Questions on Hydrea usage: I have been on this... - MPN Voice

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Questions on Hydrea usage

georgevanier profile image
15 Replies

I have been on this Forum for a long time and just like to say thanks to every one for the great info. Quite scared about taking Hydrea which I will have to start very soon. Few days ago I had bleeding (quite scary ) related to Diverticulosis.

Platelets currently at 1198.... on low dose aspirin only.

Has anyone with Diverticulosis currently taking Hydrea and low dose aspirin?

Any info on this will be greatly appreciated... so scared and worried

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georgevanier profile image
georgevanier
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15 Replies
hunter5582 profile image
hunter5582

Glad you decided to post about what is going on. Feeling scared and worried is understandable. The good news is that this situation is manageable.

With platelets that high, you would be at increased risk for hemorrhage. A cooccurring diverticulitis would also carry a bleeding risk. The aspirin, while protecting you from thrombosis, will also increase bleeding risk. Given all of that, cytoreduction likely makes sense, particularly if you are age>60.

There are two options for treating ET (Pegasys and hydroxyurea) . If you have PV, then the options are the same, with the addition of Jakafi and Besremi. If you are age <60, then Pegasys (or Besremi) would typically be preferred due to the risks of long-term use of HU. Some docs prefer one of the interferons for all patients. Ultimately, it is your preferences that should drive the decision.

Know that everyone is different in how we respond to these meds. Some tolerate and benefit from one but not the other. We are all different. if you think it best, you a always try HU and see if it it suits you. You can always switch to something else if HU does not work for you.

Here is some information about HU that may help you as you start down this path. Do note that just because a side effect could happen does not mean that it will happen.

drugs.com/monograph/hydroxy...

online.epocrates.com/drugs/...

oralchemoedsheets.com/sheet...

ethrombo.blogspot.com/2017/...

All the best.

georgevanier profile image
georgevanier in reply to hunter5582

Thank you so much for the valuable input... much appreciated

Maggie-ol profile image
Maggie-ol

Hi I am 71, diagnosed with PV in December 2016-diagnosed with diverticulosis a year before.

I have been taking Hydroxycarbamide (9 per week) since diagnosis with no significant side effects although do need take a supplement to prevent constipation. My Hydroxy dose is increased/ decreased slightly depending on quarterly blood results.

Wishing you all the best

Margaret

georgevanier profile image
georgevanier in reply to Maggie-ol

Thanks so much, Heather

LaalRobbo profile image
LaalRobbo

Hello, this is so like my own experience at present, although, my platelets are around 650, slowly going up. I am 60 in October and my haemo is pushing for me to start Hydroxyurea. My previous haemo didn't agree with meds at 60, but this one is adamant I start when turn 60. Currently on aspirin daily,I have had problems for years with my stomach and have just been diagnosed with diverticulosis. I too am reluctant to start meds in case it triggers a flare up as I too had a massive bleed last time. Very scary. Haemo wants to sort out at my next appt which he cancelled and now not until mid Sept. I can let you know what he says, as I last spoke to him when I was very unwell with my stomach.I can't tell you all how much I appreciate the information given on this site, i was given no explanation when diagnosed 5 years ago and like a dummy didn't ask.!! All my knowledge came from here,thank you x

georgevanier profile image
georgevanier in reply to LaalRobbo

Thanks, will be talking to my Haemo in a few days, will post reply.

LaalRobbo profile image
LaalRobbo in reply to georgevanier

Thats's good, will be interesting to see what they say

Conneryfan profile image
Conneryfan

Hi. I am 58 on hydroxy and blood thinners. Just been diagnosed with diverticulitis and a bowel polyp. Awaiting an op where I will have to stop blood thinners a week beforehand. Nothing mentioned about diverticulitis but I will mention it at next haemo appt. Good luck

georgevanier profile image
georgevanier in reply to Conneryfan

Thanks, all the best

Meatloaf9 profile image
Meatloaf9

Hi, I am 72 PV and take 8-9 HU per week for the last 13 months. I also have diverticulosis. I also take 2 81mg aspirins per day. So far no problem with any of this and my blood counts are well controlled. Platelets went from a high of 650 to around 230. Best to you.

georgevanier profile image
georgevanier in reply to Meatloaf9

That's great results!! Hope it works for me, Thanks

Water111 profile image
Water111

I have diverticulosis with PV, my stomach was bothered by regular low dose aspirin.I switched to Vazalore low dose aspirin 81mg, it help me out a lot. I'm on Hydrea also.

Talk to your doctor prior to taking any medication. I'm not a doctor.

georgevanier profile image
georgevanier in reply to Water111

Thanks so much, will mention to my Haemo

Auggie17 profile image
Auggie17

I have ET Jak2 and am on Hydroxyurea 500 mg per day. I have Diverticulosis and am experiencing diverticulitis flare ups about every 2 months. I am on baby aspirin and Plavix so bleeding is an issue. I have Renal Stenosis so my vascular doc wants me on Plavix AND aspirin. Right now I am in the middle of a flare up and taking Augmentin for it. Unfortunately, it is not working.I feel your pain, (literally ) as I am 67 and don’t feel that all my docs are looking at my medication lists and figuring out if they are contributing to my diverticulitis issues. I am planning to have a heart to heart talk with my gastroenterologist next week about all of my meds and their potential side effects.

georgevanier profile image
georgevanier in reply to Auggie17

So sorry, hopefully your Doc will sort out the side effects. Please keep in touch, Heather `

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