I was recently diagnosed with ET and have Googled the subject extensively (as most would do) I felt quite confident with the knowledge I acquired until the reality of taking the proposed treatment sunk in. I have been told by my consultant that I will commence with Interferon in a few weeks.
It was at this point that the penny had dropped (that I do have an illness) and, without outwardly showing it to my family, have become extremely anxious. I am self employed and am really worried that I may not be able to work and support my family when the treatment commenced(side effects) I am 51 years old so not yet in a comfortable financial position at all.
I was hoping that some of you guys might be able to share your experiences on Interferon so I know what to (possibly) expect.
It sure feels isolated as, like most of you, I’d never heard of MPNs before I acquired one.
Thank you so much for reading.
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Threelions
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You are self-employed. Do you control your work schedule? I started Pegasys last December at age 69 and benefit from being retired. If I don't sleep well or feel fatigued I can just lie down. Even so, most days I swim 30 minutes. I am probably on a heavier dose than you will start out on. A lighter dose may quickly bring your platelets under control and that may be all you need as an ET patient.
I have a long list of side effects which I consider manageable. They became easier to deal with over time but I look forward to the day when my injections can be spaced out. You will not know how interferon affects you until you start. I remember finding it very difficult to sleep the first night and I attribute this to anxiety and being hypersensitive to external stimuli. This is my mind interacting with the drug. Try to relax. Many people find Pegasys to be a blessing. It may help you in the long run to support your family.
Thank you, I do run my own work schedule but, in a strange way, I’d considered that a hinderance as I work many more hours than I would if I kept “employed “ hours. I don’t have support and work alone. It would be very hard to take any time off. As you say, the medication may help me to continue work in the long run.
I started Pegasys (peg interferon) Dec 2016. My experience, Interferon was far easier on my body compared to venesections. I take my weekly injection on a Friday or Saturday evening, that way I can have a lie in if I need.
Hydrea, I believe, is a more common drug with aspirin. I have ET but never interferon. Many of us do very well on Hydrea and continue to work. Maybe ask your doctor about it?
I have ET also, diagnosed at 52 and also self employed. How high are your platelets? What were your symptoms when you got diagnosed? I was on hydrea for 11 years. I’m just wondering why your doctor is starting you on interferon.
Well I’ve never had a tia so our profiles are very different. It sounds like the other respondents have had more experience with interferon and that you have gotten some good advice. I hope you feel better soon.
Morning, so I was on Hydrea for 2.5 years... It got my condition (PV) under control but it made me feel real bad, I could not function normally and was sooooo tired mostly. I've been on interferon for 2 months now and I feel amazing, like superman compared! No more tiredness AT ALL where I used to sleep every afternoon for 2 to 4 hours and feel like a zombie afterwards. I prefer interferon over Hydrea any day! Btw, I am a bodybuilder and do very strenuous weights for 2 hours every day. On 1.5g Hydrea it was very hard, but on 180 peginterferon it is a joy. But everyone is different, hope it works well for you and that you feel well on it. Positivity as always is key!
One more thing... I did get a local injection site reaction for one month when I stated interferon. Emla cream helped a heap when that happed cause it was super itchy! Yikes! But after a month the reaction stopped and now I just have a small, about inch wide, red blemish where I inject which goes away after about two or three weeks.
Hi I started on Pegasys interferon a couple of months ago and I now inject 90mcg fortnightly. So far I haven't had any side effects to worry about and at my last hospital appointment the platelet count had dropped significantly. I'm also self employed and need to carry on working so I know what you mean. All I can say is give Pegasys a go as it is well tolerated by most people. Good luck!
I’ve been on interferon for 12 months, very few side effects. I’m 44, have a very busy and fairly stressful job, but haven’t needed a day off yet! I’m also on beta blockers due to portal vein thrombosis , and I do get tired / fatigued sometimes...I think it’s more the beta blocker than the interferon though. I felt a bit fluey for first few weeks of treatment, but taking it at night with paracetamol did the trick. No side effects at all now.
If you have health insurance with critical illness cover, it should pay out (mine did) so could ease some of the financial burden long term.
I am 56 year old male and been on 45mg (low dose) Peg for nearly 2 years. Early on I got a bit of muscle aches and tiredness. But easily dealt with by taking a couple of paracetamol. My platelets are right down and I don't really notice any side effects. I cycle to work, I work full time in a busy IT job and have not had any time off work since taking Peg. For me it's been all good. However it's a different experience for each person. I would advise you to not think about it too much and see how it goes. I think being positive is massive and if you approach things with a positive frame of mind then issues are not such a big deal. To be honest if you get offered Peg that's a good start because it's expensive and not offered to all patients. So think of yourself as being lucky to have the opportunity and go for it.
Well welcome to the club, though it is not one any of us particularly wanted to join. As you have already found, MPNs are rare disorders and it is a relatively small club. The good news that there is promising research and newer models of treatment emerging for all of us with MPNs. The not-so-good news is that due to their rarity, most doctors, even hematologists do not have the KSAs to provide the level of care we would hope for. Many rely on "standard protocols" and their original training - which may be decades out of date. The better news is that there are docs who are MPN-experts - you just have to find one. Here are a few thoughts for you as you start down this path.
1. Be aware that educated and assertive patients receive higher quality care. Passive patients do not. The providers work for you, not the other way around. You have the right to have all of your questions answered and all of your concerns addressed. Is a good idea to ask your provider: How many MPN cases have you treated? What recent training in MPNs have you had? Are you willing wo work worth a consulting MN=Specialized doc?
2. You have a fundamental right to remain in control of your own treatment and to determine which options are in your own best interests. The doctors job is to evaluate your MPN on a case-specific basis - looking at your individual profile to make recommendations. It is your job the make the decisions about what treatment to pursue. Doctors recommend - patients decide.
3. It can be difficult to find a local provider who is truly an expert on MPNs. Here is a list of patient recommended docs with MPN expertise mpnforum.com/list-hem/ . If there is not a local MPN expert, another approach is to find a local provider for your on-going care who is willing to work in consultation with an MPN expert (this is what I did). It is worth the time, effort and expense to travel to consult with a doc who truly does have MPN expertise. (Due to a coexisting condition, consultation with an MPN expert may have literally saved my life.)
4. Each of us with MPNs have a unique profile in terms of how our MPN presents and our co-occurring MPN related and non-related symptoms and conditions. All of this needs to be taken into account in making decisions about treatment. When chemotherapy is needed, we each react differently to the various medications. Tolerance to these medication varies from person to person. All of the medications have risks and benefits. You will have to evaluate each option to determine what is best for you.
5. Regarding the thrombocytosis specifically - thinking about its treatment is changing due to the emerging research. A few key findings - (1) Under 1 million there is no straight-line correlation in risk of thrombosis based solely on the number of platelets. Whether you are at 500Ks or 800Ks , the risk does not directly correlate. (2) For some people, the risk of hemorrhage is greater than the risk of thrombosis when platelet levels go up. Recent research shows that Acquired von Willebrand Disease can be found at platelet levels for lower than previously thought (In the 800Ks). (3) In the absence of specific symptoms such a thrombosis, splenomegaly, TIAs, etc - some docs favor a more moderate approach to treatment. (4) The decision about whether you need chemotherapy and if so which to use should be evaluated based on your individual profile.
6. Your assessment should have included genetic testing to determine whether you are JAK2+, or CALR or MPL. If you are JAK2+, you will also want to know what your JAK2 mutant allele burden is as this will affect the course of the illness. The over-activation of the JAK2 Signaling system also causes an increased load of inflammatory cytokines that may be responsible for many of the secondary symptoms people with JAK2+MPNs experience.
7. We all get anxious when we find out we have a form of blood cancer. Please be assured that the vast majority of us with ET or PV live long lives, even if challenged by symptoms that affect our quality of life. I was diagnosed with ET over 30 years ago. The ET progressed into Polycythemia Vera about 6 years ago. I am still alive and kicking. I have number of JAK2+ related inflammatory conditions that affect my quality of life, but they can be controlled and dealt with.
8. I have experienced a number of non-MPN related medical conditions in recent years, which at age 63 is hardly surprising. Heart surgery for paroxysmal atrial tachycardia about a year ago A few weeks ago major brain surgery - resection of a hemorrhagic brain tumor. I cannot emphasize strongly enough how important it is to involve a MPN-expert doc in your care. Even when dealing with non-MPN conditions, your needs as an MPN patient must be taken into account for any treatment. I had a Green laser PVP surgery for BPH where the doc did not do this and had a sup-optimal result due to this oversight. Please learn from my mistake - never ignore the presence of your MPN as part of your overall medical care needs. Do not assume that a treating doctor will take it into account. Always insist on the involvement of a MPN-Specialist when considering any procedure.
9. Regarding the use of peg-interferon, you will not know how you will react to it until you try it. I have been on hydroxyurea several times. It turns out that I am HU intolerant. If I ever need to go back on chemo, peg-interferon would be at the top of my list of meds to consider. For now, my treatment for Age>60 JAK2+ PV is phlebotomy only. No chemo-no aspirin. Not a "standard protocol" - but it is the right choice for me.
I hope you find the right choice for you. Please know that you have time to sort all of this out. ET is rarely immediately life threatening. At age 51 you are relatively low-risk unless you have exceptionally high platelet levels, co-occurring medical conditions or a history of thrombotic incidents. All the best to you are you start the new journey.
Thank you so much for your detailed response. As you say, knowledge is essential and I’m learning every day.
I am currently under Barts, London (specialist MPN care) and the consultant certainly seems exceptionally knowledgeable from his cv and research background.
My local consultant already diagnosed Jak2+ and referred me to Barts for treatment. Care is being co ordinated via my local hospital and Barts.
That sounds like really good news. For what it is worth, I find it reassuring that the doc wants to start with interferon. I have no idea whatsoever whether chemo is indicated for you, but most docs start with hydroxyurea as a matter of course. It is cheaper and many just default to it. As someone who is HU-intolerant, I am glad to see that perhaps the doc is looking at your unique profile and considering what is best for you vs. what the "standard protocol" is. Glad to hear you are connecting with MPN-expert docs. It makes a huge difference in your care.
Hi, I am taking Hydrea so not the same drug and sorry can't comment on interferon. I have ET and was diagnosed only lately. I know exactly how you feel at beginning, I guess all of us felt the same, worried, feeling alone and anxious until I joined this friendly group, everyone here is very friendly and helpful, you are not alone. I am sure someone taking same drug as yours will give you more idea soon. ET doesn't normally affect our normal life. Be positive, all of us here need to be positive.
Thanks so much for your reply. You’re not wrong about the people on this group. It’s so fantastic that people take the time to help others and I certainly will make sure I can do my bit to help others, where I can, and support by sharing my own experiences.
Hi Threelions, welcome to our forum, I can see that the lovely people on here have given you some excellent advice, so I won't add anything, other than to say we are here for you. Best wishes, Maz
Hi I am 41 a mum and have a full time job in complex care 48 hours a week. I have been on Pegasus for 4 months now. I suffer with nausea the day after but have tablets to take. I do get very tired on occasions but just listen to your body. The side effects were a lot worse for 1st 3 weeks but they do ease. The best bit is when you have blood tests and you know everything is worth it as bloods are going in right direction. Good luck.
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Essentially Thrombocythemia (Exon 10)
