I am now one year into the Mithradite trial and thought a good time for update.
The Mithradite trial is a randomised trial of Ruxolitnib against best available therapy which is either Hydrea or Interferon.
My background is diagnosed with ET three years at age 67 and prescribed Hydrea. The Hydrea reduced platelets but I was cursed with the unbearable itch. Rediagnosed with PV one year later . Started the Mithradite trial one year ago in the hope I woul
d be allocated Rux , had 50% chance. I was allocated Rux. The itch disappeared.
I tolerate Rux reasonably well. Had dizzy spells at the start, gone now, always have a dry mouth, gained a few pounds. but not surprising as the fatigue has hit me like a sledge hammer. I take 20mgs per day, the 30 mgs took my blood counts so low I struggled. But I don't itch.
My latest blood tests , Hb 108, PLT 508, RBC 3.62, HCT .35, red cell distribution 6.5. BMB showed Reticulin grade 1, I have no idea what that means but the bloods have improved as I was bordering anaemia for a while.
I seem to have swapped the itch for the fatigue but I'll take the fatigue any day over the itch.
To sum up I'm happy with it. Although I don't enjoy my former energy I manage and enjoy a good walk every day . I don't post here very often unless I feel I can help someone because I don't want my life to be consumed by illness but am happy to answer any questions I can about my experience with Rux and clinical trials.
Best wishes all.
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JP1952
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Thanks for the update, that trial is very important, and should give some great long term answers,
Reticulin is fibers in the marrow, it goes from 0 to 3. 0 means a few normal ones, 3 is too many. These fibers are the "F" in MF. I had 0-1 in my BMB. With too many they get in the way of marrow function.
Thank you for this JP. Yes it really is helpful and I have saved your post.
Last week, at my latest consult, Ruxolitinib was mentioned for the first time as a possible continuation after (?with) Peg as my platelets aren't going down much after a little glitch following a lot of this and that.
I have never had much in the way of symptoms or side effects other than the FFF - fatigued, frail and feeble - although there is the balance issue. Jury is still out on that and I am waiting for an appointment with the Fall Prevention Team. So no change for now to 45 mcg every second Friday on Black Binbag Day.
And at my age ( 80) I enjoy the frequent rests as much as whatever I can achieve as long as the energy lasts.
for the fatigue, I take 100mg of a good natural form of CoQ10. We need it. I started on a lower dosage and went up. Some of us are taking 200mg a day. The CoQ10 helps the batteries of every cell in our body have more energy! Good sources are more expensive, but better. Best source I found is an English company Terra Nova. Amazing. I had it shipped from England to Austria before, since brexit, I buy it here.
Also I take between 1000mg and 2000mg of Acetyl L-Carnitine every day. It’s an amino acid which helps our cells process our nutrition better. I don’t just have my old energy back, I have the energy of 15 years ago. This can be taken for a looooong time. To test I started at one capsule 500mg then went up. This also helps against dementia. The L-Carnitine doesn’t.
The itching was hell. The tiredness is also not good for us. It is so important to work against the side effects which also harm us in the long run. Then we have a more comfortable life and are also healthier. 😀
if I remember correct NAC is just further up the tree and converts to glutathione, giving the same result, would you agree , its some time since I studied the subject
it’s good to hear Rux nailed the itch, I was a Olympian itcher pre UVB and then Rux.
I note you mention low Hgb and Hct , normalish platelets but no whites. It seems you are on 10mg twice a day. You don’t mention how long you have been on Rux. I mention these things because I found with Rux for PV my platelets were the slowest to come down, in fact they rose more initially (very common). Whites came down first and then reds.
I wonder if you and your Haem have considered tweaking the dose a bit. I am on 20mg +17.5mg,, at this dose my Hct can dip under 40 which is a bit low for me as a man, so sometimes I drop this down by 1.25mg for a month and my Hct will go up to 42 and then I can go back to 20+17.5 mg. If you cut a 5mg tab into quarters you get 1.25 mg. I was sensitive to dose increases (almost unheard of) so I started at 2.5mg twice daily and increased it by a eighth of a 5mg tab ie about 0.64 mg every few weeks until current dose.
I have done this for 5 years and it works, most haems and pharmacists have a bit of a fit when I tell them but they know from my counts it works. Of course on a trial you may have more restrictions. Seems like your dose maybe bit too high for you, you may be better on 10+7.5mg or 10+8.25. Expert haems are okay with splitting pills,I cleared it with Dr V at MDA before doing it.
My platelets kept coming down slowly even at the same dose, so yours may do same giving you more leeway to reduce dose. When I drop the dose by small amounts the itch doesn’t increase for me.
Thank you for your response, so interesting how you've managed to perfect the correct dose for yourself.
My WBC is 5.6
I have been on Rux for 1 year when I started the trial and before that I was on HU which was very good at reducing my platelets and other bloods but did nothing for my itch. So when I switched to Rux 20 mgs per day the platelets rose but haemaglobin continued to fall. To lower the platelets the dosage of Rux was upped to 30 mgs per day and although it lowered the platelets my haemaglobin dropped to 80 and I was wiped out so dosage back to 20 mgs per day. The haematologist wants to keep the haemaglobin above 100 and the platelets below 600.
So I feel it's still early days for me in the Rux journey but I might mention your suggestion at my next appointment.
I looked on my spreadsheet of the history of my dose and counts and in May 2018 my platelets were 600, in May 2019 they were 409 and in Jan 2020 they were 355, during those years I was on steady dose 12.5mg+10mg so you can see how the platelets came down gradually despite same dose. I have PV which may or may not make it different, early days perhaps.
Sorry, I just reread my post and I didn't make it clear I have taken Rux for just one year. It does appear that it's a slow burn for platelets and more speedy for other bloods. However, I shall be forever grateful it fixed the itch almost mmediately.
Glad to hear things are going well. Thanks for volunteering for this study. It is the only way things move forward. I suspect you would experience less fatigue if your HCT was just a bit, but not too much, higher. HCT < .36 = anemia for a female. Managing PV treatment is always a balancing act. Suggest you review the target ranges for your treatment with your care team. My care team set the range of .40 - .45 for my target as a male.
Thank you Hunter, your input is much appreciated. My haematologist is aiming for Haemaglobin over 100. Apologise for my ignorance but is there a direct relationship between Hb number and HCT number? If so what should the HB number be to achieve desired HCT?
What an excellent question. Yes there is a relationship as increased HGB correlates with increased HCT. The approximation is that 3xHGB = HCT. That is just a rough approximation as HCT is actually a rather fuzzy measure. That is why some docs prefer to use HGB to monitor.
Thanks again for volunteering for the clinical trial.
HCT is a combination of MCV and RBC, both numbers are in our blood count tests. So HCT is from these two separate numbers, and is not actually measured.
Hb is directly measured hence Dr preference for it. In my CBC results at Dx two different labs got same Hb result, but HCT varied.
Unfortunately there is no large trial that tested HB vs our risks while there was for HCT, accident of history my Dr says.
Thank you so much for information. Have just read the report about Anaemia and found it easy to understand. As you say I am constrained with what I take due to the trial but equally the trial requires me to report all symptoms, side effects, and my general well being . It's lovely that so many of you have thanked me for participating and I do think clinical trials are important and necessary but I have to say it is no hardship. I have excellent care and I have benefited enormously.
I haven't been very involved in learning about MPNs recently because it does overwhelm me sometimes but this chat led me to look at previous threads re Rux and research. I realised so many of you have been doing this stuff for years - 9 years ago Rux was being trialled for MF.
it's incredible you continue to offer help and support.
a good place to mention another trial we've discussed that is going on for momelotinib,the jak inhibitor which reduces the anemia that can be associated with Rux.
I'm on Jakafi, which my (private) insurance used to pay for. Now I'm on Medicare and it's very expensive. Before I started, I was on HU and needed Atarax (hydroyxyzine) as well as phototherapy for the itch. Sigh.
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