Detox plan changed

[Mostew]

I was thinking of doing detox for a month and stopping Hydroxycarbamide whilst doing. Then having blood test. Decided to go down to meds Monday and Friday for a while to see what happens .

If little change negatively , then do detox.

[Mazcd Partner MPNVoice]

hi Mostew, please discuss stopping your Hydroxycarbamide with your haematologist for his/her advice. Best wishes, Maz

[Mostew in reply to Mazcd]

Thanks Maz I've already emailed professor Harrison . Waiting for response. I think it's very difficult to really know how individuals respond .

Feel it should be OK as long as bloods monitored plus watching out for symptoms.

Even in same hospital opinions difer re. Dose of meds. Good Platlet level etc

Do hope you are doing OK

Carolyn

[EPguy]

As Mazcd says, it's a Dr question that is best not done without.

Based on what some switching to IFN have experienced, if Dr agrees, you'll likely find a slow increase in counts over that time. It might even look fine for a couple weeks. The response lag makes drastic changes riskier.

Are your counts comfortably below the limits now? If at the limits you'll likely exceed them quickly.

Many of us have made small adjustments to HU during a week without Dr discussion, but drastic ones really should be coordinated.

[Mostew in reply to EPguy]

Thank you for your valued thoughts.Yes, I will wait to see what Professor H says and weigh up reasons given if not advised.

Because I'm intending to have blood test

I thought platelets shouldn't rise to much if at all .

Platelets are 520 so i wait till 400 . No hurry. .

But there may be other consequences to consider.

I didn't think slowly lessening meds and seeing blood results was a drastic change ?

THEN stopping for month if OK

The idea of giving the body a chance to eliminate toxins and start again on meds maybe once a year, seems sensible , although unconventional.

So glad to be here and share thoughts and ideas . And to be supported by everyone.

Best wishes to you

Carolyn

[katiewalsh]

Hi. Please don’t do this without talking first with your MPN doctor. I almost died from blood clots because my MPN wasn’t yet diagnosed so I wasn’t getting treated. I now have permanent lung damage, I need oxygen when sleeping or am sick with a respiratory infection. And there are many on here whose blood clots (pre-diagnosis) caused permanent paralysis from strokes & others had heart attacks from clots. According to literature, two main ways MPNS cause death are from blood clots or bleeding. And if you stay on your meds but your weight is going to drastically change from your fast, you should discuss that with your MPN doc to see if it would necessitate a change in the amount of meds. This is not something to play around with if you want to live a healthy life. Sorry to be harsh but the consequences can be life threatening. Hydroxyurea is not like a multi-vitamin. Katie

[Mostew]

thank you so much for your concern Katie

I can see why you would recommend caution.. I was very lucky . Reckon I was undiagnosed for many years and was lucky not to have had any problems in that time.

The Detox isn’t a fast . Thinking of taking Clinoptilolite.

Used to fast but wouldn’t these days

Unfortunately doctors and people generally have a variety of views on what is ok. Doctors even in Same hospital vary in advice.

Ultimately I like to way up pros and cons and decide based on all views . Then watch with caution and seek more advice along the way ..

I hope over the 2 years I have been on this site ,that it’s clear I respect the use of conventional medicine .

Very important to have good advice from those more knowledgeable than me when taking herbs etc.

As Hunter says what does you good can also harm

Think that’s what he says ? Apologies if I’ve mis quoted !

I do hope you are managing ok with all your ongoing challenges

Warmest wishes to you

Carolyn

[Kathymoore]

I went off the Hydroxyurea for a few weeks because my Hematologist was concerned about the frequency of skin cancers on my face. Unfortunately, within weeks, all of my symptoms returned. Fatigue, occular migraines, and erothymalgia in my toes. Platelets went up to over 900. So started taking them again as they definitely “do the job”. Dermatologist told her that the skin cancers are not abnormal for my age (mid 60’s) and skin type and that he would stay on top of checking and treating my skin (6 month visits).

[ERei]

I was getting nausea from hydroxyurea. I had been on it for a year and initially attributed my worsening nausea to my reflux but when I tried stopping it my nausea went away. I discussed decreasing the hydroxyurea with my MPN doc to every other day & he said no even though all my #s were great & actually below normal. I eventually stopped it on my own because I could not take the nausea any more. This was a couple of months ago. We are now watching my bloodwork to see how it goes.

[Mostew in reply to ERei]

I was advised to take meds every day when I first started . Seemed sensible to start every other day . This plan has worked . A year later

Dr 's now agree with me ..

Do hope you continue to see positive results . Well done for being pro active .

[Mirror368 in reply to ERei]

I eat a meal and take HU a half hour after eating with a full glass of water. Are you drinking minimum 64 ounces of fluid a day?

[Mujer]

I agree with all the suggestions that reducing or stopping hydroxocarbonide should only be done following discussion with your clinician. The level you are prescribed is what is necessary to keep counts under control. I am currently being monitored every 6 weeks for this very reason. Please, please be very careful and best wishes

[Mostew in reply to Mujer]

Yes . Vital to keep open communication with all involved in our care Thank you

[PhilReade]

Hi I take fresh lemon and honey daily I’ve never stopped my hydroxycarbamide I take daily

My platelets are always just over 400 I’m on 1500 mg daily

I’d take advice off your Haematolygist first

Regards

Phil

[Mostew in reply to PhilReade]

yes lemon and honey is good . I have a little ginger to…

Thoughts from Heamo. Will be taken into account before I decide .

Thank you for your thoughts

[rebeccaxxx]

this is an interesting idea, i wonder if there have been any trials in taking hydroxy on and off rather than forever. i will be interested to hear what they say and follow your journey. i am currently resisting meds and making lifestyle changes to reduce cholesterol from 5.2 to as low as i can get it! i have 20lbs to lose and have just started regular exercise so i am hopeful combining that with moderate dietary changes will help.

[mjn500]

What are you looking to accomplish by "detoxing"? Our bodies eliminate toxins as a matter of course so unless you have organ damage - and if you do I hope it is being treated! - so I'm not clear what you want to remove.

[Mostew]

sorry not to be clear…

I m just trying to do all I can to keep clearing effect of putting such a strong

Substance into my body …

Really don’t want to sound like silly .

I’m not. Honestly !!!

Ps. No I don’t have organ damage.

Hope you are doing ok

[Island-Lady]

Of course you should talk to your hematologist, but I agree with your thoughts on making your medication work for you for your individual body, since we are all different. I try to assist my low-dose of medication with many natural healthy supplements and exercises. Luckily my hematologist has been OK with this, although he did mention that I was driving my own care, but he seems to respect this. We have an inexpensive infrared home sauna and I use this to help detoxify from my medication which was initially hydroxyurea, but I switched to Pegasys six months ago.

I wish you the very best of luck in your journey !!!!