Jak-2 level lower with Jakavi
Posted , 7 users are following.
Hello all
My doctor just texted me the results of my latest Jak-2 test. I have been on Jakavi since December 2017. The level of Jak-2 went from 38% to 18%. I believe it’s a good news, but I’m in the dark. What does it mean? Am I less at risk to develop complications? Hoping to lower the dosage of Jakavi, but I wonder if Jak-2 is the only indicator for the dosage.
All I know is that I feel great. Since being on Jakavi, I found the energy to take care of myself, started a weight loss program and lost 35 lbs. With Hydrea, the energy was just not there, I wouldn’t have had the courage to go through all this.
To everyone who worries when diagnosed, for me, my life took a turn for the best. Every subtil symptom of the illness is now under control. No more fatigue, itchy feet, migraines...
Thank you to everyone on this forum to be so reliable and informative.
Marie
0 likes, 16 replies
Zapamania marie-jos6518
Posted
Hi Marie-joss I'm so glad you're having good results with Jakafi. I'm not sure what the jak 2 level means. All I know is the allele burden. I'm sure Peter will know. The dosage level is based on your platelets, RBC,WBC and hematocrit. Your hematocrit should be 42 or under for a woman. I've been on Jakafi 20 months. My dosage is 15 mg a day. I believe Peter is on 10 a day. What is your dosage! May you continue to have success and your newfound energy. Zap
marie-jos6518 Zapamania
Posted
My dosage is 10mg 2X a day. All my levels are back in the normal range.
Marie
bill71415 marie-jos6518
Posted
I believe the alleles are the jak-2 mutant cells which are believed to trigger the marrow to overproduce cells, and if so then a lowere allele burden would be a good thing. I think there is a complexity possibly due to the size of the cells themselves, but I think that is the target of Jakafi - reduce the allele cells causing less red blood production. So congratuations, also on feeling better which really helps!
That's my understanding, so far.
Bill
peter98873 marie-jos6518
Posted
The readings you have been given refer to a reduction in the allele burden brought about by the introduction of Jakavi. The level is represented in % so the lower the level the better. The allele burden simply refers to the abnormal part of the JAK cell which occurs when the cell is first formed in two parts which is a defect in the cell. If the % increases this is where any progression is taking place perhaps to ET, MF etc. I have been prescribed Jakavi for well over 3 years now and can say that so far it has been inspirational in its effect. The abnormal part of the JAK cell is described as JAK2. So you now have a few answers to your query each giving the same solution.
It may well be that the dosage of Jakavi that you now take could be reduced in due course as readings improve.
Peter.
justin23294 marie-jos6518
Posted
I'm Very happy for you Marie. I wish I could try Jackafi. Even dough I have very few side effects with Hydroxyurea. I just checked with my prescription plan web site and the out pocket cost for Jackafi is over $3,000.00 per month for 15mg .Unfortunately it leaves me out. I have a question for you or anyone in this forum. In order to keep my platelets in normal range my RBC and WBC are below normal. My family dr. thinks that I have anemia and sent me to get a b12 test and came back normal. my hematologist says that it's the Hydroxyurea that is causing it and that I'm not anemic. I have noticed that if my platelets go above normal rang ,my WBC and my RBC go back up to normal range. Does anyone have the same problem with the RBC or the WBC?
justin.
Zapamania justin23294
Posted
Hi Justin, are you in the US. If you are there's help with Jakafi. Incyte, the mfr will give you a discount card, if you qualify. Also the PanFoundation.org will help. I think we all get a little anemic. I'm on Jakafi and was just told that based on our ferritin levels. I was told to add iron through food. Greens, meat, beans. We can't take iron pills or supplements cause it will affect the bone marrow. Zap
Zapamania justin23294
Posted
marie-jos6518 justin23294
Posted
My hematologist the hospital and I had to fight in order for the Jakavi to be accepted by my insurance. I am in Canada and have private insurance. Hydrea wasn’t so bad but fatigue was always there. Talk to your specialist and the hospital’s pharmacist, they could help
Good luck
justin23294 Zapamania
Posted
Zap. I did not know how to communicate with you private .I gave you my email address in this forum. I don't know if it was the right thing to do. I'll probably be bombarded with junk mail being that is public information.
Justin
justin23294
Posted
Zapamania justin23294
Posted
Hi Justin I don't know how to pm either. I did manage it with one member, but I forgot how I did it. 2 dopes, lol. I gave you the info about the help you can get for Jakafi. I'm on another forum which a lot of people have help, bringing their co-pay to $25 a month. This line is quite strict about emails and mentioning other groups. I'm on 15 mg of Jakafi and doing ok. If I can figure it out, I'll on you. Zap
justin23294 Zapamania
Posted
justin23294 marie-jos6518
Posted
Marie, Lucky you living in Canada and those living in UK when it comes to expensive drugs, In the US even with Medicare (Thank God for President Lyndon Johnson) Medicare is not allowed to negotiate drug prices with the manufactures as in Canada and Europe. I have Inquired from the manufacture about a price reduction. They tell me that I'm not eligible being that I'm on Medicare. Also in order to get help you pretty much have to be destitute. So. Here I am. Luckily Hydroxyurea is very affordable with my present Medicare drug plan. Out of pocket $9 for a 3 months supply (180 500mg capsules.)
Justin
peter98873 justin23294
Posted
Being in UK does nor automatically enable you to be prescribed expensive medicines or treatment. One has to be recommended by the hospital consultant who must make a strong case for the patient. In my own case it was due to the severity of Hydroxycarbamide effects upon me. I could no longer tolerate this drug and Jakavi was the only effective drug to take its place. Fortunately it had been recently introduced at the time and I was already a participant on the drugs trial, which helped. Jakavi is very expensive here too so the authorities will not issue their authority unless considered essential. I expect that in time this will improve as other treatments come into place.
Peter.
justin23294 peter98873
Posted
Thank you Peter for the information. As I understand drug companies are not allowed to advertise there drugs on tv in Europe like here in the US. We are constantly bombarded with ads on TV for expensive drugs.Ask your Doctor ,ask your doctor! I red that it costs more in advertisement than the research to make the drug. Its almost criminal the cost of the drugs in the USA. The same drug is half price in Canada. Millions of people in the US can not afford health insurance or drug prices. I'l never live to the day that we will have healthcare for all as in the develop world. Its a shame! The drug and insurance companies have enough money to buy all the politicians. As I mention in the past, We 65 and older have Medicare. Not free. But affordable . We need Medicare for ALL!
Sorry for my rumbling
Justin
peter98873 justin23294
Posted
There is undoubtedly much truth in what you say. Yes, the ultimate is to treat everyone the same and treat all as suffering from illness. Unfortunately, money is the issue. Best wishes.
Peter.