ET , Jak2 positive.

[Rebus12]

Having being diagnosed with ET last August, I have been on aspirin only until my haematologist said that with platelets rising to 540 I should start hydroxycarbamide 500mg daily. I was also prescribed Allopurinol, 300mg daily.

Has anyone else been prescribed Allopurinol?

In the last few days I have experienced nausea, slight headache and a small rash.

Thanks,

Maureen

[Cat1001954]

yes I was on it for a month only

[Rebus12 in reply to Cat1001954]

Any side effects?

[Cat1001954 in reply to Rebus12]

not that I can remember

[hunter5582]

Allopurinol is used for gout prophylaxis and to treat chemo-related hyperuricemia. Hydroxyurea can impair kidney function. Do you have gout or some form of kidney disease? Did the hematologist explain why the allopurinol was prescribed?

Hydroxycarbamide and allopurinol can both cause heachache, nausea and rash. These are fairly common adverse effects. Taking two meds that can have these side effects might make the side effects more likely to occur. Did the hematologist discuss the potential drug interaction with you?

Monitor/Modify Tx - allopurinol + hydroxyurea. monitor CBC: combo may incr. risk of myelosuppression (additive effects) online.epocrates.com/intera...

Your MPN care team needs to know about the side effects you are experiencing. Suggest contacting them and letting them know as soon as you can.

Meanwhile, here is some information that may help answer some questions.

Allopurinol. online.epocrates.com/drugs/...

Hydroxyurea drugs.com/monograph/hydroxy...

[Rebus12 in reply to hunter5582]

Thanks Hunter.

I have never suffered from gout or kidney disease. I suffer from mild asthma and slightly elevated blood pressure which is controlled by lisinopril. I think the haematologist said something about the allopurinol stopping the absorption of chemicals into my body. He was very vague.

Unfortunately I do not have a specialist MPN care team hence my previous post regarding specialists in the area.

I do hope that I will not be on this combination for life as I can only describe my symptoms as flu like!

Many thanks,

Maureen

[hunter5582 in reply to Rebus12]

Seeking consultation with a MPN Specialist is certainly the best thing to do. There seem to be a number of questions for you to review about your treatment plan. It would be best to get the answers from a MPN-expert provider. Suggest making that happen as soon as possible.

You do have other options to treat the ET. You do not have to stay on this combination unless you choose to.

Wishing you all the best.

[Rebus12 in reply to hunter5582]

Thanks Hunter.

My platelets have dropped, in less than 2 weeks to 347, from540. I am now told to take hydroxycarbamide every second day and to stop the other drug completely.

Maureen

[Mirror368 in reply to Rebus12]

That was a great response to HU. Right now I am taking 500 mg HU on Monday/Wednesday/Friday, Easy to remember!

Eileen

[hunter5582 in reply to Rebus12]

HU is a faster acting option. Glad you saw a quick response.

Wishing you success as you move forward.

[Exeter21]

That seems a wierd decision. My husband is on the allopurinol for Gout & I have not heard of it helping ET . Do not just accept what they give. I was only told Hydroxy for my platelets at your levels . I am ET Jak2.

I had very bad reaction to HU struggled to get any other drug suggestion until I contacted MPN specialist. Very happy I did as they are experts on our complaint.

I was approved Interferon & excellent response & no side effects now dose right.

Do not just suffer on a drug many healthcare professionals have not even heard of our disease that I speak with. Make your own decisions as our bodies react to various drugs. Lots of choices & good MPN experts.👍

[Rebus12 in reply to Exeter21]

Thanks Exeter, I amnow only on hydroxycarbamide every second day!

Maureen

[Bouillabaisse]

My husband was put on Allopurinol as well as Hydroxy when he started treatment for ET and JAK2. He was told it would be just for first 3 months. I can’t remember exact wording, but along the lines of hydroxy causing a lot of dead cells/waste as it starts affecting the body and Allopurinol was to prevent gout symptoms. But once the initial fast drop in platelets had happened it wouldn’t be needed any more.

He wasn’t at risk of any kidney issues as well within BMI and no other health issues. No noticeable side effects. Biggest issue is fatigue and brain fog - but that’s likely a combination of ET and Hydroxy.

[Rebus12 in reply to Bouillabaisse]

Thanks, patelets dropped by nearly 200 so I'm only on hydroxycarbamide now!

[Swim360]

Hi,

When I was diagnosed with PV 12 months ago I had gout symptoms and allopurinol was prescribed for this.

Following treatment with venesections and hydroxycarbamide (500mg daily) the gout symptoms went and I requested that I stop taking the allopurinol which was reluctantly agreed, they hate taking you off meds.

As Hunter says you need to ask questions don't just accept. I know I have to take the HU but I didn't have to take the allopurinol, I would still be on it now if I hadn't of asked.

[Rebus12 in reply to Swim360]

Thanks , you are right, we do have a say in what we take!

Maureen

[Blackroc]

Yes. I’ve been both Hydrea and Allopurinol for eight months. The Haematologist told me that the process of elimination of the excess blood cells creates more Uric acid, which can cause gout.

[Rebus12 in reply to Blackroc]

Thanks, I have now stopped allopurinol as my platelets have dropped. The sickness feeling has gone.

Thanks for replying.

Maureen

[Hopetohelp]

Nope. Wasn’t prescribed or mentioned to me. On Pegasys

[Rebus12 in reply to Hopetohelp]

Thanks for your reply,

Maureen

[Wyebird]

I’ve never had a rash so no.

[Rebus12 in reply to Wyebird]

Thanks,

Ive stopped the allopurinol and am now taking the hydoxy every second day. Symptoms going!

Maureen

[mbr8076]

Hi Maureen,

I am also 64 year old; I was diagnosed in 2018 when my platelets were 1 million following a mild heart attack. I started on Hydroxyurea and Allopurinol. My hematologist mentioned to me as the platelets die off you are susceptible to gout. It is temporary as your body adjusts to the changes. I do not remember how long I had to take it but maybe 6 months then he took me off of it. I, personally, did not have any side affects on Hydroxyurea other than slight hair loss. Wish you the best on your journey

[Rebus12 in reply to mbr8076]

Thanks,

I am now on hydroxycarbamide evey second day and have stopped the allopurinol altogether as my platelets have dropped to 347. I hope they stay at this level!

Maureen

[Mirror368]

Your platelets are not really very high. My goal is 450 or less. Mine are now 519 and my hematologist told me I can take three days a week to slowly lower them. This way I have no headache issues..

Eileen

[Rebus12 in reply to Mirror368]

Thanks Eileen, my platelets have dropped to 347 in less than 2 weeks so I am now on hydroxycarbamide every second day and no alopurinol. My symptoms have gone too!

Maureen