This has been posted on MPN-Net, not seen it before. Since every specialist seems to have a different viewpoint I’m not sure how reliable it is but definitely food for thought!
This Table published by Dr. Hasselbalch earlier this year summarizes the differences between interferon, hydroxyurea, Jakafi and anagrelide in regard to “impact upon clinical, biochemical, molecular, cytogenetic and bone marrow MPN markers and in regard to discontinuation rates due to toxicity and resistance to therapy:
I was diagnosed with ET in March 2016, put on Hydroxycarbamide, which brought my platelet level down, but in November 2016 started to get severe fatigue episodes. I was assured this was not a side effect of Hydroxy, but in March 2017 my haematologist changed me to analgranide, still getting fatigue so saw my doctor, who immediately detected and abnormal heart rhythym, so was admitted to hospital cardio unit, put on heart medication, for atrial fibrillation. Cardiologist was surprised that my blood pressure and pulse had not been monitored. Had another bone marrow biopsy, was re-diagnosed with myelofibrosis, medication change to ruxolitinib. Had a cardioversion in May , but correction did not last, so medication changed. Developed " shingles symptoms" early August 2017, re-admitted to hospital for cardio monitoring. Severe fatigue continued. Had another cardioversion end of September 2017 which worked well, totally changed my condition. "Shingles" rash has been very slow to fade.
My experience leads me recommend that anyone on hydroxy or analgranide should monitor their blood pressure and pulse, and insist on an ECG if they get severe fatigue. The side effects of these platelet drugs do not seem to be clearly explained or monitored. If I had not gone to my doctor I may not be here today.
I am glad that your cardioversion went well and you are feeling better. I hope that you continue to improve- you have gone through a lot.
I agree that anyone take HU (Hydroxyurea in the USA , but I think it’s the same medication you took?) or Anagrelide should be monitored very carefully. Anagrelide also requires a cardiologist on the team.
Thank you so much for sharing your experience and striking that cautionary note. I agree 100%.
I have PV and was treated since diagnosis in 2009 with daily aspirin and phlebotomies until late 2016 when my hematologist left her practice and I had to find another hem. I was feeling fine except for itching after bathing which had been worsening. I was taking cimetidine and having very brief cool showers every night and still itching afterwards.
The new hem started me on HU at 500mg, continued the aspirin and told me to stop taking Turmeric. I had consulted another hem initially who told me I had to start HU at once. I went for a second opinion because I didn’t want to take a chemo drug and because he scared me.
I was hoping to be placed on aspirin/ phlebotamy again. I liked the second opinion hem and went along with his recommendation- albeit reluctantly because I knew it could /probably would cause skin cancer and I had already had two removed. My hem said there would be no side-effects at such a low dose.
My platelets immediately dropped from 976 to the 400 level and I felt fine. Itching went away. But after a few months plts started to climb into the 600 level and HU was increased. I alternated 500mg one day and 1000mg the following. At that dose I experienced a Great Deal Of Fatigue, my toenails started to darken and one cracked, I had a burning sensation in my feet and my platelets plummeted to the low 100s.
Then my HU prescription ran out and I could not get a refill without a new prescription and I stopped taking HU for a few days.
When I saw hem a few days later I told him I did not want to continue HU at that higher dose. He was skeptical about my symptoms having anything to do with HU and dismissed my concerns. I then told him that my podiatrist recognized the foot issues as HU-related. Hem disagreed with the podiatrist’s finding. When I told hem that I was concerned about my plts being so low he said that people can function “very well” with single digit platelets.
At that point I told the hem that I wanted my treatment with HU to proceed more slowly and suggested resuming 500mg everyday with 1000mg once a week or something like that. He said “no that would not work” but he put me back on 500mg daily and said we could wait and see what happened and scheduled more frequent blood work.
That was about 7 months ago. My platelets have fluctuated but stayed within acceptable range. I have an appointment with him next month and I’m keeping my fingers crossed that they remain in range.
The hem has told me that he could put me on Anagrelide in the future if HU doesn’t work or if I don’t want to take it any longer. He says that it is not a chemo drug but that it has more side- effects- but not many.
I recently spoke to my cardiologist (I have a very minor heart murmur) about Anagrelide. She told me that for some people there can be significant cardiac issues with Anagrelide and that anyone taking it should be evaluated by a cardiologist prior to starting treatment and monitored regularly by cardiologist after starting it.
I’m very sorry you weren’t given that advice. Thanks again for warning us.
Here’s what I think. Managing MPN is a delicate, at times complicated process that should be a collaboration between patient and doctor. It’s my body after all and MPN is a scary diagnosis. So ideally, our doctors should possess patience, respect and empathy in addition to knowledge and expertise.
Ok, Andrew I’m almost done with all the talking but just one last thing. I’ve read online, heard from other people with MPNs and read MPN experts ( check out Dr Ruben Mesa at the University of Texas at Austin) that regular exercise helps with MPN- related fatigue. I know it may not make sense to address low energy with physical activity but it can work.
I know that daily 20+ minute walk helps keep my energy and spirits up. I try to take yoga also but walking is most important. Probably any regular pleasant, moderate exercise would do the trick. For all I know you’re a runner or some other type of athlete but if not, perhaps some type of regular exercise - after consulting your doctor of course- might help fight the fatigue?
Be well.
My very best wishes for your continued improvement.
Thank you Paul for posting this. I am on interferon so relieved to see its efficiency. But RUX looks very effective too. It may become the new top choice. I will have to research it more. I think I read it causes weight gain which would be a nuisance. There is lots of info on it but this comparison puts it into context.
There is also Ropeginterferon in trials which appears a promising improvement on PEG. The first results of the UK RUX trial for PV is due early 2018. RUX something of a scattergun drug and, whilst effective, is the stepping stone to more targeted JAK2 specific treatments that are hopefully in the pipeline.
IMO RG7388 (I posted link above) looks the way to go, this drug targets MDM2 which is overstimulated in JAK patients and impacts DNA repair. Combined with PEG (or hopefully Ropeg) this appears to have yielded very promising Stage1 results.
Targeted therapies sound the way to go and it is encouraging that research is now moving in this direction, thanks to improved understanding of the various factors impacting the MPN mutation
IMO RUX is good for slowing progression but it’s possible RG7388 could be a step towards ‘long term’ remission?
Thank you very much. This Is a very useful piece of information. It will take me a bit of time to figure it out but it’s very informative and will make it easier for me to talk about treatment options with my hematologist who tends to be dismissive of my concerns. Dr Hasselbach is a very well- respected expert on MPNs. His report cannot be dismissed.
Best wishes and a happy and healthy new year to you and to all our buddies in the MPN community. Lourdes
What I find most baffling about all this is the PEG/INF versus HU debate. A number of highly respected Hems strongly advocate early use PEG/INF, they appear absolutely convinced that this is best chance for PV patients to enjoy remission and reduce chances of MF. Furthermore this is based on over 20 years experience.
However there is another camp of equally respected, including Prof Harrison (who I reckon has to be at the top of the pile!) who are more circumspect. In part side effects (mood changes and thyroid) but also lack of clear clinical data.
I believe there is a PEG/HU UK trial at the moment but my understanding is only about one year’s data available. So far no much between the two.
I guess the problem is that we are a nightmare for hems. All different, all respond differently to various drug. How does the hem balance such factors as quality of life, easy of usage and risk factors such as reduced immunity and patients with pencils up their noses!
I was diagnosed with ET in 1999 at age 19, after having a blood clot in left leg. At first I was put on Hydroxy 4 capsules a day to prevent another clot (platelets were 1100 at the time) and stayed on various doses for about 6 months. Then my GP recommended to switch hematologists in order to be able to receive interferon because it is better for young patients. My GP said Hydroxy is prescribed because it is cheaper and since most people with MPNs are older it doesn't make much difference to their lifespan, but when it comes to younger people there is greater risk of developing skin cancer or leukemia because of longer use. After doing some research on US mailing lists (many thanks to late Robert Tollen) I switched to interferon and have been on it for the last 14 years continuously. I was offered Anagrelide but declined it because of some evidence it is increasing marrow fibrosis and I plan to stick with Interferon for as long as I can as I believe it is by far the best treatment option for ET and PV. I think more people should be made aware of beneficial effects of Interferon so they could make informed decision. I read about many people developing myelofibrosis following no treatment or treatment with Hydroxy but rarely following treatment with Interferon and I would be really interested to see some official research.
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