Phlebotomy high platelets

Hi,

I haven't taken hydroxyurea. My dr prefers Jakafi. He says that it helps to get better as hydroxyurea just treats the symptoms. He also says that I am not at high risk for thrombosis so I can still wait to be medicated. He will talk to Novartis the cie that makes Jakafi to see if they will give me the med for free.

All I'm asking is to feel less tired, whatever med that helps me with that will be fine.

Marie

I take Hydrea too and apart from my initial bloodlets I only have the occasional one....I was diagnosed over 5 years ago

B

Some people can take Hydroxy without being too affected or uncomfortable with it.  From my experience it is when taken over a long term that problems begine to arise.  It is like any drug, if you take it over a lengthy period the benefits you have gained decline, and then you require increased dosage to maintain the effect.  One of the difficulties is that in dealing with more general drugs as against a cytotoxic drug e.g. Hydroxy... , requires some professional supervision to ensure you take the correct dosage you require.  You are on a very low dosage from what you say, and that is excellent if that is all you need to keep things under control.  Any changes that may affect you should be discussed with your haematologist.  Do hope you stay well.  Best wishes.

Peter.

Hi Scotslassie,

There is a concern about the “time-bomb effects” of Hydroxyurea.  

HU can suppress the symptoms of PV – but also, it may lead to adverse health effects and it tend to accumulate in the body over a period of time, when the body cannot rid itself of a toxic substance which continually irritates the tissue where it has settled, a tumor or cancerous growth possible develop.

I think HU may not a good choice for PV.....

 

Hello lijuan;

I agree with much of what you say about Hydroxy and its long-term effect on the health of the patient.  Over the many years I was taking this drug I suffered considerably but was never diagnosed with any cancer or growth, but I suspect it could well develop that way.  I had some very unwelcome and serious side-effects which are still needing hospital treatment.  I do not wish to expand on how these affected me lest it cause unnecessary concern elsewhere.  Ruxolitinib (Jakavi) seems to have corrected much of the effects I suffered and is a more comfortable drug to deal with.  Sadly, it is not readily available to doctors to utilise regularly as it is still a new drug and some research remains underway.  Certainly if there was a choice this is the one I would choose but a huge factor is the cost of supply.  It is very expensive in many countries both in US, Europe and other parts.

Peter.

Hi Lijuan and Peter,

I tend to agree with Peter that Jakavi is a better treatment for PV, it aims directly at the problem as Hydroxy is a more general treatment. That is what my Dr told me and that is why, we, my dr, I and even the company that produce Jakafi, are still arguing with my insurance so they accept to pay for it. We had two rejects, but are appealing the decision. I, for one, don't accept that I won't have the best treatment available for economic reasons.

Marie-Jos

Hi Marie-Jos

You seem to have summed up your situation admirably.  Hope you can get a happy solution soon.  Good luck.

Peter.

There was one good piece of news last month, as it was about the new generation ropeginterferon alfa-2b (P1101) for PV therapy. The US Food and Drug Administration(FDA) has approved the experimental drug(AOP2014/P1101) for the compassionate treatment.

The clinical trial is designed to be as follows:

“Compassionate Use of Ropeginterferon-alpha-2b/P1101 for Treatment of patients stably controlled on Pegasys)”.

I think P1101 may a good choice for PV therapy in the future…..

best wishes and be well

 Lijuan

Hello Peter and thank you for your reply, what you are saying  about Jakafi is the reason my Dr chooses it over Hydroxyurea. He says that Hydroxyurea is cosmetic as Jakafi really works on the problem. It would be a lot simpler for him to follow the book and put me on Hydroxyurea, but I feel he considers me in the equation, I am 52, still working full time, active and the mother of 2 teenagers. He asked me what I knew about the 3 options (Hydroxyurea, Jakafi and Interferon) and their side effects and we, together, came to the conclusion that Jakafi would be better.

I'm in Canada, where we have universal health care and medication insurance, I also have insurance at work, but, since it's an "exception" medication (exceptionally expensive) I have to get an approbation before getting it. 

The reason we stopped the phlebotomies, from what I understand, is that they drag the iron down and when the iron is low, the body makes more platelets. They also makes my white blood cells go up (which put me at risk for thrombosis) and the red blood cells tend to get smaller, which is not good, but I don't know why. 

That is what I understand, feel free to correct me.

And thank you again, any information is welcome.

Marie

Hi Marie-Jos,

Thanks for your reply.  Hydroxyurea is now named Hydroxycarbamide in UK.  I took this as I intimated, for very many years.  Over time my dosage was increased to the maximum recommended.  It originally controlled my symptoms of PV very well but the increased dosage ultimately had an effect and I had to be taken of it with a massive dose of another drug.  A couple of months later I resumed Hydroxy but again i needed the same action again.

I suffered some very uncomfortable symptoms and I was offered the new drug of Ruxolitinib (Jakavi) as I was part of the research trial being conducted on that drug.  I did not receive the trial drug but was given Hydroxy again as the best available treatment at that time.   I was subsequently prescribed the Jakavi which I still take in small daily doses.  My symptoms have changed to comfortable and my blood counts practically normal.  Other patients have taken Hydroxy without too much trouble from the outset but I am not sure of  the length of time involved for them.  Yes, I had overlooked that you were in Canada where you have a different medical system to USA.  Cost in UK does come into the equation.  The comments by your medics seem similar to what I have come to learn here.  Platelets do need controlling and very often iron becomes a factor too.  White cells combat infection whilst red cells contain haemaglobin and allow oxygen to be carried through the body.  A  difficulty in the white cells can interfere with the immune system.  It is obvious that your doctors are interested in your situation inasmuch that they will discuss things with you.  Your blood counts need to be stabilised and that will make a heap of difference to your well-being.  Let us hope it will not be too long before you feel better.  Platelets assist blood clotting and are often referred to as blood cells but in fact are bits of bone marrow cells.   Given the option that now faces you, personally, I would much prefer the Jakavi treatment having been down that route myself.  

Your doctors understand your dilemma, that is certain.  Hope all this makes sense to you.  Good luck.

Peter.

Hi, I just got a phone call from the hospital, they contacted Novartis, the company that makes Jakavi, and they might put me on a compassion program that will provide me with the medication until it gets accepted by my insurance. Fingers crossed. I will keep you posted.

Marie-Jos

That has to be encouraging for you.  Let us hope it all comes to fruition and gives you the result you need.  It is not a miracle cure but a very good treatment from the results we know about.  Remember, Jakavi is a fairly recent addition to the drug programme and its long term effects will not be available just yet.  Certainly a big step in the right direction Marie-Jos and a welcome one for you.  Good luck.

Peter.