I have been taking HU for 13 years and gradually the dosage has increased and increased to try to control my platelets. I have finally developed a leg ulcer and realise my days of HU are limited.
I only have the choice of Anagrelide ( very expensive here in Aus) or Peg Interferon. Very nervous about Peg I, as it has such awful side effects and there is a 35 percent drop out rate. Is there anyone out there who takes it and could help with reassurance?
Thanks
Kate
ET and Hydrea
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Re: ET and Hydrea
Hi Kate...
I also suffer from very high platelets, and I am on Ruxolitinib. However, I do recall being on HU just after diagnosis but it really did not agree with me at all...
I am not sure that Pegsys' is the better option, however, it must be better than HU, in my view...
Anagrelide also can have problems with palpitations and heart issues... Hence, pursuing Pegasys' might be the better way to go.
I cannot make any promises that I will receive a reply from Cecily Forsythe but I will try to ask her opinion for you.
We are hoping that over time, we will have a number of specialists that we might be able to refer questions to... but it is still early days at this juncture Kate.
Garry, who is one of the other website Founders here at MPN-Mate, has recently also started Pegasys' w/ his Ruxolitinib. But I shall try to ask him to reply to you directly regarding side-effects. So far, at least to me, Garry has reported that all is really well in that department.
BTW, Garry has yet to set up his profile so maybe give him a day or two...
Thanks Kate and I will be back in touch in due course...
Steve
I also suffer from very high platelets, and I am on Ruxolitinib. However, I do recall being on HU just after diagnosis but it really did not agree with me at all...
I am not sure that Pegsys' is the better option, however, it must be better than HU, in my view...
Anagrelide also can have problems with palpitations and heart issues... Hence, pursuing Pegasys' might be the better way to go.
I cannot make any promises that I will receive a reply from Cecily Forsythe but I will try to ask her opinion for you.
We are hoping that over time, we will have a number of specialists that we might be able to refer questions to... but it is still early days at this juncture Kate.
Garry, who is one of the other website Founders here at MPN-Mate, has recently also started Pegasys' w/ his Ruxolitinib. But I shall try to ask him to reply to you directly regarding side-effects. So far, at least to me, Garry has reported that all is really well in that department.
BTW, Garry has yet to set up his profile so maybe give him a day or two...
Thanks Kate and I will be back in touch in due course...
Steve
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peterpotter
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Re: ET and Hydrea
Hi Kate,
I have ET and have been on Hydroxyurea for the last 14 months or so. I am in New Zealand and my haematologist can only offer me Anagrelide or "ordinary" Interferon (not the slow release Pegasys) if I eventually cannot tolerate the Hydroxyurea.
I have done quite a bit of thinking about what I would opt for if I do have to make a change myself. My haematologist did initially offer me Anagrelide as a "plan B", but recently seems to have cooled towards that because she has seen studies that suggest that there may be a slightly higher risk of ET transforming to MF in patients who have been given Anagrelide after first being on a course of Hydroxyurea. Whilst she seemed very against Interferon when I discussed it with her over a year ago, it seems that she is now much more in favour of me having that if I have to move to another drug. When I first asked my haematologist about interferon she was rather full of negativity about possible side effects, but it is very likely that most of her clinical experience has been with using the "ordinary" stuff that you have to inject several times a week, and any experience with Pegasys would have been with high dosages given to patients with illnesses that were not MPN related as Peg isn't funded for MPNs here.
I have been very encouraged to read MPN patients accounts of being on Pegasys, and it seems that a significant number of them have few adverse symptoms and many do very well on it. Most would be started on very low dosages of it to begin with, and this would be built up slowly if needed.
Very Best Wishes,
Peter
I have ET and have been on Hydroxyurea for the last 14 months or so. I am in New Zealand and my haematologist can only offer me Anagrelide or "ordinary" Interferon (not the slow release Pegasys) if I eventually cannot tolerate the Hydroxyurea.
I have done quite a bit of thinking about what I would opt for if I do have to make a change myself. My haematologist did initially offer me Anagrelide as a "plan B", but recently seems to have cooled towards that because she has seen studies that suggest that there may be a slightly higher risk of ET transforming to MF in patients who have been given Anagrelide after first being on a course of Hydroxyurea. Whilst she seemed very against Interferon when I discussed it with her over a year ago, it seems that she is now much more in favour of me having that if I have to move to another drug. When I first asked my haematologist about interferon she was rather full of negativity about possible side effects, but it is very likely that most of her clinical experience has been with using the "ordinary" stuff that you have to inject several times a week, and any experience with Pegasys would have been with high dosages given to patients with illnesses that were not MPN related as Peg isn't funded for MPNs here.
I have been very encouraged to read MPN patients accounts of being on Pegasys, and it seems that a significant number of them have few adverse symptoms and many do very well on it. Most would be started on very low dosages of it to begin with, and this would be built up slowly if needed.
Very Best Wishes,
Peter
Re: ET and Hydrea
Hi Steve,
Thanks for your prompt reply. I have managed to contact Dr Cecily Forsyth's secretary and she informed me that I need a referral from my GP in order to get an appointment with her. I do think I need a second opinion and she is obviously and expert on the subject of MPN's. I am seeing my GP tomorrow and hopefully he will contact her asap, as the ulcer on my ankle is definitely getting bigger.
Both Anagrelide and Peg Interferon sound as if they have awful side effects but I really don't have much choice. Will let you know how things progress.
Cheers,
Kate
Thanks for your prompt reply. I have managed to contact Dr Cecily Forsyth's secretary and she informed me that I need a referral from my GP in order to get an appointment with her. I do think I need a second opinion and she is obviously and expert on the subject of MPN's. I am seeing my GP tomorrow and hopefully he will contact her asap, as the ulcer on my ankle is definitely getting bigger.
Both Anagrelide and Peg Interferon sound as if they have awful side effects but I really don't have much choice. Will let you know how things progress.
Cheers,
Kate
Last edited by KatieB on Thu Jul 04, 2019 6:40 pm, edited 1 time in total.
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MPN-MATE Admin
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Re: ET and Hydrea
Hi Kate... 
I note that PeterPotter above makes some interesting comments too concerning both Anagrelide and Interferons...
Yes, must have a GP referral... That old chestnut...
I met Dr Cecily Forsyth at an MPN talk she gave with colleagues a little while back at the Royal North Shore Hospital in St Leonards (RNS).
I also mentioned that I was looking into Fundraising ideas at that time. I have an email for her but only at her lecturing position at Newcastle University.
Dr Forsyth, provided a most informative presentation on that day, and she does seem to be a specialist who prefers Interferons as a First line of treatment in most cases. I am looking forward to learn as to how things might progress after you have had a chance to see her etc...
I have also contacted a couple of other specialist and asked if they would consider answering a few MATE's Patient's questions from time to time...? Still awaiting replies at this stage unfortunately... But we are, (MATE's FORUM), just brand new at the moment...
There is also a Dr Chis Arthur at Nth Sydney Cancer Ctr who was the specialist who placed Garry on Pegasys Interferon recently...
Yes, we are still awaiting Garry to sign up on the MATEs FORUM. I will call him about that today for you, and give him a nudge etc... As I am sure he might be able to dispel some of the issues concerning side-effects of Pegasys...
Best wishes Kate & talk again soon...
Steve
I note that PeterPotter above makes some interesting comments too concerning both Anagrelide and Interferons...
Yes, must have a GP referral... That old chestnut...
I met Dr Cecily Forsyth at an MPN talk she gave with colleagues a little while back at the Royal North Shore Hospital in St Leonards (RNS).
I also mentioned that I was looking into Fundraising ideas at that time. I have an email for her but only at her lecturing position at Newcastle University.
Dr Forsyth, provided a most informative presentation on that day, and she does seem to be a specialist who prefers Interferons as a First line of treatment in most cases. I am looking forward to learn as to how things might progress after you have had a chance to see her etc...
I have also contacted a couple of other specialist and asked if they would consider answering a few MATE's Patient's questions from time to time...? Still awaiting replies at this stage unfortunately... But we are, (MATE's FORUM), just brand new at the moment...
There is also a Dr Chis Arthur at Nth Sydney Cancer Ctr who was the specialist who placed Garry on Pegasys Interferon recently...
Yes, we are still awaiting Garry to sign up on the MATEs FORUM. I will call him about that today for you, and give him a nudge etc... As I am sure he might be able to dispel some of the issues concerning side-effects of Pegasys...
Best wishes Kate & talk again soon...
Steve
Re: ET and Hydrea
Hi Kate
Hello and welcome to the site... 13 years is such a long time on HU. Have you spoken to your specialist regarding pegylated Interferon.
I am on a combination therapy and Interferon is part of that combination the slow release version is used once a week, after speaking to my specialist his thought was/is to start on a small dose and build up once the body adjusts to the interferon. This obviously is different from patient to patient... but your specialist would guide you on that..
My specialist once had me on Pegylated Interferon alpha "2A" 3 to 4 times a week which was an emotional and physical challenge. That was before the slow release version was introduced on the PBS.
It is early days yet but I am optimistic and so is my Hematologist... Research from overseas including studies in Denmark, Italy and the United States have good reports using Interferon and combination therapies.
Anyway take care.
Hethro
Hello and welcome to the site... 13 years is such a long time on HU. Have you spoken to your specialist regarding pegylated Interferon.
I am on a combination therapy and Interferon is part of that combination the slow release version is used once a week, after speaking to my specialist his thought was/is to start on a small dose and build up once the body adjusts to the interferon. This obviously is different from patient to patient... but your specialist would guide you on that..
My specialist once had me on Pegylated Interferon alpha "2A" 3 to 4 times a week which was an emotional and physical challenge. That was before the slow release version was introduced on the PBS.
It is early days yet but I am optimistic and so is my Hematologist... Research from overseas including studies in Denmark, Italy and the United States have good reports using Interferon and combination therapies.
Anyway take care.
Hethro
Re: ET and Hydrea
Hi,
Firstly, thank you for providing the opportunity to reach out to other people going through similar challenges, it’s fantastic having this in Australia.
Just wanted to let you know that I am 4 weeks into the Interferon - Pegasus weekly injections and, although not at the highest dose yet, I have not had any obvious side effects. The other good news after the recent blood tests is that the platelet count is down to 1125 from 2500. Very happy and look forward to hitting the target of 500 for the control of that side of PCV. I go away in August for a month in Europe and need the blood as stable as possible so I don’t have to worry while I am away. I am also on naturopathic supplements, have eliminated sugar, caffeine and alcohol, which I am sure is helping my body to stay in balance. Highest dosage starts next week, Specialist appointment in another 5 weeks so will keep you posted as the next few weeks unfold. FYI I was on Hydrea for 2 years but started to get mouth ulcers and couldn’t cope, had a break from drugs, except aspirin, until I couldn’t ignore the blood test results....was feeling fine otherwise!
Good luck everyone as we walk this journey.
Firstly, thank you for providing the opportunity to reach out to other people going through similar challenges, it’s fantastic having this in Australia.
Just wanted to let you know that I am 4 weeks into the Interferon - Pegasus weekly injections and, although not at the highest dose yet, I have not had any obvious side effects. The other good news after the recent blood tests is that the platelet count is down to 1125 from 2500. Very happy and look forward to hitting the target of 500 for the control of that side of PCV. I go away in August for a month in Europe and need the blood as stable as possible so I don’t have to worry while I am away. I am also on naturopathic supplements, have eliminated sugar, caffeine and alcohol, which I am sure is helping my body to stay in balance. Highest dosage starts next week, Specialist appointment in another 5 weeks so will keep you posted as the next few weeks unfold. FYI I was on Hydrea for 2 years but started to get mouth ulcers and couldn’t cope, had a break from drugs, except aspirin, until I couldn’t ignore the blood test results....was feeling fine otherwise!
Good luck everyone as we walk this journey.
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MPN-MATE Admin
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Re: ET and Hydrea
Hey SusB,
Nice to hear from you...
Glad to learn that you are also happy to see an Australian MPN Forum too... I believe we have needed one for some time...
Like you, when I was first started on HU, I also could not tolerate it for very long either. I also had all sorts of bleeding events along with mouth ulcers, (& one that refuses to heal of its own volition). Definitely not a fan of HU, and yet for so many others it seems to work just fine... Strange really...?
Wow! Your platelets are so very high too... When I was first diagnosed mine were at 1.7Million but yours were once 2.5M, that is so high.
Yet you say that you are a PV patient too, whereas, I was originally ET and then MF. My platelets are still quite high in the 900s. I have already had two (2) TIAs, (minor brain strokes), thought to be contributed to via very high platelets... I did try Interferon Alpha for a time. However, they were daily injections, and I also found that my depression was exacerbated via that experience. Nevertheless, as alluded to above, as much as we might all seem to be quite alike, from time to time, we are obviously all quite uniquely different too... (?)
It's great that you have also tried to maintain a natural diet, with no sugar, caffeine and alcohol. I still drink a weak black coffee. However, my diet is anti-inflammatory otherwise, much like your own. That and my daily intermittent fasting, coupled with my cycling regime seems to be really working for me. My original BMB revealed a Grade2 level of bone marrow scarring, however, that has since been reduced to Grade1, and I do attribute much of that molecular reversal to my diet, and exercise regimes.
These days, I am on Ruxolitinib, along with low dose enteric-coated aspirin daily, and that has made me a tad more energetic and the mental cloud I use to live inside has largely disipated these days, thanks to the Ruxolitinib, I believe...
Garry, is also a Post PV / MF patient, who is now also taking Pegasys weekly injections, and believes that they are really helping him too...
Hopefully he will fill you in a bit more shortly.
Oh, one last thing...
When you Post, Look for the 'New Topic' Button, and give your new Post a Title of its own, otherwise it might become lost inside another Post thread etc...
Welcome to MATEs Susb, so happy to see you here and if you are based in Sydney or visiting anytime do let me know and perhaps we can do a Cafe Catchup...?
Best wishes & stay happy and well...
Steven
PS. I am sure that you will be fine in time for your European escape trip soon...
PPS. If you have any questions at all please feel free to ask away. This FORUM is a little different from some others, and if I can ever help you find your way around just let me know okay?
Nice to hear from you...
Glad to learn that you are also happy to see an Australian MPN Forum too... I believe we have needed one for some time...
Like you, when I was first started on HU, I also could not tolerate it for very long either. I also had all sorts of bleeding events along with mouth ulcers, (& one that refuses to heal of its own volition). Definitely not a fan of HU, and yet for so many others it seems to work just fine... Strange really...?
Wow! Your platelets are so very high too... When I was first diagnosed mine were at 1.7Million but yours were once 2.5M, that is so high.
Yet you say that you are a PV patient too, whereas, I was originally ET and then MF. My platelets are still quite high in the 900s. I have already had two (2) TIAs, (minor brain strokes), thought to be contributed to via very high platelets... I did try Interferon Alpha for a time. However, they were daily injections, and I also found that my depression was exacerbated via that experience. Nevertheless, as alluded to above, as much as we might all seem to be quite alike, from time to time, we are obviously all quite uniquely different too... (?)
It's great that you have also tried to maintain a natural diet, with no sugar, caffeine and alcohol. I still drink a weak black coffee. However, my diet is anti-inflammatory otherwise, much like your own. That and my daily intermittent fasting, coupled with my cycling regime seems to be really working for me. My original BMB revealed a Grade2 level of bone marrow scarring, however, that has since been reduced to Grade1, and I do attribute much of that molecular reversal to my diet, and exercise regimes.
These days, I am on Ruxolitinib, along with low dose enteric-coated aspirin daily, and that has made me a tad more energetic and the mental cloud I use to live inside has largely disipated these days, thanks to the Ruxolitinib, I believe...
Garry, is also a Post PV / MF patient, who is now also taking Pegasys weekly injections, and believes that they are really helping him too...
Hopefully he will fill you in a bit more shortly.
Oh, one last thing...
When you Post, Look for the 'New Topic' Button, and give your new Post a Title of its own, otherwise it might become lost inside another Post thread etc...
Welcome to MATEs Susb, so happy to see you here and if you are based in Sydney or visiting anytime do let me know and perhaps we can do a Cafe Catchup...?
Best wishes & stay happy and well...
Steven
PS. I am sure that you will be fine in time for your European escape trip soon...
PPS. If you have any questions at all please feel free to ask away. This FORUM is a little different from some others, and if I can ever help you find your way around just let me know okay?
Re: ET and Hydrea
Hi Susie B
Good to hear your platelets are finally coming down. As Steven said I am on Interferon once a week injection of 45ug. I did take 90 and then 135ug but had to drop back down just because it was too much too soon. My platelets and Hemoglobin have dropped but then again I am on a combination of Ruxolitinib and Interferon which has caused the drop to be a little too much, but I will follow up with another blood test soon and hopefully my Hematologist will adjust the dose.
Interferon is really very toxic so the body has to adjust but reading several reports it has been proven to put an MPN into remission sometimes for many years even when you stop injecting the drug.
Are you having any itching, flu like symptoms or a drop in any of your results apart from your platelets.
regards Garry
Good to hear your platelets are finally coming down. As Steven said I am on Interferon once a week injection of 45ug. I did take 90 and then 135ug but had to drop back down just because it was too much too soon. My platelets and Hemoglobin have dropped but then again I am on a combination of Ruxolitinib and Interferon which has caused the drop to be a little too much, but I will follow up with another blood test soon and hopefully my Hematologist will adjust the dose.
Interferon is really very toxic so the body has to adjust but reading several reports it has been proven to put an MPN into remission sometimes for many years even when you stop injecting the drug.
Are you having any itching, flu like symptoms or a drop in any of your results apart from your platelets.
regards Garry
Re: ET and Hydrea
Hi Garry,
I am getting another blood test this week so will do a full comparison of all blood levels.
Had my first full dose 135 this week and no flu like symptoms or anything else so far.
I am glad to hear you are tolerating your regime and finding what is right for your body.
Stay well.
Sue
I am getting another blood test this week so will do a full comparison of all blood levels.
Had my first full dose 135 this week and no flu like symptoms or anything else so far.
I am glad to hear you are tolerating your regime and finding what is right for your body.
Stay well.
Sue
Re: ET and Hydrea
Hi Sue
Good luck on the blood test. So how many days ago did you take the 135 and what did you increase from.... and you were saying you have no adverse issues which is sensational.
Please let me know if there is a difference in your blood counts. going to the higher dose there should be... maybe.
Regards
Garry
Good luck on the blood test. So how many days ago did you take the 135 and what did you increase from.... and you were saying you have no adverse issues which is sensational.
Please let me know if there is a difference in your blood counts. going to the higher dose there should be... maybe.
Regards
Garry
Re: ET and Hydrea
Hi Garry,
The progression was 45 for 2 weeks, 90 for 2 then 135. So far so good. Test results back this week shows another decrease to 925 platelets. As I may have mentioned, I have changed my diet to an anti inflammatory regime and I am seeing Bruno Marevich, a naturopath in Castle Hill who is monitoring all the internal organs; endocrine system etc. saw him today and he is very happy with my progress towards a healthy body. I attribute the lack of obvious side effects to his guidance and nutritional supplements. The monthly cost is high but worth it as I am feeling so energetic and happy overall.
When I return from holiday later this year, would love to have the opportunity to meet up, as per the offer for coffee and a chat on another post....must say that caffeine is definitely off the menu though! Herbal tea for me.
Hope things are going well for you and the rest of the forum readers.
Sue
The progression was 45 for 2 weeks, 90 for 2 then 135. So far so good. Test results back this week shows another decrease to 925 platelets. As I may have mentioned, I have changed my diet to an anti inflammatory regime and I am seeing Bruno Marevich, a naturopath in Castle Hill who is monitoring all the internal organs; endocrine system etc. saw him today and he is very happy with my progress towards a healthy body. I attribute the lack of obvious side effects to his guidance and nutritional supplements. The monthly cost is high but worth it as I am feeling so energetic and happy overall.
When I return from holiday later this year, would love to have the opportunity to meet up, as per the offer for coffee and a chat on another post....must say that caffeine is definitely off the menu though! Herbal tea for me.
Hope things are going well for you and the rest of the forum readers.
Sue
Re: ET and Hydrea
Hi Sue
Those results sound great and seeing the naturopath is working well for you. It's all positive Sue.... would you like to meet up for that herbal tea before your trip.
Regards
Garry
Those results sound great and seeing the naturopath is working well for you. It's all positive Sue.... would you like to meet up for that herbal tea before your trip.
Regards
Garry
Re: ET and Hydrea
Hi Garry,
Needs to be sometime in October when we get back as it’s bedlam on weekends for the next month. Will touch base when we return.
Stay well, and thanks again for the opportunity to share with others.
Sue
Needs to be sometime in October when we get back as it’s bedlam on weekends for the next month. Will touch base when we return.
Stay well, and thanks again for the opportunity to share with others.
Sue