Hi fellow MPN-ers,
I’ve just been told that I don’t have ET, but actually have PV. I’m supposed to start Pegasys this week.
Can you share your experience with me? Do you get sick? For how long? What helps relieve it?
Needless to say, I’m scared. PV has already changed me so much (read: fatigue, falls, headaches), that I can’t imagine adding nausea to the mix and continuing my work schedule.
Any info about your experiences will be appreciated!
Thanks a lot.
Mary
Hi Mary - I’ve been on Pegasys just over 2 years now for ET and it’s great - no serious side effects, just some dry skin and occasional mouth ulcers.
I get very tired but am not convinced it’s due to the Peg - more getting older and being too busy!
Start on a low dose if you can - I tried 45mcg first, then 90mcg - weekly to begin with, then every 2,3 and 4 weeks. Now on 45mcg every 2 weeks and hoping to stretch the intervals out again as my platelets are well under control and I prefer the lower dosage.
The list of potential side effects in the pack is scary but at the low doses we use for MPNs most of us get few if any of them.
Hope it works well for you too.
Andy
Thanks; so good to hear of your call experience!
Hi Mary,
I an 54 have ET and have been taking Peg for 2 months. It has been ok so far. I think you need to try and keep an open mind and be positive. Give it a go and see how you get on. The injection side of it sounds worse than it actually is. It is really straightforward and there are some good YouTube videos by people doing their injection.
Good luck I hope it goes well.
Jocko
Thanks Jocko! Still so strange to think this is for the rest of my life. I appreciate your response.
Hi Mary, I was really scared before my first injection but it wasn't too bad and I'm so relieved that my platelets are under control now. I feel better overall as a result. I did experience some flu-like symptoms the day after the injection for a few weeks but now I feel absolutely fine, no side effects. I've been on Pegasys for about a year now, lowest dose 45 mcg. Good luck! Hope it works for you.
Kind regards, Cecilie
Thanks, Cecilie! This helps so much. I'm glad to hear that the Flu like symptoms go away.😊
Hi Mary
Just started on Pega, nothing bad so far.. I am still on hydro (reducing dose), and aspirin, and have had over 35 venesections in 3 ½ years.
Hydro, no issues.
Venesection no issues.
Well besides being tired.
Age 61 and getting more grumpy…
I always think positive, regular blood tests, should identify any other issues, so a ‘bonus’..
I wrote a very similar post last weekend, asking what to expect as I prepared to take my first injection of Pegasys. The positive replies I received eased my mind. On Tuesday, I did my first injection, and it wasn't too bad. The shot itself was very easy, and I felt fine the rest of that day. The following morning, I was a bit nauseous, but could function. I was very achey, so took a walk and did a lot of stretching. Throughout the day, I just felt a bit off, and was very tired. However, if I had needed to go out in public and act normal, I could have. I would recommend taking off of work that first day, just to see how you handle it. That is what I did. In the future though, I am hoping to continue with a normal work schedule. My dosage is 45 mcg weekly. Good luck!
Thanks! This helps a lot. It was recommended that I take it on a Friday night so I don’t have to miss work. Sounds ok but I don’t want it wrecking my weekends either!!
Hi Mary
I just want to add that I was really scared to inject but it is absolutely fine. I made such a fuss and when the nurse helped me for the first time I just looked at her and said "Is that it?" Also I read the side effects and imagined I had them all!
I initially took 90mg which made my head fuzzy and gave me a headache. I am now on 45mg every six days (have to keep a note in my diary!) And last week the doctor told me I was back in the normal range 😁😁😁
So my advice would be - hang on - your body will get used to the drug and you will get used to injecting.. Just carry on and enjoy your life!!
Thanks! I’m so encouraged by your response !
Hello Mary
Could you please tell us what your counts are? And why from ET you became PV?
Thank you
Platelets 810, RBC 16.5
Hello mine are 679 and RBC 8.24. HCT 51.9! Just been on aspirin up to now.
I think because first doc missed the high rbc and only looked at high platelets
Just to add to the mix - I am 35, ET JAK2+ and was diagnosed in February this year. Although my counts are relatively low, I started on pegylated interferon at 65mg 3 weeks ago, increasing to 90mg from yesterday. I was (and still am) concerned about side effects and the impact they might have on my life and career, however, so far, I haven't had any notable side effects I am pleased to say! I know there is a possibility of my dose being increased again in 4-8 weeks, but when I'm having a good day, I know that it is all for the greater good. On a bad day, well, that's another story... Good luck with it.
Thanks so much for sharing your experience with me!
Hi Mary
I see from your post that you were due to start Pegasys 3vyears ago. I am due to start in a couple of months (PV jak2+) a d wondered how you have got on with it. I am very scared and it's been such a hard decision between Peg or Hydroxy. I feel well at the moment with just mightsweats and occasional headaches but because I'm now 60 consultant advising me to start treatment. It's very scary! Take care.
Hi Tmg59
I have ET diagnosed in sept 16. I have been on Hydroxy for over 2yrs and have had no issues with it. However I have since changed consultant and his recommendation for treatment is peg interferon due to my age. (47) I was offered interferon initially when I started treatment but the thought of the injections and possible side effects swayed me to Hydroxy. We have now decided at my review yesterday to try peg interferon. I will get my 1st injection this friday and nurses will talk me through how it all works.
I am pretty nervous about it but then I was nervous starting Hydroxy as well. Long term I think Peg interferon is the better option and I've been reading really positive comments on here how well people tolerate it. I hope I tolerate it as well as I have Hydroxy 🤞
I havent posted on here for a while but always read the posts regularly. I will post next week with an update on how the 1st injection went.
Take care
Mandy
Hi Mandy. Thank you so much for your reply. Hope it all goes well for you and I look forward to hearing about you get on. It's just all very scary but then, as you say, there are lots of positive posts so fingers crossed. Good luck!
Hi Tmg59. So first injection yesterday and it was fine. The nurse talked me through it and she did the injection which I barely felt. Hopefully next week when I do it myself it will be as simple 🤞in terms of symptoms, around early evening I started to feel little bit achy around my lower back and specifically around my right side which is the side I got the injection. My legs felt heavy and skin slightly sensitive to touch. After about an hour it was bad enough for me to take couple of paracetamol which helped. Up this morning after a good nights sleep and have a general achiness everywhere but nothing that cant be managed. So far so good. 👍 I still have to continue with Hydroxy for a week or two and will be weaned of them based on weekly blood review. Unfortunately my platelets have spiked from 417 in Feb to 727 yesterday so had I not been changing to Peg my Hydroxy dosage would have been increased anyway.
As I say so far so good and hopefully aches will ease off soon. Hope this is helpful to you when it comes to you having to start treatment and the choice you make. It is a difficult decision to make and perhaps I should have gone for Peg initially but at the time I thought popping a couple of tablets a day was the easier option than having to inject myself. I'm very hopeful that switching over to Peg will be the right decision.
There is lots of info on Mpn voice regarding treatments and possible side effects and also everyone on here is always on hand for some advice.
Wishing you well.
Mandy
Hi Mandy. Glad to hear your first injection went ok with manageable side effects. Fingers crossed it stays that way for you 🤞. I think I've come to the decision to go on Peg, thanks to everyone's input on here, which has been so helpful to me. I have my appointment with consultant next week and needed to be sure of which treatment I was opting for. I hope you get on well with Peg and look forward to hearing updates from you, if that's ok. If you dont mind me asking, have you had any hair loss with Hydroxy?
Take care
Tmg59
Hi no problem I'll update how I'm getting on especially once I've done an injection myself. The nurse made it look so easy yesterday so I hope I manage it ok. Think once I've done my first one myself it will be fine. This afternoon I had to take paracetamol as the lower back pain was uncomfortable and I also fell asleep for a couple of hrs which I wouldn't normally do. As for Hydroxy I didnt experience any hair loss or any other symptoms really other than a bit of an upset stomach the first couple of days. My platelets on starting Hydroxy were almost 1200 and have since ranged from 500s to 700s so while not within normal range they are lower than what they were. I'm hoping Peg will bring them down further.
Good luck for your review next week and hope whichever treatment plan you go for works well for you.
Best wishes
Mandy
Morning Tmg59
So I have just done my 1st injection. Must say I was very nervous and shaky setting it up but the injection was absolutely fine. Didnt feel it at all. As for side effects the last couple of days I have had what I would describe as sciatica type pain in both legs. Have lost my appetite and do feel bit bloated.
The specialist nurse rang me this morning with my blood results which were taken yesterday. Good news my platelets are 383 which is lowest they have ever been BUT my neutrophils are low at 0.9 so I have to be extremely careful to avoid infections. I can lower my Hydroxy dose from 2 daily to 1 so hopefully that will help neutrophils to rise 🤞week 1 over and while I have felt out of sorts it has been manageable. Nurse said to take 2 paracetamol with the injection and not to let side effects build up. Take paracetamol to keep on top of any symptoms but just to watch for fever,aches or chills or if feel very unwell.
Have you had your review with consultant yet? Do you know which treatment you will go for? The injection side of it for me now is not an issue. It really is fine it's just managing any side effects you might have.
Best wishes
Mandy
Hi Mandy.
Thank you so much for letting me know how you're getting on with Peg. That's good news about your platelets 👍. Hope you can now get your neutrophils back in line 🤞. I spoke to my consultant yesterday and I've definitely opted for Peg, so I'll have appointment in next 6 weeks to see nurse and start from there. I think I feel a lot more happier having spoken to you and others on this forum about starting Peg. It really does help knowing others are going through the same emotions and having to make the same decisions. I'd love to hear how you continue doing if that's ok.
Take care and thank you again
Tina
Hi Tina your very welcome and yes of course I'll keep you up to date on progress and anyone else who may be starting off on their peg interferon journey.
I've had from Feb to decide whether to swap over to peg and it's been from reading all the positive posts on here that has helped with my decision so I'm glad if by posting it has helped you with yours.
I'm sure you will still be a little bit anxious and nervous as the time to start treatment approaches and no matter when someone says not to worry we always still do but I hope you find it ok. 🤞 also bear in mind I am still taking hydroxy which is a double whammy to the body which could explain some of my symptoms, you may well sail through it all with little or no side effects.
Very best wishes
Mandy
Mandy, I did great on Pegasys...hardly even noticed I was taking it. Good Luck!!
Hi Mary thankyou for your reply. That is really encouraging to hear. I'm hoping once I'm completely weaned off hydroxy and bloods start to stabilise I will be the same as you......inject and put it out of my head for another week.
Take care
Mandy
I've been injecting Pegasys since 2016. Your concerns are valid. I would suggest you try some techniques to reduce your stress (things like breathing exercise and mindfulness meditation).
The actual injection I have no pain with. In the beginning I became very tired, within an hour, slept for a further 12 hour. That was the maximum noticeable short term symptoms. You should be able to contact someone in haematology for reassurance. We are all different in how we react to all meds. The known side effects, for interferon, are documented as severe. Remember these are for higher doses than you would be on.
Good luck for Friday. Sending you ehugs (if needed).
Hi EleanorPV
Thankyou for your reply. I do try to practice mindfulness and having a positive attitude especially since ET was diagnosed. I have since been diagnosed with Osteoarthritis and probable Fibromyalgia so the possible aches and pains associated with peg worries me more than the injection. I know once I've done the injection I'll be fine it's just the initial thought of it. If like you tiredness is the only issue I can cope with that. I'm off work at the minute shielding so nows a good a time as any to try peg.
Thanks again for your kind wishes and hope you keep safe.
Hi MaryELWoodsI am taking legislated interferon called Pagasys. I transitioned I to this a few years ago from regular interferon, which I have been on now for 25 years.
My transition was very smooth indeed, no nausea, headaches or chills. When I first started interferon I had a few nights of fever like symptoms but literally only 2 maybe and I take a paracetamol before I do my injection, pop off to bed and sleep through any symptoms, but I just do t get any hopefully you will be the same, speak to your doctors about what you can expect but hopefully you will transition like I did with ease, take care
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