium, my balance, I was advised to take aspirin, but thanks to Hunter and subsequent approval by local specialists, as aspirin would react to my medication, so Turmeric [or Curcumin] has proved to be successful in relieving headaches and some of the balance problems, my favourite is Turmeric with black pepper as the most successful since I started taking them in September last year!
Actually recently my sister has genetic osteoarthritis in her hands, it affects my knees, when she was getting some turmeric with black pepper for me, she bought some for herself👍 I use magnesium oil spray on my knees👍have done for many years!
I am 46 was diagnosed in January 2022 and was jak2 positive and pv . It was a shock but I was started on the chemo tablets straight away and they lowered my platelets by half xx
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