Hydroxycarbamide side effects?

[Waterwoman]

Hi I’m new to this site and was reading your questions and answers. I have ET, diagnosed two years ago.

Can I ask as the doctors want to put me on Hydroxycarbamide but I’m reluctant because of the side effects that are claimed by using the drug.

I had COVID in March and since then all has gone down hill with hair shedding etc. and my platelets increasing..

I am building myself up with a good diet and vitamins except iron and I just don’t think I can cope with more side effects!

[Dovme]

Hi Waterwomam

Welcome to the forum

Many people seem to do fine on Hydroxycarmide

I also have ET and take 17 pills a week. So far it’s been 3/4 months l have had no side effects. My platelets have dropped from 1200 to 560. and my fatigue has vanished. We are all different in our tolerances. Once you begin your meds you will be closely monitored with regular checks. I see my haematologist every month. if you feel uncomfortable do discuss with your doctors they may offer you alternatives to Hydroxycarmide. But all these drugs have side effects

Best of luck to you

[Waterwoman in reply to Dovme]

Thank you for replying.. ... this helps a lot.

Look after yourself

[francesb]

Hi, I’ve taken it for several years with no problems apart from perhaps my hair is thinner than it was. And needing to spend a penny more often.There is a long list of side effects but there is for every drug so I’d say take it and see - you can always stop! Good luck.

[Waterwoman in reply to francesb]

Thank you for this .... yes good advice ... Take Care

[Jennytheb in reply to Waterwoman]

Hi I am the same, I was very concerned when first diagnosed but truly I can say that I now have to have 21 a week and still ok. I consoled myself that as have Jac2ET have to take something or perhaps get strokes/worse. I get no side effects.

Hope all goes well for you and this is a fab site, we are all in the same boat.

[Waterwoman in reply to Jennytheb]

Thank you, yes I agree with the latter defo

[Ebot]

Hi there.

I expended so much energy angsting about whether to start Hydroxy. What a waste of valuable resources!!

I’ve been on Hydroxy for a few years now and the only effects have been positive. My numbers tumbled and I felt a new lease of life.

You have to be careful in the sun - but every cloud has it’s silver lining as it were. And literally in this case. My skin is so much better and I seemed to have slowed the descent into wrinkledom!

It can take a while to establish the right dosage. The drug information leaflets are very scary - you probably wouldn’t take paracetamol if you read too closely. The reality is that the overwhelming majority of MPNers tolerate Hydroxy very well. And the benefits are life changing. HTH.

[Waterwoman in reply to Ebot]

Thanks, it seems you took to it well.

[Peterwi]

Hi

I have taken 8 tablets a week for 5 years. My symptoms before I started medication disappeared, headache, burning fingertips and tiredness. But I had side effects the first many months, bone pain, hair loss, and blisters in the mouth. Now I only suffer with mouth blisters now and then. I think the body has to get use to the medication.

Winni

[Waterwoman in reply to Peterwi]

Thanks , It seems so individual after reading everyone’s replies.

Glad you a feeling better now.

[YBSx]

Hello

I really feel your pain. When I was advised to take hydroxycarbamide I was mortified whilst after a discussion with my husband I decided I had nothing to lose.

I have ET and jak2 positive and my symptoms from that were not nice.

I have now been on this medication 2 months and my platelets have reduced and the unpleasant symptoms have gone

The only side affects I have experienced it stiffness in my joints and at times feeling fatigued

Everyone is different but my advice would be try it. I feel tonnes better on the medication

Yvonne. uk. X

[Waterwoman in reply to YBSx]

Thanks 🙏 all this info is helping...

[Wyebird]

Welcome, your present condition indeed raises questions. I’m really glad you have survived COVID. As for hydroxi when I was on a low dose 2 a day, I was coping just fine in fact better for it and that maybe the case for you.

Discuss the option with your heamo. and take it from there.

Good luck

[Waterwoman in reply to Wyebird]

Thank you 😃

[Quercus53]

Hi! Like you I am under pressure to start up hydroxy, as I am ET CalR. I really don't fancy it much as I am already on Methotrexate for RA and the two mixed together can intensify any side effects.

At the mo I just take aspirin daily and my platelets are around 550. A few people on here have been delighted to get as low as me, so this is why I am reluctant to start taking, what I've read to be a carcinogenic drug. A few years ago, the accepted highest amount of platelets was 600.

Once lockdown is over, if ever it is, I'm asking for a second opinion about the pros and cons of the drug and also whether my platelet count warrants taking the drug or not.

We have to be content with our decisions and everyone is different. Listen to everyone's experiences and views but ultimately it is all down to you, and perhaps, your family to decide.

Good luck

xx

[Waterwoman in reply to Quercus53]

Thank you, yes my decision at the end of the day x

[Cja1956]

I’ve been taking hydroxy for over 12 years now. At the beginning, it did make me drowsy, do I started taking it at bedtime. Now, it barely affects me and I take it morning and night. I’m taking a second chemo pill at night as well, since my ET progressed to MF a couple years ago. I don’t like to mix too many pills, at once.

Good luck on you mpn journey.

[hunter5582]

You will hear a variety of experiences with HU on the forum. Some people seem to tolerate it OK. Others do not. I was one of those who did not. I experienced toxicity even at sub-therapeutic doses. Unfortunately, for me the side effects did not completely resolve when I discontinued the HU. Note that this my experience. We each respond differently to HU and all of the treatment options for MPNs. All of the options have a risk/benefit profile.

The underlying question is why do you need cytoreduction? Are you having symptoms? Are there co-occurring medical issues that increase your risk? Many people with ET do fine on an aspirin-only treatment protocol. Some people are more prone to hemorrhage than thrombosis with their variant of ET and should not take aspirin. Each person with a MPN has a unique presentation and needs an individualized treatment plan based on their unique profile. It is very important to consult with a MPN specialist as most hematologists do not have the KSAs to provide individualized care for MPNs. Here is a list of docs with the requisite expertise mpnforum.com/list-hem./ .

You have legitimate concerns about the recommendation for HU and deserve to have all of your concerns addressed prior to making a decision about your treatment. This is best accomplished by consultation with a MPN Specialist. Do bear in mind that each choice carries intrinsic risks and benefits, including the choice to not take meds. Once you have adequate information, you will be able to make the best choice for yourself.

[Ozziepig]

Hi Waterwoman

I am 69 was diagnosed with ET Jak2+ in March this year and started aspirin and hydroxycarbamide immediately. The drug worked well and reduced my platelets which was great.

I had no side effects apart feeling a bit tired sometimes then about 5 months in I had nausea, sickness, dizziness and felt awful.

After discussions with my consultant they reduced my dosage and the sickness etc stopped and despite a small acceptable rise in platelets I am feeling good again.

You need to weigh up high platelets against side effects they you may or may not have.

Just be ready to talk to your doctor/consultant with any side effects you may have.

When I felt rough I got good advice from people in the MPN family and I’m glad I did as it helped me to sort out my problems.

[Waterwoman]

Thank you for telling me your account, very helpful

[Jocro]

Hello Waterwoman. Some folks tolerate Hydera very well, some do not as you know. I am 83 YO and have taken Hydrea for 33 years with no side effects. I take 9 capsules per week and have been on that dose for years. Just so you know, I have led a long and healthy life and I wish the same for you. You can probably try Hydrea

and see how it works for you. If you have unpleasant side effects, you can stop or try another treatment. My very best to you.

[Waterwoman]

Thanks for this. That’s amazing

Yes it definitely seems individual as with anything.

Long may your health continue. 😃