This trial is Ruxolitnib versus hydroxycarbamide or interferon as first line therapy in high risk PV.
I am 69 female diagnosed ET 2 years ago but diagnosis changed to PV 1 year ago. My worse symptom was pruritus which I had been plagued with since 2015. I was prescribed hydrea and ever increasing doses decreased the platelets; the other bloods weren't ideal but low enough to cause some fatigue. However, the itching continued to dominate my life.
With the Mithridate trial I had a 50% chance of being put on Ruxolitnib which offered a good chance of being rid of the itching. I took a chance, the chance being if randomised to stay on hydrea I was committing to 3 years and so wouldn't switch to interferon. I am very pleased to say I was lucky and got Rux and am now 1 month into the trial. The itch stopped within days, I just have an inflamed burning sensation over my knees which is negligible compared to itching. It has changed my life. Unfortunately, platelets are back up and low RBC and low HCT means I still hit a brick wall most days, but nothing awful. However, it is very early days, I am being monitored closely and feel I am getting very good care. I am hoping that my haematologist will be able to juggle the dosage and stabilize my bloods so I can continue on Rux and be rid of the itch forever.
Hope this information and the trial will help others.
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JP1952
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Hi JP1952, , your post resonated with me and will with many judging by the amount of times the dreaded itching has been up for discussion and anyone with an MPN who doesn't suffer with it is very lucky. It was the stand out symptom for me and I recall taking a shower not long after being diagnosed with PMF and suddenly being floored by this intense itching sensation all,over my body. It was virtually unbearable and I cried with the level,of discomfort. I likened to being bitten by thousand of ants.
From then on I took measures to reduce the chances of such another episode. Many years later I was put on Ruxolitinib and though it didn't work fully it halted the itching within a few days and twas bliss to take a long soak in a hot bath.
I'm very pleased you were in the 50% which opened the door to Ruxolitinib. I'm sure your life will be the better for it. Good luck with the trial. Please let us know how it goes.
Well when I was on it I really benefited for a year or so but only partially because it didn't shrink my large spleen. However it may of prevented it enlarging further. My love affair with Ruxolitinib came to an abrupt end because I opted to go to Transplant. It's always a bit of a balancing act when taking it as it can reduce blood counts but if you're lucky it can serve you well for a number of years. Other folk here have a much greater experience of being on it over a lengthy period.
I'm so pleased for you, as itching is one of the worst symptoms. For a while mine was so bad that I drew blood from scratching and still have some scars. I honestly think that itching is as debilitating as pain.
I can understand that if the trial is drug vs placebo since the method of administration would be identical, but as Rux is a 5mg tablet, HU a 500mg capsule and INF by injection It'd hard not to tell which one you're getting.
I think that would be termed a blind (patient not knowing) or double-blind (both patient and doc not knowing whether drug or control) clinical trial, rather than randomised which is just random assignation of drug or control
In a randomized trial, you know which drug you are on. I took part in the PT1 trial in 2001, comparing Anagrelide + Aspirin, Hydroxycarbamide + Aspirin and Aspirin alone. I was randomized to Anagrelide. In 2003 they withdrew Anagrelide from the trial as it had already been observed that it was less effective at preventing thrombotic events.
That's interesting and well done, you were an early pioneer in all this, I sometimes don't appreciate that many of you have been living with an MPN for many years and the trial you did benefitted me.
These posts just show how useful this forum is to learn about trials. I was on the same trial as you and knew of no-one else on it to compare notes with. I was randomised to HU which I'd been on for years but after a year at increasingly higher doses it wasn't controlling my platelets and I felt very toxic and had increased aggressive migraines they got permission from trial organisers to switch me to Anagrelide. Took quite a while for hospital to get funding and ethics permission but I was on it for a number of years until it was thought to have increased blasts and tipped me into level 2 Post ET MF. I don't regret taking part in trial nor donating samples from various BMBs.
I was very interested in your trial. It shows how far research has progressed since I was diagnosed with ET in 1985 (and had obviously had it for at least 6/7 years before that). Glad you got rux and the puritus has eased. I, touch wood, have escaped that though Anagrelide caused bad skin problems on my face. I'm 68 now, on ruxolitinib which has helped a lot of the symptoms plus regular EPO injections as anaemia remained. Fatigue and infections are biggest problems but very grateful to have rux.
Sorry, I didn't explain it very well. The aim of the trial is to test how safe and effective rux is when treating PV when compared to the best available therapy (BAT). One of the criteria for taking part is that the patient has been taking either hydrea or interferon within the last two years. So 50% of patients remain on BAT and the other 50% switch to rux. The treatment is chosen at random by a computer, hence, randomisation so everyone has an equal chance of getting either treatment. It ensures that the two treatment groups will be comparable and that the trial is as fair a test of the treatment s as possible.
Hi JP1952,I have PV and have been on Rux (lucky to get it on compassionate grounds) with the magic trial, for about 2 years, as I originally got the Hydroxycarbamide
Too cut a long story short, the itching stopped, the night sweats disappeared and my fatigue improved.
I am now on a cocktail of 25mg Rux twice a day and 500mg Hydrdroxy , platelets remain stable in the 500’s and other counts are good, there is no doubt in my mind Rux is the best available medication for PV.
I was diagnosed with ET in early 2016, and prescribed Hydroxy, but although my platelet count reduced to about 500, after about 6 months I was suffering with extreme fatigue episodes, changed to Anagrelide, which did not help, but found I had abnormal heart rhythm ( a known side effect of hydroxy ) also after another marrow biopsy re- diagnosed with MF so put on Ruxolitinib. Various heart rhythm medication and cardioversions have now given me a steady rhythm, but some of the fatigue has been reduced by regular magnesium supplements, so worth a try.
I noticed your mention of heart rhythm. I've had a return of palpitations since starting HU. I will have a full cardio workup soon. I've been told palps are not serious, but with our conditions everything gets interesting.
I get bad fatigue early mornings that actually wakes me up. (along with the head spinning, numb arms...)
From the posts here I got my Mg (and B12, C-RP) checked. All was good. I was half hoping Mg was low to have something to fix.
Would you say the Mg fixed your fatigue more than the Rux?
Did you ever have your allele% checked? I know in UK they are skimpy with this data.
My Dr suggested I consider Rux. (I have great blood counts on HU but bad symptom load) He was involved in some of the studies. One concern I have about Rux is its effect on immune system re vaxes. More than some of the other common therapies we get it can reduce vax response. He agreed. -- We in particular could be getting covid boosters for years until the virus is much more under control. So I hesitate to have Rux, at least ongoing at its standard dosing. But I would take it same as you are if it helped such a severe symptom.
I am interested in some of the studies that combine it with INF. I hope to discuss an option of limited time low dose Rux + long term INF. Rux can quickly lower your allele while INF does so more slowly and in a different manner. Later I would be on only INF. Possibly this could give each therapy its best angle. I am not aware of this as an approved or even common option however.
HiWhen people start Rux it is quite common for platelets to rise temporarily for weeks or months. I have PV , mine went up from 600 to 750 and slowly came down to 240; it can take time. If your reds are too low with PV it’s likely that your dose is too high, when I started Rux for PV in 2017 I asked a Rux expert about the anaemia I read about, he said not with PV, if reds go too low, lower the dose, that is not the same with ET or MF.
Thank you, that's really interesting. My haemo is not too worried about the RBC which is 3.14, but he is going to confer with the chief investigator of the trial before our next meeting in a month's time.
Hi JP1952 Thanks for posting this update here. This forum is very useful for us all to keep across these issues. Some interesting comments to keep us all on our toes. Best wishes
Find out your Vit. D oh level. Keeping the level above 50units keeps the cytokine storm diminished which can at least for me, stops the pruritis episodes. I'm 70 and had the dx 4 yrs ago and suffered terribly until megadosing to support my immune system from the COVID 19 tragedy. I also attribute the reduction of the itching to Vit. C and quercetin taken daily. I would rather refrain from the drugs as much as possible. I do take Hydrea 500mg, 3x/wk. No other pharmaceuticals except on occasion, anti- histamine.
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