Recreational drugs

[Dream23]

Does anyone use cannabis or other recreational drugs, who has PV and takes rivaroxyban and Pegasys interferon? I am curious, but think no point asking my doctor about this as they couldn't answer if it's safe or not.

[hunter5582]

You can look the answer to your question here.drugs.com/drug-interactions...

What is not going to show is that many psychoactive recreational drugs have clear risks regarding depression, anxiety and other mental health issues. Given that this is also one of the risks of Pegasys, suggest that caution is indicated regardless of what the interaction checker shows.

[Dream23 in reply to hunter5582]

Thanks, that's a great resource. Yes I'm extremely cautious since being diagnosed 2 years ago with PV and CVST. But wish I could live a carefree light-hearted life without fear again....

[hunter5582 in reply to Dream23]

Always find a way to have fun! It is a vital part of life. After heart surgery, brain surgery, ET rogressing to PV and two other surgeries in a three year period, this is a lesson I take to heart. That and find a way to handle the fear. I use this as a mantra.

"I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past, I will turn the inner eye to see its path. Where the fear has gone, there will be nothing. Only I will remain." Frank Herbert, Dune

All the best.

[Hidden in reply to hunter5582]

Sage advice Hunter, go carful Dream23 and stay safe.

[Anag in reply to hunter5582]

LOVE THIS MANTRA! Im putting it in the bathroom mirror! And….I’m sending it to my daughter who has chronic Lyme (4 stems!) and this phantom illness was finally diagnosed after years of strife! She’s now back in school at 18, working toward finishing high school. She has almost no self confidence left and lives in constant fear of her weak body knocking her down again. She used to be a passionate and amazing dancer and singer, with a strong personality until this thing kept tying her to her bed, robbing her of sleep and isolating her completely from her peers!

Thank You so much!

Anag

[hunter5582 in reply to Anag]

I hope that bit of wisdom from Frank Herbert does help. If your daughter likes to read, I would suggest a book by William McRaven, Make Your Bed. It is about developing a certain type of mindset. I find it highly relevant to dealing with a chronic disease.smile.amazon.com/Make-Your-...

Please give your daughter a giant hug from "Uncle Steve." Wishing both of you all the best.

[katiewalsh in reply to Dream23]

Are you unable to take prescribed anti-anxiety or antidepressant drugs? Those are carefully regulated for substances contained & have many years of use to determine potential side effects. I don’t mean to say I don’t understand. Lately I’ve been saying I need a “happiness pill.”

[Anag in reply to katiewalsh]

Hi Katie!There are so many natural alternatives to boost simple depression! The meds only in dire conditions! They destroy your gut and create more autoimmune response, and reduce nutrient absorption! Ouch! They are also addictive.

Try tryptophan 5-HTP, which helps our body create seratonin and get a good night’s sleep. 80% of our serotonin is produced in the gut. Eat clean foods, get rid of gluten! Healthy gut = healthy body and mind. St. John’s Wort and GABA also good. Passa Flora dropS take away stress and fear.

God gave us everything we need in nature. Check out those hard to kill weeds!! They’re indestructible because we should be eating them as the Greeks do! The bitters: Boil, oil and lemon! Liver clean = mind clean.

[Dream23 in reply to Anag]

Hi, thanks. I'm just replying more generally about this - Before I was diagnosed with PV and CVST I was taking 5-HTP and was told to stop as it wasn't safe, and told to stop any other supplements excepyt evening primrose oil and vitamin D. St Johns Wart is particularly not recommended. I am so torn about having to take drugs life long to live longer, but I am simultaneously unbelievably grateful for medical science and research that I can live longer and healthier on specific tried and tested medication. I agree with you about using nutrition and looking after the gut, good advice! And I wish I could find a holistic practioner who had expert knowledge and understanding of MPNs and associated neccesary medications (I've been looking over the past 2 years). I saw an accupuncturist this week who suggested a liver cleanse and flower remedies, I wouldn't have thought twice about the benefit of this generally before being diagnosed, but I am exteremely cautious about not wanting negative interactions/side effects, and so unfortunately have nowhere to go to ask expert professional advice on this. Cleansing liver when I take medication everyday that needs to work...?! The accupuncturist was very good but had never heard of or researched PV, so I have to be very careful when people advise with good intention but not specicifc medical knowledge too.

[Anag in reply to Dream23]

5HTP has helped me enormously, but I will not take it more than 3 months. Liver cleanse. Be careful! There are many types. Firstly, you must have a good functioning digestive system and be pooping daily!, else your body will repoison itself, through toxin reabsorption from the gut!! I did a very aggressive cleanse and that through my Anagrelide out. Now I do liver cleansing 1-2x a week. That and all antioxidants, I take at least 3 hours after my Anagrelid, so that it has time to work (half-life is 1.3 hours) and 3-4 hours before my next two capsules.

There are functional doctors, TCM doctors, bioresonance (fabulous!). Keep looking. I’ve tried them all and have learned from every single one. None of them know very much about my ET, but I do and we form a team and discuss everything. Doctors can’t know everything. Difficult illnesses need a team.

Liver cleaning is and good: lemon water with food, especially if you don’t have a gall bladder! Gets the gall moving.

My favourites that works immediately for detox and can be taken with meds (a few hours away) are detox baths and coffee enemas. I cannot tell you how amazing they work, how fast and effective. Once a week. I’m very courageous and I don’t care about something being gross. If it works, I use it. If it’s tastes horrendous I don’t care either. I want to get better and will do it. 😁

Hope to have helped. Anag

[Dream23 in reply to katiewalsh]

Hi Katie, Thanks, I'm waiting to hear back from a consultant if it's safe to take citalopram antidepressant 20mg, which was prescribed for me a year ago, but I didn't take as didn't want to add a third medication to my mix, because of the harmful side effects of taking medication. Also, I know that my depression is caused by the pegasys interferon. I feel very upset that it's come to taking a third medication to battle the side efects of my other medication, rather than trying to 'heal' the depression myself with yoga, exercise, meditation, creativity, nutrition etc. But I'm at a point where I'm on the cusp of coping...

[katiewalsh in reply to Dream23]

Many drugs don’t interact with each other. My antidepressant, Escitalopram, doesn’t interact with my other meds, including Hydroxyurea & blood thinners as well as other prescription meds I take. Your doctor can tell you.

[Mostew]

I have no experience but just wanted to respond .Hope you find its safe to take. Would be nice to have something that helps you. And is natural. I guess we all react differently. So if you do try something , as Hunter says be cautious.

Let us know if you decide to and what effects are.