Phlebotomy high platelets
Posted , 7 users are following.
Just saw my haematologist today. He's been wanting to put me on Jakafi, but my insurance turned it down. Right now, my platelet are over 1000 and my iron, around 6. My hematocrit is slowly climbing, now around 460. The problem is that I'm back to my tired state since my Dr doesn't like phlebotomies (I felt better with them).Does anyone have phlebotomies with high platelets? I'm 52 and have two teenagers so I don't have the Time to be tired, Can someone help me?
Marie
0 likes, 16 replies
paul250360 marie-jos6518
Posted
Hi Marie
The reason for phlebotomies is largely to reduce high platelets. l was a blood donor for 10 years before being diagnosed with PV. That was 27 years ago and basically my phlebotomies (every 3 months) are the same as when l was a blood donor. Only difference unfortuneately is they discard my blood !
i think you either need to speak again to your haematologist or seek a new one. Why stop a treatment that isn't overly invasive and makes you feel better.
l've never had Jakafi myself, just an aspirin every day.
All the best
Paul
keith28441 marie-jos6518
Posted
Phlebotomies alone can cause you to have high platelets,which is why your Haematologist is perhaps reluctant to carry out anymore at this time. Also 50% of PV patients can have high platelets regardless., Phlebotomies are primarily done though in order to reduce your Haematocrit levels. I used to have regular phlebotomies, which caused my platelets to increase to just under the million mark (988), but I am now on cytotoxic drugs, namely a combination of Hydroxycarbamide and Anagrelide. These better control both my platelets (which are now very much in the normal range) as well as my red blood cell counts i.e. Haematocrit, Haemoglobin and red blood cells themselves. I still require phlebotomies but these are now every 2 months or so as opposed to every couple of weeks. With your platelets so high, I would suspect your Haematologist will want to put you on some other form of cytotoxic drug if your insurance company won’t agree to the cost of Jakafi.
Hope this helps
Kind regards
Keith
Mimi2017 marie-jos6518
Posted
I understand why the insurance turned down the Jakafi. It is incredibly expensive and they don't really want to spend their money. Have you taken Hydroxyurea? That was very effective along with occasional phlebotomies for my husband for about 16 years. About 2 weeks ago, his doctor changed him to Jakafi and we will find out in 2 weeks if it is working.
marie-jos6518 Mimi2017
Posted
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
Scotslassie Mimi2017
Posted
B
peter98873 Scotslassie
Posted
Peter.
lijuan7002 Scotslassie
Posted
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.....
peter98873 lijuan7002
Posted
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.
marie-jos6518 peter98873
Posted
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
peter98873 marie-jos6518
Posted
You seem to have summed up your situation admirably. Hope you can get a happy solution soon. Good luck.
Peter.
lijuan7002 marie-jos6518
Posted
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
peter98873 marie-jos6518
Posted
Hello Marie-Jos.
I can understand your concern over high platelets but if it is any consolation, at one time my count was well above your current level, I have become so used to the bouncing levels in the past that I now leave it to the Haematologist to spell things out and act accordingly on the advice received. Seems to have worked well. I have four- weekly appointments and have been on Ruxolitinib (Jakavi in UK) for over two years now. Most certainly it has improved my treatment level and I generally feel a great deal better than when on Hydroxycarbamide which I took for a very long time. With the correct treatment your symptoms can surely be improved but I fully understand your situation in USA where drugs can be a major cost factor for patients. I have never undergone phlebotomy so you'll have to rely on comments that you have already received here. It is difficult to comprehend why you should not have phlebotomy treatment if you find it so beneficial. It could be your medical advisors are considering other options. Best have a word with them and see if they will reconsider.
Your quote "I don't have Time to be tired" explains your concerns well. Hope you get things sorted soon. Best wishes.
Peter.
marie-jos6518 peter98873
Posted
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
peter98873 marie-jos6518
Posted
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.
marie-jos6518 peter98873
Posted
Marie-Jos
peter98873 marie-jos6518
Posted
Peter.