stopping Hydrea for 8 weeks…: Good evening from... - MPN Voice

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stopping Hydrea for 8 weeks…

Pachena profile image
36 Replies

Good evening from Queensland 🌼

Just sharing that I saw Dr Cleary, my haematologist, today. She decided to take me off Hydrea for 8 weeks to see if my symptoms subside and if the Hydrea is causing them.

I haven’t been on a high dose of Hydrea. I began in May on 500mg every 2nd day. Then the past 2 months she reduced the dose to 500mg on M/W/F.

Both times my platelets have continued to decrease which she is very happy with even tho it’s a low dose. They were not overly high to begin with, almost 700 and now 411. So not a huge worry.

I have been getting mouth ulcers, not too bad but at least one in between visits, the dermatitis on my lips has increased so I seem to be putting on Kenacomb ointment on multiple times a day. I’ve had to keep my nails short as they break and split. My digestion has really been playing up. My GP suggested I look into Fodmaps…

Dr Cleary said she could put me on an injection, I don’t recall the name, maybe pegasy…. Tho she said they try patients on Hydrea first as the injection tends to have more side effects.

Considering I’m 61 and they tend to debate the necessity of putting someone on Hydrea between 60-65, she said if it wasn’t for the 2 x TIA’s (?) I’d had, then she would just have given me aspirin alone to begin with. The TIA’s are suspected as I had two episodes a week apart when I was driving and I realised I didn’t know where I was. I could still drive but I didn’t recognise my surroundings. I had passed where I was heading to. I thought I was getting dementia. My first husband had early onset Alzheimers and when he didn’t know where he was, his testing started.

I decided to see the doc about she week later.

I’d had a fall sometime before that and really whacked the RH side of my forehead (skin off) healing with a decent indent above my right eyebrow. So my GP ordered a CT brain (showing an aggressive lytic lesion) which was then followed by a Spec scan. This showed the lesion was a dormant benign lesion. A relief. My GP told me that often TIA’s leave no sign.

My Haematologist decided to take me off Hydrea for 8 weeks to see if my symptoms die away. I’ll see her again early January 24.

We go away for 4 months Feb-May so she said if my bloods are good then she will consider if I’m ok with it to stay off medication while we are overseas and see how I go. This visit she was happy to reduce the HU further to 1x500mg on Mon and Thurs or to stop completely to see if my symptoms resolved. She was comfortable with whichever choice I made. Together we decided to go off and see if it was indeed the HU making me uncomfortable.

My red blood cells went up tho she said that just shows that I am taking Hydrea tho GP’s may incorrectly think I am deficient in Vit B12 which I am not.

A positive consultation today 😌

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Pachena
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36 Replies
Hopetohelp profile image
Hopetohelp

I am on Pegasys and it works well for me. Good luck

Pachena profile image
Pachena in reply toHopetohelp

Thank you 🌼😊

Spanelmad profile image
Spanelmad

Like you I was on a low dose 500 mg m/w/f only took 12 tablets for an allergic skin reaction to happen , mouth ulcers and stomach problems.I'm 52 and had a bilateral pulmonary embolism hence put on Hu.Been off now for two weeks and my bad cause of acne has nearly gone ,itching stopped ,mouth ulcers still winnings fatigue starting to lift.Blood test tomorrow to see where we are.

Hopefully you'll see your symptoms subside as well

P.s is you Heam an mpn specialist?

Pachena profile image
Pachena in reply toSpanelmad

Gee sorry to hear you had the embolism 😔

Thank you for sharing. It’s good to hear how you are going. Mine were niggly and I felt a bit like I should just be happy and accept them but if there is a better way for me, then I’ll try it.

No Dr Cleary isn’t an MPN specialist tho she has an interest in them.

I don’t know of any MPN specialists here in Qld.

Best wishes 🌼

ETyears profile image
ETyears in reply toPachena

I believe you are taking a risk going off the medication. You stated you have had Qty 2 TIA's. My personal opinion don't go off your medication and why not discuss this with Dr Lane the Expert!

One of the top specialists in QLD is Dr Stephen Lane a leader in the field of MPN

Dr Steven Lane | Clinical Haematologist | Icon Cancer Centre

Icon Cancer Centre

iconcancercentre.com.au

Dr Steven Lane is an experienced clinical haematologist at Icon Cancer Centre Chermside specialising in MPN.

Dr Steven Lane

MBBS(Hons), PhD, FRACP, FRCPA

P :07 3737 4500

Fax: 07 3737 4801

drslane@icon.team. email address.

Why not deal with the top specialist also head of cancer research RBWH.

Dr Lane has far more knowledge than a GP.

Dr Lane informed me what can occur not taking the medication prescribed.

You would require a referral from your GP to see Dr S. Lane

There are three other MPN specialists I could name however Dr Lane in my opinion is a leader in the field.

I note you did not mention a Bone marrow biopsy. If so what does your GP base the findings on?

I hope you can see Dr Lane asap as a 4 month trip overseas without medication is a risk bearing in mind you won't be able to obtain medical insurance with a man condition.

I wish you all the best.

Pachena profile image
Pachena in reply toETyears

Thank you for your support 😊

Sorry I didn’t mention my BMB this post as I have posted about it in the past.

My ET JAK2 positive was confirmed in May by the BMB 👌🏻

I appreciate all the information about Dr Lane. I do recall him being mentioned before tho it had slipped my mind.

I will look into him.

I don’t think my post was clear enough so I’ve gone back and edited it now 😌

Dr Cleary is my haematologist.

Since I didn’t know there was something amiss with me I guess I’ve not been so worried and don’t feel I need to be making a fuss.

I must admit in the back of my mind I did wonder if there was sound reasoning for me to travel abroad without medication … So I will think more on that.

We didn’t have any trouble getting travel insurance with my ET. My husband actually had more questions re his prostate which surprised us.

I didn’t want to go on a chemo drug but I know I need to do what is necessary to give myself the best future ahead.

Thank you again for all the info on Dr Lane 🌼

hunter5582 profile image
hunter5582

It sounds like a very good plan to stop the HU and see how you respond. Like you, I had GI issues and bad oral ulcers. I also developed a case of thrush and apparent leukoplakia (severe dyschromia of the tongue). This occurred even at low doses (500mg/every other day). Some of us simply cannot tolerate HU. That is true for any medication.

The increase in RBCs your doc referenced would likely be macrocytosis. This is a change in the size of RBCs not in their number. It is a known side effect of HU that can be used to monitor adherence to the HU regimen. HU would likely decrease the total number of RBCs, which is why it is also used to treat PV.

It is good to hear that Dr. Cleary would not automatically recommend cytoreduction for all patients your age. That demonstrates a more nuanced approach to managing MPNs, considering the individual patient profile. You history of TIAs speaks more to the need for intervention than merely being 61.

The good news is that some of us respond much better to Pegasys than HU. PEG was much more effective and far easier to tolerate than HU for me. My PLT had been cycling between 700s-900s. PLT dropped to the 400s in 8 weeks and stayed there. This was on a low dose (45mcg/weekly). My only regret is that I did not start PEG sooner. Note that I later switched to Besremi due to the FDA approval. My quality of life has improved significantly due to treatment with the interferons.

I hope you have the same success with PEG that I experienced.

Pachena profile image
Pachena in reply tohunter5582

Thank you Hunter, it good to know how you fared and proceeded.

I feel that my issues are minor but they are niggly. My digestion tho is something I’m quite aware of in the day and night. I have always had some sort of nuisance with it since I was a child tho it went up on steroids since May when I started HU. I thought it was the juicing that I had begun although it persisted even when I wasn’t able to juice.

This year has been very busy with elderly parents, lots of travelling, away from home and not being able to prepare meals as I would wish. I have a wheat allergy so eating out can be quite limiting. Even doing the Fodmap will be difficult. Need to do it for 8 weeks and I won’t have 8 weeks solid home till June 24.

Sadly my father passed away on the 18th 🥹 so my life will slow down a bit there.

As my doc said the brain gut link is not quite understood yet but they know it is strongly linked and I’m thinking our busy lifestyle is also part of the problem.

Thank you for your support 😃

hunter5582 profile image
hunter5582 in reply toPachena

Sorry to hear about your Father passing away. Condolences to you and your family. My Mother passed in February 2022 after a long struggle with dementia. It required a lot of travel and time ways from home to provide her care. It can be a very big challenge to take care of ourselves in this siltation, but it is essential. It is like when we are told to first put on our own masks when they are needed on an airplane. We can't take care of others when we are falling apart.

The fodmap diet can be a challenge when travelling, but it is doable. It requires careful planning. My brother is an expert at it by necessity. He also has a significant gluten and lactose intolerance. Fortunately, I just had to switch to a more plant-rich diet, mostly Mediterranean type diet, to manage my issues.

The brain-gut link is quite powerful. I have attended several trainings on the topic of "The Gut Brain." The short version is that the GI system and the brain are connected in two ways, via the Vagus Nerve and biochemically. The Vagus Nerve provides two-way communication between the brain and the gut. Inflammation in the gut releases cytokines, cortisol and catecholamines that sll affect the brain. Stress causes GI inflammation and GI inflammation causes stress, anxiety, depressions, insomnia and more. The connection is quite powerful and one can get caught up in a viscous destructive cycle. This happened to me back in 2013 which is also when my ET progressed to PV. Not, I think, a coincidence. It took me some time and effort to sort it out but I was able to break the cycle and recover. The main thing I learned was how critical it is to effectively manage stress while maintaining a healthy diet tailored to my specific needs.

Wishing you all the best as you move forward.

Smoothie2020 profile image
Smoothie2020 in reply tohunter5582

I need to check into that brain/gut link. I’m struggling with stomach issues and I have anxiety about falling asleep because I wake up with heartburn. But when I have allergies and take a medication that causes drowsiness, I have the best sleep. No anxiety and no heartburn. Is it all in my head????

hunter5582 profile image
hunter5582 in reply toSmoothie2020

It is in both your head and your gut. Our bodies are integrated systems. The gut and the brain are very strongly connected to each other biochemically and neurologically. Anxiety can cause GI issues. GI issues can cause anxiety and insomnia. You have to deal with both your head and your gut to break out of the gut-brain axis cycle.

If you would like to learn more, just Google Gut Brain Axis. There is good information on the topic. I have attended professional trainings on this topic that were very informative. If you can find either a patient or professional training to attend it will be very informative. Note that Integrative or Functional medicine doctors are usually very tuned into this kind of issue. A professional consultation can be very helpful.

There are very effective techniques for managing both heartburn and anxiety/insomnia. It is essential to address both as they are related issues.

All the best.

Pachena profile image
Pachena in reply tohunter5582

Thank you Hunter for your condolences. I can understand how difficult it would have been with your mother. I’m sorry to hear of your struggle 😔

My cousin went through the same with her mother and it’s a heart wrenching disease let alone the care needed etc.

Our hearts are very heavy. It is a comfort that Dad is at rest. I could see he was just quietly, patiently biding his time here. He was 92 and was quite the miracle man. He’s in the medical books in a couple of places where he lived when he shouldn’t have. We lost track of the amount of times we were told Dad couldn’t survive yet he did again and again. Bouncing back, it was hard to believe he would eventually succumb tho we knew it had to happen some time.

His mind was as bright as ever but his mobility decreased with each added illness. His body eventually giving up.

His 96 year old brother giving up on life and refusing to eat and drink and passing away 7 weeks before Dad 😔

It’s been a tough year and I do feel a bit fragile so I can see why the brain/gut link would be playing a part in things.

My GP said that tests were done on the effectiveness of FODMAPS. She said that the FODMAP diet worked for 70% of people tho more interestingly she said that 70% of people got the same relief from hypnosis alone without altering their diet. That got me thinking once you explained above. My GP in a previous visit asked if I had heard of Tapping. It could possibly help with my insomnia… When I looked into it, it helps with loads of things including stress. So I’m now thinking I will give it a concerted effort to see if I can control my stress, sleep, digestion etc with this simple practice 😊

When we travel, my husband wants to eat out twice a day. Something that may thrill most people tho I have a wheat allergy and carry 2 epipens so it’s a matter of scanning the menu to see what options there are for me 🤔 I shouldn’t complain tho it does wear me down over time.

Thank you for your encouragement 🌼😃

hunter5582 profile image
hunter5582 in reply toPachena

it is a comfort when those we love no longer have to suffer. With dementia, we often lose the person we love long before they pass from this world. The worst part of the disease is to see it destroy the person before their body is relieved of the misery they live in. It is a comfort for us to know that my Mother is free of the pain and burden that life had become. I know that she is now in a better place, but we do miss her greatly.

I strongly favor, based on personal and professional experience, dealing with both parts of the gut-brain axis at the same time. We have to deal directly with the gut issues based on what the cause of the symptom is. Diet modification is clearly indicated in many cases. Medications are also needed for some causes. Stress and insomnia also both need direct intervention. There are very effective ways to manage stress and improve sleep. Tapping is one of them. I have seen it work quite well for some people. I use Qigong meditation techniques, including the Six Healing Sounds and several other forms (e.g., Tai Chi). These techniques can have additional health benefits as well.

Wishing you and your family all the best.

Pachena profile image
Pachena in reply tohunter5582

I so appreciate all you share, Hunter tho it will take me awhile to soak it in.

Dementia certainly touches us all in some way 😔 🥺

Thank you for explaining the differences in the medications. I will look them up so I can be more informed next time I see the specialist.

I have tried Qui Gong before and really enjoyed it. It looks so gentle yet the first time I did it, the next day I was a bit sore which surprised me.

I do yoga at least 3 times a week tho I need to really get into a daily discipline with these practises to make them a concrete lifestyle to get the most benefit. I’m going to start a food diary too to see if I can find any patterns.

I hadn’t heard of the Six Healing Sounds tho I have heard in yoga, the Ooommm is a healing sound.

Best wishes and much thanks 🌼

hunter5582 profile image
hunter5582 in reply toPachena

There are different variation of the Six healing Sounds. the form can be done standing or sitting. I do it sitting right before bedtime. Here is on variation that is pretty well known.

youtube.com/watch?v=_yMHHhx...

Anag profile image
Anag in reply toPachena

Just read this post. I answered you earlier today.

Very sorry about your father’s passing. I remember 2014-2015 how difficult it was leading up to my father’s passing and being absolutely exhausted afterwards. A while later I started putting my life back on track, I started exercising again and taking care of myself. It was nice to breeze again. I am very happy that I took the time to take care of him.It was so important.

My whole family has problems with wheat, and we have cut out all the grains except some rice. I think the FODMAP diet is for Sibo. When I thought I had Seebo, I went on a five day water fast in order to allow my whole digestive system an absolute break. It was one of the best things I’ve ever done for my body. Since I’m on the Paleo diet, I didn’t feel any hunger pangs at all because my body just started to burn my fat instead of the fat I was used to eating. The fifth day I was really weak and after starting to eat on the sixth day, I started to get a surge of energy like I haven’t felt in years. During this fast, the body starts to burn off all cells and old auto immune cells that are still ghosting around. After helping killer cold 30 years ago. It’s really amazing. The energy kept for a couple of months. I did the same fasting six months later and again it was wonderful for my body. It’s worth a try. Important is to do this at a time where you are not very busy and don’t have to cook for other people.

🙂

Pachena profile image
Pachena in reply toAnag

Thank you Anag for your thoughtfulness to share with me.

It’s been a hectic time so I’m just reading through all the posts now as we start a 12hr drive up to the Whitsundays for our annual early family Christmas with our children/grandchildren up there.

I have heard and read about the benefits of fasting and I used to do the 16/8 using low carb principles. Tho now with the ET, I’ve begun eating earlier with more of a Mediterranean focus and ending with an early dinner with nothing after 5.30/6pm.

I’m part of a Menopause Transformation group. It’s by a Doctor who studies healthy aging in women during the peri menopause and post menopause times. It’s been so interesting.

Through it I’ve heard of Professor Longo and his Fasting Mimicking Diet. I bought his book and for people with cancer he recommends doing the 5 day FMD monthly. It has been shown to help people on chemotherapy.

But as much as I’ve wanted to do it, I’ve felt so overloaded of late that I couldn’t add in anything more.

This discussion on here has reminded me that I do think to spend some time on myself. The benefits will be so worth it.

Pachena profile image
Pachena in reply tohunter5582

Thank you, Hunter 😃

It’s good to hear of how others tolerate their treatments and you are also so good at explaining the books and cranny’s of things 👌🏻

My symptoms are mild when I compare them to yours. Goodness you went through the mill 🥺

I need to look up Pegasys and the side effects with it. I’m not sure if it’s a chemo drug or not as well? Are all the treatments chemo therapies in order to decrease the platelets?

hunter5582 profile image
hunter5582 in reply toPachena

Pegasys is not chemotherapy. It is an immune modulating therapy. It is a pegylated form of interferon, which is a naturally occuring substance in the body. The mechanism of action is quite different from HU, shough they both have cytoreductive effects. The cautions/contraindications are different as are some of the potential adverse effects. The interferons also differ in that they are considered potentially disease modifying.

Like all of our medication choices, Pegasys has its own risk/benefit profile. We each respond differently to it. I have a strong preference for the interferons over HU based both on my own experience with each medication and more theoretical/philosophical considerations in regards to my treatment. You should definitely educate yourself about this choice.

Note that there is also another option in fairly common use for ET, Anagrelide. This is a medication disrupts postmitotic phase of megakaryocyte development, reducing platelet count. While many docs would recommend Pegasys before Anagrelide, it is worth knowing all of your options.

Wishing you all the best. Happy travels.

Mishie14 profile image
Mishie14

Hello, Pachena. Wishing your side effects subside though be patient as it may take a while. I reacted the same to taking Hydroxyurea as first drug response to ET JAK2+--500 mg per day. It significantly messed up my quality of life such that I told the doctor I had to stop after 5 months. It also had caused AST and ALT liver enzymes to get 3X and 4x normal in just 4 months which the doctor was also very concerned about and referred me to a liver specialist to rule out non-drug cause. I had no ET symptoms before taking any drugs so was feeling frustrated that the treatment was extreme compared to the disorder. It took 3 months off hydroxy before I was feeling normal again though along the way I had a bone marrow biopsy that to this day a year later I still have occasional hip pain when standing up, sitting down and twisting. Platelets went up to 1.3M while off hydroxy.

I tried anagrelide next which was fine until doctor increased the dose by 2X to speed up platelet reduction. That increase caused heart palpitations and skipped beat side effects. These were known but frankly a surprise as I had never had cardio issues nor is there any in my family. Off anagrelide and cardio effects went away.

I have been on low dose peginterferon injections since March. Started at 45 bi-weekly, then 45 weekly, then 67 weekly for last 2 months. Platelets are slowly coming down and only one side effect was an inflamed spot on shin. Dermatologist prescribed creme with steroids that helped reduce inflammation and redness. I like peginterferon. I am fine with taking things slow with the drug and I am fine with occasional hip pain. The shots are a non-event

I am in a much better place today than I was a year plus ago when this adventure started. I wish the same for you. Don't be afraid to speak up. Stay safe!

Lasbrisas1 profile image
Lasbrisas1 in reply toMishie14

Try Cayenne Pepper, it brought my Platelets down from 765 to 242.....I just sprinkle it on my Brunch , I do Intermittent fasting eat once aday....Good Luck ❤

Pachena profile image
Pachena in reply toMishie14

Thank you, Mishie14

Like you, I too didn’t realise I had a problem and my numbers weren’t too high so other than the TIA’s there didn’t seem to be any urgency.

My Haematologist said if it wasn’t for the TIA’s, normally they would just prescribe Aspirin alone till 65 and after.

Thank you for sharing your experience and I really feel for you. What a roller coaster to suddenly find yourself on 😆

My SIL (42) who amazingly also has ET still has niggly reminders in her hip from her BMB. I was fortunate to breeze through it, a blessing.

It appears from all the comments on here that Pegasys is the way forward. It helps relieve the fear of trying something different.

Thank you and best wishes 🌼

Phantasia profile image
Phantasia

Hi Pachena,

I am in Tasmania.

I am 62yrs old and was on Hydrea from August '21 to March '22. I was on 500mg daily which was then increased to 1000mg twice weekly while I remained on 500mg on the other 5 days.

Unfortunately my platelets barely decreased and I developed peripheral neuropathy in my feet and lower legs so I was taken off the Hydrea. I am back on aspirin only.

I have no thrombosis history and am JAK2 negative so my haematologist is happy to keep me on just the aspirin for now.

Another reason Australian haematologists prescribe Hydrea first is the cost. It's cheaper than Pegasys and as the PBS is picking up most of the tab they probably prefer to reserve Pegasys for younger patients or for those who are resistant to treatment.

If you do start Pegasys let us know how you go.

Good luck.

Pachena profile image
Pachena in reply toPhantasia

Thank you Phantasia, how is it down there in the cold country 🌼

It’s good to hear you are doing well now and your feet are no longer a problem. That would have been a trial 😔

I didn’t realise till the comments on here about the cost of HU that it was likely the first to be scripted. Interesting 🧐

Thank you, I’ll see how I go in January and update what is happening then 👌🏻

Phantasia profile image
Phantasia in reply toPachena

The weather is starting to warm up. Even had some thunderstorms which is unusual here. I live an hours drive south of Hobart so am almost at the bottom of Australia.

You may not be aware but there was a treatment protocol change in Australia in September 2021.

I was put on Hydrea simply because I'd turned 60 and under the previous protocol became high risk based on age. Now they factor in whether or not you're JAK2 positive, (which I'm not) previous thrombosis history and other risk factors for cardiac and stroke events.

I was downgraded from high risk to intermediate based on being over 60. My age is my only risk factor.

You're situation is different. You have three risk factors. Age, previous TIA events and you're JAK2 positive. I think most haematologists, whether or not they specialise in MPNs would prescribe cytoreductive therapy.

We're all different and respond to medications in different ways. Most people seem to tolerate Hydrea well. I turned out to not be in that category. It wasn't working for me anyway so there was little point in continuing with a non-effective med that was causing me to suffer. The peripheral neuropathy plagued me for months after I stopped taking it.

I hope you can sort out a treatment plan that works well for you.

Take care and best wishes.

MPNBlog profile image
MPNBlog

Hi there Pachena. I am Australian (Sydney). I endorse the post from 'ETyears'. "No Dr Cleary isn’t an MPN specialist tho she has an interest in them" is a red flag to me. Dr Steven Lane is one of Australia's top experts in MPNs. He's a researcher (and has had several MPNAA grants) but also sees patients on limited days. You can see him thru the Berghoffer centre in Brisbane (for free), but you might see him more quickly if you go thru the private Icon centre seeing as you are going to travel soon. I have never heard of your doctor, and I don't think they are an MPN expert. From your description you need more expert advice, especially because you will be travelling soon. Flights from Australia are long. I had to self inject with Clexane both ways to keep the blood thin - easy to do, so no problem, just a bit of messing around. I'm not a medical person, but having had x2 TIAs you aren't being properly managed. I agree that in Australia they go for the cheapest option first! Hydrea is quite inexpensive and it's sounding like it may not be the best option for you. Pegasys costs $699AUD to the PBS for a pack of 4 syringes (you only pay $29AUD on the PBS)! I personally wouldn't go overseas for 4 months without better information/advice. I encourage you to look further afield now - it's your health. (MPNAA is an Australian MPN group - google it - and I have found them extremely helpful). Best wishes and enjoy your trip.

Pachena profile image
Pachena in reply toMPNBlog

Thank you MPNBlog for all that info 😃

I had no idea that Pegasys was so diff in price to HU 😯

I will look into Dr Lane and consider making changes ahead 👌🏻

The long flights have played on my mind, I must admit. My GP told me to get a calf massager to use during previous flights to prevent the possibility of DVTs tho I haven’t managed yet to find and buy one.

Thank you for mentioning MPNAA. I have joined the group tho haven’t spent time in there really yet. I will endeavour to do so 👍🏻

Best wishes and thanks 😃

Exeter21 profile image
Exeter21

I was on Hydroxy very bad reactions especially gastric. Off it for 3 months then onto Peg Interferon. I really detest Drs who tell you it has bad side effects. It doesn’t . The doseage a Dr prescribes is the problem as they are not knowledgeable in it. Thankfully I contacted an MPN expert as I had been put on weekly Peg Interferon & felt exhausted.

She immediately changed my dose to 30 monthly for body to get used to it . It has been marvellous I am on 45 monthly only now & platelets within range & feel very fit . Do not be put off by Drs comments as I received similar response.

However HU is cheap & Interferon more expensive & as far as I am concerned that is the reason .

Some people cope on HU but if your body is telling you it doesn’t like it then time to try Interferon . If you have an MPN specialist in your country get an email to them to oversee your treatment. Julia UK.

Pachena profile image
Pachena in reply toExeter21

Thank you Julia and it is interesting to hear your journey 😯

I will look further into it and make contact with Dr Lane, an MPN specialist locally here.

Thanks for taking the time to write to me.

Anag profile image
Anag

Hello Pachena,

since I was having heart problems with Anagrelide, I was put on hydroxyurea 500 mg per day and within two days I was having neurological side effects, which included not being able to coordinate my hands, having trouble making breakfast, bumping into things, not remembering anything. The information said to stop immediately if they are strong neurological symptoms so I did. I am mediately cleaned out the HU from my body by detoxing.

I remember reading that the pills are cut ostatic should never be handled with their hands, and therefore I believe they should never touch any part of the body! Even the shell of the capsule has HU in it because it’s porous. The longer the pill stays in your mouth before you swallow it, the more likely it is that you develop problems with the mucous membranes and lips in your mouth. One patient on the forum gave the advice to another patient who cannot swallow big pills to just open the capsule, put the powder in the water and drink it down!!! I was absolutely shocked at this advice! I don’t understand why your doctor is choosing eight weeks to see if the symptoms go away?

“In adult cancer patients, hydroxyurea was eliminated with a half-life of approximately 2-3 hours”. This means that the medication has been cleared from the body within six hours more or less.

I have had 6 TIAs by the time I was 54 and now I am 58, right at your heels. 🙂. Not being able to handle either and Anagrelid or HU my new doctor and MPN specialist got special permission here in Austria and got me onto besRemi which is the newer form of interferon. Pegasus is the predecessor of Besremi and both work quite well. The most important thing to be able to reduce all side effects is to eat a very clean and healthy diet. I have been on the autoimmune Paleo diet for six years since my diagnosis. It has made a huge difference in my life. Haven’t gotten rid of all my allergies, depression eczema incontinence, histamine intolerance, cataracts, glaucoma, 25 kg. And more. At the same time I have been eating almost all organic and don’t allow any chemicals into my house or onto my skin. My lifelong I have been sick with my lungs with endless bronchitis, three bouts of serious pneumonia, endless nasal infections, and nevertheless since six years I’ve only had two colds, and one Covid infection although my whole family is coughing and sneezing in my face when they are sick. Although I have Hashimoto thyroiditis, I have been able to reduce my medication for that by half and my immune system is strong enough to deal with the Besremi or the Pegasus if I have to take it.

I also try to keep my body replenished with optimal amount of B, vitamins, vitamin D, vitamin a vitamin K2, magnesium, selenium, iodine, CoQ10. I have regular blood tests to check all these.

every single medication on the market causes nutrient deficiencies!!! Check Internet, and find which deficiencies are caused by whatever you’re taking and then replenish whatever is missing in your body. All this should have a great effect on your quality of life, which is so important for MPN patients! 😃. All the best to you. Anag

Pachena profile image
Pachena in reply toAnag

Thank you Anag for so much information and advice.

It’s SO very encouraging to read of your results by changing your lifestyle 🤩

Thank you for both messages you have posted.

I feel very blessed to be a part of this supportive group 😊

Anag profile image
Anag in reply toPachena

😊

Doxy46 profile image
Doxy46

"The TIA’s are suspected as I had two episodes a week apart when I was driving and I realised I didn’t know where I was. I could still drive but I didn’t recognise my surroundings. I had passed where I was heading to. I thought I was getting dementia. "

OMG, you are the first person I have found who also has this symptom. I have had this several times over the past year. I am going to start a separate post about this. I hope you will share your experience there.

Pachena profile image
Pachena in reply toDoxy46

Wow, Doxy, it feels good to know I’m not alone there. I had a similar experience in bed one night. The exact same feeling tho I wondered if maybe I was dreaming about past experiences.

I told the haematologist and she said that night ones can be hard to take serious due to the timing and being in bed. However if I experienced it again, in bed or in the car to head directly to A&E or better yet get someone to take me there.

I look forward to your post.

luvinretirement profile image
luvinretirement

Apologies for the late response, and it may or may not be relevant, but I was doing fine on Hydrea until I started having diffused body pain that was quite irritating. I have many different tests/scans to diagnose the "why", and after nothing resealed itself, my doctor and I agreed to stop the Hydrea to see if it was the cause. Sure enough, that was the problem as the pain went away within 30 days. I went to a new drug and while i have dealt with other minor issues, the pain never manifested itself. The point is that some of us just don't react well to Hydrea. Good luck, and sorry to hear about your father.

Pachena profile image
Pachena in reply toluvinretirement

Thank you so much for your reply and support 🌸

I can say I Alan feeling normal again and what a relief that is. I was wondering if I was just a sook with all the little things bothering me but it really was interfering with my days 😆

It’s lovely to be free from it since I stopped 🤗

So it’s good to know now I was reacting to Hydrea 👌🏻

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