I’m feeling pretty deflated, looking for some advice based on the huge amount of knowledge and experience on this forum.
Had a call from haematology reg last night to say the bloods I had taken that day were abnormal- platelets up to 1500.
I started on PEG interferon after being on hydroxyurea for many years 4 weeks ago. Taking 95mcg every 2 weeks. Feeling pretty worn out, have had aches, pains, flu symptoms so was really expecting that it was working.
I was told to stop my hydroxyurea completely 4 days before the first injection, I used to take 1.5 g for 5 days and 2g for 2 days each week and my platelets have always been around the 450-500 mark on that dose and were 1800 when I was first diagnosed with ET.
I’ve been told to re start the hydroxyurea, I have a telephone appointment with my consultant on Wednesday. Not due the 4th PEG injection until that evening.
Just wondering if anyone else has had this experience?
Should I have been told to stop HU completely ??
Is 95mcg every 2 weeks a usual dose to start?
Can I expect the side effects will get worse if consultant advises to increase the dose of PEG? I’ve pushed on working while feeling pretty rough and just want to know what to expect.
Really appreciate Any advice or experiences from you
On a positive I hope you all have a nice bank holiday, the weathers beautiful here today, it’s my sons 14th birthday today and I have the whole long weekend off work!!!!
Thank you for any support
Nicky
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Nickyanne
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Hi Nickyanne - I started on Peg three years ago after years on HU - and I was kept on a small dose of HU for the first six months of Peg to help the transfer over, which I believe is often done. The big thing for your case is that it is really very early days of your treatment if you have only been on Peg for four weeks, it should have been explained to you that interferon is a very slow acting treatment, it takes for most many weeks and months to kick in and start working (you may read the odd experience here of a quick result, but that's not the norm for most) - that's why HU is often given in conjunction at the start - i took about six months, and the HU was tapered off in that period and after six months I was solely on Peg and even then the results took further time to be in more normal ranges. The side effects you mention are also very interferon typical, again often an initial dose of 45mg are given to see how an individual tolerates it, I had that for those six months and did get increased to 90mg for a few weeks but couldn't tolerate that dose at all and we dropped back to the lower dose - just now after three years I have been able to be fortnightly on the lower dose and that's been good for me. As for all our treatments it's very individual to each person but do tell your consultant (I hope MPN specialist?) all your side effects. I do hope those ease for you and you get some good results in due course, the good thing is there is no reason why it will not work well for you but it will be after some months All the best
Hi helpatlast, thank you for replying. That’s really interesting that you were taking the PEG and HU for sometime. I’m going to ask to carry on with the PEG and I guess we need to get the platelets down. I’m definitely going to tell my consultant about the side effects, I’m not sure if he is an mpn specialist- ive been at the same district general hospital since I was diagnosed 20 years ago and have always felt I’ve had really good care, although in the past 5 years there’s been a lot of consultants come and go.
I just transitioned from Hu to INF (Besremi) There is supposed to be a phase out period where you take both. I had a hard time during that, but I assume it kept my bloods good.
It is surprising your Dr went cold turkey on the HU.
Your HU dose is relatively high, so it could be reasonable that you need a higher dose of INF to get effect. (I'm not aware of an actual known relationship however)
A rise of over 1000PLT in a few weeks is a lot and suggests you do need to follow Dr advice on restarting the HU. (and you may ask why the complete stop to HU was initially ordered)
For PEG, it is often given weekly, esp in early period. You might ask your Dr about smaller doses more frequently to reduce the peak levels in your body. This is a known trade off in INF therapy. As Helpatlast above says, INF can take a long time to have effect, hence the option to continue HU to keep bloods in range.
I can’t comment personally on the transition from HU to Pegasys but as others have mentioned it seems common to stay on both for a while before tailing off the HU.Many of us on Pegasys started on 90mcg weekly, so your fortnightly dose seems a bit low.
Definitely worth discussing further with your haematologist to see if a solution can be found as Peg can work very well - I’ve been on it over 6 years and just take a small fortnightly dose now.
Hi I’m someone who is experiencing amazing results with Peg so I’m absolutely gutted for you as it seems that we were on par with alternative meds prior to the switch.Initially I cut out the an anagrelide and stayed on the hydroxi whilst taking 90 of Peg a week. Then after amazing results went to fortnight because my white blood cells took a dive. I’m now on 90 every 10 days and have been for approx 10 months. Regarding side affects after taking Peg they got less and less each jab and I can honestly say it might have been 8 months before they went completely.
I met someone in clinic who takes 45 of Peg and some hydroxi. She couldn’t tolerate 90 of Peg.
What are your platelets now?
With my personal experience 4 weeks isn’t long enough. Some people did 45 a week.
I’m no heamo and they know best! Other counts have to be considered. It might be worth asking if you can lower your peg and have a weekly dose. Along with hydroxi. Are you seeing an MPN specialist?
Nickyanne, I have PV, I've been taking 2 x500mg Hydroxycarbanide capsules a day for ten years now. I live a 95% normal life, the only problems I have are raised heamocrit levels so I have a venesection every 3 months. I take other tablets as well, but I have just been gardening and I am off to the pub shortly. So they seem to work for me. Is Peg an alternative treatment?Cheers. Peter.
Nicky, I don't know why that came email to me, It came out of the blue from the HE website which I haven't been on for a few years. Anyway all the best, look after yourself and I hope you get better.Cheers Peter,
7 months on HU for ET and my haemo had to take me off meds due to peripheral neuropathy. Six weeks off HU and still dealing with burning and tingling in feet, lower legs and tongue. Haemo said I have been unlucky with HU. In Australia Peg Interferon is my only other option other than just stick with aspirin. After 7 months my platelets had barely come down anyway so HU didn't work for me unfortunately. Pegasys is a second line treatment in Australia generally used on younger ET or PV patients or for those like myself who are treatment resistant/intolerant to Hydroxyurea.
Firstly the usual plan is to start Peg at 45 mcg weekly and after a few weeks or months when or if you get used to that dose to slowly increase the Peg dose to 90 or higher until it controls your counts and symptoms. For a few Peg works right away or in a few weeks but for many it can take months or even two years I know of one patient to get complete control. Starting at 90mcg every two weeks is odd and can increase risk of sides and hence giving up, the norm start is 45mcg per week.I think most haems would now advise you to restart the HU and only taper it down dose wise as the Peg is seen to be working which can take a while. I hope that helps
Like others here, I also had an overlap of two months before completely stopping HU - whilst PEG was kicking in - but I await the results of my latest CBC to see how the platelet count has changed. I agree with EPGuy: it sounds odd to have been told to stop HU so abruptly and for you not to be on weekly injections initially.
I have been on interferon for 10 months and my platelet counts is not coming down. I started on 45mcg now on 135mcg haemo now wants to add hu 500mg 5 times a week. I am crushed I had high hopes for the interferon... She did say once the platelets stabilised the hu could be reduced.
First and foremost hang in there....4 weeks is very little time to see any positive effect from Peg. I echo what others have said - in my transition (ET Jak2+) I went from 2-3 HU day (1,000-1,500mg depending on the day) and slowly reduced to 0 - for the first 2 weeks I stepped down to 1,000mg/day - weeks 2-6 I was at 500mg/day; week 6 onwards it was only Peg. I was started at a fairly high dose of 180mg Peg every 2 weeks (so 90 mg/week administered bi-weekly). My platelets responded well and were within range <450 for the first time in 7 years but the Peg started to affect my liver readings so we stopped for a month (platelets immediately shot back up as did WBCs). Now back on Peg (5 weeks in) at reduced level (45mg/week administered bi-weekly at 90 mg). Platelets starting to come down (went from 800 off Peg to 590 at last read) and WBCs back in normal range (from 14.0 to 7.5). My MPN specialist has always told me to give the Peg (assuming no serious SE) a year to 18 months to really kick-in. That it usually takes time.
I can say that the SEs are largely gone - at the beginning I was feeling very tired, flu-like symptoms for a day or two after injection (timed my injections for Friday evenings to have weekend to recover) but now no issues at all. Have another CBC in 3 weeks (another month at my reduced Peg dose) and hope platelets continue to moderate; WBCs stay good and liver is OK.....
Hi, I started PEG two weeks ago, I don't know my numbers yet. I was on HU before 2-to 3 pills a day. I'm still on HU 2 pills a day together with PEG 67,5ml (half of the 135ml syringe) once a week. My hem told me, we have to continue with HU until PEG starts to work which needs some time, sometimes even 6 months until you see the results. Otherwise, my hematocrit will rise. And then slowly stop HU.
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