Which drug is considered less toxic on the body - hydroxyurea or besremi?
My MPN specialist put me on hydroxyurea a few years ago with the plan to switch over to besremi in a couple of months. I did get insurance approval for the besremi a long time ago but I've been hesitant to make the switch. At this time I am getting concerned about the toxic effects besremi may be having on my body & am wondering if besremi is the safer drug since it is not actually chemo.
You have asked a question where facts, opinion, and personal experience play a role in the answer.
Hydroxyurea is a chemotherapy drug. "Hydroxyurea is highly toxic drug with a low therapeutic index." American Society of Health Sytem Pharmacists. It works by interfering with DNA activity in hematopoietic stem cells and other cells in your body. HU is teratogenic, carcinogenic, mutagenic, clastogenic, and leukemogenic (with long term use). HU is a non-specific agent that affects all hematopoietic stem cells, both normal and mutated. HU cannot lower your mutant allele burden in the long-term.
Besremi is an immune modulating drug. Its exact mechanism of action unknown. BES "binds to type 1 interferon receptors and activates tyrosine kinase, incl. Janus kinase 1 (JAK1), tyrosine kinase 2 (TYK2), and activator of transcription (STAT) proteins, producing antiproliferative effects in the bone marrow. ePocrates It appears that Besremi affects mutated hematopoietic stem cells more than it affects normal cells. It can reduce allele burden and may decrease risk of progression.
Both drugs come with Black Box warnings. The Black Box warnings are different as are the contraindications and potential adverse effects. By definition, HU is a cytotoxin. BES is not a "toxin" but certainly can have toxic effects.
We each react differently to each of these drugs, We each have our own treatment goals and risk tolerance. We each have our individual treatment preferences and strategies.
I have used both drugs. HU was ineffective for me and I was unable to tolerate it. I experienced toxicity even at very low doses. I started on Pegasys then switched to Besremi. Besremi has been much more effective and far easier to tolerate. I have achieved a complete hematologic response at a low dose (150mcg). In 18 months, my allele burden reduced from 38% to 9%. I am hopeful for achieving a deep molecular response. Note that I also have a non-driver mutation (NF1) that increases my risk for progression to AML. Taking a drug that potentially increases my risk of leukemic progression makes no sense for me. Taking a drug that reduces allele burden and possibly MPN progression does make sense,
I would not hesitate to switch from HU to BES. I would embrace the opportunity. That is the right answer for me. You will have to decide what the right answer for you is. Some questions you might consider include:
Do I prefer chemotherapy or immunotherapy?
What are the contraindications I need to consider?
Which adverse effects and I more willing to risk?
How do I define my treatment goals? Do I care about reducing my allele burden?
What is it that I fear about switching to Besremni? What is it that I hope to gain?
Wishing you all the best as you make this decision.
Thank you sooooo much for your very informative response! I honestly don't know why I am so hesitant to go on besremi - I think it's injecting myself that bothers me. After reading your response I think I am going to give it a try
The injections are very easy to do. I can barely feel them. The nurses at your hematology office will train you. It is a good idea to do the first injection in a medically supervised setting.
It is very easy to practice before your first injection. You can stuff an exam glove with other exam gloves. This greats a fake roll of skin and fat. Just hold it over your belly and pretend that you pinched an inch of skin. They can give you a syringe with saline in it. Inject away until you feel comfortable. It took me one time since it was so easy to do.
Wishing you all the best.
I hope you find Besremi suits you as well as has me. Also hope you found the lively conversation we had on your thread informative. The answers are not always clear. We just need to make the best decisions we can.
Wishing you all the best.
Hi Hunter,
I was just at my hematologist. I asked about Pegasys and she told me I could not self inject. I would have to go to their office every week. I do not want to do that trip every week. So I stayed on HU for now.
I know my Medicare drug plan covers Pegasys. I do not know if Medicare and my supplement covers it in their office.
Eileen
You most certainly do not need to go to the office to get the Pegasys injection. In fact, Medicare will probably not pay for an in-office injection for Pegasys since it is a medication that is intended for self-injection.
Call your Medicare Part D plan for verification. You should find it easily on the formulary. You will want to know what tier the Pegasys is on and what the prior authorization process will be.
It sounds like your current hematologist is not a MPN Specialist. You may want to consider a second opinion or switching doctors. You need for your provider to be familiar with all of the MPN treatment options and how to access them.
Wishing you all the best.
The MPN specialist list for Pennsylvania has only three names, Two are extremely far from us. The other is in Philadelphia. There is so much crime going on in Philadelphia that we are not comfortable going there. Pegasys is a tier 3 and is covered by my excellent retiree drug plan. I can order from CVS, Rite Aid, etc. It is $100 for 30 days.
Thank you, Eileen
Note that you do not have to stay in-State to consult with a MPN Specialist. I travel from West Virginia to Baltimore, Maryland. It is worth the trip.
It sounds like you have a similar retiree plan to mine, even the same co-pay. With a Tier 3, you will have to get Prior Authorization. It will likely get rejected initially and require an appeal. Your doctor can handle the first-level appeal, doing a peer-to-peer review. That will usually work in this situation. If not, you may have to follow up with your own appeal.
A few things to note. HU and PEG are both used off-label to treat MPNs in the USA. HU = $25/60 caps. PEG=$4,200/4 doses. It is no surprise that HU is easy to get approved while PEG takes more work. The prescriber often needs to cite the extensive literature supporting the use of PEG to treat MPNs. It is helpful to note any HU adverse effects/cautions-contraindications etc.
Note that it takes additional time and work from your prescriber to get PEG approved. This time is not compensated. Sometimes prescribers benefit from encouragement and appreciation for this extra work.
All the best.
Hi,
I have PV and live in the outer suburbs of Phila. I chose to go to an academic center(U of Penn) so I could be seen by a MPN specialist. There is parking directly under the building and it is safe and well staffed. Your health is worth the trip!
Do you see Dr. Elizabeth Hexner? She gets great reviews.
Thank you, Eileen
Hello,
I am seeing Dr.Shannon McCurdy. She is part of the MPN team. She is a clinician but also a professor/researcher at the university and was the one to encourage me to start Besremi. The financial part of this has been challenging. The university is only covering 50% and now I have enrolled in PharmaEssentia's program, hoping I will get coverage from them or this drug is too expensive to continue. Good luck !
True, Medicare denied my 6 Besremi injections because the clinic seemingly did not know NOT to do the injections for me.
I bet that was a big bill. Just to buy Pegasys can be very expensive.
Thank you, Eileen
Hi Eileen,
May I ask why you're more interested in Pegasys vs Besremi?
I'm just curious, but I do think I benefit from the longer 2-week intervals between injections, as I seem to have less of the roller coaster ride I seem to hear from at least a subset of the Pegasys patients.
Best,
PA
Some people take Pegasys once a month and some every two weeks. I have not seen a lot of discussion on Besremi. I think it is more expensive than Pegasys. I have ET JAK2 and only currently taking 500 mg HU on Mon/Wed/Fri instead of daily. Hematologist mentioned Anagrelide as a next step when I asked about Pegasys. I am also on a blood thinner for AFib, blood pressure meds, Statin, etc. Sometimes I feel like I am taking too many medications. It is all poison!
Eileen
You say ‘it is all poison’.
It could also be argued that each one of those meds mentioned is addressing your high risk for thrombotic events, and as such they are potentially lifesaving.
Just saying!
The clinic apparently has absorbed the $120,000 worth, as it is not coming to me. And I switched doctors hoping the new one has more experience. Now I'm still off medicine, waiting to see if I can get financial aide from the pharmaceutical company. It has been a slow, frustrating, arduous project, going on and on to yet a new level as my platelets rise wickedly. I am currently in a Catch 22, as the company says my family retirement income is too low but Medicaid is off the table because I'm not yet taking social security and instead choosing to livie off investments. Fingers crossed that clotting does not happen in the interim. Doing qigong, taking supplements, getting some acupuncture and trying not to scream.
Hi Ovidess,
I noticed that you didn't mention aspirin- one of the mainstays for preventing thrombosis...
Are you also taking aspirin daily?
That was the very first treatment recommendation I was given.
Best,
PA
yes indeed, aspirin!
Just curious what was the explanation from medicare on why your claim was
denied?
"The Medicare program provides limited benefits for outpatient prescription drugs. The program covers drugs that are furnished incident to a physician's service provided that the drugs are not usually self administered by the patients who take them... this drug is determined to be self-administered and therefore not covered by the Medicare program."
OK thanks. I was thinking about getting it as an outpatient.
What happened to the $120,000 bill? Hard to believe the clinic would eat that loss. Thanks.
The clinic applied numerous times to Medicare for an exception. Their office had told me that my insurance B and G would cover it nicely, and I documented that and contacted my congressperson too to ask "what gives?!" I know her office contacted my medicare drug plan (which was not to blame) but I don't know if they talked to the clinic. I think the clinic just did the fair thing. I think I paid about $43 of that claim. They did not put in writing that I will not be charged, but they've said so numerous times.
I am back on Besremi, but will stay at a 100 mcg dose, throwing out 400 mcg of this damn expensive stuff each time. Doing the injection at home is still a demanding chore for me, but I've done it only three times and I expect it to become second nature. It really was not necessary for me to go in to the clinic for it. My initial doctor was fearful about Besremi and all its black box warnings and wanted to be in charge of it until my dose stabilized. By 300 mcg, my liver enzymes were off and I stayed off it all summer while the liver detoxed itself and I applied for financial aide from the pharmaceutical. (Because even self injecting is expensive as it is a tier 4 or 5 drug...My medical expenses this year were bad even without the $120,000 bill, with all the side baseline tests to assure that my heart, eyes, etc were handling things well.)
Injection is fine you won’t feel it just put ice pack on area you want to inject. I pinch skin on lower stomach. Never feel it & no daily tablets to take . 👍
Hi ERei,
I switched from HU to Besremi in a large part due to the toxic effects I was experiencing from HU, in a small part because of my strong family [and no my own personal] history of skin cancer, and almost as much as the 1st reason, because it was [?is] in the only family of MPN treatments that may be able to alter the natural history [AKA course and progression ]of the disease- by eradicating the mutant stem cells.
Finally, the simplest approach, and I admit it can be taken to too far an extreme if you try is that at the very least interferons are natural substances, which our bodies already make themselves naturally, even if the medication itself is a heavily modified form and is taken in supraphysiologic dosages.
For me the differences were clear cut, and I have never regretted switching from HU to Besremi.
In fact, my only regret is that I let myself be talked into taking HU in vthe first place- especially since the only reason for doing so was that my generalist Heme/Onc MD had only had negative experiences from treating leukemia patiens with its earliest formulations "in the old days".
I still have the oral hypersensitivity which was just one of my adverse effects from HU, but which has basically removed my ability to eat even mildly spicy foods- granted a relatively small sacrifice given what else I've read here, but one I experience daily.
I hope this was some small help in your decision-making process.
Best regards,
PA
PS: I just saw the note below about the injections-and I agree they are very mild and very tolerable [unlike Lovenox- those stung like wasps and fire], even at the maximum 500 mcg doses I am injecting.
YMMV
The Silver MPN Center in New York City treated 470 PV patients over a 30 year period and this is how their outcomes differed depending on their treatment: 20 years after diagnosis:
95% of PV patients who had been treated with interferon were still alive, 15% of them had progressed to post PV myelofibrosis
63% of PV patients who had been treated with hydroxurea were still alive 41% of them had progressed to post PV myelofibrosis.
as usual we need to apply some reality to this info. 95% does not include the ones who had to drop out of treatment due to sides, drop out is 30-66% depending on which expert you listen to. Also a number of expert docs are sceptical about these figures from Silver MPN centre.
you see if 95% survived 30 years, one thing is most patients are diagnosed in their 60's so after 30 years they will be in their 90's, ive never heard of any MPN patients in their 90's never mind 95% of MPN patients?
also if 95% of patients taking Inf lasted 30 years, I think every haem on the planet would be prescribing only Inf, I wonder why they dont?
its probably the best drug we have currently (out of a poor bunch) but lets keep it real, again
I understand your dilemma, it’s a really hard decision.
All drugs will have some toxic effects, and we will all react in different ways. I am on hydrea and am doing ok seven years on, but I do absolutely appreciate for others the side effects prove too unsuitable to continue. Equally however, the same can be said for Besremi. You just have to read posts on this forum from some members response to this drug. Of course, this doesn’t make it any easier for you.
I would take your time to decide, and do plenty of research from reputable sources. Hopefully, you’re under the care of a MPN Specialist who will help alleviate any concerns you may have about both drugs. Don’t put yourself under any unnecessary pressure until you’re comfortable with your choice.
I am also unsure about Hunters remark on HU being leukomogenic with long term use. I am of the belief LT is related more to advanced age and molecular profile.
Hydroxyurea has consistently shown to have no increased risk of LT and remains a standard treatment for MPN patients [17, 18, 20].
google.co.uk/url?sa=t&rct=j...
For sure , Bes/Peg would be my drug of choice over hydroxy or Rux if I could tolerate it but many like me cant. Hydroxy serves a lot of people very well with no side effects, some docs believe long term use can be leukomogenic but other experts disagree, I have been to doc conferences in NY where one doc gave a presentation proving in his view it wasnt leukomogenic (as usual docs disagree) , so we have to balance out the pros and cons and quality of life.
Thanks for sharing your thoughts and the referenced paper. There is disagreement about the intrinsic risk of leukemic progression associated with HU. While the evidence is mixed, there is enough that there is a need to warn patients of the potential increased risk of leukemic progression. I believe Dr. Harrison referred to it as "an unquantified" increase in leukemic risk. It is reported (Dr. Richard Silver and others) that the risk is not evident until 10 - 15 years of HU use. The complication is that people with MPNs can progress to AML in the absence of medication adverse effects.
It is important to understand that just because something can happen, it does not mean that it will happen. This particular "unquantified" risk is just one of the considerations we need to take into account.
These are some of the warnings from credible sources
"Using this medicine for a long time may increase your risk of developing leukemia (cancer of the blood)..." mayoclinic.org/drugs-supple....
"Serious Risks - secondary leukemia (long-term use)" epocrates.com/online/drugs/...
"Carcinogenicity. Hydroxyurea is genotoxic and is a presumed human carcinogen; also, mutagenic and clastogenic in vitro. Secondary leukemias have been reported in patients receiving long-term therapy for myeloproliferative disorders (e.g., polycythemia vera, thrombocythemia). Carefully consider risks of developing secondary malignancies against the benefits of therapy. " drugs.com/monograph/hydroxy...
"Hydroxyurea used to manage myeloproliferative disorders can cause secondary leukemias. A case series detailed three patients with essential thrombocythemia who were continuously receiving hydroxyurea for 47, 81, and 90 months had a leukemic transformation. " ncbi.nlm.nih.gov/books/NBK5....
Unfortunately, conducting a definitive study on leukemic risk with HU would be take considerable time and complexity. There is no financial incentive to conduct such a study since it would not lead to new drug development. In the absence of definitive replicated studies, I think it is safest to conclude that there is some degree of risk, but we may never know how high the risk is.
Thank you for your contribution to this discussion. It is always good to hear different viewpoints.
Thanks for your response.
“Hydroxyurea used to manage myeloproliferative disorders can cause secondary leukemias. A case series detailed three patients with essential thrombocythemia who were continuously receiving hydroxyurea for 47, 81, and 90 months had a leukemic transformation. " ncbi.nlm.nih.gov/books/NBK5....
This is just my opinion on the above.
I think three patients with ET who transformed to Leukemia whilst on hydrea is hardly strong enough evidence of causation.
The specific question I posed to Professor Harrison at the time was ‘Is it now known’ (indicated by yourself) that hydrea is linked to leukaemic progression. I always knew there was some debate on this but being on this medication obviously I wanted to know was there further evidence/ proof.
This was her reply!
The response from Prof Harrison is:
Actually it's not known.
25% of leukaemia in MPN happens in untreated patients.
Leukaemia occurs after many years and usually we would see it starting to occur in very rare patients after 8 years or so.
If the medical community actually felt that HU was certain to increase leukaemia risk we would not use it.
It also has to be balanced against for example risks of stroke, and other thrombotic events which sit at 1.8-4% per year even in treated patients.
healthunlocked.com/mpnvoice...
Outside of the U.K. there is considerable concern that hydrea increases the risk of a PV patient developing acute myeloid leukemia. USA Example:
Both Dr Silver and Dr Spivak are not fans of hydrea. Therefore, in my opinion there will be some bias, something we must always be alert to.
I like to look at a good selection of professional well sourced and up to date research papers whenever I question something. Even then, you could go round in circles with conflicting information unfortunately!
You nailed it exactly! The experts do not agree. Neither do we. And that is OK. Provided we keep supporting each other in making the best decisions we can then it is all good. Sometimes we have to make decisions based on unclear data and conflicting opinions. It helps when we share ideas and information and keep supporting each other.
An excellent point, Hunter.
Anyone else lost hearing with interferon as I went deaf in one ear. I have had a treatment break and all is well and have restarted at a half dose and am being carefully monitored - hydroxy didn’t work for me whereas interferon brought my counts to normal after a year of use. If necessary I’ll be switched to Rux - it’s all a huge and varied guessing game. The trouble is we all want surety but it isn’t there for anyone in life. We just have to play it the way that works best for us at the time with whatever information is available to us, knowing that this will constantly change.
Not all US docs believe that
Try this:
Occurrence of acute myeloid leukemia in hydroxyurea-treated sickle cell disease patient:
"Hydroxyurea (HU) has been widely used in sickle cell disease. Its potential long-term risk for carcinogenesis or leukemogenic risk remains undefined."
"The above-mentioned data indicates that the patient may have developed acute myeloid leukemia with myelodysplasia-related changes (AML-MRC) as a direct result of HU exposure."
ncbi.nlm.nih.gov/pmc/articl...
Unfortunately I cannot open that link, so I can’t comment. Is it just one patient?
I have posted another link however (2023), which expands on the complexities surrounding SCD and the development of AML/MDS.
In conclusion, several cases of MDS/AML have been reported in SCD leading to the hypothesis that SCD may lead to the development of hematopoietic malignancies, EVEN IN THE ABSENCE of DISEASE-MODIFYING TREATMENTS. The increased risk of leukemogenesis is certainly multifactorial and related to the pathophysiologic mechanisms of the clinical manifestations of SCD, which may promote accelerated aging of hematopoiesis. A prevalence of clonal hematopoiesis in SCD patients should demonstrate a higher risk than in the general population.
google.co.uk/url?sa=t&rct=j...
Hi mhos61,
I don't know why you can't open the link, it worked fine for me from both my home and work computers...
It is just about 1 patient, but the reason I included it is because of the detailed molecular analysis they performed which makes the link between HU exposure as causation for AML much more plausible, if not concrete.
I'll read your reference when I get home- thakn you for it.
PA
Thanks, I managed to open it this morning. For some reason last night I was getting the message ‘safari can’t open the link’.
Much Appreciated!
I do hear your argument. However, the fact remains correlation does not indicate causation. Yes, we can be ‘suspicious’ but until there is concrete evidence to suggest otherwise I believe we should be careful in how we word something that isn’t proven.
Ainsley
May I ask what issues did you have with interferon? I too have contemplated at times changing to Pegasys. However, I am on such a low dose of hydrea with no side effects that on reconsideration I am always of the opinion I could be jumping from the frying pan into the fire. But I’d never say never either!
Yes, with regard to Hydrea and leukomogenicity, this subject came up a couple of years ago. I posed the question ‘is this now known’ as was indicated at the time to Professor Claire Harrison. You can read her reply if you look at my profile and look for the post I addressed to Maz.
MPN Specialist in the USA shares her experiences prescribing Pegasys: youtu.be/OsdoYoA1kLQ?si=1tr...
I admire this MPN Specialist!
I respect Dr. Fleishman too. She has some very informed views on a number of topics. I sat next to her at one of the MPN Forums. Very interesting and knowledgeable MPN Specialist.
I think there is merit to your thoughts on not changing from HU to PEG. If it is working and you are tolerating it, why switch? I did have a different experience with HU. It was ineffective and I experienced toxicity even a very low doses. The IFNs have been much more effective and far easier to tolerate. As you know, others have a very different experience.
Wishing all the very best my friend.
Why switch?
It is important to question everything including treatment. I would be a fool not too.
I do like the idea of Pegasys addressing the ‘allele burden’ although there is no proof that it halts disease progression. And my allele percentage is 3.69 seven years on from diagnosis, it would be nice to keep it low. However, as mentioned, I have no issues with my current treatment, so that and the fear of developing an autoimmune issue deters me. But never say never!
Also, when you address hydrea and it’s link to leukemia progression (which you do) I’ll be honest, it unnerves me. If I were a younger patient I would definitely be on interferon simply because of the conflict around this subject.
Because I am on hydrea, this is why I research and question this particular question . I like to balance the argument where possible, that’s all.
I am particularly comforted by the recent quote (2022) from the Journal of Haemotology.
‘Hydroxyurea has CONSISTENTLY shown to have no increased risk of LT and remains a standard treatment for MPN’.
healthunlocked.com/redirect...
Best wishes to you also
The Silver MPN Center in New York City treated 470 PV patients over a 30 year period and this is how their outcomes differed depending on their treatment:
20 years after diagnosis:
95% of PV patients who had been treated with interferon were still alive 15% of them had progressed to post PV myelofibrosis
63% of PV patients who had been treated with hydroxurea were still alive 41% of them had progressed to post PV myelofibrosis.
Source: tinyurl.com/544sybph The hydroxyurea patients didn't die from progression directly to AML, but from progression to post PV MF and then to AML (roughly 25%) or progression to transfusion dependence and worse (roughly 75%). Other benefits of interferon include suppression of other blood and solid tumor cancers and suppression of various viral ailments such as the common cold.
Thanks. I do know Dr Silver is pro interferon, no issues with that. I would like to see more evidence however from a broad range of MPN Specialists on these findings.
That’s just me!
I was on 45mcg for 3 weeks , itching was dramatically worse and impossible, mood changed , felt depressed and disinterested in anything, usually I am upbeat, interested and enthusiastic. Hasselbalch did warn me for a small minority Peg can make itch dramatically worse. I was already an Olympic itcher and adding Peg sent it through the roof. Interesting point here , when I mentioned this to Dr Silver at a US conference he said he was surprised I had side effects! , as if he had never heard of Peg causing sides, that was his credibility pretty much gone as far as I was concerned. However as I always say I would recommend anyone to try it as it is probably the best drug we have at the moment in that it MIGHT for a minority (not 95%) help slow down the disease, that’s just my opinion although experts like Clair Harrison say non of the drugs slow it. If we have to take a drug might as well try the one that SOME experts say might slow progression, one can always stop it if poor tolerance. I remember asking Clair Harrison about 11 years ago which was the best drug and she replied maybe the one that gives the best quality of life, there might be something in that.
Thanks for your time. ‘Maybe the one that gives the best quality of life’ is indeed a great answer!
For me HU severely affected my QOL and only reduced my platelet count very slightly even after an increased dosage. I took it for 7 months and expected to see some meaningful reduction but they only dropped 50k. In fact they reached their highest level in 10yrs whilst I was on it.I ended up with awful burning peripheral neuropathy in my feet and lower legs for most of 2022.
Needless to say I stopped taking it and am now just on aspirin again.
My QOL has returned and if my haematologist thinks medication will be necessary again I will opt for Pegasys and hope for the best.
I know I was unlucky as most manage on HU for years but it didn't work for me.
Whatever works to help maintain or improve QOL is the aim and a very good way of looking at it.
Ultimately we can only make the best decision based on our own circumstances.
Sorry to hear this Phantasia. Clearly you were hydrea resistant/intolerant, as some patients’ are. It totally makes sense that you quit and regained some quality of life back.
Good to see the risk criteria for cytoreductive therapy has been addressed with regards to age/Jak2 mutation in Australia too.
Not sure if you’re asymptomatic? I wish you well in any future decision making regarding treatment.
I was diagnosed 11 years ago and was mildly symptomatic at the time. Headaches, visual disturbances, dizzy spells etc.Once I started on aspirin no more symptoms and fortunately I have stayed that way so far.
Thank you for your good wishes.
Same to you.
Such a lovely community here.
"I remember asking Clair Harrison about 11 years ago which was the best drug and she replied maybe the one that gives the best quality of life, there might be something in that."
Wow I agree with that 100%
And for many of us Hydroxyurea is a great med.
I have zero side effects, don't even know I'm taking it.
How many people on IFN can say that?
Just my 2 cents!
I am also lucky - 3 years of hydroxy and have really been on only 5 capsules a week for all of that time with no side effects - although my skin cancer may have increased (but perhaps it is just the result of a misspent youth in Australia). I now take vitamin B3 niacimadmine and that is helping.
I have also been offered Pegasys but have been reluctant because the HU seems to be working well - certainly as far as I can feel and my bloods show.
So hard to know!
Hi babs1922I am in Tasmania. HU was a disaster for me. See post above.
My haematologist seems reluctant to prescribe Pegasys.
Anyway have been back on just 100mg aspirin daily and my QOL has returned.
In Australia there was a change in MPN management/protocols last year.
I went from being high risk because I turned 60 back to intermediate risk because I am not JAK2 mutated so the medication protocol is now aspirin only.
The risk of a thrombotic event still concerns me but my platelet levels have remained steady at 600k to 650k.
I am glad HU works for you. Seems to be a good drug for most.
Sorry to hear about your experience
I suspect HU is largely the drug of choice in Australia because it is generally well tolerated and because it is cost effective for the government.
My specialist only offered Peg because I was complaining about the increase in skin lesions.
I started out with venesections but my iron levels were too low.
Definitely cost effective compared to Pegasys. The same in the UK I'd expect.Watching the taxpayer dollars.
Different in the US where most of the cost is picked up by insurance.
The cost consideration would be the main reason Australia leans towards HU.
Also HU is the preferred choice for older patients.
I expect I will have to try medication again at some point but for now I'm okay.
What relevance is age with HU? Is it because we don’t have lots of years ahead of us? I am 71😜
Seeing this old post. That is a surprise Dr Silver would be unaware of the sides. I was served a main course...
Dr. Richard Silver, February 2023: "Our data, the French, the Danish, the Austrian data would indicate that about 15 - 25% of [interferon using] patients have side effects that cause the discontinuation of its use, about the same as that with hydroxyurea": youtu.be/QE4pzHlIL2Q?si=3Se...
At the doc conference last year in NY Gisslinger put up a slide with data from Hasselbalch showing the discontinuation rate for Bes and Peg was 60+%, In a consultation 10 years ago Hasselbalch told me it was around 50% , Clair Harrison recently stated it was over 60%.
In their latest August 26, 2023 paper, Dr's Gisslinger and Hasselbalch wrote: "Only 11.0% of patients in the ropeginterferon [Besremi] arm [of a 7.3 year long clinical trial] discontinued due to drug-related toxicity."
well thats interesting , 11%for Peg and 2.5% for Hydroxy, I dont think I believe either figure, only in Feb this year Dr Kiladjian told me in a conversation its 30% for Peg/Bes.
And only last Autumn Gisslinger presented 60+% at the doc conference. Nobody has ever claimed only 2.5% drop out for Hydroxy, something wrong somewhere. I would love those figures to be correct as then 89% of MPN patients should live forever on Peg/Bes ie 30+ years according to their data. Sounds realistic?
Dr. Kiladjian co-authored the Aug. 2023 paper, along with Dr's Gisslinger and Hasselbalch, that stated: "Only 11.0% of patients in the ropeginterferon [Besremi] arm [of a 7.3 year long clinical trial] discontinued due to drug-related toxicity."
yes I know, I suppose the only question is how did it go from 30% in Feb this year to 11% in August, according to what Kiladjain told me personally ie 30%. I think one thing to consider here is that if you look carefully in the full papers re these Peg trials reported by Silver and the other Peg pro docs is that the trial is using those who they call responders, the non responders are excluded at the start , how else could the figures go from 60 or 30% as reported by Gisslinger and Kiladjian in less than the last 12 months to 11% now, common sense would tell us all those percentages cant be correct. Dont forget Clair Harrison stated 60+ % very recently. Also the 2.5% drop out rate for Hyrdroxy mentioned, I doubt even the makers of Hydroxy would endorse that, everything I have heard about hydroxy mentions drop out rates from about 15% to 25%+. Clearly Something aint right with those figures.
12 years ago it was already known that interferon could induce a durable stage of Minimal Residual Disease in a substantial subset of ET & PV patients:
Thank you for posting your question and generating such thoughtful responses. For me, Peg has been great with my numbers all WNL and minimal side effects (once we found the correct dosage/timing which took about a year). I did not tolerate HU well but the vast majority of patients do. The good news is that for a disease which can be as individual as we all are, we now have choices and work is being done to offer additional options.
oh my goodness, their is so much information in all of these posts. I have nothing to add that is scientific. All I can tell you is my personal experience with Besremi has been very positive. I feel better and other than developing hypothyroidism which we are working on It has been great. My doctor at MDA said no reason to go fast. So, we are going slow. Only increasing monthly if needed and they said I didn’t have to have tight platelet control even though they are barely above normal now. I would say if you are interested you should try it. Lots of us on here have had good success on it and you will never know til you try. No one can predict how they will react. Good luck!
7.3 year long clinical trial comparing Ropeginterferon vs Hydroxyurea, published August 2023:
I changed to Interferon from HU as couldn’t tolerate it . Hair fell out felt exhausted & gastric problems. Have no problem with the Interferon & felt & look normal again thankfully on change of drug . 👍
I tried hydroxyurea, and I had massive neurological problems after just two days. Many people have strong adverse effects to eat in others take it for 20 years without too many problems.
I was in anagrelide, and that eventually cost me heart problems after six years
now I am on Besremi and I feel better than in a long time with very few side effects, including light, joint, pain, or stiffness for a few days after injection. It is so much easier to take just once every two weeks one injection in the belly or thigh.
Besremi actually works on the megakaryocytes, if you have ET instead of just taking care of reducing thrombocytes. It is the only medication that can eventually lead to putting the disease into remission by attacking the source of the problem.
HU is very cheap and is the oldest medication available . It is a chemo. Besremi is like Pegasus, a pegylated interferon, which works over the immune system. It is definitely worth a try. For some people, it takes longer to work and there is often a crossover with the medications. I have slowly reduced my anagrelide over 10 months to just one capsule a day from originally six. In the meantime, I was raising the amount of Besremi all the while having my thrombocytes checked.
it has been approved for polycythaemia Vera, but not yet for ET I received special approval because I was intolerant to the other two medications
good luck. Anag
I just wanted to thank everyone who contributed to this discussion. I've been on HU for over 2 years now and it seems to be working for now so I can't add anything. But, this discussion was so informative and helpful to those of us who are contemplating next steps that I had to thank all of you. Best wishes to all of us on this journey.
Peg vs Besremi side effects?
Hydroxyurea and Anagrelide
