I'd be really grateful for any guidance / advice on the following:
ET / JAK2 were diagnosed 10 years ago following a stroke (fortunately without serious consequences) and I was put on HU plus Aspirin. Amazingly I had no side-effects (apart from a 'rash' on my lower legs after about 6 years, a microvascular complication according to my haematologist who is not an MPN specialist). However I needed increasingly higher doses of HU to keep my platelets down to a level of about 400. (I had around 560 at the time of the stroke). In view of the toxicity of HU, I requested changing to Anagrelide (which here in Switzerland costs about 5 times the price of HU), as I'd heard that Anagrelide specifically targets platelets, and in my case it certainly did: they went down to 254! However after a year the various side-effects were too much for me, so I've been back on HU for the last 6months. I now have the choice between Jakafi (Ruxolitinib) or one of the Interferon treatments. My instinct points to Jakafi particularly as it's supposed to influence JAK2. I'd be grateful to hear from anyone who has taken this step, i.e. from HU to Jakafi. Additionally does anyone know if it's possible to go from Jakafi to an Interferon (in case I don't tolerate Jakafi)?
Many thanks in advance for details of any relevant experiences.
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Bodensee
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Note that we are all different in how we respond to the treatment options for MPNs.
I was refractory to and intolerant of HU. I transitioned to Pegasys then later to Besremi. The interferons have been more effective and much easier for me to tolerate.
If you prefer Jakafi and can access it, that seems like a reasonable option. Some people do better on Jakafi, but I do not have any experience with it myself. You can transition from Jakafi to an IFN if the Jakafi is not suitable.
Suggest that you review your options with a MPN Specialist who can best answer your questions in a case specific fashion.
I have been on all three drugs, HU, IFN, Rux. A switch from IFN to Rux is normally fine, but usually happens because something went wrong on IFN (I'm in this group.) But going the other way, Rux to IFN, I'm not sure any members with ET or PV have, hope to hear. But there's nothing I've seen for Rux that would hinder this switch. In fact they have been used together clinically and in studies for a potential best outcome for some.
All have worked well for my blood counts. I felt better on HU than IFN, one reason was my IFN dose was too high.
In a recent post there was some new data showing Rux had less reduction for PLT than did one or both of HU/IFN. (it did not specify)
This has been my experience, PLT is upper 300's on Rux at ~7months and slowly decreasing. IFN held it to mid-upper 200's. If this follows, you could be better with IFN, but as always, we're all different and this may not apply for you. The reduction can take time on either.
Re Jak2 mutation (VAF) reductions; Rux has only recently been shown quite effective here on average for PV. IFN is now well known for this benefit. So either may offer that result. But most the VAF studies are for PV while IFN with ET had less dramatic reductions. This is discussed in some old posts. (there are no Rux studies I know of for ET mutation levels)
Is Rux and IFN covered by your health service. They are off label for ET in most places.
Rux generally has more mild and moderate side effects, while IFN has more but rare severe ones. Two random Rux effects are weight gain and possible hair regrowth. I've had both, and in my case both are a good thing.
Though I have PV, I'm 10 weeks in the change from Hydroxy to Ruxolitinib. all is going well, counts are coming down, and no bad side effects- just slight weight gain and wind....
looking back it was perhaps not a good idea to overlap the two - but counts seem to have levelled out after dropping a bit too much....
Hello again, I really appreciate all 3 responses, thank you very much. These details have given me confidence to move forward to the next step!
Of course I realise the advantages of being treated by an MPN Specialist, but I haven’t found one yet in Switzerland, and treatment elsewhere would cause insurance issues… However I haven’t given up yet! My local haematologist would certainly be willing to work in collaboration with a Specialist - a kind of 'telemedicine' - which may be the answer.
Hi, there is an MPN expert at the Unispital in Zurich. I haven't been to see him myself (yet?), but I've seen him recommended in another forum. Their website lists the specialities of all team members.
Many thanks for the tip! I‘ve now looked into this and believe the MPN Specialist in the Unispital Zürich must be Prof. Dr. S. Balabanov. I‘d heard of him previously but wasn’t aware that he specializes in MPNs.
Perhaps one day we‘ll meet in his waiting room…???
I was diagnosed with JAK2 PV in 2015. When phlebotomy failed to control my platelets, I was put on HU. This controlled the platelets, but I developed skin ulcers and in any case still needed regular phlebotomy. In August 2022 I was put on Jakafi by a MPN specialist. After some initial anemia the dose was reduced to 10 mg/day. I have been on this for more than a year now, and my blood counts have been stable since then. Side effects have. been mild and manageable.
I am PV Jak2 positive, confirmed in Nov., 2019 and have been on Rux for a little over 4 years (now 74 yrs old). I was HU intolerant. Slow and low has worked better for me - currently 10mg twice daily. All my numbers except WBC have been in the good range for a little over 18 Mo; WBC finally hit high normal about 6 months ago. This dosing has worked well for me. I chose to be proactive about my care because I know my history in dealing with medications. I respond unexpectedly; therefore, caution is my response to changes in dosing.
Side effects for me have been minimal - namely weight gain and increased joint pain; not what I wanted but manageable.
Monitoring how you feel should be discussed openly with your doc. Question (politely) all information and recommendations. Be wary of any doctor who takes your questions dismissively or makes you feel less for wanting answers to questions.
Good luck - you can have a long, productive life with good care. We are all different and one size does not fit all.
Thank you very much, Barney, for your details. And I‘m sure you‘re right: it‘s important to have a good working relationship with the doctor and that he / she is on the same wave-length. In that respect I‘m very lucky!
I started on HU and was on it, off and on for a year. I had side effects that were difficult to ignore. I transitioned to Pegasys. I was on it for a little over a year. At the 6 or 7 month, I started having some pretty severe symptoms from Peg. I never got to a dose where it was fully normalizing my platelets, hematocrit or white blood count. I decided to try Jakafi.
I started on 10 mg of Jakafi 2x daily and had a phlebotomy. After 45 days, we increased my dose to 15 mg 2x a day. In 30 days we rechecked my values. My HCT was 41. Since I have PV, that is the value that my hem/onc doctor uses for evaluation. In the next 30 days my HCT was 41.2. My platelets are running in the 600’s to 700’s and white cell count stays around 14 to 14.5.
We are all different and we all react differently to our treatment. I wish you all the best!
I did stop the IFN and so glad that I did. I went a few weeks with no med and had 2 phlebotomies, then started Jakafi. The Sjogrens symptoms have subsided.
That is great news, Sjo is not often forgiving. I recall your post at the fateful moment last year:
"I have felt particularly bad this week. I had to call in to work on Monday. I slept all day until 3pm. Then was ready for more sleep at 7. The pain in my knees, ankle, feet, elbows and hands has been awful.
That all said, I am hesitant to take my Peg this week."
I wasn't hesitant enough and like you had no Dr to guide me in any way.
Yes. I really felt bad, then! I blame the Peg, entirely. I did just find out that I have a thoracic aortic aneurysm and severe cardiovascular calcification. I am just floored. I see my cardiologist this coming week, thankfully.
How are you? Are you still having Sjogrens symptoms?
I saw your post on the cardio troubles. I'm at risk for the aneurysm since my Mom had that so I ask Dr to check at check ups. Wishing you good treatments and outcomes. My mother did well with the operation ~20 years ago.
On the IFN, I took the other path on that Last Dose as you know. Its anniversary is next week- I will post some thoughts. With my preceding vax reaction I've got aggressive and life crushing Sjo that is not going anywhere. You dodged a real bullet and should feel well on the Rux.
Agree with Hunter that Jakafi seems a reasonable choice. And in theory, yes, you can switch from Jakafi to IFN. There are also clinical trials trying to combine both IFN and Jakafi in the MPN treatments.
So far what we know is that each medication has different strength. Jakafi does the best in terms of curtailing with symptoms especially enlarged spleen (more often seen in PV I believe), but the ability to control Jak 2 allele burden is not consistent. On the other hand IFN seems to be the drug to lower Jak 2 allele burden consistently and can be used long term as long as one can tolerate it. Both of them can normalize HCT, but IFN might need longer time to take effect and your body could require more time to adapt.
Ultimately this is a decision you will have to make together with your MPN specialist. Good luck!
I'm starting Jakafi on Wednesday. My doctor (who is a MPN Specialist) said I can try Interferon if I'm unable to tolerate the Jakafi. So, yes. I also couldn't tolerate Hydrea.
thank you for writing. I have ET Calr for 14 years now. My diagnosis was six years ago after my third TIA. I don’t know about Jakafi.
I was given anagrelide from the very beginning. I started having increasingly stronger palpitations with my heart, so we switch to HU but not more than two days because the neurological symptoms were so horrendous. I stayed on anagrelide since interferon was not in question because I had autoimmune problems Hashimoto. Since I did so much from my immune system, my MPN specialist said there is no problem for me. It was necessary to start law on the interferon, and at the same time slowly reduce the anagrelide. We did blood tests often to see what the platelets were doing.
14 months ago I started Besremi and since interferons often take long to start working, I slowly was able to reduce my anagrelide from four down to one tablet. 🙂 at the 10 month, appoint the interferon really kicked in, but then started having increasingly more problems with joint pain.
It got so bad that, finally, in October I had to stop. My platelets sides have been slowly climbing up again. Now that my joints finally settle down. I started interferon again just last night. This time, only 50 µg instead of 200. We are testing this out.
If the Besremi is problematic again, then we can maybe try the Pegasus. There is still hope.
Thank you for so generously sharing your long and difficult journey with ET Calr. I do hope that your new start with Besremi will be successful. (From what I understand many are in favour of a low-dose approach as you are now taking). And as you say, there are also other options.
I‘m new to this Forum, but it has already become clear that we all react in our own individual way to the various treatments which are available to us. I believe this could be at least partly owing to the 'burdens we already have in our rucksacks as we start out on the MPN hike'. (Not very scientifically expressed, but I think the meaning is clear!) I had taken no previous medications so there was no conflict with HU. Even now after 10 years I have no real side-effects from HU but it’s not working as well as it used to and I‘m reluctant to increase the dose (at present 9g per week) any further.
Very well said. My backpack was very full and I’m still unloading it, step at a time from all chemicals, GMOs, intolerances, food additives, sugars, grains, dairy, cosmetics, negative thoughts, negative people,…. I have managed to modulate my immune system and I’ve reduce my 4 colds/bronchitis/sinus infections per year to just 2 colds in 6 years and one Covid infection. 😃
No more fatty liver, eczema, depression, histamine intolerance, body/mouth oder, teeth plaque, panic, anger, 60% less thyroid hormone,…
The MPN hike made me realise, all that which I was carrying. ET is still there, but I have a life again! 🙂
May you and your doctor make the right decisions. Don’t forget that interferons can actually help get this illness into remission. They are worth a try. The earlier you start, the better the chances.
Please don’t worry! As I‘m new to this Forum and not familiar with the procedures, I didn’t really notice anyway. However I was very sorry to read about your cardio problems, so a good opportunity to wish you all the best for the surgery which lies ahead of you: positive thinking can work wonders!
I have PV and switched from HU to Jakafi, primarily in order to deal with the itching symptoms, which were dominating my life (HU had gotten my blood counts under control but was doing nothing for the itching). Jakafi worked on the itching, and after 2 years has also reduced my allele burden from 60% to 25%. It was a bit of trial and error getting the dosage right at the beginning but I have been stable at 5 mg in the morning and 10 in the evening for many months. No side effects from the medication. Good luck!
Jakafi provides good temporary symptom relief, but like HU and anagrelide, doesn't slow or stop disease progression. So in the long run an ET patient taking Jakafi faces the prospect of progressing to post ET myelofibrosis and suffering its associated heavy symptom burden.
Some of us are profoundly afraid of progression since there's no turning back once it occurs so we choose interferon to give us the best chance of avoiding progression.
Thank you very much for raising this important consideration.
By coincidence EPguy posted information today on Metformin used in the prevention of Long Covid to which Solyesh replied mentioning a study on its potential together with Rux for 'multitarget antileukemia activity in MPN'
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