I am on my third week of interferon and I am feeling awful. I still have the big red blotches on my stomach but I also feel very swimmy and dizzy all the time to the point I feel I am going to fall. I have racing heartbeats, waking every hour with terrible joint pain which I had with Hydroxy but I hoped would diminish.
Are these symptoms just because I am getting used to a new drug or does it just not suit me?
I don’t want to Google it, I prefer to refer to the experts on here who have the drug and live with it daily.
Thanks everyone, take care as always
Jill
xx
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jillydabrat
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Hello Jill sorry you are having a rough intro to Peg and I appreciate the effects you speak of - I have been on Peg for nearly three years and I certainly found my initial months tough going - I seem to remember when you posted initially you had been put on a high dose ? - I ask as I know for my dosage makes a big difference to effects for me - i wonder if you can speak to your team and discuss this? Yes interferon can effect sleep and the "bizarreness" of its effects on joints or muscles - for me it's muscle pain especially as night and the higher the dose the more that it so, I am on a manageable dose now and take a simple couple of paracetamol before bed to negate some of the muscle pain (and funnily a simple painkiller does do it) but I do wake a lot through the night, interferon has been quite sleep adverse for me. BUT I do find it hugely better than my initial months and getting the right dose, it did take some time initially and I think those that are effected by interferon will say it takes quite awhile for the body to adjust to it, certainly all you mention are typical interferon reactions. I must admit the fatigue for me has remained but I know how to work around it now and what perimeters I can manage, some weeks are better than others but Peg has had an impact on me, I had 13 years on Hydroxy before and had to change when HU no longer was effective on my counts, HU never had such an impact on me as Peg but Peg is working well on my counts and is an excellent treatment, many find they can also have quite spaced out injection times too after a while, which can be a good thing but it all takes time as interferon tends to a treatment that takes a while to settle in and work. Hope bit empathy is of help to you Jill as I do appreciate how you are probably feeling (rough!!) - do chat to your team and see if any adjustment on dose can be tried - all the best
Wow, guess I am not alone then. My ears have been ringing constantly as well. I think I have been put on way to high a dose to start off with. I just feel awful and this floaty feeling is just not nice. My mood has definitely gone down hill. Bad experience all around so far. Thanks for the empathy x
Hi Jilly sorry can't help as I'm feeling the same as you. I've been on pegasys since May started 45 then upto 60 now 90 weekly- phoned nurse this week as found lymph nodes in groin. Nurse tells me my platelets are down to 320 (regular blood test a few days before) and everything else in range- she'll speak with consultant this week and get back to me about reducing amounts or spacing out to fortnightly - the exhaustion is the worst- everything was going so well, so hope it's just a case of getting the dose right. Take care and hope you can get some advice that helps x
Hi Jill, in my opinion (and the opinion of most haems) 180mcg is definitely not the right dose to start off with this medication. You would certainly feel much better at a lower dose.
Thanks, I was wondering about such a high dose when everybody on here seems to be on half that dose or less. I will phone the unit tomorrow and see what they say. I haven’t had my first blood test yet since starting so have to phone anyway to see if they have forgotten me. Thanks for taking the time to reply
Sorry to hear you are having a rough go of it. I just read below that you are taking the full 180mcg dose of Pegasys. That is the dose used to treat hepatitis. I have never heard of anyone using that dose to treat a MPN. I am on a 45mcg dose to treat PV and it is working without side effects. There are many others at the 90mcg dose.
This is just my opinion, but I think it is quite inappropriate to start someone with a MPN at such a high dose. It is much better to start at 45mcg then titrate up after evaluating efficacy and adverse effects. Given that most people take a while for the PEG to become effective, this is a process of at least several months. PEG can most certainly have adverse effects and these are dose dependent.
I would suggest that consultation with a MPN Specialist is in order. You should have received a complete set of blood work two weeks out, including a CBC and a CMP. This should be followed at another two weeks if the numbers look OK. After that monitoring at 4 week intervals until everything stabilizes. (based on the protocol my docs recommended).
Consultant just phoned. I asked her why I was given such a high dose when the recommended starting dose was 45 mg. she actually said the 180 dose was mid range, it could go up to 360???? I told her how ill I felt, how I was so tired but not sleeping, dizzy, weak legs, pounding heart and she asked me if I wanted to go on a lower dose. To be honest I feel so awful I told her definitely not, I would rather go back to Hydroxy.
If there was another MPN specialist at the hospital I would change consultants but there isn’t one. I have lost all faith in mine.
I do not blame you for losing faith. 180mg is the dosage to treat hepatitis in every reference I have ever seen. None of the prescribing guidelines for Pegasys treatment for PV call for starting at 180mcg. I think you need a consult with a MPN Specialist familiar with the standard prescribing guidelines for Pegasys. Go to another hospital if you need to. Your wellbeing is worth it.
I would encourage you to still consider an appropriate dose of Pegasys. Hydroxyurea would also cause serious adverse effects if you took too much of it. Dose titration will often resolve adverse effects, especially when you are started on an inappropriate dosage. If you really do prefer to go back to HU, that is of course your choice. I just would not base the decision on your reaction to an inappropriate dose of PEG.
Please let us know what you ultimately decide. All the best my friend.
Thanks for this my friend. I phoned the hospital pharmacy and he called me back when he found the prescription. It was for 180 as was given and the instructions were correct. I asked him who signed it and it was my consultant. He was so concerned that he is calling my consultant personally first thing in the morning. In the meantime he advised I call 101 which is the health authority on call line. I called them and they said they wanted to send an emergency ambulance but when they saw how close I was to the hospital they asked me to go myself. I refused as I have no antibodies against Covid and Middlesborough has the highest infection rate in the region. 101 has called me back and they are putting the details to the on call doctor who will probably get in touch with the haematologist on call. I am so worried because of my symptoms. I should have listened to you all when you told me about what low doses you were on.
I think Manouche is correct about the overdosing. Your body will process the excess PEG and you will recover. If your adverse reaction is too severe, you may need to be seen to be screened by someone. If you do need to be seen, perhaps there is another location where you would feel safer. Perhaps the on-call hematologist can give you some accurate advice on how to proceed.
Hi Jill, I wouldn’t worry about temporarily overdosing Pegasys. The half life of the molecule is only 5 days. In other words, 5 days after the injection only 90mcg are left in your blood. No irreversible damage can be done to your body after only 4 weeks or so with the wrong dose.
Thanks for putting my mind at ease a little. It’s the pounding heart and dizziness that is worrying me. The on call doctor is writing to my GP now so I can go and get checked over tomorrow. Will this high dose not affect my bloods at all?
This high dose is extremely unlikely to negatively affect your bloods, but the whole idea of the game is to fine tune your hematopoietic system and a starting dose at 180mcg is not exactly fine tuning it at the moment.
I have been on interferon for 8 weeks at 45 and your dose is really high, I would definitely speak to your has no about lowering for dose and gradually up if needed. Wishing you well, don't suffer unnecessarily
Hello Jill, so very sorry to read how ill you’re feeling on changing to PEG. On reading the others’ posts, 180 dose would seem much too high to begin on. Do hope you feel better soon and get the dosage suitable to your needs. The 101 response must have been alarming for you. Not sure we have anyone who knows enough about MPN’s at Haematology Dept. In J.C.U.H.! Thinking of you.🙏 Fran
I just started my Pegasys treatment for p -vera jak2 positive two weeks ago. I was using Hydroxyurea for 7 months with good results and no side effects. My treatment plan is to start with 45 micro gram Pegasys while still taking the HU. Then to raise the Peg to 90 and lower the HU according to my cbc results. I will get weekly cbc tests to get advice on the HU dose adjustments needed. I do not want to go above the 90 dose of Pegasys because of the risk of side effects. By using low doses of both drugs I hope to minimze any side effects each drug can cause and adjust the dose of both drugs according to my cbc results and side effects observed. A 2009 study on Pegasys showed 54% of patients on 90 of Pegasys had lowered their Jak2 mutant burden, which is my goal. Also, reading the data sheet that comes with Pegasys states that the starting dose for children being treated for hepatitis c is 180 micrograms per week, so you were not necessarily overdosed by your doctor but most recent studies using interferon for p-vera use a starting dose of 45. So, you should keep trying the Pegasys at a lower dose and maybe add in a low dose of hydroxyurea to meet your cbc goals. Everybody reacts different to these drugs and it may take awhile to find your best doses for both. Thats my treatment plan anyway, I really hope you can get a plan with the best results and fewest side effects for you.
I’m so, so sorry for the pain and suffering this mistake has cost you. I hope you get some answers right away. Several months back my specialist made a mistake interpreting labs to me. When I saw her next, after my labs had taken a more positive turn, she apologized profusely for causing mental anguish. She explained her distraction, which I had somewhat picked up on, but said it was a poor excuse for giving alarmist information. I’m not sure I’ve ever had an apology from a medical person. Best of luck ~ will be thinking of you.
Hi jillydabrat. Sorry to hear of your difficulties with PEG dosing. As others here have said 180ug is way too much for MPNs. From your post, hopefully you have now got people looking at that. Before I started PEG I had a one-off appointment with Prof Harrison and she said to always start low and increase it if needed depending on bloods. And she said 45 ug weekly was standard starting dose. So you need a more informed doctor. I support the comments by others, Hunter and Manouche in particular - from my experience they are spot on. After a bit more than a year I now only take 45 ug every 3 weeks (I still get the red spot at the tummy injection site). Please take care of yourself. And best wishes for a quick improvement and better dosing regime.
I’m diagnosed last February Et my treatment was PEG interferon for about 6 months i was very ill for that period of time so I told my hem to use other treatment he he decided to change hydroxyurea and thats really great for me I feel great with this drug. Hope you find best treatment for you.
Hi Jill -- I'm so glad to read that you're now getting a proper medical response to your situation. I hope you're being well taken care of. I also hope you can find a specialist who is experienced with interferon; it's made such a big difference for treating my ET. However it goes, please let us all know how you're doing.
Hi I’ve just taken I think my 5th Peg dose.I take it early afternoon on 1 day and chill the 2nd day as I too experience light headed ness and general in well. How ever not this time. The reaction with the exception of taking it whilst I had Covid have been less each time. Good luck
Jill you poor thing! 90mcg had me feeling rough for the first couple of months, side effects much improved since. I’d agree with what everyone has said here, 180mcg is a high starting dose for MPNs and it’s no wonder you’ve felt so poorly!
Treatment with Pegasys is more of a marathon than a sprint so unless your haem can give you a very good reason not to, I’d reduce that dose and titrate upwards over time if need be. Would be a shame to give up on it without seeing if a different dose would do the trick for you 💚
I am now in the fifth week of interferon at 45 micro grams so can see how the high dose would be tough. I am also on hydroxy but initial blood results are looking good for the first time. However I too feel disorientated so it must be really tough on a higher dose. I’m hoping I will adjust but easing in on a low dose seems a much more sane way forward and it also seems effective at a low dose if my experience is anything to go by. I hope that they get you sorted sensibly and quickly.
Hi,I’ve been on Interferon for some time now. I started weekly on 90 (Haem said start at the high point!) weekly. I’m now 45 every 3 weeks and that’s tolerable 👍
I wouldn’t worry about the blotch as that’s common but, like everyone else has said 180 seems way too high.
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