Interferon

[Mudmaker]

Hi my name is Denise I have been asked by Haematology consultant to consider starting on Interferon but I am worried about side effects. Particularly hair loss.

[Mirror368]

Hi Denise,

If you look at the list of possible side effects for Hydroxyurea, Pegasys, etc. they all have possible side effects. Assuming you mean Pegasys, there are many taking it on this website. I noticed that it seems those that have less issues start on low dose, 45 mcg and sometimes every two weeks, Search the subject and you will find a lot of discussion on this website.

May I ask reason why it is suggested? I have ET JAK2 and so far only on Hydroxyurea…my hematologist is suggesting I switch to Anagrelide because of headache issues.

Good luck with your decision. Eileen

[Mudmaker in reply to Mirror368]

Hi Eileen I was on hydroxyurea for 16 years and only in last year did side effects become worse. It was during covid lockdown and I wasn’t seen only phone calls. I have been on Anagrelide for very short time in the past had really bad headaches with it. Now on Jakavi but having bad side effects if they try to put dose up to control platelets. Interferon has been suggested because of this.

[MoNut in reply to Mudmaker]

That sounds like me, I’ve been on Hydroxy since 2006, taken off for a short time while taking Anagrelide, which have me terrible headaches. I’m on Interferon Alpha No and daily Hydroxy. This seems to be working but I am so tired and achy. Also I think the Interferon is causing problems with my eyes.

[hunter5582]

I have been in IFNs (Pegasys/Besremi) to treat PV for almost 2 years now. I have not experienced any alopecia. In fact, the venesection induced iron deficiency did cause some hair loss. Going on the IFNs improved this issue for me.

We all react differently to the medications used to treat MPNs. What others experience may not apply to you. For me, the IFNs have been easier to tolerate and more effective than hydroxyurea and venesections. The IFNs have significantly improved my quality of life. I hope that o will find it the same.

All the best

[Mudmaker in reply to hunter5582]

Thank you that has made me feel better.

[katiewalsh]

Hi. I can’t help about side effects but my understanding is interferon is the only treatment so far that’s been able to slow or even stop the progression on our MPNS. My said if I were younger he’d recommend it.

[Mudmaker in reply to katiewalsh]

Hi I think I’m the same age as you 72 is it not suitable for older patients.

[hunter5582 in reply to Mudmaker]

Age is not relevant to the tolerance of PEG vs HU. The difference is in two parts - risk and cost.

HU is contraindicated in anyone with a MPN of child bearing years due to it being teratogenic. It also can cause decreased fertility in men which is not always reversible. HU also carries long-term risks, including skin cancers and possible increased risk of leukemic progression. The latter is still debated, but is found in some warnings for HU. Older patients are less likely to live long enough for the long-term risks of HU to be a problem than younger patients. Older patients are less likely to experience the risk to a pregnancy and it is presumed that decreased sperm count is not a concern for older men.

The other issue is cost. HU = $25.00/month. PEG = $4,200/month. Prioritizing HU n the formulary saves a significant amount of money. There needs to be justification to spend such an large amount of additional money on a patient. It is easier for a doctor to justify in a younger patient. That does not mean that it cannot be prescribed to an older patient, just that it may be harder to get authorized in some health systems.

I am an older patient too. I have been on both HU and PEG (an Besremi). In my case, the interferons are much more effective and much easier to tolerate than HU. Others experience the opposite. It is not about age. It is about how your body reacts to each of these medications.

[Mudmaker in reply to hunter5582]

Thank you for information.

[monarch5000 in reply to Mudmaker]

Interferon may be especially suited for you because you were previously on hydroxyurea for 16 years and according to this article: "in a PV randomized control trial with long term followup, 24% of hydroxurea-treated patients developed acute myeloid leukemia by 20 years."

aml

[Mudmaker in reply to monarch5000]

Thabk you for information.

[Meatloaf9 in reply to monarch5000]

Hi, do you have a link to this article? As someone who is taking HU for PV I would like to read this article. I have never seen a transformation rate to aml that high. Thanks, Best to you.

[monarch5000 in reply to Meatloaf9]

"We report final analyses from the French Polycythemia Study Group (FPSG) study, which randomly assigned HU versus pipobroman as first-line therapy in 285 patients younger than age 65 years.

At 10, 15, and 20 years, cumulative incidence of acute myeloid leukemia/myelodysplastic syndrome (AML/MDS) was 6.6%, 16.5%, and 24% in the HU arm.

Cumulative myelofibrosis incidence at 10, 15, and 20 years according to main treatment received was 15%, 24%, and 32% with HU" pubmed.ncbi.nlm.nih.gov/219...

Now before you get too worried about HU, here is some good news: the recent Silver retrospective study comparing the long term outcome of 470 PV patients treated with INF, HU and phlebotomy-only, reported much lower rates of disease transformation to AML. In that study "the median age at diagnosis was 54 years (range 20–94) and the median follow-up was 10 years (range 0–45). The authors reported:

"Transformation to AML occurred in 18 patients (4%) at a rate of 0.34 per 100 patient-years, but the relative infrequency of this event was insufficient to identify significant group differences among rIFNα (n=2, 2%), HU (n=7, 4%), and PHL-O patients (n=6, 5%). The low incidence of treatment toxicity and of AML is possibly the consequence of the younger age of patients and/or reflects the close follow-up and monitoring of drug dose and duration expected at a comprehensive MPN center." ncbi.nlm.nih.gov/pmc/articl...

[Meatloaf9 in reply to monarch5000]

Thanks for the link and info, interesting.

[mhos61 in reply to monarch5000]

In relation to hydrea and Leukemic progression - 24% at 20 years!

Importantly, in the link you provided, I think you missed a significant detail from your write up. ‘Consideration should be given to the natural progression of PV’

Manouche also recently posted the following link.

healthunlocked.com/redirect...

‘risk factors for leukemic transformation included older age, abnormal karyotype, leukocytes ≥15 × 10(9)/l and treatment exposure to pipobroman or P32/chlorambucil, but NOT to HU or busulfan’

[hall2]

I’ve been on Peg for a few years now. I had mild effects to start which wore off and now I don’t have anything. I have ET and platelets are now in normal range.

[Mudmaker in reply to hall2]

That’s very reassuring. Thank you.

[Hmmm79]

I went in interferon last winter having been on anagrelide and couldn't tolerate it, I'd never felt so awful in my life. No particular hair loss though! But many people tolerate it absolutely fine and it has been seen there's a chance of it making the condition go into remission. Good luck x

[Mudmaker in reply to Hmmm79]

Good luck to you too.

[NCB1983]

I’ve been on interferon for a few years now. I have not experienced hair loss. Good luck with your journey

[Mudmaker in reply to NCB1983]

Thank you.

[Ralph0live]

I did not lose hair on Interferon but my hair did get weak. The benefit of taking it is that my platelets are at the moment back to normal range. I just go to the hair dressers more often to let them style it.

[Mudmaker in reply to Ralph0live]

Thank you.

[Blonde25]

I was diagnosed with PV and jack 2 mutation in December 2022 I have been on Pegasus interferon 45 micrograms ever two weeks since February 2023 . I have been ok with only a few side effects . Tiredness is the main thing I struggle with but up to now I haven't noticed hair loss and I'm hoping that it will start to improve my blood counts . I'm female turning 65 in may this year .

Good luck

[Mudmaker in reply to Blonde25]

Good luck to you too.

[Lucylottie]

I have been on Pegasys for 6 months since being diagnosed with JAK2 positive PV at age 59. My MPN specialist started me on a fortnightly dose of 45mcg then going to 45 weekly. After a scare with rising liver enzymes I dropped back to 45mcg fortnightly. Luckily my liver responded and returned to normal so I was then put on 67.5mcg a week. My platelet count has come down to within the normal range and with an average haematocrit of 0.41 I have not needed venesection for 4 months! I didn’t experience too many side effects on the lower dose but must admit I now struggle with a couple of days of headaches and brain fog after the higher dose. I notice more loose hair in my hairbrush now but nothing noticeable to other people. Despite the side effects of Pegasys I wouldn’t want to come off it. I accept I will have a couple of miserable days, dose myself up and take things as easy as I can on those days. The great blood results I’ve achieved after just 6 months on interferon make it all worthwhile!

[Mudmaker in reply to Lucylottie]

Thank you that’s very reassuring. Hope things go well for you

[Hopetohelp]

been on Pegasys for 2 years and no hair loss touch wood. You can always try it and change if it doesn’t suit you. Good luck

[Mudmaker in reply to Hopetohelp]

Thank you.

[ainslie]

not everyone gets hairloss , you can always try it , if you do lose hair and stop Peg it will grow back, but you probably won’t lose it

[Mudmaker in reply to ainslie]

Thank you.

[Zeppelin11]

Hi there! I started 45mcg of Pegasys and felt ok however we needed to increase the dose to get my numbers down so I went up to 90mcg once a week. Unfortunately it was not a good fit for me. I experienced major fatigue, mood swings/loss of motivation and ache (I've had clear skin my whole life). As soon as this started to happen my Dr took me off and put me back on Hydrea. My energy is back and I "feel" like myself again. Many people have had success with Interferon so I would suggest keeping a log to track your progress. I think with any medication we are taking a chance and you can always stop if its not a good fit. Wishing you all the best!

[Mudmaker]

The same to you.

[Wyebird]

hi I love Peg but I have noticed my forehead has receded a lot. I’m trying to get a prescription for minoxidil tablets. I already use the foam but want to switch. Go on YouTube and watch the ‘hair loss show’ Two Australian doctors do it. It’s really interesting.

[Exeter21]

interferon has been excellent for me . But needs doseage getting right . I started on 45 weekly & too strong giving headaches . Reduced to monthly & no side effects whatsoever now. I have ET . Hydroxy I was awful on . So well worth trying Interferon & ensure you consult MPN Dr for doseage advice as not all Drs understand it. They wanted me to start on 90 however MPN advice is low & slow 👍. Good luck .

[Mudmaker in reply to Exeter21]

Good luck to you too.

[eladhil]

hey. I am 50 years old. Using H.U & peginterferon. No side effect at all. It is individually but it doesn’t mean that you will have s as my side effect.

[Otterfield]

I was on interferon for a year. I didn't have hair loss but I had joint pain, which got quite severe in my knees. I was on Tramadol for this which, combined with Paracetamol, ALMOST kept the pain at bay. I also had fluid retention in my feet and legs, extreme enough to be painful. I don't know whether interferon caused this, but it is one of the rarer named side effects. However, interferon did reduce my white cells which had crept up. I also had severe itching, but this might have been due to disease progression as I was diagnosed with MF in 2020.

[Peak-Moves]

hello Mudmaker , I’ve been on Pegasys for almost 4 yrs now. Started 45 weekly, then went to 90 fortnightly, three weekly, now 90 four weekly.

I did have hair loss at the start, but not that anyone else would have known. As someone else said - more hair in the brush and coming out when washing it. I have a lot of thick hair so it felt noticeable to me, but not to others. The condition did deteriorate a bit and I worked with my hairdresser to improve its condition and started taking collagen powder, and got good advice on nutrition and supplements. Now I’d say it’s back to normal in all ways.

The side effects I do get are low mood and tiredness for the few days after taking the Pegasys. But I prefer to get that once a month, have the benefits of interferon, than switch to something that just has other side effects, or take Pegasys more frequently at lower dose - which just meant milder side effects more frequently for me. I’ve worked out ways to manage the rubbish few days, and I have platelets around 250, which is well within normal range, and the rest of the time I tend to forget I’ve got ET!

(I’m 49, female, also on Apixaban)

[Mudmaker in reply to Peak-Moves]

Thank you very encouraging.

[Mudmaker]

Thank you for the advice. Good luck to you.