interferon

[Yasmin86]

HI all- I’ve been asked by my haematologist to switch from hydroxycarbamide to interfernon. I’m quite anxious due to the side effects as have tolerated hydroxy quite well. Is anyone else on inter and can help please

[DougyW]

Hi Yasmin. Most people don't get any worse side effects on IFN compared to Hydro. If switching now you should ask about the Peggy shortage and will you go onto the more modern Besremi. I'd personally advocate for a slow and low approach on dosage to allow the body to become accustomed to the new meds. On a personal level (and each should ansk this for themself), I'd go for IFN as there is a growing pool of evidence that this manages the cancer and not just the symptom which Hydro does. If Hydro is becoming less effective or tolerable for you you could ask about Rux which is now allowed in the UK. This appears to work in a similar way to IFN in so far as it tackles the defective cells and not just suppress blood cell production with lesser potential side effects.

I wish you all the luck with your treatment. I'm on Peggy at the moment and the only side-effect is Neutrophil suppression. I need a conversation with my Haemologist and will be pushing to move to Rux.

[Yasmin86 in reply to DougyW]

thanks for your feedback DoughW. Although I’m tolerating hydroxy I have an enlarged spleen which can be painful. Liver pain- I’ve had 3 clots in my stomach spleen and liver and currently on apixaban. I’m 38 with 3 young children and the thought of side affects worries me that I can’t hbe well enough to look after my children one who is autistic

[DougyW in reply to Yasmin86]

I can only sympathise with you Yasmine. Given your young age it may well be worth asking for Rux as said by Sprat below. If not don't worry too much about side effects. Just be observant and be prepared to change again if something happens you don't want to live with.

[Meatloaf9 in reply to Yasmin86]

Hi, I am 75 PV and also considering the switch to besremi (been procrastinating for over a year) I have been on HU for about 4 years and all blood counts are perfect per my mpn specialist, going for bloods later today. My specialist says the decision is mine, I asked him to make the decision and he would not.

I think if my spleen and liver were enlarged and painful and I were getting clots in the abdomen thin I would take a serious look at a change in treatment. They tell me I can always go back to HU if I would want too. INF is the only drug as far as I know that might alter the course of the disease, that could be significant for someone as young as you. Best to you in making your decision, let us know how it goes.

[harev in reply to Yasmin86]

I have had no side effects on Besremi.

[Nature_for_Life in reply to Yasmin86]

Hi. I'm sorry to hear you are going through this unsettling change. It is hard, especially as a mom with young children. I'm now 47 and have been on Pegasys for 8 years. I also have 3 children and we can date my ET back to 2003 so I've lived with the condition for many years. I have to say that my quality of life was very much improved after starting Peg and my JAK2 allele burden has significantly decreased. My spleen has also since return to normal size. I allowed myself a tremendous amount of grace when first starting peg and it took about 3 months for me to ease into the side effects (and fully understand what I needed to best manage) which were mainly mild to moderate flu-like symptoms and lasted about 36 hours post injection. I listened to my body and understood what my body needed to combat these side effects which may be different for everyone. For me, I prioritized good sleep hygiene and hydration surrounding the weekly injection (which is now only once every 6weeks and half the dose!). I appreciate the journey is different for everyone, but I've been fortunate enough to manage home life and a full-time executive role. Now with peri-menopausal, I think I have to really pay attention to the fatigue and other symptoms of ET (and life), but it's manageable. I lean into what I can control (diet/lifestyle) and do my very best (although not always well) to avoid leaning into what is out of my control. All the best to you and your family. Not sure if it's helpful, but happy to share other 'mom's on interferon' thoughts if you want to reach out directly

[Sprat19]

As you are young IFN seems an appropriate choice. It doesn’t usually work fast like HU. I have been on Peg interferon for almost 3 years. Very little in terms of side effects. Biggest problem is current Peg shortage but if you are just starting they may give you Besremi. The injecting although seems daunting has been fine as well. Rux is supposed to be good for enlarged spleens too so worth asking about

[Sprat19 in reply to Sprat19]

like Dougy I also have low neutrophils on Peg. But when I had an infection last year they did kick into action and come up to do their job.

[Yasmin86]

thanks this is really helpful ☺️

[hunter5582]

I have taken both. I was refractory to and intolerant of hydroxyurea. I have done much better on the interferons. I started on Pegasys then switched to Besremi. The IFNs have done a better job controlling the erythrocytosis and thrombocytosis, has had fewer and more tolerable side effects, and reduced my JAK2 VAF from 38% to 10%. My overall quality of life has improved on the IFNs. I feel better now than I did 10 years ago.

Suggest you talk to your hematologist about hwy the recommendation to switch. Is this about the potential for disease modification offered by the IFNs? Is the doctor concerned about the long-term risks of HU? Noting that you are 38, this may be the reason. The IFNs are usually preferred in someone your age. You cannot make a fully informed choice unless you understand the desired benefits of the change as well as weigh the relative risks of each choice.

Wishing you all the best as you move forward.

[william-Indo]

There is shortage of Interferon worldwide.Just make sure you will get the supplies until end of the year.

[AndyT]

I’ve been on interferon over nine years, with no significant side effects - just a bit of dry skin and itching sometimes.

The trick for most people seems to be to start with a low dose such as 45mcg weekly , increase that once you’re tolerating it ok and until your counts are in normal range, then reduce the dose/frequency if possible to get back to a low maintenance dose.

I started on 45 weekly, increased to 90 weekly for a couple of years then stretched the frequency out to 10, 14, 21 then 28 days. As that still kept my counts normal I reduced to 60 then 45mcg every four weeks and stayed on that until recently. I’m now on 90mcg every eight weeks due to the shortage of Pegasys and that’s working ok too.

[Wyebird]

interferon gave me my life back. However what is the reason you have been given, considering you tolerate Hydroxicarbomide so well?

[Yasmin86 in reply to Wyebird]

it’s to manage my symptoms enlarged spleen

[Wyebird in reply to Yasmin86]

Oh your enlarged spleen must be addressed I love Peg. I think I’d refuse to go back on hydroxi and face consequences. For 6 yrs my platelets went up followed by meds. I now inject 90units every 5weeks!!im even contemplating going to 51/2weekly.

[Exeter21]

You are lucky to be offered Interferon. I struggled to get interferon after reacting badly to Hydroxy. I went through MPN to get changed to Inerferon & best thing I did. Excellent treatment if they start slow & correct doseage . It is not a quick reacting treatment but over18 months my platelets became stable around 300 -350. No side effects . I now inject monthly. If you are in UK there is a current shortage of this drug so your Haemotology need to check that. We are all being rationed. 👌

[lynnieb]

Hi there

I find out in 2 weeks what drug I'll be started on for my ET. My worry about Inter is the shortage. Did you haematologist mention that? I hope that you cope well with the change.

[Pogm]

Hi! I was hesitant at first to try Besremi, but it has been an important step in my management of PV. I have been on it for 18 months and have seen a significant drop in my platelets and normalization of my WBC, etc. I highly recommend the " low and slow" approach. Hope you give it a try and have much success with it!!

[KLCTJC]

I am young too. I am 42, diagnosed about 4 years ago. I have been on Besremi for 2 years. And like one other person said. It gave me my life back. I feel better and feel like I am going to be there for my daughter who is now 6. So I get it. Hope this helps.❤️

[dbus1417]

interferon is the way for younger patients. It actually attacks the disease which can buy you additional years progression free. I wanted off hydroxyurea because I just couldn’t imagine taking chemo pills for however long this battle lasts. Interferon is a biological compound your body generates naturally in response to viral infections.

I started it about 15 months ago and while my platelets are still slightly elevated (5-600), all counts are well controlled with no side effects to speak of. Currently taking 135 mcg weekly. I’m in my early 40s as well. ET+CALR

[dbus1417 in reply to dbus1417]

Edit: I do have one small side effect, and that is increased liver enzymes which is an indicator of mild liver irritation. Top of range is typically 41 and mine has been hovering slightly above that. I have utilized milk thistle extract to help manage that but it is nothing my hematologist is really worried about. He said he doesn’t really get concerned until it’s 3x normal limits and even then the liver is a fairly robust organ with the ability to regenerate itself. Just thought I’d add that.

[Yasmin86 in reply to dbus1417]

I also have a raised bilirubin but again been told nothing concerning. Although a benign lesion that is monitored

[Yasmin86]

thanks all for your advice. Really helpful and definitely considering the change ☺️

[FCancer123]

This sounds like exactly where I'm at right now. I have just been approved for Besremi and receive my first shipment from the pharmacy this week. I am a 50yo female ET/PV CALR. I'm kinda scared too but am not as tolerant of the hydroxyurea, hence the switch. I'll be happy to keep you posted through the next couple weeks, if you don't mind a gentle reminder...those brain fog and exhaustion side effects are on me🙃