Hi. My name is Ian and I was diagnosed with ET in 2004. Until September 2018 my treatment was limited to 6 monthly hospital check ups and daily Aspirin, but the condition had virtually no impact on my way of life overall.
Following my 60th birthday last year, I changed hospitals and my new Consultant informed me that I was JAK2 positive and not JAK2 negative as originally diagnosed. I was advised by my new Consultant that, due to my age, my treatment should be changed and after some thought I agreed to commence taking Hydroxycarbamide in addition to the Aspirin.
Six months later I am taking 1,000mg Hydroxycarbamide a day and my platelet count is nearly down to normal limits, without any of the potentially serious side effects. However, I have become mentally tired and easily distracted, which has affected my ability to perform my work and pursue my outside interests, especially dancing. I am self employed and now able to work just 60% of what I did before commencing the new medication and have become really anxious at times, dwelling on the worst case scenarios of events and situations, in both my work and personal life.
I am lucky that in addition to an approachable Consultant I have a really supportive partner in Joy, who tries to her best to help me through these periods of anxiety.
I was wondering whether any fellow sufferers of ET had similar experiences with tiredness and anxiety after commencing Hydroxycarbamide and if so what coping mechanisms they found useful?
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isimmy
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I started Hydroxycarbomide six years ago and also started with the same anxiety as you. Always worse case scenario - not really about me but just anything and everything! I am definitely not depressed and live quite a stress free life (mostly 😊) but the anxiety was ridiculous. Usually as soon as I switched off ie bedtime !
My GP put me on a course of antidepressants which made no difference whatsoever. So after ten months of trying I weaned myself off them. Five years later (a few months ago) a new GP put me on stronger antidepressants but my jaw was so painful with them and at night I would bite my tongue (sometimes quite badly) - so again I had to come off them. I have to assume they made me clench my teeth in my sleep.
So here I am, still anxious at times but at least I have a tongue in one piece and something my GP suggested is actually having an effect. As soon as your mind wanders to thinking anxious thoughts say a little something over and over again to yourself. Anything you like but short and sweet and the same thing! It’s a case of re-educating your mind to think different things instead if anxious thoughts.
I too was same as Lesley,still have anxiety about everything and nothing!Think it is part and parcel of an M P N,,I am taking a mild anti depressant at the moment,seems to help.Think we have to come to terms with the fact that we get the fatigue ,must work around it,rest when we are really tired...so hard to get used to esp if self employed and have the worries of that. You will adjust to H U and feel more yourself....been on it now for 8years,manage my work on good days,walk with dogs for exercise,some days are not so good,the main thing is not to overdue things on the better days just makes the next day a fatigue one!!! Wish you the best and Bon Courage.xx Sally
I have ET(Jak2+) and am on aspirin and hydrea too.
This is just a thought! Is it possible that the anxiety is related to the ‘step up’ in treatment rather than the hydrea?
As you say, your condition has had minimal impact on your life for years, which is great. This new development however will undoubtedly have had some impact on you. Just addressing change in our condition can create negative thoughts which may then ruminate creating anxiety. Many people with ET also suffer from fatigue which in combination with anxiety affects concentration/performance etc.
I would definitely have a chat with your GP. He/she will be able to determine if hydrea is/isn’t the likely cause of your anxiety. You may need a short term course of antidepressants. I have taken them short term in the past for anxiety. They do work!
I am hoping that I am now at the correct dosage of hydrea that I will need going forwards.
I think that my inability to work as I used to and the obvious knock on effect that this has, along with not knowing how I will be from day to day certainly doesn't help with the anxiety.
I have another appointment with my Consultant in a couple of weeks so will discuss things with him, take on board the suggestions that I have had in the replies to my posting and if things do not improve will speak to my GP.
Hello Ian, a handy little tip was taught many years ago at the start of my PV journey (now MF on Rux), was to take the time to acknowledge what I'm feeling and what it's about then choose to release it with a big breath and intention. So I'd say: I acknowledge feeling ..... about ..... and I choose to release this feeling (big breath in, then shout) RIGHT NOW! Then have a little think to see what came up next, then do the same again until you feel you've got rid of the original negative feeling. It only takes minutes really but it has saved my sanity many times, and of course, it saves you from having all those negative thoughts come tap you on the shoulder when you're settling down to sleep! Good luck and I hope this helps, Christine
Thanks for the reply. I am going to try out the suggestions that I have had in reply to my post to see which are the most suitable and appropriate for me. It's great to be able to read the replies and know that we are not alone in how we feel.
Hello Ian, and welcome to MPN Voice, where a lot of us have been through the same feelings that you are experiencing at this moment in time, I have ET JAK2 Posative and have been on mg of 3,500 Hydroxy, Aspirin and numerous other tablets a week, this has been for five years now, and my platelets also have been normal for the last couple of years, maybe the high dose you take could be a factor in how you are feeling with anxiety it took me quite a few months before I could honestly say that I had come to terms with having to take this drug, also found that when I was on Statins this made me feel even worse, so had to come off them, and things started to improve for me, plus I started to do mindfulness which when I do on going to sleep 😴 really helps, you can get a book and cd called mindfulness for dummies !! Well worth a read, listen to the cd at bedtime, also spray my bedroom with Wax Lyricals, silent night spray (lavender and chamomile) can also get reed diffusers in it. As for the fatigue I seem not to suffer like I used too which is great.
Another thing for me is that I re-evaluated my life by improving my diet with lots more fresh fruit and vegetables, nuts at least 2oz a day, drinking at least 2ltrs of water in a twenty four hour period, hated it at first but now enjoy, mind you I am forever having to go to the loo 🤗 but my skin has really improved, I also do a twenty to thirty minute work out first thing in the morning some of it being yoga which is another way of letting go, but it sets me up for the day and last but not least plenty of fresh air, even if it’s gardening or going for walks, or in my case running around after grandchildren, I will be 69 this year, and I am proud to say that I do not feel it. Also still enjoy the occasional glass of wine.
I will not let my ET define me. I live with it and intend to do so for many years to come god willing. Talk to us when you feel low we are all here for each other as we all row the same boat 🚣♀️ into that big wide ocean of life and none of us have sunk yet.
Thanks for all the suggestions, which I will take on board along with those on the other replies that I have had. I have also changed my diet and drink far more water than I used too.
I have been fortunate in that I have not suffered with any other side effects from Hydroxy and, other than the Aspirin, do not take any other medication.
Like you I do not want to let my ET define me and a couple of weeks ago made a conscious decision to get back to my dancing no matter how anxious and mentally tired I feel.
Sorry for the incomplete reply earlier. What I was going to say was that I too had awful anxiety symptoms when I took hydroxyurea, and had to come off it for that reason. I posted about it at the time.
There are two issues here.
1. Is the anxiety caused by, or made much worse by, the hydroxy. Lots of drugs can cause mental symptoms: steroids, for example, are notorious for causing depression in some people ( but not everyone). So it wouldn ‘t be surprising if hydroxy caused anxiety in some of its users.
2. Is the anxiety nothing to do with the hydroxy, but is just due to the recognition that taking hydroxy makes you very aware that you have a serious health condition.
Then, whatver the cause of the anxiety, what can you do about it.
For me, I had to stop the hydroxy. I also see a health psychologist from tme to time which gives me a chance to talk through any general life issues that are troubling me. None of which cause the crippling anxiety that the hydroxy did. Just everday unhappiness.
Hope this helps.
PS if you are part of the Guys system then the Dimbleby centre behind the new cancer buildng offers free , no referral needed sessions with a psychologist. You do need to make an appointment.
It was just after I started on the hydroxy that I began to notice the tiredness and the restrictions placed on my ability to work and also on my social life.
I think that the changes to how I am able to operate have had a knock on effect with regards to the anxiety. The fact that I am self employed and unable to work full time, or even know from day to day how many hours I can work, is obviously a concern because of the ongoing implications that this can have.
I am learning to accept the restrictions and now need to develop a coping mechanism to deal with the anxiety. I have received a number of suggestions in the above posts that I am most grateful for and which I will go through to see which is the most appropriate for me.
The genuine and knowledgeable support from people who have the same, or similar, experiences and in some cases far more severe conditions cannot be underestimated.
Absolutely. I have been on treatment for 3 months and the best thing to do is keep busy. Tiredness comes and goes but seems to be a little less often now and anxiety comes and goes also. Just keep busy and know that this drug is actually saving your life. Also drink lots of water. I drink at least 8 cups per day
It has taken me quite some time to come to terms with the change to my treatment, due to me reaching 60, and the tiredness and anxiety that I have had following the commencement of Hydroxy. Previously the condition had had no impact on my life for nearly 14 years, other than hospital check ups and remembering to take the daily aspirin.
Since starting the Hydroxy I have certainly started to look at my diet and the importance of keeping hydrated.
I am more than convinced it is the hydroxy that is affecting our tiredness and lethargy, also along with this I have developed a really bad cough which has been going on for years. I have a consultation at the Brompton Hospital next week. On looking at the side effects of this drug I am horrified at that it states it may cause leg ulcers especially as I have one on my ankle. I have been treated for over 25 years now and it these side effects are making me quite depressed.
Sorry to hear about your leg ulcer. Hopefully something can be done when you are at hospital next week.
Before commencing treatment my Consultant gave me some literature on the drug and myself and my partner spent some considerable time trawling the internet reading about Hydroxy and the possible side effects, which we then discussed with the Consultant.
I think going onto the drug has been a major turning point in how I view and live my life and I am a little nervous when I feel slightly off colour, or have a minor health issue, as to whether or not it is a result of taking Hydroxy.
The best thing to manage anxiety and at same time kill some mutated gene, Clean Up Your System from toxins from meds and many overall problems it's cannabis oil! Only one problem with it, have to find the right one and go slowly to adjust dosing! After your tolerance get adjusted you'll be fine doing anything with no high effects. Very Big Chance thet your other counts gats in normal range. If you interested i can explain in details!
I appreciate you getting back to me. Thanks for your comments.
My bloods are now nearly in normal range. Not quite sure I understand. What is this cannabis oil and how might it help with fatigue, concentration and anxiety.
Thanks for your comments. I was originally diagnosed in 2004 and basically lived a normal life until last September when I was advised to commence Hydroxy.
I was initially reluctant to commence the treatment, but like you I enjoy my holidays and was told by the Consultant that unless my platelet count was reduced he could say that it was safe for me to fly long haul. However, once the platelet count started to come down he was happy for me to fly providing I was sensible during the flights, avoiding alcohol, plenty of water and regular walks around the plane.
The change of treatment and the resulting side effects have been a real life changer, especially the restrictions on my ability to work but I have recently got back into my dancing hobby. Just need to conquer the anxiety now.
Hi Isimmy, I’ve really found your post interesting. My platelet count and medical history placed me high risk and went on hydroxicarbomide straight away and my symptoms improved. Because of that I couldn’t say if it’s hydroxicarbomide or ET that induces anxiety and fatigue.
This last 12months I’ve slowly had to increase my dose and decrease my tasks. Your post has made me question the link of increased fatigue to hydroxicarbomide.
Until I started on Hydroxycarbamide, I was diagnosed with ET in 2004, I lived a very normal and active life, so I put the tiredness down to the drug. However the tiredness and knock on effects that this has had on my life could well be the key factor in the anxiety.
Before posting I had accepted the limitations placed on my ability to work and started to get back to the hobbies that I enjoyed previously. The anxiety remains, but hopefully the acceptance of the situation and some of the kind comments and coping methods suggested by fellow sufferers will, over time, help me to control the anxiety.
Thank you isimmy. Been feeling rough for last 4 weeks because of surgery. A repeat Procedure under local anaesthetic tomorrow is going to result in further drop in My hb reading and well being.
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