Hello everyone.I check into this site every day because your input has helped me on my journey with Jak2 pos. I have been on hydroxycarmide 500mg daily for 4yrs, along with clopidogrel, side effects, hair thinning, along with skin, nails and 20lbs weight gain. Platelets have remained between 450- 550. Was with my hemo last week who asked if I would like to try peg. I go back in 2wks with my decision. I have read posts on here that refer to this med, I know everyone reacts differently, my concern are the side effects, do they eventually subside if you do get them. I am 74, really active, so I would be grateful for any advice from you lovely people.
Jan.
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Charliemills
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You are correct that we are each different in how we respond to the medications. The side effects you list are common hydroxyurea adverse effects. If those are the concern, then you may find you would respond differently to Pegasys.
I have used both medications. I was unable to tolerate hydroxyurea and was refractory to it. I responded much better to the interferons, Pegasys and Besremi. The interferons were more effective and much easier to tolerate. the IFNs have had some minor adverse effects. I have experienced some itching and pop up rashes. These are well controlled with a daily dose of Zyrtec. I have experienced mild lymphopenia and borderline neutropenia, but the levels of these leukocytes are acceptable. At one point I experienced an elevation in liver function tests (3X/ULN) but a daily dose of milk thistle extract returned the LFTs to normal.
Note that this reflects on how I responded to the different medication. My response does not predict yours. To make a decision, you will need to be clear about your own treatment goals and your risk tolerance. Comparing hydroxyurea to Pegasys, which risks would your prefer to take to achieve your treatment goals? You are the only one who can decide.
Thank you so much for the information Hunter. I think I may take a chance on peg and see what happens, I guess I can always revert back to hydroxy if its not suitable, but hopefully it will be a better option. Jan.
Hi Charliemills! I’m in the Uk and was diagnosed with ET Calr+ when I was 79 ( I turn 81 in July) and prescribed Peg interferon 90mcg fortnightly. A few minor aches to start with soon subsided but that’s all.
I am 70, or 35 with twice the experience as I prefer to call it, I was on peg for a while last year and felt great on it, had a bit of nausea the first couple of weeks otherwise fine. My haemoglobin dropped dramatically after covid and flu jabs so was changed to Rux. I was on 45 mcg a week, which meant wasting half of what was in the syringe, but injecting was easy. Hope all goes well for you.
I’ve been on Pegasys for over 8 years and find it very effective and easy to tolerate.
I’ve never had any significant side effects - sometimes a bit tired a couple of days after injecting and some dry and itchy skin but all easily managed.
The slow release formula reduces the chances of major side effects and we use relatively low doses in MPNs, which helps too.
Hi, I started weekly on 45mcg. As Hunter says, we all react differently. I asked if I'd like to try hu or pegasys. For me an easy decision given possible outcomes for each drug.Week one was like a vaccine reaction or 'man flu'. Things slowly improved and via a bout covid on day 14 to 21 I was no worse than pre pegasys by around week 4 or 5. At week 6 I felt amazing. I had a clarity of thought I'd not had in years. So for two weeks I overdid things and normality crashed down with a terrible migraine. Now at week 20ish and I feel generally OK. Less headaches, more energy, clearer head. I always take two paracetamol at injection time with a pint of water. I think it staves off any post injection malaise.
My platelets went from 700+ to 333 in 16 weeks. Couldn't be happier with that.
Hope things work out on pegasys for you. Sounds like you've read lots of posts here from other pegasys users.
I agree, this is a great place to find out from others experiences. I read daily too.
I chose peginterferon after asking for advice on the forum. I started on 45 weekly and managed to keep to this dose until it was recently increased to 90. I've had 10 injections so far. Some side effects but, for me, they've seemed to have settled and become more tolerable. I hope this will be the same for you. I have still be able to work, but did take time off when I started and again took 2 days off when increasing the dose.
Injection are very easy too. I was anxious doing my first infront of the nurses but, I was glad I'd done it with someone checking I was doing it right. My consultant aaked me to take a paracetamol 30 mins before my injection, which I'm happy to do.
Thank you for your personal experience with peg. I only posted yesterday and gained so much information already. I have decided to go ahead on the 21st Feb when I see my hematologist, I am ready to start the new treatment, will post updates when I commence my journey with peg. Thanks again. Jan
I wouldn't be on anything else, it gave me my life back..my platelets are stable.. I feel great on it... Of course everyone is different.. but for me.. they're wonderful x
I'm 55F from Canada diagnosed PV JAK+ April of last year. Initially I was just treated with phlebotomy but my iron was already low so that pushed me down to 5 for both iron & Ferritin. I also had a heavy symptom butden so my doctor suggested I try Pegasys (PEG A). I had no problem taking it, a bit tired for a day post injection but given my iron numbers, I'm not sure which were influencing that.
In October I caught this bloody respiratory bug that seems to last forever, so my Doc put me on a medication break for 2 months as a precaution. I see her again Feb 6th and CAN'T WAIT to get back on my Pegasys. It took a bit of time to get my blood numbers to start moving the right way when I started PEG (45 units weekly) but they got there. But the thing I've noticed the most was the symptom burden......it wasn't until it all came back with a vengeance that I realize how much PEG tempered the headaches/joint & muscle aches and itchiness for me.
Thank you so much for your response. I am so grateful to be part of this MPN family, the choice to go forward with peg is an easy one now. Your honest accounts have been really informative, I thank you all. Jan
hi, yes side affects get less with every jab. Take early evening as the side affects take a few hrs to kick in. Put an ice pack on injection site before injection. Pamper yourself with ibuprofen, drinks and snacks and easy meals. You might not even want to eat. It’s like having flu. I love Peg.
Thank you. I will stock up on goodies just incase. Hydroxy just piled weight on, hopefully once I start peg, I may lose a few lbs. I will take your advice and take it early evening. Hopefully any side effects will be easy to deal with. Jan.
there was a fad a few yrs ago 5-2 diet. Fast for 2 days a week. Well when I started Peg. The side affects made me feel a little unwell so I didn’t eat roughly for two days the first week. Don’t worry it didn’t last long but I took advantage of it.
It didn’t last long enough to make a difference either.
Well that made me laugh, I remember that diet, actually I think it's still popular. I will let you know how I get on, but not at the hospital until the 21st Feb, but definitely going to give it a chance. Jan
hello! I’ve been on Pegasys for 4 1/2 yrs now. Now 50 yo, ET with Jak2. Started weekly 45mcg, gradually lengthened out and adjusted dose with Haem. Now 90mcg every 4-5 weeks. I do get some tiredness, and do get low in mood. But I now plan for it - take it at the right time (for me Friday morning seems to work best - feel worst friday night, and over the weekend! Got to work) but I plan for relaxed weekends, good food, films, books. gentle exercise and naps. On the whole I accept the side effects for good platelet levels (272 at last test) and optimal disease control for me at the moment. I do think my side effects were a little worse after getting Covid in Oct 23 but I had also been really busy so that might have contributed. Good luck with it!
Thank you for sharing your experiences of peg. I have received some really lovely messages, everyone has been so helpful and i am grateful to each and everyone of you for giving me insight to what seems quite a positive move for me now. Jan.
I switched from hydroxyurea to Pegasys several years ago now. A nurse did first injection for me and showed me what to do. It was easy and I never had any problem with the injections. Weekly injections for me, back and forth between 45 and 60 mcg through the years. Lately on 60 mcg. The first few months I felt aching in my legs, a bit of headache, slight nausea or at least loss of appetite and fatigue for a few days after each injection. But these gradually subsided and, over a year or so, so did most of the symptoms that had developed while I was taking hydroxyurea: thin, delicate skin, thin, deformed nails, quite poor appetite, fatigue and increasingly debilitating arthritis in my hips and knees being the worst of these. I feel much better now. I still have some off days, mostly the day or two after injection, but not necessarily. I am more energetic. I eat better. I am back to part-time work. And the arthritis is completely resolved. I can sit, walk, move about and do physical work without problems or discomfort. Overall, I am very pleased with the outcome and would not go back to hydroxyurea. My lab results have been improved and more stable. I haven't had a phlebotomy for several years now and only one or two since I started Pegasys. I am glad that I persisted through the initial period of unpleasant effects, but I had been warned to expect these, which helped.
Hi, thanks for your message, it's not until you look back on your journey on hydroxycarmide how much it impacts your overall health. I am quite an active person, I suffer from aching joints etc, so I am hoping I get a good reaction from peg, I think there are side effects from most meds, but I am now ready to change. Thanks Jan.
Hi, I'm also on HU, have been since January 2022. I check in here quite often, and was surprised this morning to hear such a clear connection between HU and arthritis, aching joints, etc. Is it true that these conditions are documented side effects of HU?
Hello Yanks. I know that hydroxycarmide can cause inflammation in the joints, I myself suffer from this, but not everyone gets it. We are all different in how we react to meds. I am sure there are many on here that can answer your question with more clarity than I, this forum is incredible for information. Jan
To avoid any discomfort from the pegasys ( flu like symptoms, headache, etc) I always did my needle a few hours before bed and on a night when I could sleep in the next morning. I only had issues for the first 4-6 weeks. Basically you sleep off any discomfort, but you might not experience any issues at all. Each person seems to have a different experience. Always drink lots of water too. I
I hope you feel back to normal soon and get back to enjoying life again. 🙂🥂
Thank you for your positive response to peg. I am at the hospital on the 21st Feb, that's when I discuss changing from hydroxycarmide to peg. My platelets have always stayed between 450 and 550, and taken meds for over 4yrs which kept them at that level, but never reduced them. I am hoping peg will. Jan.
You might be the perfect candidate for Pegasys because your blood is stable from the other meds. You should be on a lower dose to start and hopefully forever.
When most of us started treatment with Pegasys our blood and bodies were stressed out, but you are arriving here in much better shape to start.
That's a really positive response, thank you. I will post updates once I start on peg, which should be later this month. Don't know if hydroxycarmide is just stopped, or if you are weaned off it, I didn't think to ask.
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