Mpns info

[Polyruba]

Hi my name is Mark I'm new to this but think it will help to here from other people with mpns. I have polycythaemia Ruba Vera and been on hydrea 500 for 16 months.

[piggie50]

Welcome Mark,

I have PV too, diagnosed 14/15 years ago, (can’t remember) and have been on Hydroxy for the last 7 years. No issues.

Judy

[Tico in reply to piggie50]

Had to laugh judy, we get so used to living with an Mpn, we forget how low long we've had it or is that called getting older! 🤣🤣 Hope your keeping safe. Warm wishes tina.x🤗

[piggie50 in reply to Tico]

Ha ha, yes Tina, I think old age has something to do with it 😆 but, to be honest I’ve really never had much of a problem with PV or the meds, I was working full time when I was first diagnosed and lots has happened since then, but I just got on with life. I’ve had more problems with RA than PV.

I’m keeping safe and being very careful thank you. Enjoying these lovely sunny days.

Judy xx

[Polyruba in reply to piggie50]

Hi had test done for something else in 2007 and found I had an slightly larger spleen and slightly higher platelets they keeped their eye on it and in 2016 had bone marrow test jak2 positive went on asprin and hydroxy in 2018 my levels have been ok for 12 months but is was the not knowing before they were OK and work see you as OK from outside and still try to treat you as normal.

[Manouche in reply to Polyruba]

Hi Mark, you look young. Have you been proposed to try Pegasys instead of Hydrea ?

[Polyruba in reply to Manouche]

Hi Manouche

Yes only 49 as hydrea is normal one to try first and is working not been asked.

[Manouche in reply to Polyruba]

Mark, HU is a good drug but it’s a chemotherapy, unlike interferon. Some people can’t tolerate INF so they should stick to HU. Did you read this paper ? : practiceupdate.com/content/...

[hunter5582 in reply to Polyruba]

Welcome to the forum. I am sure you will find lots of support and information here. it sounds like you are tolerating the HU OK since you do not mention any of the common adverse effects. Manouche is correct that you look a bit young to be on HU, however. Hopefully the docs talked to you about the implications of HU if you are still at a point where you may someday want to have children. Likewise, you should have received some specific warnings if you are sexually active while taking HU. If you have a female partner, then it is important that she not even handle the bottle of HU without gloves. The doc will work you on monitoring for the more serious adverse effects of HU. Fortunately most people do not experience those effects.

FYI - I also have a JAK2+ PV. It started at ET over 30 years ago. I am fortunate to have a relatively indolent form of PV. I am currently on a phlebotomy-only tx protocol. I am HU-intolerant, so I can't take it. If/when I do need to resume medication, I would opt for PEGylated Interferon or possibly Ruxolitinib.

Do please stay in touch with the forum and let us know how things go.

[Polyruba in reply to hunter5582]

Hi hunter

I did have ET to start with. I had bad itching and always said I was tired I was having blood letting before hydrea tablets I was still getting tired on hydrea now not to bad depending what I do.The blood counts are at a good level now so it's not to bad. I do have a female partner and we have 2 children so not having any more.

[hunter5582 in reply to Polyruba]

As you were likely warned, do be very sure to avoid pregnancy as HU is teratogenic. It is also a carcinogen. Protecting your partner from exposure is important. HU does pass into semen, so condom use is recommended (found in some of the patient education materials). That and be sure that if your partner does handle the bottle, she wears gloves. Just as a point of reference, oligospermia/azoospermia is a possible side effect. It is not always reversible, though usually men recover from this side effect if they experience it. There is some evidence in animal studies and a few human case studies that HU can result in testicular atrophy (low T). This is NOT accepted fact and not in common clinical practice. When I was on HU, I did have my testosterone checked (it was fine). It sounds like you have had a more favorable response to HU than I did. Hope it continues to work for you.

I actually prefer the phlebotomy to HU, but we are all different in how we respond. FYI - Ruxolitinib is often the go-to medication when itching (pruritis) is a problem. It is reported to work better for this symptom.

Glad to have you in our group. Stay safe and well.

[piggie50 in reply to Polyruba]

Yes, I’m retired now, but my work never understood. We’ve all had the comments ‘ but you look so well’

[mark382]

Hi Mark had PV for 11 years. Managing on venesections and aspirin. Last year results were a bit erratic and double venesections and then not enough iron and red blood cells too small. Iron tablets for 2 weeks. Think back on track - haematoligist appointment end of May.

[Susana7]

Hi Mark, welcome.I also have PV. Diagnosed in 2014, started Pegasys interferon in 2015 and have been doing very well since, injecting only every 3 weeks and with normal bloods. Good luck! X

[Wyebird]

Welcome you are a seasoned MPNer. I found this site a life line enemy though it was a year after diagnosis.

[Hidden]

Welcome to the group

[Tylerdog1]

Welcome to the group. I was diagnosed JAK2 PV back in 2007 (aged 42). Have only been taking Aspirin and having venesections to keep it controlled until this year, when I’ve started having PEG Interferon injections. The symptoms I was experiencing have all but gone - only to be replaced by side effects from the injections - will be persevering for a few more months in the hope they subside. Good luck with your own MPN journey

[Tico]

Hi Mark. Welcome to the forum. I've had Etjak2 for around 12yrs now,accounted a few problems along the way but not to bad at the moment.I am sure you will find a friendly and welcoming group here and help you with any queries you may have. Warm wishes. Tina.🤗

[josup26]

Hi Mark and welcome. I was diagnosed with PV about 8 months ago. Always a shock to hear any kind of this news. At first I was in a state of shock and really didn't know what to do with myself. As time has passed I have the good fortune of this site that is so enlightening and has really helped me to understand life goes on. So far I am being treated with Phlebotomy this has been keeping my numbers good. However I realize that at anytime, I to may need the help of medications as well.

Stay on track Mark.

Regards,

Steven

[mhos61]

Welcome Mark. 🤗

[tracey13]

Welcome mark,

My husband started off with PV he was diagnosed in 2012 then in 2018 it had progressed to MF he was on hydroxy .

He's now on ruxolitanib and has a decent life style .

He works full time his exhaustion has eased with the ruxolitanib.

Try not to read up on too much as it was so scary for us when he was first diagnosed as you read about life expectancy , but medication has come a long way now .

Take care and stay safe

Tracey