I have always been under a certain amount of pressure to start meds for ET cMPL but have resisted up to now. I have had two high platelet counts in the last three years and my average count over the three years not including the spikes has been 590, I actually swing between 530 and 650. Just taking aspirin daily.
The two high spikes were 1-2 days after my seasonal flu jab.
The thing is, I feel so well at the moment and, as far as I can tell, my platelets are pretty steady. I have done a graph of all the platelet counts since Jan 2018 which clearly shows that they are above normal.
However I also have RA which can cause excess platelets, which may account for part of the count figure. I am already on Methotrexate for that
I am not in denial! I know I have ET but the thought of suffering even the most common side effects is anathema to me. Why should I contemplate taking medicine that will probably make me feel unwell, the whole idea of taking medicine is to make you feel better surely? I know there is the danger of a stroke but others on this forum have said that their doctors are pleased to have brought down their platelets to the same level as mine.
I also know ET can be a silent health risk if I don't take steps to reduce my platelet count at some time then there could be dire consequences eventually. So, my thoughts are that I should continue playing with my graph paper and if the platelet count starts to rise then to consider Interferon.
Also my haematology consultant didn't even know what the Pegasys pen looked like and if it was just a single dose pen. She said - I just prescribe it - Sorry?? Surely she should know these things? I think I may go for a private consultation with a specialist, if I can find one.
I do feel as though I am a box to be ticked, rather than someone who has an opinion about my own well-being.
So do I start Pegasys? What have others decided?
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Quercus53
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First of all, it does sound like you need seek out an mpn specialist. I have post Et Mf and have never been on Pegasus, so I can’t help you there. But I agree, if you’re feeling well, you probably don’t need more medication. Some doctors don’t do anything until the platelets go to 1,000,000. You just have to continue to be monitored and do what you’re doing by keeping track of your symptoms. Take care.
Hi thanks for your reply. I did check with my RA clinician and she looked it up and said that the methotrexate was ok to use along with Interferon. Although it may make symptoms a bit worse.
I see you’re considering consulting with Claire Harrison. I think that’s a wise move.
It’s encouraging that your rheumatologist has checked how interferon may affect your RA. However, getting an MPN Specialist input is vital too. I would imagine some liaison between your Consultants is also necessary.
<<Finally, there has also been interest in whether methotrexate could be used in MPN due to its JAK signalling inhibition properties, to date there have just been limited case reports and murine work undertaken, but this agent is widely available and probably merits further evaluation >>
So your RA medicine could have a further benefit. However MPL is less studied than CALR and Jak2 as I understand it and implications for INF are best discussed with the MPN specialist.
Hi, the opinions of different doctors is another thing that makes everything so confusing. One doctor here referred to "mildly elevated platelets" and my current one said I was high risk and should start medication immediately before I keel over!
Your dilemma is one that many of us face. Do the benefits of cytoreduction justify the intrinsic risks. The answer is not black and white. Particularly for someone who has a relatively low level of thrombocytosis and no history of thrombosis, hemorrhage or microvascular symptoms.
The standard protocol has been to initiate cytoreduction at age 60 (or 65) for quite some time. Not all of the MPN experts agree. Some do not use an age protocol instead looking at the individual profile of the patient. the MPN Specialist I see once said "65 is the new 35." I like that doc! The point is that we do not all age in the same way. It is important to consider how you have aged.
You are correct that you are already at the 600K target used by some MPN experts as the goal for cytoreduction. There is an increasing awareness that there is no benefit to making the platelet levels "normal." it is not about how many platelets there are. It is about how the blood cells behave. It is also about the connotational/secondary symptoms we experience. All three of the driver mutation (JAK2, CALR, MPL) dysregulate the JAK-STAT pathway. We do need to deal with the consequences of that, including systemic inflammation.
The two first-line treatment options for ET are hydroxyurea and PEGylated Interferon. HU is much cheaper, so many healthcare systems prefer to start with it, particularly for older patients. PEG is preferred for younger (age<60) patients due to the risks associated with long-term use of HU. Some MPN Specialists prefer PEG for all patients. This decision is properly yours to make. If you decide that cytoreduction is in your best interests, then it is your treatment goals, risk tolerance, and preferences that should drive this decision.
Do know that since you have RA, there is a caution regarding the use of any form of Interferon. This does not mean that you cannot consider it, but you would be at elevated risk for an autoimmune response.
In addition to HU and PEG, there are other treatment options, They include anagrelide and ruxolitinib.
As other have suggested, it is certainly time to consult with a MPN Specialist. Most hematologists do not have the KSAs to provide optimal MPN care. It is disconcerting that your doc does not even know how the PEG is available. For the record, it comes in two ways, a prefilled syringe and in vials that you use to prep the syringe yourself. it does not come in a pen. I use Pegasys currently. I prefer the vials since I can use the smaller syringe size, which makes my lower dose (45mcg) easier to measure.
Quercus53 interprated the quote correctly. We are now living longer and maintaining health longer than people used to. That, of course, all bears on the lifestyle choices we make and the healthcare we access. In addition, we do not all age the same. This is a function of both genetics, lifestyle and other factors.
The core of it is that the age-based protocols are a statistic projection of risk that does apply to large numbers of people, but may or may not apply to any specific individual. Individualized care is the key to successful treatment for MPNs.
Hi I’m currently on Pegasys for my ET. I started on 90 mg, firstly weekly (In answer to your other question you have to administer it via syringe into your tummy. I was given a sharps box to safely store the used syringes in. It has to be stored in the fridge too) As my platelets came down & remained around 300 I was moved to every two weeks then monthly & just recently 3 monthly as a trial to see if they remain around 300 or below. I still take aspirin every day. I have blood tests at the hospital and a phone consultation with my haematologist every 3 months to monitor my levels.
I suffered from bad fatigue when my platelets were high & I have an active job as a police dog handler so the decision was easy for me to try Pegasys as I was desperate to feel better so I could do my job. If you feel good the way you are then I guess it’s your decision what is best for you. There are side effects with Pegasys which again seem to differently affect people. I get flu like symptoms after taking mine so I’ve learnt to take it just before bed take paracetamol & sleep through the worsts of it, it normally takes me to 11am the next day to feel normal again. I inject it on a day I know I can rest the following morning.
It maybe if you take it for a while & it brings your platelets down they will reduce your dose like they have mine it is a very expensive drug so they don’t normally prescribe it unless they feel you need it.
We are all different and all get different severity of symptoms from ET so it really is down to how you feel so you do what is right for you. For me Pegasys has been fantastic at helping me get my life back to normal due to the terrible fatigue I suffered when my platelets were high. It’s given me a much better quality of life.
Hi Claire, of course it helps! I'm glad it has worked out well for you. My doctor here said I would start off with a three weekly injection but I am wary about even that.
Hi, I can assure you that for me the side effects of Hydroxicarbomide in the early years were way way better than platelets even over 400. Gradually my platelets went up meds went up platelets med etc. I eventually asked about Peg In June I started it. For me it’s a life saver. What’s 1 bad day ( just a bit sluggish) out of every 10 when for the other 9 I’m the old me😬. You never know what dose of meds you will require. Good luck
Thank you for your response. If I could be sure of mild symptoms like yours I would probably go ahead with it after Christmas but the Methotrexate could be a deal breaker! I'm going to try to get an appointment with Prof Harrison and put everything on hold until I've seen her
My platelet counts are very similar to yours I have ET, mpl, was on composite and HU, struggled with HU, switched to interferon. Started on 45, upped to 67 and from Monday 90 counts haven't dropped, hate taking meds for no gain other than feeling awful. I have asked for a referral to mpn specialist as feel haemo just ticking boxes. I was diagnosed as lockdown started so not the best time to push to see anyone but intend to going forward as so many on here say we are our best advocates. Certainly push for a specialist. Keep us updated.
I know how you feel about taking meds when you feel well in yourself. I have a busy life and go on unusual holidays which sometimes means getting up before dawn and not having hot water!! I can't see me doing that if I feel awful. Funny enough I also get the impression that there is a fair bit of box ticking going on. I am probably stopping everything from being neat and tidy but ultimately it is down to me and having all you lovely people pass on your thoughts and experiences is such a help. Hope you feel better soon xx
Hi, thanks for sharing your experience. There are others here who can give more experienced advice than me. Just know you are not alone. Wish you all the best as you proper help and treatment. 💚
Hello,I was in the same situation for years. But, I started to take Besremi two months ago. RA is an autoimmune disease. You have to choose. This disease is growing each minute and clones are growing too. What VAF do you have? Maybe it can decide your thoughts.
Variant allele frequency. NGS can quantitate the proportion of variant reads for a given mutation, also known as the VAF, which represents the percentage of tumor cells that harbor a specific mutation assuming a relatively pure disease like ET, PV, etc sample.
I can't find anything like that on my blood test printout.
Most people on this forum are either MENSA candidates or good at Copy and Paste! All these abbreviations and medical terms are extremely confusing and actually a little off-putting to someone like me, I'm afraid.
Note to self " Go on Amazon and buy a Medical Abbreviations Dictionary ASAP"
Merry Christmas and a Happy and Healthy New Year to all xx
You have received excellent advice on here. The only thing I would also emphasize is the need to see an MPN specialist if available. Most docs, and even most hematologists, are not familiar enough with MPNs to truly help us make the right, educated decisions. The good news is that a good MPN specialist will work with you to meet your needs. I imagine if you do not have a history of thrombosis and are feeling well on your daily aspirin, you might be able to maintain watch and wait. As others have said, it isn't just about a magic platelet number, but also how you feel and what is right for you.
The best thing to do is to be prepared, educated so you can advocate for yourself (this is a great site!!) and work with you MPN specialist and other doctors to create a treatment plan that works for you and meets your needs. The great news is that we have options!
Hi, as so many have already said here, if you can see a MPN specialist please do so. I was diagnosed with ET at 68 and now at 72 I have progressed to PV. From the many articles I have read, interferons are the only medications that can possibly alter the course of the disease which is a progressive course. I live in the US and the cost of Peg is around 5K per month if you can't get it covered by some type of insurance. I hear that in the UK it is available at no extra cost to NHS patients. The articles I have read say that the sooner you start interferon, the better it is long term. That is just what I have read, it is not advice. I would see a true MPN specialist and follow their advice, we have to trust someone.
Thank you for taking the time to reply. Yes, we are so lucky to have our NHS and I hate it when people knock them. However I am lacking faith in my haematology doctor so will find a real specialist as soon as I can.
How do you get to see a mpn specialist? My nurse just take’s my bloods then rings with my results. I was diagnosed in August this year and only saw a Dr. once when she told me I had ET MPN which is very rare.I’m not calling my nurse she is a gem but I just feel that someone who knows about this could help me more. I am prescribed Hydroxycarbomide of which I take 2 tablets 4 days and 3 for 3 days.I also take 1a day clopidogrel .
HiI have just made an appointment with a blood specialist in London at his private clinic. I rooted around on the internet, which wasn't too hard and gave his secretary a ring. I'm booked in for Jan 19th but could have had the 5th but had prior engagements.
I sent off all my blood test results for the last three years, so he knows what he's dealing with. I wanted to see Prof Harrison but all tel numbers I could find resulted in the dreaded answer machine telling me to try another number , also on answer machine!
Hopefully by mid January I will have a better idea about how bad my ET is.
You have to decide what would be best for you personally and not just take something the doctors tell you to because you feel pressured. You know your body better than they do. Good luck with whatever you decide to do.
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