Starting Hydroxycarbamide

[Adw265]

Hi All.I will be starting Hydroxycarbamide on 31st Dec taking 500mg everyday. I only have one concern. When I was taking interferon to control my blood levels I started getting nosebleeds. The last one resulted in me having to attend A&E as it would not stop. I am worried that the same will happen when taking Hydroxycarbamide. Has anyone else had a similar experience.

[EPguy]

That is a serious reaction. Can you say which type of interferon you were using?

[Adw265 in reply to EPguy]

Peginterferon Alfa-2a 45mgDid start on 90mg which was then increased to 135mg then reduced to 45mg. Only ever had nosebleeds whilst on interferon.

[EPguy in reply to Adw265]

At least you know what the cause was, that is a big part of good medical care. Hoping HC does better for you.

[hunter5582]

It is hard to comment without knowing more details. There are only two links I know of between interferons and nosebleeds. One would be if the Pegasys caused thrombocytopenia. At the other extreme, if the interferon was ineffective and platelet levels were very high, then hemorrhage could also occur. Knowing your blood counts is essential to understanding wha is going on.

Monitoring your blood counts is fundamental to any cytoreduction. Since you are starting on HU, you should be monitored at least every two weeks until you achieve stability.

Please do let us know what you learn and how you get on.

[Adw265 in reply to hunter5582]

Taking interferon meant my bloods test results were showing within 'normal' parameters except haematocrit which stayed above target of 0.45.

[summerdown in reply to hunter5582]

I can only speak for myself. I have been y=taking HU for ET/Jak2 since 2019. Initially 500 mg a day - this has increased to 4000 a week and I have never had a nosebleed. Your previous experience is a concern and you should be monitored. Hope you get on ok with HU

[Richinspirit]

hello - don’t be frightened of this drug. My husband starting on it 15 years ago and at one time was on 1500 mg a day. Apart from the tiredness, there were no really other side effects apart from the fantastic impact it had on his platelet count .. Happy New Year.

[Adw265 in reply to Richinspirit]

I'm really hoping tiredness isn't going to increase as its a real struggle currently and is having a substantial impact on social life.

[Frances1903]

So hope Hydroxy suits you.Touchwood I ve taken this medication for over 6 yrs and no nosebleeds.Wishing you very well.

[Adw265 in reply to Frances1903]

Thanks. I'm hoping this will reduce the amount of venesections.

[Joetcalr]

I had a lot of times when blood dribbled out of my nose when on a higher dose of hydroxy, I’m now on a lower dose and it doesn’t happen at all, I also used to get a lot of mouth ulcers.

[Jennytheb]

hi I am on 3 x 500 daily, have been for 9 years, I don’t have nosebleeds, it hasn’t made any difference to my life.

I hope you get on well!

Kind regards Jenny

[Adw265 in reply to Jennytheb]

Thanks Jenny. I'm hoping it will only have a positive impact.

[lizzziep]

I had a really bad nosebleed earlier this year, and also ended up in A&E, it was caused by a weak blood vessel at the top of my nose, due to me having a heavy cold and blowing my nose a lot. The ENT doctor said the disease contributes to nosebleeds more than the drugs, I was on Rux at the time. Also she said things like constipation can also contribute to nosebleeds!

I’m on hydroxy again at the moment and ok - so far!

[Wyebird]

I didn’t. It could be coincidental. Is that why you are going onto hydroxi?

[Adw265 in reply to Wyebird]

I stopped interferon in August and have not had a nosebleed since. On Hydroxycarbamide to stop venesections as they have caused severe fatigue. Ferritin levels have never recovered from near weekly venesections. Ranges between 7-11 over the last two years.

[Wyebird in reply to Adw265]

Oh dear, I hope all improves for you.

Good luck.

[Scottishterrier]

Hi have been on hu due to a clot to liver i have had ET jak2 + since 1994 but it was about 6 years later had the clot not long after a trip to the States when I first started taking hu was feeling tired and nausea because It was my liver i was also put under the care of a gastrointestinal consultant he monitored the liver as a part died of due to the clot but it is lucky that the liver is only organ can regenerate itself i mentioned it to my gastrointestinal consultant i was feeling nausea he put me on omeprazole to protect stomach lining from all the drugs and for nausea domperidone still on it but works a treat also the hu have done wonders for my platelets it has lowered them and remains stable Happy new year

Stay safe

Scottish terrier

[Adw265 in reply to Scottishterrier]

Luckily I haven't had a clot and I hope it stays that way. I have been given tablets to prevent nausea but told I probably won't need them. I'll be having one tablet a day to start with. My two hopes are haematocrit stays below 0.45 and ferritin levels rise back to normal parameters.

[Lasbrisas1]

Gums Bleed on Hydroxy, plus lose lots of hair.....Hematology has taken me off it , they are thinking Interferon, Did you experience loss of hair on Interferon.

[Adw265 in reply to Lasbrisas1]

I was only on interferon for 5 months and in that time no loss of hair. How long were you on Hydroxycarbamide for and what dose?

[Lasbrisas1 in reply to Adw265]

2 years, on 500 mg...I hat

[Lasbrisas1 in reply to Lasbrisas1]

I hated being on it

[Adw265 in reply to Lasbrisas1]

I hate being on any form of medication. So having to take aspirin and allopurinol, now Hydroxycarbamide too is not sitting well with me.

[Meatloaf9]

Hi, I have been on HU for 42 months with no problems that are evident to me. Blood counts are all well controlled so far. I have had loss of and thinning of the hair. Best to you.

[highlake]

I have been taking hydroxyurea (Droxia formulation) 600mg/day for 6 yrs. I have PMF. No nosebleeds, but I used to have them regularly before 6 yrs ago. I also take Eliquis 5mgs BID and aspirin81mg each day, which can cause excess bleeding, but I haven't had any problems with excess bleeding. The Droxia has lowered my platelets to normal range, and helped keep my spleen from enlarging. Also, I have not had kidney function problems or anemia.

[Fairydust1111]

I was diagnosed with ET 2 years ago and have been on hydroxy since…. It has controlled my platelets so can not complain … side effects, joint pain, seeats and irching of my feet sporodically

[Fairydust1111 in reply to Fairydust1111]

Sweats*

[BloodZero]

I used to get nose bleed easily when i started Hydroxy. 500mg like you. But now a few years on i dont get nose bleeds and i take 2000mg a day. I dont know what changed. I just have to try not to spring a leak.