Hi All,
I wanted to fins out how old you were when you got diagnosed with PV as i am 27 and started a month now on Hydrea but my bloods were good but seem to slowly rise again, she said she want
to increase my dosage as i am not happy about that . does this get easier _ who can help me and talk me through this ? I do not know what to do
I am also a vegan so dont know how else to be healthier
I was diagnosed with ET about 30 years ago. It progressed to PV about 7 years ago, but my old hematologist missed the progression. That doc was not a MPN Specialist. My care tam now includes a doc with MPN expertise. Many hematologists do not have the expertise to provide optimal MPN care due to their rarity, Very important to add one to your care team. Here is a list. mpnforum.com/list-hem./ .
Regarding your care plan, may I ask why you opted for HU rather than the other treatment options? Many people with PV at age 27 would do fine on phlebotomy/venesection + aspirin. For those who need cytoreduction, PEGylated Interferon is usually preferred to HU for younger patients (age<60) due to the risks of long-term use of HU and concerns about its use in people of child-bearing years.
There are too many factors to really answer you question. Suggest you get a second opinion from a MPN Specialist before you make any decisions. Meanwhile, here are a few references of interest.
legeforeningen.no/contentas...
drugs.com/monograph/hydroxy...
ncbi.nlm.nih.gov/pmc/articl...
Just in case this was not reviewed with you
ethrombo.blogspot.com/2017/...
Hope that helps.
I was 47 in 1992 when first diagnosed with ET (30 years next year). Started on interferon for 9 years then aspirin only until 2006 and have been on Hydroxy since then.
Hi there, I was diagnosed with PV at age 50 and was on daily Asprin and Venesections until 2019 at which time due to increasing symptoms my Haemo started me on Hydrea firstly one every other day of 500 mg. Since then I have had two increases and am currently on 500 mg daily which is still a relatively low dose.In your own case I would certainly look into seeing an MPN Specialist or at the very least get a second opinion. At close to 65 I was wary of going on Hydrea although in truth I am tolerating it very well and it has made a huge difference to my daily life. 27 to me seems very young for Hydrea and I would try to pursue other alternatives unless absolutely necessary, again I would urge you to get a second opinion on this.
Wishing you the very best of luck and keep safe and well.
Garry
Hi Gary,
Thank you for your reply. I did venesections once a month but i have become iron defiant and my hematocrit was rising too 50 fast which this is my 3rd Hematologist and she is at Donald Gordon in SA which is rated the best and she is also a surgeon + Ex CEO OF SANBS so i think she is good.
Do you feel pins and needles after you eat meals and like hot flushes ?
No, happily I have not experienced either of these symptons. The main symptoms I have had are fatigue and bone pain both of which are much improved since my last increase in Hydrea.
What is a MPN Specialist
A Haemotologist who specializes in the treatment on MPN's.
I was diagnosed with PV in Feb of this year. I am 38 years old and was put on Hydrea right away. I now take 1000mg x 7 days a week. I trust my specialist but I also worry about the long term effects this will have.
thats how i feel, she did say i m the youngest person to have this and now i may have to increase to 1000mg a day .
Im based in SA
I’m based in the United States. The first few months were hard on my body and took a role mentally. My body has since started accepting the meds more and I’ve even been able to start running again. When I was diagnosed it was because of a pain that was in my upper abdomen that was later identified as a blood clot...well actually 4 different blood clots but only one that’s been a pain.
Hi , I am not a patient but the parent of my son who was diagnosed with Jak2 polycythemia Vera aged 14 , he is now 18. He had several small strokes and when his platelets > 2000 he started to have bleeds , some difficulty getting things controlled initially . He did not respond at all when put on Pegasus interferon despite being in the highest dose . He has had multiple venesection , we lost count after 50 and now has one every 6 weeks . He is now on hydroxy 1000 mgs of and aspirin.He lives a very normal life , starting University in September, plays football and does not let his condition define who he is. Other than his regular appointments he does not let this rule his life . It will get easier, allow yourself time to absorb all thus new and frightening information. Get a good haematologist , a MPN Specialist is a consultant who specialises in conditions called Myloproliferative Neoplasm which polycythemia is one of these MPN. Once you understand and adjust to managing your condition it will be one the new normal but you can take ownership of your health. Just allow yourself to adjust first . Wishing you good health . Kind regards , Christine
thank you for this feedback, wow i thought i was young .
So he takes 1000mgl and he has no side effects ?
I have ET and agree you need an mpn specialist. I took the advice of those here and other forums I am on for mpn's. My hemo had me on 1500 hydrea a day, went to an mpn specialist and he has me on nothing as I am considered low risk for clots based on three things, age (under 60), mutation I am CALR (not JAK2), and history of clotting, I ahve none. My hemo did not know any of this, her training told her to get me on hydrea right away since my platelet count had been 1000 for 5 years at least. Another thing is with technology an mpn specialist can work with via zoom after your first meeting, mine is at the Cleveland Clinic in USA and I am moving to New Zealand in June, he will continue to do my care twice a month from there and I just have to get a hemo to order the blood work.
I was 48 , in time dosage Will increase but can be combined with phlebotomia and drinking water 2l or more daily.If you are vegan is better in my opinion . Regards, CATA
I’ve been on hydrea for over a year now I have et jak 2 pos my plates have been up and down all the time hemo doc said if they don’t go down in may then I’ve got to take more hydrea at moment on 1000mg a day don’t really want to have more tablets so will wait and see it’s not easy having this as well as aches and pains
A few notes about platelet numbers with ET.
"Some clinicians target a lower platelet goal for cytoreductive therapy. In fact, ELN response criteria includes a CR as a platelet count of <400 x 109/L, in addition to a leukocyte count lower than 10 x 109/L (13). A retrospective analysis challenges the utility of achieving these strict response criteria. In this study, of the 166 patients with ET treated with hydroxyurea, 134 patients (80.7%) achieved a CR. However, there was no difference in cumulative incidence of thrombosis in patients who achieved a CR versus those who did not (14). In addition, there is no association between platelet count and thrombosis risk, challenging the importance of targeting a specific platelet count with cytoreductive therapy (70). Thus, the clinical importance of achieving an ELN response in ET is uncertain at this time."
frontiersin.org/articles/10...
From Weill Cornell Richard Silver MPN Center - another view.
Recommendations:
1) Routine use of low dose aspirin (100 mg/day). *
2) Platelet lowering drugs (so called “cytoreductive therapy”), for patients felt to be at higher risk for clot (age > 60 years, or history of prior clot) or bleeding (platelet count > 1,500,000, or current abnormal bleeding).
a. A target platelet count of ≤ 600,000/mcL is often used for patients treated with cytoreductive therapy. (J Clin Oncol 8:556-62, 1990: NEJM 332:1132-1135, 1995)
* Exception for patients with history of gastric ulcers or other reasons to avoid aspirin.
silvermpncenter.weill.corne...
With HU, like all meds, you have to weigh the risks vs the benefits. If you are symptom-free, then it is reasonable to evaluate whether the increased risk of HU toxicity is worth the putative benefits of an increased dose. Ultimately it is your choice about what is in your best interests. There is no "got to" take more meds in this decision. It is an evaluation you make in consultation with your hematologist. If you are uncomfortable with the decision, then it is reasonable to seek a second opinion. If your current doc is not a MPN Specialist, then a second opinion would be essential. mpnforum.com/list-hem./ .
Please note I am not trying to say whether you should or should not consider an increase your dose of HU. Just that it should be a considered decision based on an evaluation of your actual risks and symptoms, not just a platelet level that may have little to do with your actual treatment needs.
Side note: "aches and pains" and other constitutional symptoms are related to the JAK2 driven changes in our bodies. At the core, MPNs are inflammatory disorders. Controlling inflammation is an important part of MPN treatment,
Hi,I was diagnosed with ET almost 30 years ago. I started hydroxyurea 15 years ago after having a TIA. I have tolerated it well so far except that recently my white count has been low. I agree with the recommendation to see an MPN specialist. I am moving in two months and think that I will do the same. MPN stands for myeloproliferative neoplasm. Hang in there!
Hi, Pegasys interferon is normally the first line medicine for younger patients as it is not chemo. I would inquire about this if I were you. I was diagnosed at 50, and started Pegasys after one year on aspirin only. I have been on it for 6 years and it has stabilised all mt counts. See this recent review article on the effectiveness of interferon treatment: res.mdpi.com/d_attachment/c... and also practiceupdate.com/content/...
Best of luck! X
Ia am Jak2 +ve diagnosed 2018 aged 47. Started HU a year later due to very high platelets. Over past few months reading other people's experiences I wonder why I was started on it, and why no.other option was given to.me. . Good results though on it but concerned for the future. X
Tea and chocolate while taking Hydrea?
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