All indicators so far are that Iāll be starting on Pegysus, which Iām pretty excited about if my dream of it reducing my ET symptoms, especially the fatigue, comes to pass.
I have a list of a million questions (as usual) for my consultant, but no doubt thereās stuff I havenāt thought of.
Is there anything you discovered after starting interferon that you wish youād known beforehand? Any experiences youāve had (good, bad or indifferent!) that might be helpful?
Please keep fingers and toes crossed for me!
S š
UPDATE:
Well yesterday certainly took a turn for the better!!
BMB confirmed ET diagnosis (no surprises there), but showed no fibrosis or any other issue which is great news. Platelets have also come down a little.
Consultant has a strong suspicion that some of the symptoms I have are more related to me being post covid/viral than my ET.
Hard to know where one ends and the other starts, but the timing points to covid in her opinion. My fatigue, itching etc basically started with a bang - which she says tends to be more gradual in ET.
Sheās reluctant to add Peg to the mix now and risk making me feel worse.
Apparently thereās no evidence to confirm that Peg prevents ET progression, so she doesnāt feel itās worth risking the potential symptom burden in hope that it will be beneficial in the long term.
Plan is to stick with aspirin and monitor for the moment.
I have mixed feelings about it tbh! Kinda felt strangely disappointed. Obviously Iām thrilled that my ET is in its infancy and that I donāt need any heavy drugs right now. Iām just a little uneasy with the thought of being 5/10/20 years down the line and dealing with progression having potentially missed an opportunity to use Peg as a preventative measure.
Iām a planner and a fixer by nature so definitely struggle to take the āwait and seeā approach! ET may well be here to teach me a lesson š
Thanks for all of your well wishes yesterday š
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IrishSarah
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Gorgeous part of the country Mary! My partner and I are working on building a camper van at the moment, hoping to be on the road by August and a visit to Clare is on the list
Hi I have Et diagnosed sept 16. I have been on Hydroxy since Feb 2018 but started on Peg Interferon last month. I was initially offered peg at start of treatment but the possible side effects and thought of injecting put me off so went for Hydroxy.
The 1st injection I did feel achy and bit out of sorts but nothing that a couple of paracetamol didnt help. Each injection since I take 2 paracetamol with the injection and it def seems to nip any side effects in the bud. The only thing is I feel like I have sciatica type pain down my legs but again nothing that i cant manage.
The injection is really nothing to worry about once you've done the initial one yourself. I have a bit of redness at the site. In terms of my platelets they dropped from the 700s to 383 then to 208 over 3 weeks but my neutrophils dropped very low to 0.9. I have been weaning off Hydroxy during the last month but neutrophils are up to 2 now and I took my last Hydroxy last night. My peg dose will increase from 45mg to 90mg tomorrow as last blood count platelets had increased again to 432. Now just about getting Hydroxy out of my system and the right level of peg. So far my experience of Peg interferon has been a lot better than I anticipated. Just hoping over the next few weeks my levels start to stabilise and fingers crossed wont have to increase any higher than 90mg. š¤ I wish you all the best for your bmb results today and if you have to start treatment I hope you manage ok with peg. Looking back now I wish I had just gone for peg initially but I'm hopeful it's the right treatment for me long term and glad I made the switch over now.
From what Iāve read about Peg - if it works for people it does seem to work brilliantly once things have settled down. Will be keeping fingers crossed for you that everything stabilises and youāre feeling good really soon š¤š»
Hi so glad you got good news from your bmb results. A huge relief I'm sure. As for starting treatment it is a tough one. I started on Hydroxy when my platelets were 1200 but only because of the symptoms I was experiencing at the time. Mainly numbness and tingling which did stop after starting treatment. Interesting your consultants take on peg and progression. From what I can remember my consultant said there is some evidence that peg can slow progression for "some " people. I must try to remember to ask next time I see him who those "some " people are. Does it depend on which mpn you have or your gene mutation?
I'm sure between you and your consultant you will decide when is the right time to start treatment.
Hi Sarah, goodluck with ur BMB results today! I will be sending the most positive of vibes for this. They want to start you on P. Interferon? That's interesting, also P. Interferon has been getting good press. Some saying if you start it early at diagnosis you can get good results. Why do they want to start you on P. Interferon? If you don't mind me asking. Goodluck!!
I donāt mind at all! Iām happy to share any info thatās helpful EmeraldA, thatās what weāre here for š
Iāve updated my post re: no peg for now.
Platelet reduction was being considered because Iām high risk due to having had a major clot on my brain when I was 22. At the time all genetic tests were negative, so put cause of the clot down to a response to oestrogen (I was on the pill). Jak2 test didnāt exist back then, but now that we know Iām ETJak2+ we canāt be sure undiagnosed ET wasnāt the cause.
(Relatively!) young and planning a pregnancy this year therefore Peg seemed like best/safest option.
Was also awaiting input from National Coagulation Centre (Iām being monitored for clotting risk by their team, and ET by separate haematology oncology team). Having reviewed each otherās opinions both teams satisfied that Aspirin is fine for now.
My MPN Consultant was pretty firm on her opinion that thereās no evidence Peg early on = positive benefit/progression prevention.
Ah right ok. My god you have been through the mill!! Ive heard good things about Consultant Eibhlin Conneally so it sounds like you are in great hands!! So that will be reassuring to you. And what an exciting next step you are planning how amazing! My sis had Covid and tbh she had it ages ago and still gets very tired indeed. It is definitely an illness that can linger and cause these issues well after you think u have recovered. I'm so pleased u got such good news yesterday. Bx
Our numbers are on the way back up in Dublin, mostly clusters of younger people. Media narrative has been that itās only an older/vulnerable persons disease which has given a false sense of security. Fun times weāre living in!
What I discovered is that it's much easier to inject than I expected. Also that the side effects for me were minimal and easily dealt with with Paracetamol. Best of luck!
Hi Sarah, I have been on Peg for 5 years now. It stabilised all my counts with minimal side effects. Some tips: start on a low dose, 45mcg ideally, no more than 90mcg. I started at 90mcg and had some temporary hair loss and thinning at that dose, while I have no side effects at 45mcg. If you are worried about the injection, or feel a prickle when injecting, apply EMLA cream on the injection site 30 min before injecting. It is a local anaesthetic cream that you can buy over the counter and takes the dread away from self injecting and makes it completely pain free (many find the injection pain free but I feel a little prickle so I use the cream!). You may get very sore and dry mouth at times - I had this at 90mcg and has persisted. Donāt ignore it, keep hydrated and ask the dentist for advice if needed - I use a steroid mouthwash when I my sore mouth flares up and a saliva replacement gel when it gets very dry. Finally, inject at night with some paracetamol and donāt plan any big activities for the day after your first injection as you may feel like you have a cold. That only happened to me in the first ever injection. I have really no side effects nowadays and only inject every 2-3 weeks. Good luck! It has been a wonderful treatment for me, I hope it is for you too. Susana x
I am soooo pleased that u got such good results from you BMB. Great news!!!!!! and your platelets are down too. Excellent news! Thats a relief. I feel exactly the same in regards to P. Interferon. I worry about 5, 10, 15, 20 years down the line in reference to progession and wonder that if a person were put on PI. at diagnosis and we find it stops progression and it turns out that it i an opportunity missed. On the other hand there is so much research in this field at the moment. Great news though just enjoy that for now and hopefully if we are lucky some smart cookie will come up with an answer. B x
From seeing your earlier posts I think weāre in a similar boat in terms of age, diagnosis and mindset B! No doubt some of the more experienced MPNers here get a giggle from our enthusiasm š
Iām lucky to have a consultant thatās top of her game and I definitely trust her judgement, but I think itās worth being proactive and fully participative in your own care.
To my mind living with an MPN is about measuring risk vs reward. Personally Iām not too worried about clotting, kinda feel like Iāve been there done that, recovery was hard but given my age, health, knowing the symptoms to look out for & being closely monitored- the likelihood of having a fatal thrombosis is slim (and out of my control so pointless to worry). My priority is getting the best quality of life possible now, thatās the bigger reward for me.
But yes, definitely a relief to get good results yesterday. I know Iāve got time to take a breather!
Glad to hear the news from the BMB is good. It sounds like you have a clear, well thought out plan for what to do when/if you do need meds. I would definitely agree that PEGylated Interferon would be a better choice if you do need meds. It will certainly be my first choice when it is time for meds for myself again. As you may recall, I went for most of my 30+ years with a MPN (ET that progressed to PV) on an aspirin-only protocol. I never had any issues with thrombosis. Given your hx of a clot in the brain, I can understand why you might want to be a bit more aggressive in treatment.
I am glad to hear that you have a treatment team you can rely on. Also glad to hear that your resilience is asserting itself in how you manage the MPN. You are 100% correct is saying that we have to be proactive and fully involved in all treatment decisions. This is the best way forward.
Feeling OK. A bit less sore every day. I developed a nice bruise from the lip to under the jaw. Looks like someone slugged me. I should make up a great story to go with it! I am supposed to still be taking it easy, but getting itchy to do more. Not supposed to lift more than 10 pounds for two weeks. Not sure why - not planning to lift with my jaw. Oh well, I guess I had best comply with post-op instructions.
Glad to hear it hasnāt knocked you. Masks hide a multitude and are very fashionable right now you know! I bet you could write a book of battle tales at this point.
You might find this article helpful. I started Pegasys interferon 16 months ago, and I am doing great. The fatigue and pain I experienced prior to interferon was quite bad; it made my life very small, work and rest, and repeat. I do whatever I want now, without the dibilitating pain and fatigue. It has drastically improved the quality of my life. My platelets are at 198 from almost 700. I am now on a every two week dosing schedule of 45mcg.
It is important to know what risk level you are, as this drives the treatment plan. In addition, I would stick to reading clinical information based on reputable research rather than what you can "google".
Finally, if you can see a MPN specialist, if you are not, this is important. They are absolutely up to date on all the current and future treatment options and typically see a higher volume of patients.
Hi Sarah, Iāve been on Pegasys for just over three years now I also take aspirin every day too. I had massive fatigue, itchy hot skin every night as soon as I lay down & it was so hard to get any sleep making the fatigue worse. I would struggle to walk up a hill without getting out of breath. This was all before covid19 was in the world so was 100% all symptoms of Essential Thrombocythaemia.
At first they put me on 90 microgrames of Pegasys a week this soon brought my platelets down and my previous symptoms started to reduce. It was about 6 months and I was symptom free sleeping well at night no itchy or feeling burning hot in bed and a massive improvement on my fatigue etc. My platelets were coming down fast too. I was then reduced to injections every two weeks & continued being monitored with blood tests every 3 months. Every 3 month review my platelets were coming down once they were under 300 I was moved to 1 x 90 injection every 6 weeks & itās keeping my platelets stable & the fatigue & itchy skin symptoms are still totally gone. They did try stopping my Pegasys altogether but after 12 weeks off it all my symptoms came back so they put me back onto the 6 weekly dose & all the symptoms are now gone again.
Iām a Police Dog Handler itās a very active job without Pegasys I would of had to give up the job I love. Pegasys allows me to lead my life as normal.
Iāve never had covid19 so Iāve not experienced the symptoms from that.
My advice to you is if you feel Pegasys will help you push for it with your haematologist. Itās expensive and thatās why sometimes they are reluctant to prescribe it. It does come with side affects & they are different for everyone. I get flu like symptoms for 14 hours or so after injecting it. Iāve learnt to inject before bedtime take paracetamol and then I sleep through most of the flu symptoms and then I start to feel ok by around 11am the next morning.
Iāve read others on here have had to come off it as itās caused depression. So itās not for everyone but for me itās been a life changer allowing me to live life to the full. My advice is try it if they allow you as it may help you like itās helped me. I know how frustrating and debilitating the fatigue & itchy skin symptoms are so I totally understand how you feel.
Good luck and I hope they let you try Pegasys so you can feel better soon.
Best wishes
Claire
PS this is a photo of my police dogs Quest & Stella to make you smile.
A photo of Police Dogs Quest a German Shepard dog and Stella a Staffordshire Bull Terrier
Iām a bit late in seeing your post Claire š¤£ Your doggos have brought a smile for sure. Had 2 German Shepherds as pets in the past, theyāre the most gorgeous souls. Doubt my pair were as well behaved as yours!
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