Debating about starting Interferon

[Nrl303]

I have had PV for about 4 months now & have been pretty much asymptotic aside from numbness in my left foot and left hand (which is pretty scary & uncomfortable) . I have been having some pretty bad anxiety since being diagnosed because I’m so young (26) & am hoping that won’t interfere with me starting it. I’m very interested about all the research about starting it sooner & seeing all the benefits because progression really scares me & I know interferon can help with that. However, my main question is does anybody with PV not itch whatsoever? I saw that interferon can make people itch & don’t want to start itching like crazy. Thanks.

[monarch5000]

Itching, especially for 15-30 minutes after bathing, it common in PV patients. Besremi & Pegasys interferon can get rid of it, but slowly over a period of many months and initially, interferon may make itching worse before it gets better.

Interferon is an immune system booster - helps the body beat back the growing malignancy. So the earlier interferon is started, the more likely that low doses that have minimal or moderate side effects will be effective in the long run of normalizing blood counts, easing symptoms like numbness, burning feet, red cheeks and eyes, dizziness, etc., and slowing to stopping disease progression towards post PV myelofibrosis. In young persons, like yourself, the risk of progression is higher as Dr. Abu-Zeniah explains: youtu.be/s9euOVQGhks(Not working as expected?)

[Nrl303 in reply to monarch5000]

Thank you for the post. Since I am young, I am interested in the minimal residual disease that can be achieved if starting interferon earlier. However, I’m not sure you understood what I was asking. I have never experienced any itching with PV & am worried if I start interferon will it make me incredibly itchy as a side effect?

[monarch5000 in reply to Nrl303]

Early intervention with interferon = only low doses likely will be required = less chance of side effects such as itching. And even if you did experience itching you could stop the interferon and itching would vanish. Achieving Minimal Residual Disease usually means the dose of interferon can be lowered or the frequency of dosing stretched way out so that the chances of experiencing side effects are further reduced.

[Anag in reply to Nrl303]

I started Besremi last October. I have Essential thrombocythemia. As I increased my dosage to 150, I got a bit of redness and itching on my throat and inner elbow. I took some antihistamine to get through the night then 2 more days. It was then gone, returned in lighter form after my next shot then stopped altogether.

I’m 58 and have lived a life full of adventure, health-wise and in general. My advice is, worrying won’t get you better, but will make you worse. What I understand with interferon is, think of the options and make a well informed decision and try it. At your age, you’ll probably only need a low dose, but don’t quote me on that! Just try it and see. 🙂

[EPguy]

I never had itch with PV. But when I started Besremi I got a minor itch after shower. It was no big deal in my case, and the IFN worked great for the time I was on it.

Are your blood counts ok? Do you have your Jak2 mutation burden?

[Nrl303 in reply to EPguy]

Hi EpGuy, not sure about my mutation burden.

RBC: 4.95

HGB: 15.8

HCT: 43.8

Platelets: 360

[EPguy in reply to Nrl303]

Good numbers, so blood counts probably aren't the source. I wish I could have stayed on Bes, but you can see my vaccine/IFN disaster in posts.

With numbness, it's most likely from the PV, but if it's bad enough to be scary it might be good to see a neurologist and/or rheum to be sure it's not from something else.

[Nrl303 in reply to EPguy]

it really is a weird sensation. I can really feel it if I have socks and shoes on and am sitting to the point where it’s super uncomfortable. It’s almost like neuropathy. Can PV on its own cause neuropathy?

[EPguy in reply to Nrl303]

PV for sure can cause neuropathy:

" ...numbness and tingling in the hands and feet were common symptoms in people with the three most common kinds of MPNs."

mympnteam.com/resources/num...

and in the image here from Besremi info. Nothing implicating the IFN, rather the PV.

--

So your condition is quite likely from the PV. I had none of that till the vaccine incident, my neuropathy is from Sjogren's, an autoimmune problem.

Besremi info

[Nrl303 in reply to EPguy]

And I don’t have any of those other symptoms. I was just curious cause I’ve searched neuropathy on here & no one else seems to be having this problem & seem to think it’s a side effect of a medication, like my feet don’t even sweat anymore I feel like. Either way, I’m hoping with some sort of interferon treatment it will go away because it’s definitely interfering with going on about my life.

[EPguy in reply to Nrl303]

I found the same in searching here, surprising since it's so clearly listed as a PV effect. You do seem to have a handful of neuro symptoms. It may still make sense to be checked by a neurologist, at least for a baseline before starting IFN.

[Orangeboykitty]

I've had PV for 10 years and have never itched. I was on Pegasys for more than a year and now on Besremi for a year and a half. No itching on the interferons.

[Nrl303 in reply to Orangeboykitty]

thank you! I’m hoping besremi can relieve some neuropathy in my feet I’m feeling from PV

[Lilliegarden]

I have been on Inteferon for 6 weeks now & the only itching I’ve had that’s completely new is a raised rash on the palms of my hands that looks like nettle rash.

It started 3 days after my 4th jab & lasted for 2 days & again after my 5th jab & lasted for a day. Now gone, no rash or itching.

While no one wants the itches or any side effect, it’s worth weighing up the benefit of the drug on your blood levels against some annoying side effects.

You can also switch drugs if Inteferon doesn’t work for you

[GardNerd]

I’ve been finding that the itching has gotten better (slowly) since being on an interferon. I used to have itching after showers pretty intensely for about 20-30 minutes. And I’d take that any day over disease progression. I’ve fortunately never had itching throughout the day, which I imagine could be maddening.

[ainslie]

I think it’s about 62% that itch with PV, interferon can increase itch for some but for others it can reduce or stop itching, I hope that helps

[Meatloaf9]

Hi, I am 73, PV, on HU, Dx in 2017, no itching. Best to you.

[Steve_Essex]

I recently spoke to my clinical nurse specialist at Guys about wanting to start Pegasys even though I’m asymptomatic, considered low risk, and leading a healthy lifestyle… in fact it’s for these very reasons that I’d like to start as soon as possible… before the counts start to increase and I start to feel other related symptoms..

if there’s s chance, irrespective of whether it’s considered small to achieve a deeper molecular response and reduce my VAF, and potentially reduce chance of progression… given my age (41) and having a young family and successful career which I want to continue as long as possible, then I’m going to push for it!

What I do know is taking aspirin daily and 3 monthly venesections won’t offer that chance…

I have my clinic referral to discuss next month.. will let you know how it goes!!

[STK52 in reply to Steve_Essex]

hi Steve, I would love to know how you get on. I’m in similar position as you and we are both in the UK. I didn’t think it was an option to move to interferon early. I thought it was so as little for as long as possible?

[Steve_Essex in reply to STK52]

it might not be.. but going to discuss in detail and see where we land… will keep you posted!

[Nrl303 in reply to Steve_Essex]

Thanks Steve & hope all is well with you. My only concern with interferon & being young is, is it really likely to be able to withstand the use of the drug for 20 or 30 years?

[Steve_Essex in reply to Nrl303]

kind of hoping by then there’ll be alternatives out there in 20/30yrs time! I’m approaching this with a view to wanting to access the best possible therapies available at this point in time.. when something better comes along I’ll be trying to push for that.. anything I do / request will be carefully considered and discussed at length with my mpn team and also my family to understand and weigh up all angles..

[hunter5582]

While I did get some mild itching and rashes due to the IFNs, it has been well controlled with daily Claritin and tipocal Eucrisa occasionally. The side effect it absolute worth the benefits of the IFNs. The chronic iron deficiency from the venesections made me feel worse than the PV and included reactive thrombocytosis PLT + 200K. AFter 2 years on the IFNs, I feel better now than I did 10 years ago. In addition, my allele burden has dropped from 38% to 9% on low doses of Pegasys and Besremi. Perhaps I will achieve a molecular remission. Only time will tell.

Ultimately, it is up t you to decide whether IFNs are the best choice for your situation. You will have to weigh whether the benefits of the outweigh the risks in your case. Hopefully, you are already consulting with a MPN Specialist who is up-to-date on the use of interferons and the current data on starting IFNs with low-risk PV patients.

All the best.

[MAP44]

Hi. Sorry you have PV but congratulations on thinking about trying Pegasys.

I am PV Jak2+, 54 yr old F

I have been on Peg 13 months. I had the itch long before diagnosis so the Pegasys did not start it and most likely did not make it worse. The medicine can cause major or minor reactions in some people.

Any issues or reactions to Pegasys only lasted a few months and disappeared after that. My experience was insomnia, headaches and exhaustion. They both decreased as my blood reduced. My “ itch” not an actuate description it has subsided greatly in the last year also.

Good luck and keep us posted to how it goes for you. 🍻

[Anag]

fondazionefrom.it/fondazion...

[sbs_patient]

I was diagnosed with PV in 2015, and I have had abnormal sensation (the medical term is paresthesia) in both of my feet for the past five years or so. It's not quite numbness, since my feet can still feel things, but it is a bit odd. A MPN specialist told me that this might be caused by micro-clots in capillaries.

[Nrl303 in reply to sbs_patient]

have you had anything in your hands?

[sbs_patient]

I was taking hydroxyurea (HU) which gave rise to ulcers on the backs of my hands. When I stopped HU, the ulcers went away with the help of a steroid cream.