Complementary health

[Pen7]

Hi its so helpfull reading others understanding of trying to day to day living with our health. All ways trying to think how to self help with own body issues naturally! Excercise, diet alternatives. I feel i get frightened to come off any of drugs and go with what Dr's say which has helped so much and am very greatful iam on blood thinner, Hydroxycarbamide for 4 years with PV, don't like staying on it, up down with different symptoms like alot of people i here. Has anyone managed to cut down on meds with natural alternatives. All the best have a lovely day.

[Mwalimu]

My experience is that complementary practice has helped my quality of life, not reduced my use of medication (HU + aspirin) prescribed by the doctors. I t has reduced my fatigue and I generally feel so much better. Sallie

[Pen7 in reply to Mwalimu]

Thank you for replying, its so good you find it helping you and encouraging to try other natural things to. All the best.

[light in reply to Mwalimu]

Well said, we just support ourself with complementary practice/supplements not replace medication. So important to know that. Wishing you well.

[ainslie]

I would be very careful about reducing meds in the hope natural helpers may take their place. I have tried everything natural and for me it made no difference to the MPN but did help general health.

I don’t recommend you do this but if you keep your meds as they are and introduce “natural” helpers and monitor your counts over say 6 months you will see if you’re getting anywhere. Just be careful which natural helpers you try, some can work against us with MPN.

As a general thing, exercise, good healthy food, correcting any vitamin deficiencies and hormone deficiencies, reducing alcohol and sugar, avoiding pollutants and chemicals in the home can all help to make you feel better and allow your immune system to function optimally but I have never heard of it changing the MPN.

[Pen7 in reply to ainslie]

Thank you for your very sound advice and I appreciate what you say. Just never been one to take much meds in life. Just have to be greatfull and lucky to have the NHS supporting me. All the best

[ainslie in reply to Pen7]

yes I dont like meds either but unfortunately for now some of us need to take them

[hunter5582]

Complementary health approaches can be very helpful in managing many MPN symptoms. They do not replace traditional Western medicines but can supplement treatment is significant ways. I have had significant success with reducing systemic inflammation using this approach. In addition, it is all the more important for those with MPNs to pay attention to good health, including diet, exercise, and reducing exposure to toxins. It is worth noting that anything that is biologically active enough to help you can also hurt you and interact with other medications. That is why I consult with an Integrative Medicine doctor about complementary health interventions.

Regarding hydroxycarbamide (HU), that is not the only choice to manage PV. There is also Jakavi (ruxolitinib) and the interferons (Besremi or Pegasys). If you find that HU does not suit you, then you can change to another medication. I was refractory to and intolerant of HU. I have done much better on the interferons, Pegasys then Besremi. The interferons have been more effective and much easier to tolerate for me. My JAK2 variant allele frequency has reduced from 38% to 10%. Most importantly, my quality of life has improved on the interferons.

Wishing you all the best.

[Pen7 in reply to hunter5582]

Great reply as allways Hunter thank you . Hope helps us all keeping positive and to all the replys. All the best

[Nerjalover in reply to hunter5582]

thank you for the advice you contribute to this group Hunter- are you medically or scientifically trained in someway as you certainly add a good deal to this group and zi always look forward to reading your advice. Also do you live in the USA?

[hunter5582 in reply to Nerjalover]

Thank you for your kind words.

I do live in the USA. I am not a medical professional. My background is in clinical psychology. This background taught me how to evaluate research and assimilate information. My own health journey with the MPN and other conditions has taught me how important it is to educate ourselves about the conditions we need to manage. Understanding the underlying science behind the conditions and their treatment allows us to make better decisions.

Wishing you all the best.

[AnBee]

I recently consulted a Professor of Naturopathy at the Southern Cross University in NSW who is double or triple PHD on trying to assist me with my MPN which is post ET MF. She is currently involved in another research program in 2 oncology hospitals in Sydney Australia using an excellent high quality Ginger extract to treat MDS and though the trial hasn’t finished yet she reported to me that is going very excellently in reducing bone marrow inflammation and indeed recommended it for me. She is a very informed on bone marrow and all cancers and this is her special field of interest. I did a Telehealth with her.

[Nerjalover in reply to AnBee]

So to reduce bone marrow inflammation ( which I think we all have) take ginger supplements or drink ginger tea? Is that

[Nerjalover in reply to Nerjalover]

Continued- is that what you would advocate?

[AnBee]

no the product used in the research is called 6- shogaol

An isolated active ingredient found in organic fresh ginger non gmo

[ainslie in reply to AnBee]

maybe a be a bit careful on how much ginger to take , as best I can remember it can do something to reduce clotting or something like that , as usual best run it by your doc before taking it

[AnBee in reply to ainslie]

The research is being done now. So I am not advocating taking ginger alone without advice. My Dr who is a Professor of Naturopathy at a University recommended it to me at a particular dose. She also specialises in the supportive treatment of cancers ergo her knowledge on this subject is excellent and outside the usual scope of Allopathic medicine. She also conducts her research ( she has 3 PHDs) through major oncology hospitals. She also is interested in the bone marrow cancers and she does Telehealth. 😊