48 and diagnosed with ET (mpl mutation) after a routine blood test 10+ years ago. Platelets average around the 720 mark and on daily aspirin until I had blood clots in my leg last year.
Medication changed to interferon, initially 3miu twice a week, but now moved to pegasys weekly 135mig injections and find that after 2 injections I’m really struggling with the side affects.
Main issues are the constant flu like symptoms, to the point the pain seems like it’s actually in my bones. Also suffering from insomnia, but maybe this is due to my acing body. To top it off seem to have mouth ulcers!
Trying to stay hydrated with water/juice but anyone else experience this and have any tips to help?
Not looking forward to my next injection 😢
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Crofty7
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Sorry to hear that you are struggling. The 135mg sounds like quite a high dose compared with what many are given, I wonder if your consultant would consider a more gentle increase? From what I have read, many are on 45mg or 90mg. I'm not on it myself so cannot really comment more, but it would be interesting to hear from others on Pegasys what their starting doses were.
Mine was 45mcg but only because I told the haema it existed. He also wanted me to start on 180 but i had read a lot about this beforeI requested the drug and was able to tell him about the research which produced beneficial changes with as little as 20 mcg to allow the drug to enter the system gradually to avoid these terrible side effects. I eventually resorted to calling Roche to inquire about the existence of a 90mcg, pre-filled syringe which I was was assured exists but we are still wasting half of that weekly!
My platelets reduced within three weeks to within normal range and I now only inject every 10 days. I have so many bad side effect but I till experience many benefits. All the best to you there in sunny NZ. Have a hug, why don't you? x
Hi sorry to hear this, I was changed to pegasys 9mths ago and initially due to error I was put on 180mcg weekly, after asking on this forum I contacted my haematologist who admitted she was inexperienced with pegasys and immediately reduced it to 90 weekly then with regular monitoring down to 45 weekly after blood counts normalised. Side effects dramatically reduced with the lower doses. Would definitely be worth speaking to your consultant for further advice. This forum really helped with challenging the initial decision otherwise I would have just continued not knowing any better. Good luck and hope you feel better soon.
Thanks Jen, going to speak to them tomorrow. Hopefully can get it changed before my next injection. We you’re not feeling great this forum is such a blessing to get other people’s experiences.
hi crofty i also have et and have had it for (?) years. i try to avoid drugs with little knowledge of their effects. i rely a lot on diet. avoid ALL FOODS with vitamin K, such as leafy greens, etc. i also drink 8 to 10 glasses of water a day. dont rely on juices they may be dehydrating. just plain water chilled. i keep four large glasses in my fridge early in the morning and must have all empty by bed time. it helps to keep track. do a lot of research because i have had three different specialist and their recommendations all differ !
leafy greens or food with vitamin K PROMOTES blood clotting, where as drinking a lot of plain old water thins the blood. so far i am not experiencing any severe symptoms and i am also a vegetarian which keeps my cholesterol down, also a red flag. did a dr. tell me this ? only one of the three i saw. so do some research because the cause of this genetic blood condition is unknown, there for there is no known cure. good luck
Hello - I started on Peg in November after 13 years on Hydroxy - and whilst the effects you describe are typical when starting and adjusting to Pegasys you have been put on a high start of dose for sure - the ideal is starting at 45mg for a time (I had 8 weeks) and then upped to 90mg if needed - some need it some don’t - I did and been on that dose since and it’s starting to kick in and work now on lowering my platelets - It was explained to me that the small to higher dose is the way to lessen any effects and most then adapt to it well (and fortunately I am under a team well experienced in both MPNs and the treatments) so yes you definitely need to go back to your consultant and get things readjusted. I found after some initial weeks of all sorts I adapted well and most effects now are easily managed. All th best
As others have said 135mcg sounds like a high dose to start on. I’ve been on Pegasys over 3 years with no major side effects but never more than 90mcg per dose - I started on 45mcg and built up from that to minimise risk of side effects.
I’m now just on 45mcg per month as a maintenance dose.
After seeing the above responses you must be very glad, as I am, that we have this forum.
As understand from my haematologist who is highly regarded and very experienced with MPN'S and particularly ET, a rapid decrease in platelets (with overly high doses of any drug), is not generally recommended for someone like you with levels of only 720. I have come down from 1200 to 700 over 6 months with very low dose of Hydroxurea with no side effects at all. He may be worried about clot in your legs of course so I don't wish to suggest the treatment is not appropriate but it certainly sounds like you should discuss the matters the forum comments have drawn to your attention. Very best wishes and hope you can reduce side effects very soon. Elzbietta
PS I have not heard about not eating leafy greens either....has anyone?
It must be about Vit K supplements rather than useful leafy greens (spinach, etc) that contain many useful components and fibers plus a very low content of Vit K. But even that small dose might matter, so it is better people with blood clot eat less leafy greens. This page of Mayo might be useful:
Hi Crofty - I have PV and started of on Hydroxi tablets before going into Pegulated Interferon about two and a half years ago. I was initially on 135mig injections once a week and I found that taking paracetamol when I had the injection and the next day, helped soften the side effects. I used to have the injection an hour or so before I went to bed so the worst of the flu symptoms were when I was asleep. Fortunately over that last 18 months I have been able to drop my dose to 135mig every 10 days and now I’m on 135mig every 14 days.
It’s a big dose initially to be on and your body will need to get used to it so hopefully, like me, the side effects will ease after every injection.
Hi, I have PV like yourself. Could I ask if you had problems with high haematocrit and if so, how long did it take for Peg to work? Been trying to lower my haematocrit for over a year now. I switched to Peg from Hydroxycarbamide several months ago but no benefits as yet.
Hi, I've been on Peg Interferon 90 mg for some months now. Platelets still rising and haematocrit always above 45 so venesections required monthly, which is not great as I only have one rubbish vein left so they find it difficult to do this.
I really struggle with Peg side effects compared to Hydroxycarbamide, that I tolerated well for five years, however I had to stop taking this at it wasn't working and caused a skin cancer on my face. Having had a previous history of malignant melanoma and basal cell carcinoma I don't think I should have ever been given this drug.
Peg Interferon has definitely affected my quality of life which wouldn't be so bad if it was actually working. I've been told by my consultant that if I increase the dose my side effects will be even worse. I've read on here Peg can take a long time to kick in so fingers crossed it starts to work soon and I don't have to increase it.
I guess some people tolerate Peg better than others. Hope you get your dose adjusted and you start to feel better soon.
Hi, sorry to hear about your side effects with Peg. I agree with many of the other comments in that your starting dose does seem to be quite a bit higher than ‘usual’ based on the experience of others on this forum. Having said that, there may be good clinical reasons that consultant decided to start with that dose. I started with Peg last week on 45mcg, so still very early days, I took Nurofen before the injection and for a day or two afterwards, fortunately had only very mild flu symptoms. Hope you get things sorted and you see an improvement.
Thanks all for the responses, so glad we have this forum. It makes such a difference to get other people’s experiences and also to know that we’re not alone!
I take the injection at night and also take paracetamol before and after. I read back the letter from the consultant and he said he’d start me on the lowest dose and titrate up so maybe I was actually supposed to be on a lower dose. Will update again once I’ve got clarification. Before the blood clot I never really thought too much about having ET, as other than a couple of blood tests every so often there wasn’t much impact. Now it plays on my mind constantly and these aching bones are affecting me daily.
Hi Crofty. This won't sound particularly supportive and for that I apologise but I have all of those. The pain that feels like bone pain really is bone pain and from what I have read it's due to the excess of platelets being produced in the bone marrow and the pressure caused. The flu symptoms and aches are what I have learned to live with since I began this journey and add to this the insomnia, intense left side head and neck ache, the dodgy brain cells and the unbearable over-heating in bed and that's just about where I am now. Oh, and don't forget the muscle pain, the unquenchable thirst, the dehydration, no matter how much water I 'sip' on daily basis or the constant trips to the toilet as a result and that only leaves the sleep deprivation and total fatigue! Sorry, no it doesn't. I forgot to mention the constantly blocked sinuses and bronchi. I am jut a walking 'snot' but hey, I feel a whole lot better than when I was on hydroxy, which just about killed me in three weeks.
I use a low inflammatory diet to help with the aches and pains. I notice immediately I stray from this and the intense muscle pain returns. I also ensure that the first thing I do every morning is walk, high speed with the 'rodent' (Lhasa Apso) . I take Better You sublingual D3, Starflower and CoEnzyme Q10 beside clopidogrel and the Pegasys. I know that when I eventually get myself back to yoga, I will feel a lot better. However, I need very large 'kick up the derriere' to fight the brain and body fatigue to succeed t that one.
I wish you all the very best. Please let me know how you proceed but do try that diet. Another MPNr on here suggest 30 minutes prior to dose, take two paracetamol (I use capsules because they're gentler on the stomach) then inject and one hour later put yourself to bed with a sleep aid. I use Kirklands Sleep Aid and half of one of these does it for me. All the best. Hugs are good so I'm sending you one from me. Keep smiling. x
Thanks again. Sounds like you have things pretty bad, but definitely appreciate the honest assessment. I thought I was going mad when I was describing that it feels like the ache is actually in my bones! I've been taking paracetamol before the injection, and then regularly in the days afterwards. Took a couple when I got to work which helps, but will be rattling at this rate! I've also been trying a few different sleep aid tablets, but still seem to wake up in the middle of the night so very much trial an error.
Going to google the low inflammatory diet as have not heard of this before.
The sleep aid I mentioned is available from the US. It is mainly an antihistamine and I never awake until morning with half a tablet. Only take them on that night. Never any others because I'd rather not have them in my system regularly but they do work. Not expensive either. I wish you well. ATB.
You are the first person I have spoken to with the MPL mutation. Pleased to meet you! Ready to start my first ever medication but I’m struggling to decide whether to have injections or Hydroxycarbamide.
Hi Infowarrior, we seem to be a select few with the MPL mutation!
I'm currently on Peg Interferon injections 45mcg every three weeks and seems to work well to bring my platelet count down to normal levels (was 750-800) now 400-500.
I don't have any issues self injecting as the needles are very thin, but do find that I'm also a big anemic with low white blood count and neutrophils, so at times feel a bit run down.
Massive apologies for not replying. Thank you for the information. I still haven’t started any treatment yet. Originally I just need more time to choose, but now it’s due to Covid restrictions really. I think I will be starting treatment in September. I hope you feel well. Thanks again. Will be in touch soon.
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