Hi everyone, has anyone stopped all meds and gone back to life as it was before? I so want to get off this roundabout! I accept I am a bit depressed at the moment I've had a lot of grief in the past nine months, but I am heartily sick of the pill taking, fatigue and weakness and EVERY THING else that seems to have come along since taking this poison. The only thing that stops me is the fear of a stroke and being left in a worse state! If only it could be known what the real risks were..... miserable person signing off, sorry 😢
Stopping.....: Hi everyone, has anyone stopped... - MPN Voice
Stopping.....
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Bridie123
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As if I cannot guess.....which meds are you taking?
MazcdPartnerMPNVoice
Hi Bridie, please don't be sorry for feeling like this, we all understand how you are feeling, I think we all feel like this at various times along this journey. Of course the decision is yours as to whether or not you continue taking your medication, but my advice would be to discuss this first with your consultant to see if you could possibly change from Hydroxycarbamide to something else. Also, as you say you are feeling depressed at the moment, it might be wise to speak to your GP about this, he/she may be able to help you with this, there are a lot of very good therapies available now online with apps that you can use at home, and also maybe some counselling might help you, it is always best to speak to your GP about this as they can offer a lot of support and advice to help you. Best wishes, Maz
Thank you Maz x
Hi Bridie123,please do not stop taking your meds,you do really sound low in yourself, is their perhaps a family member or close friend you could talk to about how your feeling? You have to offload what your going through with someone and why you feel the way you do. I think a few of us have felt the way you do right now about the pill taking malarky but we continue to do so because we know the consequences if we don't. If its the medication you take, see if you can get an appointment with your haemo or phone your cns to talk and tell her how bad your feeling about it. Have you seen your gp,if not,please do so. Don't feel your all alone,ask maz for a buddy who's been through a similar situation as you so you can talk,above all, remember their are people here that care and will listen to you. Sending you warmest wishes and hugs.xx tina🤗
Hi Bridie,
I too had an awful psychological reaction to the hydroxycarbamide -just felt desperate and anxious and angry. Horrible . When my medication was changed to ruxolitinib I felt much better. Yes, life is a bit grim with an MPN, and being ill creates its own set of fears and anxieties, but some of the medications can make it feel much worse. The answer is not to stop the medications suddenly, but to talk to your haem or CNS and explain that you are having a bad reaction to the meds, and is there an alternative.
Its easy to confuse the sort of sadness and anxiety that can be caused by finding out you have a potentially life limiting illness, with the very specific psychological reactions that can be caused by the drugs themselves. People who are on steroids, for example, can get get furiously angry and have a hair trigger (it even has a name -"roid rage"), and that is just the physical effect of the meds.
I told my team that I really couldn't go on like this, when I was feeling so awful from the hydroxy. And they understood, because they must have seen those reactions before. in some people. So, talk to your medical team about it. And do keep sharing here.
All the best
Rachel
Thank you Rachel I might try again ☺
The others have given good advice. I would just like to send you huge E hugs to let you know I'm thinking about you. Kindest regards Aime xx 😺😺
I know I have to take my meds but sometimes I have a break, just a couple of days, not too often though. It has never had any serious effect on my numbers which have been fine for a while. However everyone is different and checking with your doctor and specialist is a must.
Hi Bridie, my heart goes out to you going through this, I am not on heavy Meds. myself but I would agree with other contributors, talk to your Haemo regarding a change of medication maybe there is something that would suit you better. It can sometime be a difficult journey that we MPN'rs are on but with the support in this forum we know there is always someone there to listen. Sending good wishes and hugs.
Garry
Thank goodness for this forum, no one else listens
Morning! I too feel this way. Have never been depressed before but after taking Hydrea for almost 3 years now I get more and more depressed because of the fatigue, headaches and nausea it causes. I am meeting my haematologist in an hour and I will ask to either go on peginterfeon or stop completely because its affecting my entire life, from socialising to my career. Best of luck!
Hi there, how did you get on? Did they take you seriously or say it has nothing to do with the MPN or meds
Hi, just finished with my appointment, had a phlebotomy beforehand too. I've been taken off Hydrea now but will do phlebotomy once a month and be on 2x ecotrin daily. The plan is to figure out if the Hydrea is causing most of my issues and then move me over to peginterferon. The problem is that the supplier withdrew from South Africa a while back, and my Haem has to find out if there is a new supplier or way to get it into the country. He will also write a letter to my employer who seems to think I am lazy for not being able to work past 1pm. So he is 100% understanding that the meds and MPN can cause these problems.
Hi Bridie,
I'm sorry to hear that, and I totally understand the situation.
I wanna share one incident, which took place 10 years ago when I was on HU. I was living in a country where corrupted pharmacies may sell fake medicines instead of the original ones. I used to buy HU from the pharmacy that belongs to the authorities, but unfortunately for a couple of months this pharmacy stopped receiving HU for some reason, so I had to buy it from the commercial pharmacies and it turned out that it was fake. The outcome was that I had Budd-Chiari syndrome, and till now my liver is suffering because of this.
Please don't stop it, just discuss with your hematologist. I had bad times with HU one year ago and because I reached MF high risk the hematologist put me on Jakavi the thing which made the quality of my life much much better.
Hope you get better soon.
Cheers,
Malek.
Thank you Malek for your kind reply, it is shocking what happened to you. It makes me feel a whingeing wimp and I need to buck up and be grateful but I'm so tierd. Take care ☺
Hi Bridie, just checking in again on you from yst,you did sound really down. Hope your feeling a bit brighter in yourself and feel more positive today.warmest wishes and hugs.tina.🤗
Hi, Bridie, I know how you feel. When I was first diagnosed with Jak2 positive ET 11 years ago, my platelets were over 600000. My dr put me on hydroxyurea and anagrelide. A few months later my platelets dropped to the 300s. I stopped my meds on my own and within a couple of weeks, I was rushed to the hospital. My platelets were 800000 and I had a blood clot in my spleen. So please do not stop taking your medication. Maybe your hemo can adjust it. Mine have been adjusted and changed several times over the years.
Good luck to you.
Cindy
Hi Cindy, thanks for taking the time to share that , it is the fear of something disabling happening that stops me just stopping. It's just so invisible you think why am I putting myself through this misery. I'm seeing my haemotoligist soon,I will try to be brave and discuss it. ☺
Yes, you must be honest with your hemotologist. At one time I was taking 2 hydrea 1 day and 3 the next. Two years ago I was diagnosed with polycythemia Vera and now I take jakafi 2x per day with 2 hydrea. I’m extremely fatigued but I still think it’s important to take the pills and try to lead as normal a life as possible. Take one day at a time and take care of yourself.
Regards, Cindy
Hello Bridie,
I was diagnosed with ET JAK2+ in November 2016 at the age of 60, my platelets were at around 1000. I did not have any symptoms and this diagnosis came as a surprise. I felt a bit angry at the way my diagnosis was handled, the doctor just read out the side-effects because I had to sign an agreement to take Hydroxycarbamide and that was it, I even had to ask what I was diagnosed with. Nothing else was explained and I had to go on the Internet to find about ET and that's how I got to know about MPN Voice. I started off with 2x500mg and I must say that I did feel a reduction in pressure in my head which I was not aware of before. I continued taking 2 tablets till spring of 2017 and the platelets came down to about 500. Then the side-effects started to kick in and I reduced the dose to 1x500mg without consulting a doctor. The platelets started to come up again and the doctor was not happy. I went back on taking 2x500mg but later on that year I just stopped taking them altogether. By December the platelets were up to 1000 again. The doctor gave me a good talking to. At this point I went to see my GP for a second opinion and I was referred to Guy's. I am now on a compromise, I take 9x500mg a week and my platelets hover around 600-700. I find that 2x500mg is too much, I believe this is not because of Hydroxycarbamide but because the body makes these platelets for a good reason which is not yet known, and trying to lower the platelet count too low artificially is what causes these side-effects. I believe that there is a cure for ET and I am looking for it. I don't believe it is all in the genes and nothing can be done about it other than treating the symptoms with pharmaceuticals. As for high platelet count causing strokes, I have never been shown any statistics on that and the incidence of strokes in population in general, not saying it is not true, I just have never been given the evidence.
Very interesting and it makes you wonder how,why,when etc, the medical people came to the conclusions they have
Hi Searcher56, I have the evidence you need. EVery time I go above 600, I have a TIA. when I’m down below 350 my body, energy and everything else fix themselves, including my adrenals and my spleen, which returns to a normal size. I am on 4 Anagrelid capsules/day. They tire me but not as much as before. They do tax my heart a bit. Each one of us is different, with varying susceptibilities, other complications such as Hashimoto, deep vein insufficiency, digestive issues, amalgam and who knows what else. Your theory about the body making the platelets for a reason is very interesting. For example, the Beta amyloid Plaque in the brains of many Alzheimer’s patients was seen as the culprit. It is actually there to arrest and keep bacterias that are trying to kill the brain! Once they take it away, the patient is worse off. These people had a breech of the blood brain barrier! Maybe the thrombos are sealing leaks somehow? The best way I’ve kept my energy and my mood up was to change my diet to an auto immune Paleo diet and going organic, free of GMOs and all chemicals. Also, cleaning up all the environmental toxins in my body that came from home cleaners, food, cosmetics. i now treat any cold, headache, cut, infection with natural oils, etc. I make my own shampoo, soaps and laundry detergent. I can eat them! It all works!! I’m soon getting my mouth repaired (will take a year); 11 amalgam teeth cleaned up and 5 root canals removed. I‘m trying to empty my body of all foreign susbstances that are filling my toxicity bucket. If our buckets are pretty full and we add HU, Interferon, Anagrelid and co. on top of that, the bucket pours over and we are in a toxic abyss. I believe there is a cure as well, and I am trying to get my body to the point where it will possibly heal itself! It’s worth a try and I’m enjoying the effort. Let’s hope we are both successful! Cheers! : )
Like yourself, I am detoxing with all guns blazing. I have organic, grow my own kale and spinach and make smoothies with those with spirulina, barley grass juice powder and a bunch of fresh coriander. It may take 2-3 years to really heal but I am already feeling the benefits. For example, my right hip has given me bother at least since 2008 but it is no longer bothering me. All sorts of little ailments are disappearing, ingrown toenails, leg cramps at night, I used to wash my hair every day but now I can get away every 3-4 days.
I bought myself 3kg dumbels and 2kg ankle weights and I exercise with those and then I do my yoga routine to stretch it out. Eventually I will heal, it is just trial and error.
FA-BU-LOUS! I avoid some of the greens like Kale, because they have so much Vit. K! I see that as a fertilizer for thrombocytes. I have heard from someone who drank these shakes whose thrombos skyrocketed. If you are successful, I will definitely try this. Do you take Turmeric? Etc. ?id love to know what’s helping you. Which ET do you have?
I didn't know anything about Kale being rich in VitK and raising the level of thrombocytes. I don't have much Kale, only 3 or 4 small fresh green leaves and a little fresh spinach straight from my garden. These plants grow slowly in South East England even in middle of winter.
Some people take a big amount of kale and juice it. Those are mega doses of vitamin k. You could research which foods raise thrombocytes, which lower them. : )
Hi Anag, you are indeed right when you say each one of us is different. Why for some reason are some of us symptomatic and others not? Why do some of us have strokes and other vascular problems? I have had 2 strokes,both times platelets over a thousand,i had my platelets in the high 700's and felt fine and then again in the low 200's and felt absolutely s***. I believe it's the quality of our platelets and not the quantity of them, thats the problem. I've had this discussion with one of my haemo's when 1 of my blood tests was 'red flagged' over the shape of some of my cells. Searcher56 makes a valid point about hydrea artificially reducing the platelets and side effects. Interestingly my most significant stroke in 2015, came about when i was on a high dose of hydrea and aspirin,after the stroke,the consultant stopped the aspirin and put me on what she described as a 'wonder drug', clopidogrel. What drug is right for 1 person might not suit all,ref;side effects. Let us all hope that one day a cure will be found and in the meantime people with an mpn will be taken seriously by their haematologists when being told about side effects we are suffering. Their are good haemo's who are understanding and believes that side effects exists,but their are some that dismiss the side effects of both mpn's and medications. That must be addressed! Atb,tina.🤗
Hi Tico! Not all strokes are the same. Some are caused from blood that’s to thin, others from thrombosis. JAK 2 patients are susceptible to thrombosis, those with CALR (like me) to bleeding. I just had a light stroke at 509 on Tuesday! Perhaps the Hydroxyurea and aspirin together made your blood too thin? I wish there was a machine for our home, with which we could test our blood viscosity! Then we could stop playing guessing games with our doctors as to how many thrombocytes are ok and how much aspirin is right for us! I found such a machine that was developed in Boston a few years ago, made for doctors’ offices. Why not for us? I’d like to get my hands on one. It costs about $2000. That’s 5 appointments with my private hematologist @ 30 min. If the viscosity could be kept under control with optimal adjustment, I believe we could get off the meds and concentrate on fine-tuning the threat that plagues us! This is a good question for our doctors. Regarding a cure, I am hoping my detox and autoimmune issues will be done in about 2-3 more years. I’m hoping that by cleaning up my body, my body will better be able to take care of itself. Further, stem cell therapy has taken off beautifully in the last few years. Let’s pray.
today.uconn.edu/2017/09/new...
Here’s the invention for testing blood viscosity.
I am interested in your detox program, what does it involve? You estimate it will take 2-3 years, I have been detoxing for 1 year so far and no obvious results yet other than generally feeling better. My liver enzymes were in the normal range in the last blood test as before they were not normal.
Re Detox. Also I have an inborn anemia called beta thalassemia. Red blood cells always low and small. This is getting worse with Anagrelid! First of all, avoid toxins. Almost all grains have been gene manipulated. Modern Wheat is the greatest poison. If not organic, it’s like spraying your bread with glyphosate directly. If organic, it’s still manipulated. Monsanto added pesticide to wheat’s DNA in 1997. It causes the intestines of bugs and birds to burst. We therefore all have leaky gut. Before any detox, we must all repair our guts. All detox channels must be flowing: stool, urine (hydration!), gall bladder (I don’t have one-big problem), skin and lymphatic system (bounce lightly on a mini trampoline 5-10 minutes a day), great sleep to clear out the glymphatic system (brain). The brain and liver detox between 10 and 2am. The brain loses about half its mass and fills up again the next day. I’ve gotten rid of all grains in my diet, except rice. No milk products or night schades. A bit of potato. Lots of good omega 3 fats. No GMOs, almost all organic. Some animal proteins daily. Good meats, fish, poultry. About 1 egg per day. Tons of veggies. At first well cooked, then more and more raw. 1 tbsp of the best fish oil am and pm. L-glutamine, Magnesium, zinc, vit C (4g/ day taken throughout the day), probiotics (change every month), vit d (I hade to take 20,000 IUs daily for 5 weeks to finally get my D storage to 70-optimal. Now 40000/wk- D is the immune system trainer!). Artichoke and milk thistle clean liver. Danger! Don’t take detox pills ( Chlorella/C/milk thistle, etc. too close to your ET meds, they’ll be removed from you body. I was told to take 2 anagrelid in the morning 2 at night. I spread them out. Much more effective. Anagrelid has a half life of 1.3 hours. I wait 3 hours to do detox supplements. Detox supplements are especially good before going to sleep, where the body cleans itself. I tried Chlorella and this sent me off into constipation/diarrhea. It is important if you are detoxing to make sure you are taking a binder. Anything that takes toxins and heavy metal out will cause the usual Candida and co. Overgrowth to freak out, producing ammonia and other toxins, which cause digestive and neurological issues. Candida thrives on heavy metals. At the same time, it you detox from Candida (yeast) and parasites, the metals are released, causing all kinds of problems. Therefore, a binder is needed when killing off yeast, parasites,etc. Ie. Active charcoal. Binders Also when losing weight! Fat is a storage unit for toxins!! Vit c is also a binder. I am still full of mercury from my teeth and am planning to start my proper amalgam removal in the next 2 months. 11 teeth! Detox baths are amazing. I use special bath salts (in German: Basenbad). 2-3 tbsp in a very warm bath after scrubbing myself clean in the shower. Some people brush their skin when dry. This increases circulation to the skin, making the bath more effective. I make my own soaps. 1/2 hr in tub, not more. You’ll be exhausted. Blood needs 1.5 minutes to circulate thru the whole body. The toxins are being pulled out of the blood through the skin, during the bath. The water turns greyish. Then rinse well. 2x/week. Sweating detoxes also. Shower immediately after, else they are pulled back in. No antipersperants. They contain aluminium. Cancer. I make my own cleaners and cosmetics. Meditation and removal of stressors, especially people who are a burden, from my life. Walk on moist grass or the beach (wet sand) for 1/2 hour. This will charge you up with positive electrons! Walk in the forest: Positive energy. I believe if I fix my immune system, remove all burdens possible, my body will fix itself. Laughter is important. Wow. That was a lot! Will sign off and get back to sleep. Would welcome your detox program! Especially, since we have the same issues. Cheers.
Hello Anag,
Lots of information. Most of it I already do. I follow the detox program that is laid out in the book "Medical Medium" by Anthony William. Very similar to yours. One caveat. Not everything mentioned in these detox programs is good for everyone. I was taking Alpha Lipoic Acid but then I visited a herbalist friend who did an arm strength test (kinetic testing) and I went weak on that, also I tested weak on Vitamin E. I did not know about taking HU separately from spirulina/chlorella. I will now try to take it separate from everything else. Also I have recently stopped eating high-fat foods before 1pm because the liver needs time to do its housekeeping and it can't do that if it has to start producing bile to digest the fat. Do you find your detox regime has helped your MPN? I am ET JAK2+ aged 63.
Hi Searcher 56! I’m 53, ET CALR. The bath detox was amazing. The Artichoke and Milk thistle too. The Chlorella got me stuck and I’m finding I have a genetic detox problem, called KPU. Kryptopyrrolurie. A mouthfull. that’s why medicines and toxins work double strength in me. I can’t get rid of stuff. This is because, my body clears out B6, Zinc and Mangan, when it detoxes itself. I have a kinetic testing doctor, too. They are amazing. She found the parasites and at least the B6 deficiency. I’m going in for 24 hour urine test for confirmation. I’ll then take B6,Mangan and Zinc supplements forever. As long as I was taking B complex and Zinc 2x a day, my detox was great and my thrombos were down to 250. My blood test was like a 20 year old, even my liver. I almost stopped Zinc and Bs end September and at the same time did the Chlorella and my body retaliated. I’ll be back on track in about two weeks. I think I will reduce the fat in the morning. This is a great tip. Thanks.
Hello Anag,
Where did you find this kinetic testing doctor? I assume you pay a fortune for an appointment and for the genetic testing.
There are quite a few kinetic doctors and dentists in Austria. She took €150 for a whole hour. Discussion, testing , cupping and accupunture. It was worth it. Genetic testing can be done in Germany. I’m not sure what it costs. In the US about $150-250. depending on what is done. My next construction site is getting my amalgams and root canals removed and cavitations cleaned up. That’s major and expensive. I’m thinking about flying to Mexico to have that done. Will cost 1/3 and they do beautiful and safe work.
Hi Bridie, I have done what you want to do, i.e. give up on drugs for a while....gave up Anagrelide, but only with consent of Haematologist, who said "Let's try this for 3 months"....as I was having so many side effects from it. Two months on and have felt great....drink lots of water and also take turmeric every day. But definitely would only recommend this if your medical team agree. My Haematologist was keen I continue with Clopidogrel, but also understands I need to stop every now and then, when get nosebleeds. My platelets are actually high and the medics have warned me I do carry a risk, but they seem content for me to do this because I was having such a difficult time on the drug. Feel fortunate to have a very understanding group of doctors, who take the greatest care with each individual patient. I do wish you well and hope you will find the same understanding, too. Tinkerbell
I'm pleased for you,I really am. Where I am the attitude seems to be your fine just take the pills and forget about it, but I will try to broach the subject ☺
I don’t blame you at all, however, I’d like to share my story with you if that’s alright? It somewhat answers your question.
I was diagnosed with ET Jak2 positive at 28, I’m now 34. I was somewhat ok at first, but then I started to get rather fatiged. I couldn’t seem to find an oncologist willing to treat me due to my age. In fact, I was told “you might as well get used to how you feel, you are going to have this for the rest of your life.” I can’t even really express in words how this made me feel. I was in school full time and working full time. I was doing Night Custodial at Disneyland and going to school for live entertainment and engineering so that I could move up. I told my mom about my diagnoses, and she suggested I go on Disability. No way! I had worked far too hard to get to where I already was, I felt I was too close to just give up. I finally got my dream just of a Sound Mechanic/Electronics Technician with the Engineering Department at the Disneyland Resort. I finally made it, it felt good, and I was so happy!
But then, my ET really started to act up. Sometimes I would get so weak that I couldn’t get out of bed, no matter how much I wanted to. My hands would always be cold. I was getting night sweats so bad while sleeping, that is wake up with my clothes soaked, as well as the sheets...every...single...day. Again, I was on 0 treatment at this point. Then, I began to get these horrible migraines. My job is very active, I walk several miles a night, go up stairs, ladders, operate lifts, you name it. I started to notice extreme pain in my legs and feet, but, I didn’t have a clot. Then, my feet would start to go numb, almost as if they had fallen asleep. I started to feel tired, and blah all the time. I also started to bruise extremely easily, and I’d look down at my hands and see blood. I could never really figure out how or when that happened.
I then decided to switch oncologists in 2017. She also didn’t want to give me medication due to my age. She had hoped that I could just take baby aspirin, and that would ease some of my symtoms. I tried this, but unfortunately after a few days my stomach felt like it was on fire and it was burning. Then, I began throwing up uncontrollably. At this time, I ended up moving. That oncologist became much too difficult for me to get to. So, last year I got a new oncologist. For many years I was told that the symptoms I had have absolutely nothing to do with my ET, and that it doesn’t really make you sick. People that have it live normal lives, as if nothing is wrong. I’m living proof that that is not true. I went to my primary care, had test after test, and nothing was wrong except for my spleen being swollen, and my blood results being off. My new oncologist knows a lot more about MPN’s and he told me no, this disease can make you feel very ill. He said it really depends on the person. Oh, another symptom that I had was very itchy skin.
Anyway, he suggested that I go on Hydroxyurea. I asked him for some time to think about it and he agreed. I began researching it and saw some of the long term effects, and the skin ulcers that in can cause. He had told me I would more than likely have to be on this drug for the rest of my life. I was terrified! I would constantly stay busy so I couldn’t feel how sick I was, and often times I’d try to pretend I wasn’t sick. At this moment in time, it became much more real. I decided ok fine, no treatment. I’m going to live my life the best I can and whatever happens, happens. But then, it. Got to the point where I was feeling so horrible, all I could really do is go to work (struggle there) and then go home and sleep until my next shift. My appetite was completely gone at this point. I became extremely miserable. My point with this is, these diseases can also make you sick without treatment. My life hasn’t been normal, and I haven’t felt well sense before I was diagnosed. I finally agreed to try Pegasys recently. It’s an injection that you take once per week. He told me that it’s poaaibke, with some time, I could go into remission and then hopefully feel better and live a normal life without any medication at all. I had my first injection last Saturday. The symptoms are only a little worse than what I was already feeling daily. So, it’s been a little bit of a struggle, but not quite as bad as I thought. Supposedly after your body gets used to the medication, the symptoms begin to subside, and then you feel better. I’m not sure which MPN you have, but I’d suggest researching Pegasys. If it seems like something you are willing to try, perhaps you can ask your oncologist? At least for me, and everyone is different, I felt horrible without treatment. This is an injection you take at home once per week, no more pills. Like I said first two weeks are hard but after that, you end up feeling better. I’m not sure sure, but, I’ll know here in a little over a week. Hopefully this helps at least a little. Hang in there, and I wish you the best!
Hello Tiff,
You really are having a rough time. Have you look into improving your diet and lifestyle. e live in a very toxic world, but you can do a lot to help yourself with food choices, vitamins, supplements and gentle exercise. I have since my diagnosis become very interested in health care and I read anything new in the alternative and complimentary sector and it has helped me beyond anything I thought possible. Actually I am very inspired and looking forward to future.
I actually prefer to eat healthy. Fruits and veggies, lean meats, nuts, and I limit carbs. I tried the Keto Diet. I was actually in Ketosis for awhile, but for some reason it caused my blood to go all haywire, so I had to stop. The gentle exercise? Well, I’ve always been active, and I used to run track. I unfortunately can’t run much anymore as I get too winded. My work doesn’t really allow gentle exercise though. I average about 5 to 6 miles a night, 5 nights a week, well, according to my health app on my iPhone lol. I also, like I said, have to climb stairs, ladders, all of that stuff. I also take multivitamin packs, and I’m not big on coffee or soda. I drink mostly water. I have no idea how this happened honestly
A few years ago a non-MPN friend was staying with me, she was very poorly. She had constant diarrhoea, bleeding from the bottom. She felt that she was dying. She spent her savings on alternative treatments. Eventually she contacted a medium in USA who specialises in health issues. This medium told my friend that she should not eat grains, among other things. So my friend stopped eating grains and she got a lot better. Why would one need to consult a medium for something that now seems to obvious. Why was no-one in the NHS able to tell her that. Could you or have you already consulted a functional medicine specialist or someone in the alternative and complimentary sector. Your ill health could possibly be helped with some simple remedy.
Hi searcher56, NHS advice is a well balanced diet,your body needs a good balance of all the nutriments we find in everyday food,for some we have to do that the best way we can and more importantly what we have to live on income wise. I don't think their are many who can afford to consult a medical funtional specialist or someone from the complimentary or alternative sector. If only it was that simple. Atb,tina
Yes there is a two-tier health system. I would never have considered visiting a private doctor till my mother died a couple of years ago and left me a small inheritance. I decided to use it in health care, and I visited a doctor in Harley Street in connection with my ET. It cost me £600. It did not really help but then I am quite healthy anyway so what could the doctor do for me. But like my friend who was very ill, could not work and was not in receipt of benefits, she had to sell her house and buy somewhere cheaper. She spent a small fortune on alternative treatments and that possibly saved her life. I no longer want to spend a lot of money on visiting a private therapist because I kind of feel that the cure for my ET is just round the corner. But it could be that this world has become so toxic that there is no cure and I may have to settle for symptomatic treatment.
Dear Tico, i understand. We need to change our mindset. A good balanced diet doesn’t work any more. First of all, even the whole foods we buy have lost 90% of their nutrition since the 70s. The soils are depleted from all the chemicals. We have sensitivities in this poisoned world. The prognosis is that 50% of all woman will get cancer in their lifetime and 30% of all men. 50% of all children up to the age of 10 already have some food sensitivity, allergy, autoimmune disease, etc. Alarming. I invested some money on alternative doctors but have 400 pages of notes, since last summer, from health summits and documentaries that are running non stop in internet. One doctor said that you have to become the CEOs of “Save My Ass, Inc.”. I find them right. Look up Dr. Tom O’Bryan, Dr. Mark Hyman. That’s a start. There’s a fabulous summit on The immune system playing every day right now. Take a look. You can buy it very cheaply. It will blow your mind. All free. At 53, I now feel the way I felt at 35. My blood work is amazing except for the thrombos. Have cut my intake of Anagrelid in 1/2. I still have a long way to go. I used to live in England in the late 80s, and a bit in the 90s. I could still buy goid food. A few years ago I went to the supermarkets and freaked out. Everything is ready made, ready to pop in the oven In ITS OWN BLACK PKASTIC PAN!!!! Is there no protection? Who allows this? Who buys this garbage for their children? I wouldn’t feed this stuff to a rat. We are all wondering why we are ill. We need to clean up. No doctor will tell you this. They know nothing about nutrition anywhere in the west. It’s not part of their studies. The pharmaceutical industries are stuffing their pockets with our illnesses due due out lifestyle. We must change that. It’s up to us.
Hi Anag,i really believe everybody as the right to live their life that makes them happy and content but i think the words "poisoned world " and we need to "clean up" are a bit strong. Some of us on here know just how important the pharmceutical drugs have had a big part in allivating our symptoms,others not. Don't get me wrong the pharmaceutical companies are greedy b*******s,who care only about profit margins and in the uk hold the nhs to ransom but i accept that myself and others would not be alive today without the combination of drugs we have to take daily or have needed in an emergency situation and i would certainly urge them not to stop taking prescribed medication or starting any faddy diets without consulting an health professional first. I have altered my diet drasically io the last couple of months, more of a variety of different fruits,doubling the amount of green veg i eat and more eggs milk and yoghurts. I've taken a large dose of vitimin D in the last year and do not drink. I was to start a light execise regime early march but it might have to be put on hold because of other health issues not connected to the et. I do read research papers occasionly but i refuse to let it dominate my life. I have better things to do like spending quality time with my family,helping others less fortunate than myself and enjoying my life for the present and i know one thing, i'm a lot happier for it but like i say each and everyone to their own but i would never try to make anyone feel guilty about what they eat and insinuate their illness is down to them because we didn't "clean up".Atb, tina🤗
Thanks for your honest message, Tina. My writing comes from the heart. I lived inside the medical world and I know about financial consequences as a result of illnesses. I stopped eating out and therefore have extra money for complimentary consultation and organic food. Health-wize, I hardly have friends with healthy kids. I just finished my Masters of Ed., I know what’s happening with today’s kids and why. Our meds are definitely keeping us going and meds are needed for emergencies, don’t get me wrong! I also believe that we wouldn’t be in this situation, if our environment was cleaner. I do not believe that ET is genetic. Having lived with a doctor for 6 years, I know that that’s usually what doctors say, when they don’t know. My diet was given to me by 2 specialists (both are conventional and alternative doctors). I’m under careful and loving guidance. Since my whole family went clean with the foods, cleaning products and cosmetics, (it was their decision to do what I’m doing) my now 15 yr old daughter is finally “with” us. She was light autistic, had changed 5 schools, had rheumatism since she was 2 in the legs and eyes, fibromyalgia and dermatitis and was close to suicide a year ago. after 8 months of cleansing, those are things of the past. It’s not a dream. She told me in Nov. that she’s woken up. My husband’s ailments and brain fog are also gone. We have never been so happy, so close and so full of hope. We celebrate every meal. I see other friends who are eating what the industry is producing for us, who are constantly running to psychologists, taking drugs to fight their allergies and autoimmune diseases, rather that getting rid of the phthalates, colourings, glyphosate, flavour enhancers, sugars, etc. My pain is great knowing how different their lives could be. It is not easy swimming against the current. I am really glad that you are on better foods! It’s the best thing you can do! Bravo! Yes, environmental and dietary issues dominated my life last June to November. Wanting to heal, I dug down deep into serious research. It was informative, sobering, infuriating, caused me grief and then the thought settled in. Relief came when I realized I could help myself, my family, friends and anyone who’d like to listen. There is hope. Before my diet and detox, I had a cholesterol problems for 20 years, spleen problems, enlarged and weird lymph nodes, digestive issues, distension, recurring sinus infections, terrible forgetfulness (I am genetically a prime candidate for dementia), incontinence, eczema, a fatty and disfunctional liver, and I never woke up rested. My immune system was a desaster. I had 5 colds in 2 years that only went away with antibiotics after 3 weeks. All these are gone! Also, 16 kg slowly left my body. I had completely given up on that 10 years ago. All this equals happiness and I want others to know that. Guilty? Yes. I am guilty as everyone else on the western carousel of life and I’ve faced my guilt and cried a lot about it. I had followed fads and ate what the supermarket put on the shelves. It was ever so easy. Now I know, I wouldn’t be in this mess, if I had lived differently and I will eat like this the rest of my life, because I want to lengthen my expiration date. I am really excited about my future. I’m sorry if I offended you or anyone else. I speak what I’ve learned and see openly and honestly and hope that others will be helped by what I write. I’ve seen the changes in many and I want to raise awareness. As my Univ. prof. Hematologist said to me, ET has a lot to do with our immune system, but he doesn’t know how. I want to give my body a chance to heal itself. He doesn’t have the cure, but is pleasantly surprised that I lowered my Anagrelid. Prayer is my greatest guide. I wish you great success with feeling better on your diet!! Step at a time, always taking time to enjoy every minute.
Thank you for your message and no you did not offend me and i know you do speak from the heart,we just have different beliefs which we must respect. I do agree with some have the things you say but have a more laid back attitude, i appreciate life more, i know their are certainly people out there worse off than me and i'm more fortunate than most,but more importantly i have a loving family and good friends and not forgetting my lovely cat. I wish you good wishes Anag. By the way is Austria as beautiful as the pictures i've seen? tina🤗
Austria is a dream. The mountains, lakes, traditions. But I adore England. I’ve been all over with my car. The coasts, the hills, the old castles, windmills, beautiful old homes, gardens, pubs. Love it. Friends and family are the alpha and omega of life. Yes, we are blessed. It took ET to really put things in perspective. I’m actually thankful for that! And our little dog is the cherry on our cake. : )
Dear Tiff, I feel you. Please look at my post above regarding my diet and detox. It has helped me immensely. Keto diet is too extreme. The auto immune Paleo (adjusted for me) worked wonders for me, my family and friends. I will eat this way my whole life. Also, I take CoQ10 to help my mitochondria. It brought a huge change in energy level and stamina for me. Not for my husband. He obviously doesn’t need it. I am 53, was diagnosed 1.5 years ago but have had this for 8.5 years. Old blood work proves it. I was a high powered opera singer and person, in general, jetting around the world, living the modern dream. At some point, our body gives up. We need to clean up physically and mentally. Your walking is great, even long distances. The stairs may be the problem. We should not overdo it on exercise, keep away from physical exertion, else the thrombocytes go up fast. Try Anagrelid. My doctors said, it is better for those who are younger than Hydroxyurea. Hope this helped. Cheers.
I just thought that the EMFs might be exacerbating your energy problem!
I take Pegasys for now, I just started. I haven’t taken anything else except the recommended aspirin towards the end of last year. My stomach unfortunately was unable to tolerate it. I was diagnosed 6 years ago but my oncologist back then said I was too young for treatment, and to “get used to the symptoms as I’ll have this for the rest of my life.” I got a 2nd and 3rd opinion, and now I have a much better Oncologist that has a better understanding of MPN’s. He informed me that I should have been on treatment this whole time, and I didn’t have to get as sick as I have. Not doing as many stairs? I can try....but it’s a huge part of my job. Some of the track takes place in a mountain scene, so I have quite a few hills to go up as well, some steep. I have been taking it slower though than I used to, well, I’ve been trying to. I’ll give the paleo diet a try. :). Like I said before, I prefer to eat healthy and not so much junk, my body feels a lot better that way. So, it shouldn’t be too difficult. Thanks for the advice!
Excellent. No produces foods. Cook everything. Need organization. Can you get an electro-scooter to get you around? Except for the hills and stairs?
No, unfortunately it wouldn’t be safe to use on the track. If I end up needing assistance to get around, they make you go on transitional. I’d have to work with Night Custodial and sit in a chair all night and dust. That is unfortunately the only department that I can go to that does transitional. That’s so I can still work the amount of hours that I need in order to keep my full time status and insurance. I had to use it once, when a few years ago I had injured my knee. Not only was I falling asleep, but I was miserable. If it gets too bad though, I may not have a choice. But, I really prefer working on the show effects and the Animatronics (robots) over sitting in a chair and dusting for 8 hours...lol
I thought I’d post this video Incase you are curious to see what attraction (ride) that I work on. It will give u a better idea of what I mean by track. Also, it’s fun to watch. This was my favorite ride before I began working on it
Again very interesting and how different the doctors can be, all mine say disease has no effect medication has no effects . Thank you ☺
Oh wow, you were told the treatment has no side effects? Of course it does! Omg.... Anyway, I was told the disease has no symptoms when I was first diagnosed but the treatment would make me sick, so that’s why I was placed on a “watch and wait”. Like I said, besides being a heck of a lot more tired than I should be at 28, and really bad headaches, I was ok at first. But, as years went by, I just kept getting worse and worse. For awhile I felt I even may have been misdiagnosed. But yes, this disease can make you feel like crud without treatment. I noticed a lot of people on this forum went on medication as soon as they were diagnosed. I was told “you are too young and shouldn’t even have this, we will just go on a watch and wait and monitor u”. So yeah, it seems the Dr’s can be diifferent. But, I’m also in the United States, and I noticed a lot of people on this forum are from the UK. I look up different studies constantly because I’m curious to see the new findings. I notice that we have hardly any studies in the United States, and there are a bunch of studies in the UK and elsewhere. Also, you are very welcome. I know how it can be, well, obviously lol. I figured hearing my story, as well as others, could open your eyes a bit and help you on future decisions. We are all different, but I didn’t think it could hurt.😉. I’m sorry you are having a rough time, but try to keep your head up. Smile when you wake up in the morning, because, at least you woke up. That gives you another day to experience life, and time with your loved ones. :). I’m not sure where you live, but when I get overwhelmed with things, and I start feeling down, I go to the beach (usually during a time of the day when there aren’t a lot of people), sit on the sand and just watch and listen to the waves hit the shore. Sometimes I close my eyes, which really helps. I tend to get lost in the moment, relax, and I forget about everything, just for a little while. It tends to really help me. Anyway, hang in there!
I feel really exhausted on tablets but was worse before I took them. I don’t like the idea of chemo 1000 Hydrea every day of my life. Yes I get down days and some good days. I’m mostly scared to stop medication as I don’t want them headaches back. My moods change so who knows how I will feel in the future.
I know exactly how you feel Bridie123! I have felt like throwing all my pills away and living as I used to. I am ET diagnosed,last July and put on Hydroxy but was diagnosed with breast cancer in the same month and after Lumpectomy was told to stop Hydroxy while I had Radiotherapy. Haematology said they'd contact me after this. However I just got letter of appointment in January but this isn't till 28th March! Consequently I've been off Hydroxy six months. Feeling ok and still taking Aspirin but also on Letrozole for 5 years because of breast cancer and steroids for Polymyalgia,not to mention blood pressure pills, so YES I could well do with getting rid of them all. Then I think, they must be helping keep all these diseases etc at bay, so better persevere! I'll see what Haem. Says in March but going to ask if there is some Anticoagulant I can take to prevent clots, stroke etc. Instead of Hydroxy. My platelets vary from 530 to 632 at last count recently. I hope you feel better soon and not so desperate. You know everyone on here sympathises with you and has felt the same at some point. Best wishes Fran
Again I'm shamed, you have been through so much Fran. I do hope you're younger than myself and have more youthful strength. I'm not old ( 59 ) but feel I have no strength. Take care of yourself 🤗
Hello again,
Another reason for not stopping is travel insurance. I am travelling to USA in May and if something happened whilst there and I had not been taking my medication, the insurance company may refuse to pay.
Dear Bridie, I am so glad I found your post, because that ishow I am feeling every day. I never took any meds or drugs my entire life until 2 years ago, when I was diagnosed with PV, I am taking HU and Aspirin. I even said my entire life.....if I ever get cancer, I will not do chemo and die like a zombie. And now....here I am, doing exactly that. I want to stop taking the meds and go back to who I was before, Bridie, I am just scared to end up worse with a stroke and then have to live with that. But then, we can still get strokes, even with the meds. This constant focus and concern about my blood and all the symptoms is so sad. I read that exercise will increase platelets and now....should I stop that too? The thing that I did and enjoyed all my life. It feels everything is about prevention of what will happen at one point, no matter what. To everybody. Bridie, would you share, if you stopped and how you feel, please. Thanks so much.
Hello there, I am so sorry to hear that your feeling the same, it's awful isn't it. Of course I will share how I feel if I stop. The update is I have seen my haemotoligist and told her how I was feeling and she seemed to listen. She said I could try coming off the hydroxy but the placebo effect of feeling better by not taking it might confuse matters and I am of risk of having a stroke. Like you I don't want to increase the chances of having a stroke, how could I live with burdening the family and the guilt of it's all my fault!
She offered a different drug but the list of sideaffects frightened me to death, so I decided to continue " sucking the lemon that I already have " the hydroxy. Two weeks down the line, I want to stop again! Because of the aches and pains and tingling, itching etc,etc.
I am sure exercise does not increase your platelets and it does more good than harm. Many on this site are into their exercise, don't loose it.
🏌️♀️🏊♀️⛹️♀️🏋️♂️😉
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