Hello! Have been on hydroxy a year now and platelets are just beneath 400. I also have begun experiencing really nasty fatigue and wonder why ferritin the a not included in bloodwork? I have seen pretty low iron levels and will begin supplementing with follow-up test I had to request. Anyone else questioned this?
Wishing you all the best and happy 2023!
-Carla
If it has not already been ordered, you really need a full iron panel to determine what the status of your iron levels are. This will be needed to figure out the fatigue issue since it can be caused by iron deficiency or anemia or ET or hydroxy. In addition, hydroxy an cause anemia (separate from iron deficiency anemia). Note also that you can be iron deficient without being anemic. Definitely issues to review with your care team.
Hi Hunter
I know you have been on Hydroxy and therefore are knowledgable on that drug, I note you say it can cause anaemia, I wasn’t aware of that and wonder how that can happen , I thought the drugs ie HU,Peg, Rux reduce or eliminate anaemia?
Answering that question requires distinguishing iron deficiency from anemia. They are not the same thing. Anemia is a condition where the blood doesn't have enough healthy red blood cells. There is more than one type of anemia. Iron deficiency anemia is only one type.
"Anemia is caused by lack of Hemoglobin. Iron Deficiency is caused by lack of Iron. Iron Deficiency with Anemia is caused by both a lack of Iron AND a lack of Hemoglobin." ironology.life/blogs/news/y....
The cytoreductive medications ike HU, PEG, and RUX do no not specifically target platelets. they reduce the production of all types of blood cells, PLT-WBC-RBC. Note that the reduction in RBC production is why these meds are used to treat PV. These meds are not used to treat anemia since they would likely make the anemia worse.
Hope that answers your question. Please do be sure to review your status with your care team for a case specific answer.
that’s a pretty info I would say. The only two things I would add to that is that it’s too much HU that can cause anemia or if someone already has a lowish hgb, lots of people are on HU and don’t have anemia. The other point I don’t agree with is where you say Rux is not used to treat anemia, with MF Rux and possibly Peg can increase Hgb and is used for that purpose.
hi Hunter, how do I know tell if HU not working ? I have been in it just over two years and my counts Re RBC hct and platelets don’t change much I was to,d to take 2x 500 mg for one day but after 3 wk my WBC Re neutrophils went too low below minimum my haem never followed up so I stopped and went back to just 1x 500mgper day
I know the drug the gold std but I don’t want to get platelets from mid 400’s to under 400 just to then have no fighting white cells.
I have ET/ PV Jak 2 I take daily aspirin plus highn3 Zinc, tumeric, vit d no iron my ferritin low but my iron still sits 18-25 I’m a lifelong vegetarian so,also take b vit
I have trust issues Re hospital as my condition was hidden I had to self diagnose post a wee stroke and push to see a private not so nice haem
So I appreciate any pointers from your experience as I have an MPN appointment over phone with the only MPN specialist in our country.
I note 3 wk ago I had Hb at 150 and hct at .47 now this week Hb was 130 and hct .39 platelets low 400’s
My HB and hct never been that low since pre 2008 so either a mistake or something changed
Thanks
It sounds like you have not been getting very good care from your current providers. It is great that you can talk to a MPN Specialist. This should really help.
You can define a drug working in terms of efficacy and tolerance. Are you achieving your treatment goals? Can you tolerate any adverse effects that occur?
Treatment goals for ET include reducing risk of thrombosis. With a history of a stroke event this is very important. It is important to note that risk of thrombosis is not directly correlated to the number of platelets. It is more complex than that. There is no particular value to PLT<450 for many people with MPNs. Some doctors now use PLT<600 as the goal. silvermpncenter.weill.corne... Others are considering the delta (degree of change) as the most important factor. The key is that reducing risk of thrombosis, hemorrhage, microvascular symptoms, and other symptoms is the goal of treatment. The question for the MPN Specialist is What is an appropriate treatment goal for my case of ET and why should that be the goal?
Tolerance also matters in determining whether a treatment approach is appropriate for you. All of the medications used to treat MPNs can have significant adverse effects. "Hydroxyurea is a highly toxic drug with a low therapeutic index." American Society of Health System Pharmacists. Hydroxyurea is an antimetabolite (cytotoxin) that works by interfering with DNA activity in hematopoietic stem cells (HSCs) and other cells in your body. It is not selective to mutated HSCs. It affects them all. HU also suppresses all blood cell production, PLT, RBC, WBC. That is why the neutrophils and other WBCs can drop. Likewise the RBCs. Some people find that they cannot achieve their PLT treatment goal without an intolerable decrease in WBCs and RBCs and other adverse effects. Note that some more significant adverse effects are associated with long-term use.
drugs.com/monograph/hydroxy...
online.epocrates.com/drugs/...
rxlist.com/hydrea-side-effe...
While HU is one of the first-line treatment options for ET and other MPNs, many would not regard it as the gold standard. Many MPN Specialists have moved away from its use. The PEGylated interferons (e.g., Pegasys) are another first-line treatment option. There are other second-line options such as anagrelide and ruxolitinib, as well as medication in clinical trials. It is true that HU has been in use for some time. It is by far the cheapest, resulting in many health care systems preferring it at a first choice. Whether HU or Pegasys or another medication is the best choice is something to work out with the MPN specialist. Given your history, it is reasonable to think cytorection is indicated. The question for the MPN Specialist is What are my treatment options and what are advantages/benefits and disadvantages/risks of each option? Note that HU and PEG should both be on the short-list for you to compare as first-line choices. Suggest you learn more about the option of Pegasys and possibly other ET treatment options. You can use the above references for HU to look up PEG. In addition, these two articles may help.
mpnjournal.org/how-i-treat-...
legeforeningen.no/contentas...
Note that we are all different in how we respond to these meds. Some tolerate HU and benefit from it. Others do not. I am one of the latter. HU was not effective and I experienced toxicity even at very low doses. I have done much better on the interferons (Pegasys/Besremi). The IFNs are more effective and much easier for me to tolerate. That, however, is my experience. Your experience may or may not be the same.
We all need individualized care for MPNs. They are rare disorders and most doctors have very little experience with them. Optimal MPN care can only be assured by consulting with a doctor with MPN expertise. The best decisions are made when the goals are individualized to each patient's needs. The process that should occur is shared decision making between the patient and the provider. Ultimately, it is your goals, risk tolerance, and treatment preferences that should drive the decision. In order to be an effective participant in your own treatment, educating yourself is essential. Here is another resource you may find helpful. These trainings are excellent. mpninfo.org/conferences/202...
All the best.
The fatigue can also be caused by low vitamin B12. My haemo checks these levels regularly.
iron infusion gone wrong 
Pegasus, Hu and Iron 
Iron infusion with MF and on Anagrelide and Hydroxy.
Iron deficiancy
Iron intake
