Is anyone concerned on the side-effect of taking hydroxyurea for long time?

[Sam2022]

Is anyone concerned on the side-effect of taking hydroxyurea for long time? I am taking 500mg/day and scared with the toxicity of this medicine in long term. I heard Interferon is much better than HU and has chance to change JAK2 + to negative. Anyone any recommendation? I am JAK2+ with platelets ~600

[hunter5582]

You will hear mixed reviews on HU here on the forum. There are those who tolerate it well and benefit from it. There are also those who do not. I am one of those who did not. I experienced significant toxicity even at very low doses. There are potential issues rated to long-term use, which you can see documented in this link.nail hyperpigmentation (long-term use)

skin hyperpigmentation (long-term use)

nail atrophy (long-term use)

skin atrophy (long-term use)

secondary leukemia (long-term use)

skin CA (long-term use)

online.epocrates.com/drugs/...

Here are a few pertinent references that answer your question.

drugs.com/monograph/hydroxy...

ncbi.nlm.nih.gov/books/NBK5....

The question about PEGylated Interferon being a better med is a matter of some debate. Most providers prefer it for younger patients (age<60) due in part to risks associated with long-term use. Some providers prefer it for all patients. You are correct that the current research indicates that PEG-IFN has the potential to reduce mutant allele burden, but this does not happen for all patients.

It is important to understand that all of the meds used to treat MPNs have a risk/benefit profile. This include PEG-IFN, which also has its own risks.

online.epocrates.com/drugs/...

drugs.com/pro/pegasys.html

The decision whether to use HU of PEG-IFN is one that only you can make. The decision needs to be based on your treatment goals and preferences, your risk tolerance, and the unique presentation of your MPN. This is a decision that your hematologist should have already reviewed with you. You should have had each of your treatment options reviewed, with a thorough analysis of the risks/benefits of each choice. This would have included HU, PEG-IFN and aspirin-only based on your risk profile. Here is an excellent article about how this choice should be made by Dr. Harrison.

mpnjournal.org/how-i-treat-...

Here is an additional article with more information by Dr. Spivak.

legeforeningen.no/contentas...

Ultimately this is your decision. Doctors advise. Patients decide. If you would prefer to use PEG-IFN over HU, it is your prerogative to make that choice. That is the point made in the excellent article by Dr. Harrison.

All the best to you.

[Kdavie12 in reply to hunter5582]

Thank you very much for the info, it helps me too🙏

[Sam2022 in reply to hunter5582]

Thanks a lot. Agree with you on Doctor advice and patient choice. Best

[Belgobrit72]

Hi, I'm 49 and have been on hydroxy for at least 5 years. It has brought my platelets from 900+ to the normal range but my consultant had started to talk about moving to interferon. Because of covid I have not had a face to face appointment for ages but due one today. As with these things, it will actually be a new consultant so will be good to hear what he says. Hydroxy has been fine for me, no side effects, felt a lot better as soon as I started, just the need to carry factor 50 suncream everywhere .

All the best

[DoubleF79 in reply to Belgobrit72]

Hi. Good to hear you’ve had good results with HU. I’m due to start 1mg a day this week as PegInt hasn’t worked at all for me over the last 6 months. I’m 41. Hoping HU does the trick & I don’t experience too many side effects. SPF at the ready! All the best x

[Sam2022 in reply to DoubleF79]

hi, sorry for hearing Peg didn't work for you. 1mg of HU may not work since I took 500mg/day. what dose of Peg did you use?

[DoubleF79 in reply to Sam2022]

Hi Sam. Consultant has said 1mg a day for 7 days initially along with my current 180mg injection once a week for 4 weeks. I’m happy to be led by her & I’m expecting the HU to be increased gradually as long as I tolerate it 🤞🏻

[Sam2022 in reply to Belgobrit72]

Hi, thanks for the response and plz let us know how your new consultant say about ET treatment. I just worry about the HU long term effect. right now , I only feel knee pain and sour bone.

[Belgobrit72 in reply to Sam2022]

Met new consultant on Friday. We discussed interferon & my concerns about side effects. He said that older patients seem to tolerate it better than younger ones and that many younger patients seem to give up after a few months, which reinforced my reluctance to change. He said that although there are concerns about potential long term risks of hydroxy, it is not proven. I will be staying on my current treatment for now and revisit the issue in the new year

[Manouche in reply to Belgobrit72]

Hi Belgobrit,

“Time on treatment analysis demonstrated that every year on Pegasys reduced the risk of progression to MF by 9% and was associated with a mortality risk reduction by 6% per year.”

As far as I know, the figures are not as good with hydroxyurea.

mpn-hub.com/medical-informa...

[Mcrg in reply to Belgobrit72]

I started HU a few uears ago at 48 years young and it wasn't discussed, just told I need this medication. I didn't know there were others until looking on MPN site .

[Hopetohelp]

I am on Pegysus and just got my bloods result from last week, 10th injection, and figures finally starting to come down. It takes a while sometimes to kick in . Tolerating it well luckily so would recommend you discuss with your haematologist

[Sam2022 in reply to Hopetohelp]

Thanks. Good hear Pegysus works on you. what is your initial counts.

[Hopetohelp in reply to Sam2022]

Platelets diagnosed at 650 and gradually increased to 850. RBC went to 5.50 recently which is now back in normal range. Platelets just came down by 100

[light]

Hi Sam, Hu was not so good for me and after two and half years I switched to Peg Inteferon and now I am on 135 mc every three weeks. After injection I get reaction like flue symptoms for few days and that could be few days after injection or a week after. I've been on Peg for last eight years. It works well for me and keeps platelets under control . Wishing you well.

[Sam2022 in reply to light]

Thanks, light. Glad to hear Peg interferon works on you. Could you tell me what is the brand of Peg did you use? What is the initial platelets?

[light in reply to Sam2022]

It is Pegulated Inteferon Alpha 2. I don't remember platelets number at the time when I started on Peg since that was eight years ago. Initially when I was diagnosed and started on Hu platelets were 950. After two years being on Hu I am not sure now but I think it was under 400.

[Bmj63]

Hi Sam I’m mpl positive and am on 1000 mg daily. My platelets are down from 600 to 380 and I have had no serious side effects. I am quite happy to take Hydrea long term.

[Edgewalk]

Hi, I was diagnosed in May with PV Jak2 & I am also concerned/confused with the treatments. I've been told I've been prescribed Hydroxycarbamide 500g 1 per day + I'm due to have my 1st venesection next wk. Alternative medications were not offered & when I asked I was told...this is what we prescrib, if I don't tolerate it they try something else. I felt it was a case of 'this is the treatment...ok!....any questions!....sign here.....see you in a month'. I'm left wondering if it is the best treatment all things considered or if there is a better treatment that isn't being offered due to cost implications....just a thought. I'm slowly reading through posts on this group which I'm finding helpful, thank you x

[KoroCharlie]

Kia ora Sam2022, I have been on Hydroxyurea for almost 20 years. The past 10 years has been 500mg/day but varying doses prior to that. Initially it was for Polycythaemia and then for Myelofibrosis. Side effects have been manageable so far (leg ulcers that take ages to heal). I have spent periods off the medication (my choice) but experienced other unpleasant side effects (night sweats, extreme fatigue) that may or may not be associated with the medication. Overall I have found it better to continue than to stop. Also, I am now three years past my expected expiry date so happy to live each day as fully as I can.

[MichaelS]

Hello Sam 2022, I was diagnosed with PVR in May 1983 and after a few months on Busulphan I was put on Hydroxyurea, as it was known in those far off days. My dosage changed as various blood levels changed and then I was diagnosed with MF in 2010.

My reactions to Hydroxycarbamide over the years were mainly a red face caused by Rosecea, mouth ulcers most of the time, very white teeth with a soft enamel. However it did control the bloods and swollen spleen most of the time. Sometime I became toxic to hydrea.

I am now on Ruxolitinib, since 2013/2014 but not happy with skin cancers, added weight, increased cholesterol, and skin rashes, Monday week I will be having a discussion with my consultant about changing to interferon, or maybe something else.

I wish you well what ever choice you decide to follow. I suggest that you give the hydroxy a few months to see if you do get reactions, which are upsetting your body. Remember, that if the bloods are controlled well the haematologist will not want to change anything. It is your life and if side effects are bad then you need to take control and ask for some other medication.

Best wishes from Michael

[Sam2022 in reply to MichaelS]

Thanks for the suggestions. All the best