Unfortunately, this question came to me after I saw the doctor.
A month ago, I was referred to a hematologist for abdominal pain, abnormal CBC and splenomegaly. This week, after finding JAK2 and a confirmatory bone marrow analysis, the doctor prescribed 500mg HU per day for PV and scheduled a return visit in a month.
My bad, I didn't tell the doctor about my recent COVID and quad FLU vaccines. I phoned the clinic and asked a nurse if I could benefit from a better antibody response by delaying initiation of HU treatment for a week or two after receiving the vaccines. She told me that taking HU after receiving COVID and FLU shots is safe.
To be honest, I'm a procrastinator. Nevertheless, could a short postponement of chemo allow me to acquire more immunity? I'm thinking 7, 10 or 14 days. My CBC's have been messed up for years. The question is, does HU dampen response to vaccines?
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Scroop
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When on HU, you cannot take live vaccines due to impaired immune response that is a risk with HU. The flu and COVID vaccines are not live virus vaccines. You can take them while on HU. The greater concern would be starting too many things at the same time. I always try to space things out so i can tell what is what in terms of reactions.
If you have concerns about HU, then suggest you speak to your hematologist about them, You do have other treatment options. Besremi is also a first line treatment options for PV in the USA. Some of us respond much better to Besremi, which is a potentially disease modifying treatment.
thanks very much for your reply. I like your words about spacing out treatments in order to separate reactions. I didn’t know about Besrrmi. I’m so glad to hear that’s working for you after everything else. It sounds like the ablation surgery was a success too. Thanks for your good wishes and live well.
It is worth knowing more about Besremi. It is one of only two FDA approved medication for PV. While HU is in common use and in the NCCN guidelines for PV, its use for MPNs is off-label. Some respond well to HU, but not all do. I am one of the latter. I have done much better on Besremi. It is more effective and much easier to tolerate for me.
That is not to say you would respond the same. We are all different in our MPN profile and how we respond to the treatment options. I would suggest not making a treatment decision without considering all of your treatment options. That applies to vaccines, MPN treatment options, and all other medical decisions that we make.
I ve been on HU for 15 years ( I m 70 next year) and have had 6 Pfizer vaccines and the usual flu.
As Hunter says HU doesn’t suit everyone but neither does Besremi. If you do persuade your Haematologist to treat you with Besremi ( it’s £40,000 a year in the UK) I would be surprised - they usually want you to try the cheaper option first.
Make sure you have the shingles vaccine because it makes patients more susceptible to shingles. If you’ve had Zostavax ( gives you 50% immunity) please still have Shingrix which will give you 75-90% immunity as a one off.
Yes try and space out the treatment. I had another covid yesterday and will have flu vaccine at the end of the week followed by Shingrix in 2 weeks. Had a pneumonia vax in the summer.
Pleased to meet you, Louise, and thanks for your perspective and suggestions. From now on, I'll be looking over these discussions before my appointments, rather than after. If I'd read your post before, I'd have asked my hemo (spellchecker changes this to "hero") why he's prescribing HU instead of phlebotomy, as he calls it.
It’s been the drug of choice in the uk for donkeys years, not only for PV but leukaemia and sometimes cervical cancer.
It does what it says on the tin and suits many many thousands of people.
I ve buddied around 40 newly diagnosed patients, many of whom are frightened, and concerned about drug side effects. I was one of them 15 years ago!
Yes I ve had 2 tiny basil cell carcinomas which were easily treated. A small price to pay for a drug that for me works beautifully and I take every morning with a choccy biccy and a cup of tea!
I trust my super haematologist implicitly ( a professor and specialist of MPNs ) I m a patient at the best cancer hospital in the north - the Christie.
Bash on! You’ll be fine.
I had a covid jab two days ago, a flu jab today and a Shingrix jab scheduled in 10 days.
I obviously don't know anything specific about your healthcare system, but I do know that Besremi is also exorbitantly expensive here in the U.S.,
But I pay a maximum $30/month co-pay- in part due to my private health insurance, but mostly due to PharmEssentia's [the U.S. supplier/manufacturer] patient assistance program, and I easily qualified even though I am employed and not in poverty.
I also just wanted to ask if there are similar options available for patients in the UK.
Seems like if Besremi is a first-line drug there, there should be no discussion of taking something toxic like HU instead, regardless of cost- especially when it's an off-label use for it [at least it is here in the U.S. anyway].
I think you lovely folks in the US perhaps don’t realise that all our healthcare in the UK is free!
We do have an option of going privately if we wish but I doubt any private healthcare insurance company here would wear £40,000 a year for Besremi
As for hydroxicarbamide, you know, it suits thousands of patients in this country - and not just those of us with MPN’s. I ve been taking 1000 mgs a day for 15 years very successfully. I’m almost 70 have loads of energy and no side effects. Fingers crossed it lasts!
Personally I believe it’s quite wrong to post negative comments regarding HU on this site.
There are many newly diagnosed Mpn patients reading the posts here and it simply isn’t fair to put them off HU before they’ve tried the drug - especially if other options aren’t currently feasible for them.
Healthcare is very different in the US compared to the UK and it can be very confusing for new patients reading posts from other countries.
We re very lucky here to have the thousands of consultants that we have, working tirelessly to keep us all well and we don’t have to pay huge monthly amounts in health insurance.
Please don’t encourage or get the hopes up of patients for taking Besremi - when it might not either be the best thing for them or an option.
Personally I think there should be a health unlocked for each country as healthcare differs greatly between them.
I will allow that you and I may have different opinions,, but I am aware [and mildly envious] that you all have the lovely and civilized benefit of public health care.
My comments about finding assistance for Besremi [which is not known as Ruxolitinib anywhere as best I can tell- that's the generic name for Jakafi here], AKA Ropeginterferon, were prompted by YOUR comment about its cost in the UK.
The only things I have ever posted here about HU have been either my personal experiences with and side-effects from it, and medically-known facts about it: including that it is a cytotoxic mutagen, which promotes skin cancers, oral and skin ulcers, and does not significantly prevent progression or transformation of MPN's [and in fact some hematologists think that it may promote them].
If you think my posts are in some manner unfair, you have my permission to ignore them.
That said, I am a board-certified Physician Assistant, who recently celebrated my 30th anniversary of becoming one, and as a result of my training and experience, any information I provide is from very credible sources.
If you do read my posts, you would note that I often cite specific studies, articles, and/or citations, and always provide both quotes from them and link the sources in my posts.
Quickly then PA - I have two dogs and a husband waiting for supper 😁
I apologise - you are absolutely correct re Besremi being Ropeginterferon.
Let’s agree to disagree and try not to blind newly diagnosed patients with science, when all they’re looking for is light at the end of the tunnel! Perhaps better to leave the specialists to what they do best methinks.
Over 13 years I ve buddied around 40 of them so do know how they feel….
I second everything Hunter has said, as I am also on Besremi, I highly recommend at least asking about it.
I had to go to an MPN specialist in another city to get started on it because my original Heme/Onc MD didn't know much about it, and it was/is totally worth the effort,
My heme said that for me to be approved for a new treatment such as Besremi, I will first have to try out HU and not be able to tolerate it or obtain any benefit from it. I suppose my being 76 is a consideration in addition to cost. I'm glad Besremi has helped you and others here, but I won't be disappointed if they don't give it to me, because I do have a bias for the tried and true. Thanks for your comment!
I was likely in the same boat when I was diagnosed in 5/22, and I didn't really know it because I started having side-effects from HU before I even read about what the common side-effects consisted of.
While your age does automatically make you a high risk MPN patient by definition, it shouldn't keep you from having access to any given therapy- except the 'Just Aspirin and Phlebotomy' therapy group, which is apropos only for low-risk patients.
BTW, in case you didn't know, the age cut-off between the low and high risk groups is the age of 60 years old [young].
Finally, as to the "tried and true" thought process- interferons have been around for decades, and have proven efficacy in treating both MPN's and Leukemia every time they have been studied.
The only thing "new and improved" about Pegasys and Besremi are the attachment of 2 different formulations of polyethylene glycol [PG] to the usual recombinant native human interferon's basic structure.
These serve to slow the breakdown of the interferon so that it can be given less often which reduces side-effects.
PG is an otherwise inert chemical that is also found in Miralax, a common oral laxative.
I think sometimes people don't understand that these interferon medications [before being 'pegylated with PG] are produced in our bodies naturally to help our immune system to function.
I like to think of interferon treatment in people with MPN's as similar to giving insulin to diabetics or thyroid hormone to hypothyroid patients, i.e., supplementing a substance your body already makes in order to get/keep things functioning on an even keel.
I apologize if I'm being pedantic, it's just that I always want us all to understand all of the alternatives as best as possible before accepting the status quo.
Hi scroopIt's something that I have never done and would feel very worried about advising you to do this yes from the time I first started taking it was on a high dose but I am now down to 1 a week and my platelets are very well controlled but you should really talk to your consultant about it even just a phone consultation rather than making an appointment to see consultant or if you're gp is up to speed with mom's
Dear Scottishterrier, That's so encouraging to hear that you have cut the dose of a med and still have conditions in good order. Thanks for your observations. Regards, Scroop.
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