Hydroxycarbamide:
Can anyone advise me I have been taking Hydroxycarbamide now for 2 week,
I haven’t had any major side affects however find myself feeling stressed. Everything just feels an issue, I am bad tempered and get angry for stupid little things, this is so out of character for me. Can this be the Hydroxycarbamide .?
Has anyone experienced this.
Yvonne
Hello YBSx, I am sorry to see you are in a turmoil over HYRDOXY to be honest in my own case I too was frightened when first put on this drug. That was about 5/6 years ago and I have never had any problems with it, so I was wondering is your anxiety due to the thought process of actually having to take the Chemo drug. I know I felt the same when I started . But in my case no side affects as far as I know, sometimes I say to my self 'oh sod it not taking it tonight'. BUT the next dose come up and I am throwing it down my throat. So keep calm and carry on if that could be the reason , or better still next appointment, speak to your doc. Good Luck , we are a special group and everyone looks out for each other. June.
I agree with June. I have been on HU for two months also like you no side effects. But it’s odd times covid has impacted us all plus thinking about future Health and taking a powerful med I think the feelings you describe are normal. Maz posted some de stress aids a few months back on mindfulness.l find these help -
Hi Yvonne, it could be as June and Dovme have said, you could be feeling anxious about taking the Hydroxycarbamide because of what they are, and as Dovme also said, I did post details about some fantastic relaxation podcasts, they have been recorded for people with MPNs to help with the anxiety etc that comes with having a MPN, full details here
mpnvoice.org.uk/living-with...
Best wishes, Maz
I was frightened at first and had some minor side effects but, after a while (don't remember how long) everything settled down. Don't expect too much of yourself too quickly. Try to eat healthily, drink enough and it is likely you will feel better. I remember that at the beginning everyone, especially those close to me, irritated me. I remember thinking that I did not really know if I was ill or not. My best guess is that it probably took about 2 months to feel better able to cope. Good luck!
Hi. I have been on the hydroxy for 1 month
Like you I had no side effects. Prior to starting the drug I Experienced similar feelings to you did after starting the drug. I now feel much less irritated.
Obviously it affects different people differently.
After taking it for 19 days I had a blood test & was delighted to find my platelets had dropped from 700 to 500. My Hct still needs to come down from 48. The Haematologist has increased my weekend dose to 1000 mg daily.
Be kind to yourself & don’t try to Superhuman ,
Hi I’ve been on Hydroxy for over 20 years now, the only thing I would say is that long term and I mean long term treatment has meant for me that I suffer from numb feet and over the last two years have had three skin cancers on my face and hand removed so cover up in the sun as Hydroxy makes you more prone to skin cancer due to sun exposure, The numb feet I’ve just learnt to live with. The main thing to remember is this drug although a chemo drug is quite mild compared to some others so don’t worry about taking it, chin up.
Hi Yvonne ,
I have ben taking it for 25 years but I am afraid I have always got angry over silly things
before and after commencing to take it, Boris is my target at the moment.
As a drug its worked well for me and kept me alive.
Town crier
Ηello. i'm sorry for the situation you are in. You will definitely feel anxious and insecure but think positive. My experience with this drug is many years. I take HU for about 20 years and the side effects are few to me. Mouth ulcers and skin sensitivity. Be careful with the sun and drink plenty of water. I felt the same when I start. Be save and carefully. Good Luck.
Hi YBS.
I’ve been on hydroxy since may 20 with
Daily aspirin.
No obvious side effects- perhaps a little tinnitus but that’s more likely to be those 1980s rock gigs!
Tbh I don’t think about it too much. I just take my medicine and get on with my life.
Sure I wish I didn’t have ET but considering what many of my friends and family have had I consider my self very lucky.
Also my platelet count is now down to normal levels because of Hydroxy and any
concerns over the drug are far outweighed
by the knowledge that my chances of a sudden stroke / major incident that could kill me or change my life vastly for the worse are now much reduced.
Im no Dr but I suspect your irritability is caused by your illness and having to take a chemo drug playing on your mind , rather then the drug itself.
So do what makes you relaxed - music , exercise , tidying up all work for me - and blank the illness and meds out of your consciousness as best you can.
Good luck !
👍
Hi, I couldn’t wait to take hydroxi because I didn’t want another stroke- so I didn’t experience your symptoms.
I DO NOW! I put mine down to anxiety because I’m no longer able to do things as fast as I could Also I can’t concentrate and my memory is worse ( both were bad before )
We are all different and react differently. Don’t stop your meds. I take it you are being closely monitored which is usual when you first start it. Make your heamo away of your change of mood. Are you in the UK ? If so maybe you could talk to your heamo nurse prior to your appointment.
Good luck and welcome
Hi,
I agree with what the others have said. It is a stressful time starting new medication and coming to terms with your illness.
I started on Hydroxy last November.
I also had to take Allopurinol for the first six weeks to prevent gout.
I felt quite anxious and depressed in those first few weeks, but found my mood lifted once I stopped the Allopurinol. So I am convinced that it affected my mood.
I've been fine on the Hydroxy since then.
Just thought I would mention this, in case you are taking the Allopurinol.
Best wishes
Ada
Hello. I've been on the big H since mid June, - was anxious starting and definitely struggled with mood changes as you describe! I've experienced various side effects coming/going, like a process of settling on the drug - but overall feel SO much better and great to be protected from the nasties. Hang in there girl!
It seems highly likely that as others have suggested this has more to do with the anxiety of starting up the hydroxycarbamide (aka hydroxyurea - HU) than a side effect of the HU. However, you will find this warning on various drug monographs for HU.
"Tell your doctor immediately if any of these rare but serious side effects occur: mental/mood changes (such as confusion, hallucinations), seizures, shortness of breath, chest pain, persistent nausea/vomiting, severe stomach/abdominal pain, dark urine, yellowing skin/eyes, numbness/tingling of arms/legs, change in the amount of urine."
rxoutreach.org/monograph/hy...
The most important thing now is to talk to your doctor about what you are experiencing. We can share our experiences, but we are not your prescriber. Suggest printing a drug monograph so you can reference it along with what you are experiencing. I am hoping that you have a provider that will listen to you. Sometimes we experience providers that blow off patient concerns rather than address them respectfully. If you do experience that, I would suggest finding a new doc who knows more about MPNs and the drugs used to treat them. mpnforum.com/list-hem./ .
Unlike some of the others who responded, I am HU-intolerant. I experienced toxicity even at very low dosage. I did have docs who listened and I titrated off the HU and moved to a different treatment plan. The good news is that the adverse effects of HU will usually resolve when you discontinue it. There are other treatment options that can be used when HU is not viable.
I hope that helps. All the best to you.
l suspect it’s much to do with diagnosis and living with a disease. I get therapy which helps me but many self help options and voluntary groups etc are available. So far l am not experiencing any psychological problems with HU just totally normal anxiety about life changes and living with an MPN. It’s important to mention that alternative drugs don’t necessarily offer better solutions for everyone and some are unsuitable particularly if one has a history of anxiety or depression. It’s probably important in such cases to discuss with a psychiatrist as well as an MPN doctor ie
'PEG Interferon may cause patients to develop mood or behavioral problems. Make sure to tell your doctor if you are being treated for a mental illness or had treatment in the past for any mental illness, including depression‘
Side effects of Anagrelide also include possible depression
Dovme, you are 100% correct. ALL of the medications have both risks and benefits. So does a watch and wait approach. Even aspirin has risks. My current phlebotomy only tx plan for PV likewise has risks and benefits. It may need to change, perhaps in the near future. Our needs change over time.
We all need and deserve an individualized treatment plan based on the unique presentation of our MPN and co- occurringconditions. One size does not for all. My hope for all is to find a MPN specialist who will really listen and modify treatment to match the needs and preferences we each have.
I
Have periods of irritability. Periods of doubt. But as my doctor has said. The side affects are easier to accept when you consider the alternative of a DVT or stroke.
Stay hydrated, be aware of sun exposure, and stay informed. We are not alone!!
I am also on hydroxy and was also on allopurinol at first to prevent gout i felt quite anxious for the first couple of months and very irritable ,i still get the odd mouth ulcers, thinking about it my irritabilities and dreadful mood swings did stop when i came off the Allopurinol i feel alot safer knowing my platelets are under control than if i wasnt on it as i was extremley lucky that i my high platelets caused me to have a burst dudenal ulcer and not heart attack / stroke though It have been differant ,i was extremely lucky
This is so interesting. My daughter made a comment that I seem to be unusually short tempered for the past year BUT I have been on Hydrea for only a month and was diagnosed only in feb. And yes the most ridiculous thing can set me off on a tangent. Maybe it’s the changes our bodies are going thru due to MPN? Interesting thought.
I am still only on asprin and EPO injections but I think since diagnosis a year and a half ago my mood and temper have changed drastically! I've always been a worries but it's extreme now. My anger can come from something very trivial but I can not control it. I feel it's maybe frustration too!
C
Greetings from Fleetwood England.
Where you are now with your medication I too felt like you.
As others have said perhaps it's about accepting the facts of your condition.
My team gave the best advice for me" it's infinitely manageable." So I take my meds and my levels are in normal range and have been so for 4 years now of a maintenance dose of 2 per day.
Hope this helps.
As with altered behaviour , as with all life throws at us, perhaps accepting the kick back of this disease process, is temporary.
Some times its a wobble?
It makes you feel vulnerable and its some times feel like you are in a mire situation.
If possible again this is temporary.
I found mindfulness very helpful.
Regards Annemarie.
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