I'm 79, with ET and JAK2. At present I take 500mg Hydroxy and 4×0.5 Anagrelide daily. My platelet count is 660 and slowly rising. I asked my consultant about changing to Pegasys but she said that interferons are not advised for the over-60s. Is this right? Why would my age make any difference? And will I be risking my health if I go ahead with Pegasys?
Risks of Pegasus?: I'm 79, with ET and JAK2. At... - MPN Voice
Risks of Pegasus?
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Sivasi
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Until recently it was considered common practice to reserve IFN for younger pts. One reason is for women the traditional Hydrea is not recommended with pregnancy. Further there can be concerns with use of HU for very long periods although many pts are fine there.
Long term Anagrelide has particular evidence of risks in long term use. One example:
"anagrelide plus aspirin was associated with increased rates (vs HU) of arterial thrombosis (P=0.004), serious hemorrhage (P=0.008), and transformation to myelofibrosis"
nejm.org/doi/full/10.1056/n...
The myelofibrosis risk with Anagrelide is seen in other studies too.
Further your current therapy is not holding your PLT steady.
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So you have good reasons to try something else.
In recent years IFN has been proven effective including its ability to reduce the mutation in most patients. Right here on the forum we see many including me (63 years at start of Besremi) who got this benefit.
So it's a great option. It does have unique but very rare risks, (I suffered this) so it requires close monitoring esp in the first year or two.
Bottom line, IFN for only youngers is old fashioned thinking.
HiThank you EP Guy and all the others who replied to my question. One further question - do people on Pegasys normally combine it with either Hydroxy or Anagrelide, or do you use Pegasys only, and drop the other medication?
There are members who include HU with IFN from what I recall. It's also standard to take both while transitioning from HU to IFN as I did.
I've don't recall any combining with Anagrelide.
One compelling combo is IFN with Rux. One member is doing well with this. Both are effective for PV, and together the effect on the mutation seems really good from some studies discussed in prior posts. But for ET Rux is less studied.
In general a combo is used only if IFN alone is clearly not on a path to get blood counts controlled.
Adding Rux can also reduce the inflammation that IFN can cause for some (I might still be on it if I'd had this combo) But insurance coverage for this is not easy.
I am 80 and have been on Pegasys interferon for more than 12 months. I’m in UK.
Hello Can I ask how you’re getting on with Pegasys interferon. I’m 71 with ET and on hydroxycarbemide but don’t like the thought of long term use of it so would like to know more about pegasys. Thank you Irene
Just fine on Peg. Some itching to start with but that has dissipated. Managed to master self jabbing.
I’ve just started on peg, I’m 70, in the UK. I’m highly unlikely to be pregnant - however - if someone sees a bright star in the east and there are 3 blokes on camels coming up through Yorkshire …………… 🤣
Hi. I have recently started on Interferon and i am over 60. Like you i was on Hydroxy but platelets were still going up, hence the change but nothing was said about my age. None of these drugs are without risks though. I am in UK.
Hi there , I am 76. I was on Hydrea which can cause a secondary cancer namely skin cancer.
Tried Anagrelide to no avail.
Close of 6 years ago I decided to switch to Interferon Pegasus. Never looked back.
What you have to take into consideration is simple, it's your body you decide what and which drug would be your preference. The doctor does not ingest the drug its you.
Hydrea is the cheapest drug available.
Go for it (Interferon) and may it work out for you as well
All the best.
on Peg here too in UK age 62. My local haematologist only offered Hydea but since seeing a specialist it was offered as a joint first line
Absolute rubbish. Hope your consultant does more research before your next appointment. Good luck and be firm if you would like to start peg.
I haven’t heard anything about Peg being not suitable for over 60’s , I know plenty over 70 and some over 80 doing very well on it.
I took interferon for over a year and it wasn't for me, platelets barely budged and my mental health really suffered a known side effect. Shame really as I so wanted it to work. As you can see from comments we all react differently. If you give it a try and it's not for you you're not stuck with it you will probably do really well, this site is a much better place to ask the simply listen to Dr who doesn't take the meds.I am waiting for new meds to come through don't want to do hydroxy long term ....
Hi ciye, What drug are you trying next. Very eager to know other options.
Thanking you in advance,
Janet6
I took hydroxy for 1st year peg for a year and currently 12 months back on Hydroxy I am waiting for bomedemstat to be approved Proffessor Harrison was hoping that would be this year.
Thank you for your reply. I am similar to you. Intolerant to HU and worried about mental health on Peg. Side effects not appealing for other med options. I messaged a person on another website participating in the Bromedstat trial in US. She thinks it will be two years before approval. Hope Professor H. Is correct because Bromedstat sounds more promising for ET than all of the other options. I am well over 65 , 500k platelets, JAK2 , no other issues I am aware of. Only taking low dose aspirin, supplements, exercise and healthy diet at this time. MPN specialist does not agree however with perfect blood with exception of platelets not sure I want to be a science experiment. I know my opinion is not advised or agreed with by most.
Best to you!
Janet
Haven’t heard that Peg has any negative impact for older people.
I’m 56 & have been on for coming up to 4 years.
Consultants all very happy with the results.👍
I’m in my late 60s and take Legasys. I’ve never heard of any age risk.
Hi, I am 64 and just about to start on Pegasys at my own request after taking hydroxy for three years. I was a little uncertain as my haematologist is not an MPN specialist so I emailed Claire Harrison at Guys hospital and asked if we could set up a shared care arrangement with my doctor and everyone agreed. My hydroxy will be reduced gradually when I start on the interferon, fingers crossed the new drug will make me feel better with fewer side effects. Good luck.
Hi Janis I’ve been wondering if you were going to be able to try interferon. I thought that your haematologist would contact Guys on your behalf. Was that not suggested? Do you go to Guys or will it be a phone call. I’m very interested how it all works with shared care and of course if your hair thinning and other symptoms reduce. I’d love to hear how it all goes and hope it all goes really well. Kind regards Irene
Hi Irene, Guys contacted my haematologist after I had emailed Guys, I had not had the courage to mention to my haematologist up to that point that I would feel better with a shared care arrangement. It was all very easy and both parties were open to my request. It appears that they all talk informally so that they can share information and obtain advice about patient care (it's a relatively small community being a rare condition). From what I can gather my own haematology dept will do the bloods and share the information with Guys and discuss treatment plans etc. It has already been decided to let my platelets run a little high ie 600 because I am very active and not at any cardio vascular risk and that way I would not need an increase in dosage. My interferon 'adventure' will start in October after my holidays (my choice) and my hydroxy will be gradually reduced at the same time. I have not been summoned to attend Guys which suites me and I guess if I wanted a telephone appointment then that could happen so we will see how it works out. I expect it will be quite a while before I see any potential benefits taking place. Will keep everyone up to date....I am quite excited! Best wishes. Janis
It is not correct that Pegasys is not recommended for people over age 60. It is true that the guidelines used by healthcare systems often recommend hydroxycarbamide (HU) first in those over age 60. This has nothing to do with the efficacy of Pegasys for those over the age of 60.
One reason that HU is recommended for those under the age of 60 has to do the risks of HU in people of childbearing years. HU is teratogenic and poses a significant risk to any pregnancy. In addition, HU can cause hypogonadism (oligospermia, azoospermia) in males. While this is usually reversible, sometimes the effect is permanent. It is assumed that anyone over the age of 60 will not be planning to have children, so the potential impact on pregnancy and fertility does not matter for patients in this age group.
Another reason that HU is not recommended for people with MPNs under the age of 60 has to do with the risks associated with long-term use of HU (10-15 years). HU is is highly toxic medication with a low therapeutic index. It is a presumed human carcinogen and is mutagenic. An increase in secondary leukemias has been associated with long-term use. Long-term use is also known to cause skin cancers and other dermatologic adverse effects. These long-term risks would not considered to be as significant in people over the age of 60 as they are nearer to end of the probable lifespan for the general population. Someone over the age of 60 would not be maintained on HU for as long as someone age 40.
drugs.com/monograph/hydroxy...
drugs.com/sfx/hydroxyurea-s...
epocrates.com/online/drugs/...
Another reason for the preference for HU in the age > 60 population has to do with the cost/benefit ratio. Simply put, HU is much cheaper than PEG. Here is the rough cost for a potential one-month supply in US dollars.
HU = 500 mg (60 ea): $25.00
Anagrelide = 0.5 mg (60 ea): $56.00; 1 mg (60 ea): $93.00
PEG = 180 mcg/0.5 mL (1 kit, 4 syringes): $4,177.00
All healthcare systems try to reduce costs. This is simple medical economics. The formularies that are put into place will always take cost into account in setting the protocols given to doctors. It is important to understand that many doctors are under pressure to conform to the forumaries they must use. There needs to be a clear justification to spend a significant amount more on a patient's treatment.
It is important to understand that many people are able to tolerate HU and benefit from it. Not everyone will experience the long-term adverse effects associated with its use. It has been in use for a very long time and many doctors are more comfortable with the medications they are used to.
Pegasys comes with its own risk-benefit profile. While it is much easier to tolerate than the older forms of interferon, many doctors have less experience with the PEGylated forms of interferon. It is understandable that some doctors would not be as comfortable with PEG.
It is also important to understand that PEG comes with its own set of risks, contraindications and cautions. The list is not the same as HU nor anagrelide. Each patient needs an individualized assessment of their MPN profile to determine what is the best treatment approach.
Suggest that you review the risks and benefits of each of your treatment choices. Compare the choices to the treatment goals you wish to set and the risks and adverse effects you are willing to tolerate. HU, anagrelide, and PEG are all viable choices. Ultimately, it is your treatment preferences that should drive this decision.
You may want to consider getting a second opinion from a MPN Specialist. Many find this very helpful in reviewing their options. mpnforum.com/list-hem./
Wishing you all the best as you move forward.
Agree and my hematology too.
Thank you so much to everyone for your advice. One more question - is 45mg a normal starting dose for Peg?
Yes. The normal starting dose for Pegasys is 45mcg/weekly.
Yes.. I started with 45 then to 60 and now at a year at 75 and it’s working to bring my numbers down. Good luck!
A great example of why, when if at all possible, it is important to consult with an MPN specialist. Most GPs and many hemos jus do not have the knowledge base or experience to effectively treat MPNs. Good on you for asking the question and demanding clarification.
I'm 77 and was on HU for 4 years, switched to Pegasys 3 months ago and so far it is working better than the HU with fewer side effects.
Yep I just started and am 63
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