Hi everyone. I have my haematologist appointment in ten days time and I’m going to ask for shared care with Guys hospital and the possibility of changing from hydroxycarbemide to Pegasys for various reasons. I am concerned about how side effects of Pegasys might impact my life.
l know it’s best to start a low dosage at first. Have many of you managed to escape the scary side effects listed on Google?
I know we’re all different in our response to medication but Im just looking for a bit of reassurance from my friends here. I look after my energetic 3 year old grandson regularly and my daughter relies on that so I don’t want to be unwell .
I’m hoping to hear your positive stories .
Thank you Irene
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Hi, I startet on 45 mcg Pegasys 3 months ago. I had a bad headache the day after in the beginning. But after 3-4 doses it stopped. I feel much better now than when I took Hydrea.
After 5-6 years on 7 Hydrea a week I had to increase the doses to 11. I got more and more tired, constantly mouth ulcers and very dry hair and skin. I have much more energy now on Pegasys.
You are correct that we each respond differently to the treatment options for MPNs. If it will provide some reassurance I can share what a positive experience I have had with the interferons. Note that I was refractory to and intolerant of hydroxyurea. The side effects of venesection-induced iron deficiency were worse than the PV symptoms. I never had fatigue as part of the MPN but did experience a reduction in energy levels due to the iron deficiency.
I decided to start on Pegasys then switched to Besremi. I was at a low dose of Pegasys (45mcg/weekly) until I switched to Besremi. I am currently at 175mcg of Besremi. I have been maintaining a complete hematologic response. My allele burden reduced from 38% to 9% in 18 months (as of 12/2022). I am about to retest the allele burden and hope to see it even lower. Most importantly, my quality of life has improved significantly due the the treatment with the interferons. My energy levels restored as my iron levels increased. I feel better now than before I started on the IFNs.
Side effects have been minimal, much less than with hydroxyurea or venesection. I do experience itchiness and occasional rashes. These are well controlled by a daily dose of cetirizine. I am experiencing mild lymphopenia and borderline neutropenia but not so low as to compromise my immune response. I was experiencing an elevation in liver function tests, 3X Upper Limit of Normal. This is fairly common with the IFNs. It does not require intervention until the levels go higher; however, I consulted with my Integrative medicine doctor who recommend a Milk Thistle Extract. The supplement returned my LFTs to normal levels.
The bottom line is that all of the treatment options for MPNs come with risks. This includes intrinsic risk that comes with a watch and wait approach. The treatment options also come with benefits. We each have to be clear about our treatment goals, risk tolerance, and treatment preferences. I have set my goals as: 1. Maintain a high quality of life. 2. Prevent thrombotic/hemorrhagic events 3. Prevent progression of the MPN/reduce allele burden. (Note that I am at increased risk for progression to AML due to an additional gene mutation). I have my own list of risks I am unwilling to take and adverse effects I am unwilling to tolerate. Putting that all together, the interferons are clearly the right choice for me.
Any particular reason for the switch from Peggy to Besremi. The English NHS licenses both but Besremi appears to be harder to get prescribed due to higher cost.
I switched due to Besremi being FDA approved for PV while Pegasys is off-label. In addition, Besremi is theoretically easier to tolerate than Pegasys. The reality is that I have not found them to be much different. Still, I am content with having made the switch. The cost to me is the same due to how my insurance plan works. What is interesting is that on some plans Besremi is easier to get authorized since it is FDA approved for PV.
I started peg on low dose of 45mcg in March 21 and like you was very concerned and catered for if I would have side effects that first day. I needn’t have worried as I felt no difference at all. I planned my day as normal but kept close to home just in case, that way I was distracted and not thinking about it too much. The next morning I felt like I had had a drink the night before so the next week made sure I drank plenty of water. I really have had minimal side effects and although peg took a while to kick in for me, it kept results at bay and is really working well now. It’s worth trying peg. If it doesn’t agree with you, well at least you tried but you hopefully will be one of the lucky ones like me for which I am very grateful. Try not to worry and give it a go. Easier said than done, I know, but best thing is not to get anxious as the worry will hopefully be all for nothing and won’t change the outcome. Wishing you all the best for it to work for you
I’ve had no side effects at all and Pegasys has worked very well for me. Don’t worry your skin be fine with it, it’s been a miracle for me. I also look after an energetic toddler grandson. Give it a go and let us know how you get on!
Don’t worry - many of us are on Pegasys with minimal side effects and good control of our blood counts.
The list of possible side effects is scary but so are those of most medicines. The reality is that most people experience few if any of them, especially at the low doses that are used to treat MPNs. Pegasys was originally used in much higher doses for hepatitis patients so many of the side effects relate to that usage not ours,
I’m 67 and have been on Pegasys for over 8 years. I just get a bit of dry skin and itching plus sometimes a bit of tiredness a couple of days after injecting but all very manageable.
I was on 90mcg weekly but then reduced gradually and now just use 45mcg every 4 weeks as a maintenance dose - it’s worked very well for me.
Everyone’s experience on medication is different but I have to say that peg for me has been ok. You get into a rhythm and learn what you should or shouldn’t do. I started on 45mcg and got moved quite quickly up to 180mcg, injecting weekly (I’m now stable on 135mcg).
My main side effect is dehydration (thirsty and dry skin) but I now know to drink lots of water and avoid alcohol on the day I do the injection (in fact I’ve ditched the wine completely but that’s a personal lifestyle choice!)
I do also find that the day after I’m a little anxious, double thinking stuff I’m doing, but this is overcomeable. I sometimes just leave some decisions to the next day and then wonder what I was worried about!
Hi Irene, as with all things in life it’s good to have a balanced view…there are lots of positive responses above which are great to read but I’m afraid my experience was far from any of them! I started Peg earlier this year and found huge support on here both before (like you I asked about side effects) and after. I was pretty ill after my first dose and then again after 2nd. I ticked almost every side effect on the sheet! I couldn’t cope with it at all and so didn’t continue. I have spoken to Prof Harrison about this and she has said it is very unusual. Please be assured that whilst it was a horrible few months I am pleased I tried Peg…I now know that it’s not the drug for me! I have read that 70% of people tolerate it, so fingers crossed that you are one of the lucky ones. Keep in touch and let us know how you go x
Hi I’ve been on 9 hydroxycarbemide per week for the last 18 months. My platelets 2 months ago were 463 and my haematologist says they should be under 400 so has asked me back to discuss increasing the hydroxycarbemide. I’m not keen to do that and would like a second opinion from Guy’s and also talk to them about changing to Pegasys. I am concerned about the skin cancer risk on hydroxycarbemide as I sunbathed a lot when younger. I would love to be a bit more relaxed now when it’s sunny which I believe you can be while on Pegasys.
Hi, yes I was on Hydroxy before trying Peg, stayed on it while taking Peg and am still on it now. I can tolerate it although have worse side effects when dose goes up, I think I’m on the highest dose I can manage at the moment. I’m putting my name down for drugs trials as there doesn’t seem many options for me at the moment. X
I started on 90mg weekly about 3-4 years ago. As it worked well I slowly reduced both dosage & frequency. I now take 45mg every 4 weeks. As for the side effects I think I must have googled when I started & I vaguely recall thinking how awful it COULD be. Like so many others here it turned out to be very tolerable & apart from light flu like symptoms for about 24 hrs (easily dealt with by paracetamol) it’s really nowhere near as bad as it says on the tin. What’s more, it keeps my blood nicely in check & that’s the main thing.
my experience with peginterferon is the side effects are nothing compared to hydroxyurea and anagrelide. My hematologist said since those two caused me to have severe side effects that I should be prepared—she gave me a prescription for anti-nausea pills and to take 385 Tylenol a bit before the injection and as needed after. The first time nothing happened. Second time I got a wave of nausea on day 2 after. I Took a nausea pill and it was gone that fast. It happened that way a few more times on day 2 or 3 and then stopped. Been on this drug since March. I have not taken nausea pill for a long time though I still keep the bottle handy. I have taken Tylenol on several occasions not for injection discomfort but for occasional hip and lower back pain that I have had since this adventure started. Peginterferon has caused 2 liver enzymes to increase close to 2x as the dose increased. From this site I learned about milk thistle extract and it is working to bring those values down. I am thrilled to have peginterferon and wish your experience to be as positive. Stay safe!
Don't be, we are all different and react different to medication side effects. I have ben on Peg for eight and half years, from 139mc every four weeks and now 45mc every four weeks. At the beginning of taking Peg I took paracetamol one hour before injection in the evening at 5pm then at 6 pm I took injection. Then later at night if needed I will take second paracetamol. This took me through all those years and now I don't even take paracetamol any longer. I used to have some bad reaction but paracetamol helped.
Google probably isn’t the best place to look, on the MPN Voice website there is very good balanced info on all the meds we take, likely written by Prof Harrison and her team.
Hi, I started on Peg a couple of months ago, 45 mcg once every two weeks but had to remain on hydroxy until everything kicked in. My bloods this last week had dropped by 230 on that small dose of Peg!! So hospital has reduced my hydroxy by 3 tablets a week for now and will review in 6 weeks. Only side effects from peg up to now is itchy skin and dry eyes which I suffer from anyway (eyes that is not skin) so I just have to use more eye drops and then see how it goes. I am keeping a close eye on my hair, bad enough with the effects of hydroxy but i know some on this site lost hair with Peg....I hope I am not one of them. So basically so far so good. Good luck.
That’s a great result on the platelets. I have slightly dry eyes. Could I ask which eye drops you use. I’m hoping for reduced hair loss too. All the best Irene
Hi Irene, I use Viscotears and I get them on prescription, they have a greater viscosity than my previous drops which were Celluvisc but they were quite runny and since my dry eyes have become worse I found the Viscotears much better. What I would say if you are buying over the counter the drops have preservative in them which made my eyes sting so that is when I asked for them prescribed because they can issue a daily dose application which has no preservative in it. Shy kids get nowt!!!
Thanks for the eye drops information. I forgot to ask and I won’t be a shy kid so could you also tell me what you’re doing about itchy skin. I’m compiling lots of tips to help with possible side effects. Thanks a lot Irene
Well, in the absence of any supportive information from haematology, at my last hospital visit i took myself into the Maggies centre at the freeman hospital (a cancer charity set up to support cancer patients and their families, there are a few around the country). I came out with a few informative books on exercise, hair, skin etc. It was a lovely space , lovely people offering all sorts of info and i got myself booked onto a two hour workshop on skin care and I believe there will be lots of free products to bring away. They have a web site and some of their workshops you can access on line...why does the haem dept not point us in this direction, it's right on their doorstep is it because we have not got 'proper cancer'. Until my workshop I will avoid any soaps or scented creams, actually creams are bad, we should be using balms for our sensitive skins. So if you live anywhere near a centre pop in you do not need an appointment and everything is free!! Best wishes.
As everyone has already stated, we are all different. My experience with Peg has been great. I started off at 180 mcg every 2 weeks which worked well but started to affect my liver so we dropped to half that amount and that has been enough to have all my bloods at my last test (a week ago) within normal limits for first time in probably almost 2 decades (at least for the 10 years I've been monitoring them).
The only side effect of note for me is fatigue. Usually extra tired and lethargic day and a half after injection. One of our fellow community members suggested I change my dosing from right before bedtime to earlier in day to give my body a chacne to begin to metabolize the medicine while more active - IT HAS HELPED! Don't feel the fatigue (other than the typical having 4 kids in my early 50's type of stuff :-))
I would definitely recommend starting at the lowest possible dose; seeing if it works (and it can take some time) and moving up in dosage if needed (opposite of what we did in my case).
I felt like you when I started on Pegasus. I was really worried, but it wasn’t half as bad as I thought. In the beginning I had mild symptoms, like if you have a vaccine. However, in time that stopped, and the only thing I get is a little redness in the injection site. The best news is that after being on peg for several years, my JAK burden has reduced and my injection doses and frequency has gone down slowly but surely. Sometimes peg can have that effect on us. The worst thing for me has been hair thinning, but that should be worse on HU.
Thanks for your reply. It’s good to hear your story. I do have hair thinning on hydroxycarbemide and hope that my hair will be better if I go on Pegasys.
hi I love my Peg. It’s the best thing that happened to me. Yes you will be poorly. Just prepare easy food in advance. It’s like having flu for a few days.
When you take it dose up on paracetamol and pamper yourself.
For me each jab had less side effect symptoms. Now don’t bother with taking it early evening.
Currently feeling quite bad almost everyday for the past 3 years after 4 relatively good years on Peg. I had read and heard that peg had the potential to cure MPN’s which I believed would include my Type 2 CALR ET. It did not but for 4 years I had hope and felt pretty good. Looking back now I am not sure if peg was the right decision. But I can say for sure that if I hadn’t tried it I would forever wonder if I missed my only chance. My main takeaway is that peg appears work best for Jak2 MPNs but that is only my non medical opinion.
I am also concerned about this. I have been on hydroxycarbomide for 4 years now .Started at 1 for 3 days then 5 and now 7 days a week. I have no side effects on that dose but my platelets came down from about 1000 to 600s but now hover around late 700s and mid 800s . My heam now wants me to increase the dose but I don’t . I never wanted to be on hydroxy long term and was willing to try a low dose but don’t want to increase it . My next appointment is to discuss interferon and I’m worried about changing and possible side effects as I have a very busy life and also look after grandchildren . Am I better staying as I am ?
Hi all. I'm about to start Peggy and found this thread very reassuring. Is there any diet advice to go along with Peggy to help mitigate side effects? I already try to follow a healthy diet with reduced red meat and very few processed foods. Typical breakfast is overnight oats with plenty of fruit and live yogurt.
Also, if taking weekly and still working is there a reccomended day/ time to take. I was thinking Friday after I finish work so any symptoms are over the weekend.
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