Peg Interferon or HU

[Timtams]

Hi everyone! Does anyone know if Interferon or HU is safer in the long run? I've done some readings and it seems like HU is more toxic and can lead to some cancers. While interferon is safe for pregnancy, i am assuming it is the safest meds of all. I have been on HU for 3 months and it gave me thick black line on my thumb nail. I've been on interferon for close to 2 years and been taking it pretty well, except that i've a tendency to develop lower limb edema out of the blue when i sit too long. Not sure if this is a side effect. Would love to hear your experiences.

[charl17]

I switched from HU to Peg due to toxicity. My opinion is that both therapies have risks but they are qualitatively different. HU is cheap and simpler to manage. Pegasys has greater potential to alter the course of the disease. I would advise a friend to choose Peg if they have a choice and if they take HU to be very alert to signs of toxicity. Not because HU is more toxic but because these signs will be less evident to the physician.

[Timtams in reply to charl17]

Thank you, thats really informative. How long have u been on HU and Peg? Did u experience any bad side effects so far?

[charl17 in reply to Timtams]

Four years on HU followed by 4 years on Pegasys. I had skin cancers, slow healing wounds, pain on swallowing for which I was hospitalized on suspicion of heart problems and an intractable ankle wound that required 4 debridements and 10 months to heal. I switched to Pegasys. The main issues were fatigue and itching. I now inject 45 mcg every 3 weeks and I hope to go to 4 weeks starting in March. This is a very low dose. I take 1000 mg of tylenol at bedtime for 3 nights after injection.

Do not generalize from my experience. Many people have a good experience with HU.

[PhysAssist in reply to Timtams]

Except that HU was actually designed to be broadly chemo-toxic- that is the class of medications it is in and it is known to:

1) cause secondary cancers,.

2) To affect both healthy and mutated cells equally.

3) not to prevent disease progression and transformation [to MF and/or [the less likely] AML [acute myelogenous leukemia].

"HYDREA is a cytotoxic drug. Follow applicable special handling and disposal procedures [see References (15)].

from: accessdata.fda.gov/drugsatf...

Best,

PA

[pepper-]

I tried Besremi branded interferon for my PV as the first drug used. The contraindications are very long, so be sure to read and understand them. Given that, I took a chance with interferon and ended up in the hospital twice, each one for 7 days about 2 weeks apart, to undergo infusion treatment for both kidney failure and extreme edema due to kidney dysfunction. I took low doses of Besremi for 6 injections before noticing edema. Thereafter I stopped the drug but for the next two months my kidneys continued to fail and the edema became extreme....30% of my normal body weight ended up as fluid in my inter tissue space. I blew up like a water balloon from feet to neck and as such was physically incapacitated. My nephrologist started me on a couple of medications after the hospital stays. It's now been 6 months since last Besremi injection and although my kidneys have normalized per various blood tests I still have a mild case of edema below the knees, which looks to be a permanent consequence but one I can live with. This type of reaction is noted in about 15+% of patients, which of course the makers will never mention any statistics in their drug promotions. So, the word is caution with interferons. We all can react differently. Many tolerate in OK, I was not one of them.

[EPguy in reply to pepper-]

Good to hear from you, I have thought of you. Glad to know your max worst troubles have improved, but sorry to hear about the continued trouble. Are you on any MPN therapy now?

[EPguy]

Both have real risks. HU is esp associated with non-melanoma skin cancers.

IFN may be fewer such events, but they can be serious, Pepper here suffered badly as you can see. In this document, page1, are some of the risks:

accessdata.fda.gov/drugsatf...

"Depression and Suicide, Hepatotoxicity, Renal Toxicity" (what Pepper experienced)

The worst outcomes are rare and for most are found before they get too far by frequent blood tests that are required when starting IFN . Some members have needed to quit from the metal health problems.

-With all that I switched from HU to Besremi and am very pleased with the result so far. My mutation is actually reduced since I started. But I do have plenty of discomforts with both HU and IFN.